Medicine and Social Justice: Essays on the Distribution of Health Care [2 ed.] 9780199744206, 0199744203

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MEDICINE AND SOCIAL JUSTICE

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SECOND EDITION

MEDICINE AND SOCIAL JUSTICE Essays on the Distribution of Health Care EDITED BY

RO S A M O N D R H O D E S M A R G A R E T P. B AT T I N A N I TA S I LV E R S

1

1 Oxford University Press is a department of the University of Oxford. It furthers the University’s objective of excellence in research, scholarship, and education by publishing worldwide. Oxford New York Auckland Cape Town Dar es Salaam Hong Kong Karachi Kuala Lumpur Madrid Melbourne Mexico City Nairobi New Delhi Shanghai Taipei Toronto With offices in Argentina Austria Brazil Chile Czech Republic France Greece Guatemala Hungary Italy Japan Poland Portugal Singapore South Korea Switzerland Thailand Turkey Ukraine Vietnam

Oxford is a registered trade mark of Oxford University Press in the UK and certain other countries. Published in the United States of America by Oxford University Press 198 Madison Avenue, New York, NY 10016 © Oxford University Press 2012 All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, without the prior permission in writing of Oxford University Press, or as expressly permitted by law, by license, or under terms agreed with the appropriate reproduction rights organization. Inquiries concerning reproduction outside the scope of the above should be sent to the Rights Department, Oxford University Press, at the address above. You must not circulate this work in any other form and you must impose this same condition on any acquirer. ________________________________________________________________________________________ Library of Congress Cataloging-in-Publication Data Medicine and social justice : essays on the distribution of health care/edited by Rosamond Rhodes, Margaret P. Battin, Anita Silvers.—2nd ed. p.; cm. Includes bibliographical references and index. ISBN 978–0-19–974420-6 (hardcover) 1. Social medicine. 2. Right to health. 3. Social justice. 4. Medical ethics. 5. Medical economics—Moral and ethical aspects. I. Rhodes, Rosamond. II. Battin, M. Pabst. III. Silvers, Anita. [DNLM: 1. Health Services Accessibility. 2. Bioethical Issues. 3. Economics, Medical. 4. Social Justice. W 76] RA418.M5145 2012 362.1'042—dc23 2011027195 ________________________________________________________________________________________

9 8 7 6 5 4 3 2 1 Printed in the United States of America on acid-free paper

CONTENTS

Contributors

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Introduction

1

PART I:

Theoretical Foundations

1. Justice, Health, and Health Care norman daniels

17

2. Justice, Liberty, and the Choice of Health-System Structure paul t. menzel

35

3. A Utilitarian Approach to Justice in Health Care mark s. stein

47

4. Justice Pluralism: Resource Allocation in Medicine and Public Health rosamond rhodes 5. Health Risk and Health Security jonathan wolff 6. Aggregation and the Moral Relevance of Context in Health Care Decision-Making david wasserman

59

71

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7. Why There Is No Right to Health Care stefan bernard baumrin

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8. Equality, Democracy, and the Human Right to Health Care kristen hessler and allen buchanan

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PART II:

Access and Rationing

9. Unequal by Design: Health Care, Distributive Justice, and the American Political Process bruce c. vladeck and eliot fishman

107

10. Justice of and Within Health Care Finance stephen r. latham

121

11. Setting Priorities for a Basic Minimum of Accessible Health Care paul t. menzel

131

12. Why Justice Requires Rationing in Health Care gopal sreenivasan

143

13. Priority to the Worse Off in Health Care Resource Prioritization dan w. brock

155

14. Whether to Discontinue Nonfutile Use of a Scarce Resource f.m. kamm

165

15. Responsibility for Health Status lance k. stell 16. Health Care Justice and Political Agency 2011 patricia s. mann

179

201

17. Allocating Health Care Resources in the UK: Putting Principles into Practice 219 mark sheehan and tony hope 18. Global Health, Human Rights, and Distributive Justice john w. lango

231

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Contents

19. Equal Access to Health Care Under the UN Disability Rights Convention 245 michael ashley stein, janet e. lord, and dorothy weiss tolchin PART III:

Populations

20. Justice, Health, and the Price of Poverty 255 patricia smith 21. Racial Groups, Distrust, and the Distribution of Health Care howard mcgary

265

22. Gender Justice in the Health Care System: An Elusive Goal rosemarie tong

279

23. Justice for Gay and Lesbian People in Health Care timothy f. murphy

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24. Health Care Justice for the Chronically Ill and Disabled: A Deficiency in Justice Theory and How to Cure It anita silvers 25. Getting from Here to There: Claiming Justice for the Severely Cognitively Disabled eva feder kittay 26. Cognitive Surrogacy, Assisted Participation, and Moral Status david wasserman and jeff mcmahan 27. Health Care Reform and Children’s Right to Health Care: A Modest Proposal loretta m. kopelman

299

313

325

30. Health Care for Soldiers fritz allhoff 31. Social Justice and Correctional Health Services kenneth kipnis

Dilemmas and Priorities

32. Are Pre-existing Condition Exclusion Clauses Just? Lessons from Causal and Ethical Considerations Regarding Genetic Testing robert t. pennock 33. Oral and Mental Health Services david ozar and james sabin

335

355

363

373

387

401

34. Limits of Science and Boundaries of Access: Alternative Health Care e. haavi morreim

413

35. Just Expectations: Family Caregivers, Practical Identities, and Social Justice in the Provision of Health Care james lindemann nelson

433

36. Justice in Research on Human Subjects david buchanan and franklin g. miller

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37. Just Genetics: The Ethical Challenges of Personalized Medicine leonard m. fleck

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38. Expanded Newborn Screening: Contemporary Challenges to the Parens Patriae Doctrine and the Use of Public Resources jeffrey r. botkin, rebecca a. anderson, and erin rothwell

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39. Justice, Profound Neurological Injury, and Brain Death michael nair-collins and james m. hitt

28. Premature and Compromised Neonates 347 ian r. holzman 29. Age Rationing Under Conditions of Injustice leslie pickering francis

PART IV:

40. Justice in Transplant Organ Allocation rosamond rhodes and thomas d. schiano 41. Justice in Planning for Pandemics and Disasters leslie pickering francis and margaret p. battin

485

505

523

42. Justice Has (Almost) Nothing to Do With It: Medical Malpractice and Tort Reform 531 david a. hyman and charles silver Index

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C O N T R I BU TO R S

Fritz Allhoff, PhD, is an Associate Professor in the Department of Philosophy at Western Michigan University and a Senior Research Fellow in the Centre for Applied Philosophy and Public Ethics (Australia). He has held visiting posts at the American Medical Association, University of Michigan, University of Oxford, and University of Pittsburgh. His primary fields of research are applied ethics, ethical theory, and philosophy of biology/science. He has published work in the American Journal of Bioethics, Cambridge Quarterly of Healthcare Ethics, International Journal of Applied Philosophy, and Kennedy Institute of Ethics Journal, among other places. His latest books include What Is Nanotechnology and Why Does It Matter? From Science to Ethics (WileyBlackwell, 2010; with Patrick Lin and Daniel Moore) and Terrorism, Ticking Time-Bombs, and Torture. Rebecca A. Anderson, RN, PhD, is the Assistant Director of the GeneSIS Center at the University of Utah. She is an Associate of the Division of Medical Ethics and Humanities. Her research is focused on the ethical, legal, and social implications of genetic technology with a particular emphasis on newborn screening and biobanking. She has coauthored several articles on newborn screening and has a forthcoming invited chapter in The Annual Review of Nursing Research. She participated in drafting the International Society of Nurses in Genetics position statement revision on Informed Decision-Making and Consent. Ms. Anderson has served as Chair of the Mountain States Region Genetics Collaborative, and she is a current member of the Newborn Screening Committee. She is currently completing her doctorate at the University of Utah’s College of Nursing.

Margaret P. Battin, MFA, PhD, professor of philosophy and medical ethics at the University of Utah, has authored, co-authored, edited, or co-edited some twenty books, including works on philosophical issues in suicide, puzzle cases in aesthetics, ethical issues in organized religion, and various topics in bioethics. She has published two collections of essays on end-of-life issues, The Least Worst Death and Ending Life, and has been the lead for two multi-authored projects, Drugs and Justice and The Patient as Victim and Vector: Ethics and Infectious Disease. In 1997, she won the University of Utah’s Distinguished Research award, and in 2000, she received the Rosenblatt Prize, the University’s most prestigious award. Her current projects include a comprehensive historical sourcebook on ethical issues in suicide and a book on large-scale reproductive problems, including population growth and decline, teen pregnancy, abortion, male roles in contraception, and more. Stefan Bernard Baumrin, PhD (Johns Hopkins), JD (Columbia), is Professor of Philosophy at the Graduate Center and Lehman College, City University of New York, and Professor of Medical Education at Mount Sinai School of Medicine. In the 1970s he was involved in the creation and development of clinical medical ethics programs in New York City at NYU, Montefiore, Bellevue, and Mount Sinai. He has served as Chair of the American Philosophical Association Committees on Philosophy of Law and Philosophy of Medicine. Baumrin was founder of the New York Bar Association’s Law School Ethics Awards, a founding editor of Metaphilosophy, and for many years the U.S. Advisory Editor of The Journal of Applied Philosophy. He now works primarily on history of

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Contributors

ethical theory, philosophy of law, medical ethics, and applied philosophy. A recent series of his papers appear in the Philosophical Forum: “The Shoes of the Other,” “Becoming Moral,” and “Antitheism and Morality.” Jeffrey R. Botkin, MD, MPH, is a Professor of Pediatrics at the University of Utah and an Adjunct Professor of Human Genetics. He is Chief of the Division of Medical Ethics and Humanities and serves as the Associate Vice President for Research Integrity. His research is focused on the ethical, legal, and social implications of genetic technology with a particular emphasis on research ethics, genetic testing for cancer susceptibility, biobanking, newborn screening, and prenatal diagnosis. Dr. Botkin formerly was Chair of the Committee on Bioethics for the American Academy of Pediatrics and a former member of the Secretary’s Advisory Committee on Human Research Protections at DHHS. Dr. Botkin is currently a member of the Secretary’s Advisory Committee on Heritable Diseases in Newborns and Children. He chairs the NIH’s Embryonic Stem Cell Working Group and is an elected fellow of the Hastings Center. Dan W. Brock, PhD, is Frances Glessner Lee Professor of Medical Ethics, and Director of the Division of Medical Ethics at the Harvard Medical School. He received his BA in economics from Cornell University and his PhD in philosophy from Columbia University. He served as Staff Philosopher on the President’s Commission for the Study of Ethical Problems in Medicine in 1981–82, was a member of the Ethics Working Group of the Clinton Task Force on National Health Reform in 1993, was President of the American Association of Bioethics in 1995–96, and is an elected member of the Institute of Medicine. He is the author of over 170 published papers in bioethics and in moral and political philosophy, and of Deciding For Others: The Ethics of Surrogate Decision Making (1989, with Allen E. Buchanan), Life and Death: Philosophical Essays in Biomedical Ethics (1993), and From Chance to Choice: Genetics and Justice (2000, with Allen Buchanan, Norman Daniels, and Daniel Wikler). Allen Buchanan, PhD, is James B. Duke Professor of Philosophy and Professor of Law at Duke University, where he is also a member of the Institute for Genome Sciences and Policy. Buchanan is also a Distinguished Research Associate at the Oxford

Uehiro Centre for Practical Ethics, Oxford, UK, and a Distinguished Visiting Professor at the Center for the Philosophy of Freedom, Department of Philosophy, University of Arizona (Tucson). His work is mainly in political philosophy, philosophy of international law, and bioethics. He is the author of over one hundred and forty articles and eleven books. His most recent books are Justice and Healthcare: Selected Essays (OUP 2011), Human Rights, Legitimacy, and the Use of Force (OUP 2011), Beyond Humanity? The Ethics of Biomedical Enhancement (OUP 2011), and Better than Human: The Promise and Perils of Enhancing Ourselves (OUP 2011). David Buchanan, DrPH, is a Full Professor of Public Health, Director of the Division of Community Health Studies, and Director of the Institute for Global Health at the University of Massachusetts at Amherst. His research interests lie in analyzing the ethical foundations of public health and approaches to improving population health and quality of life. He has focused on the role of public health policies and programs in promoting justice and expanding human autonomy as prerequisite to improving population health. Dr. Buchanan is the author of more than eighty articles on empirical and ethical issues in public health and 3 books, including An Ethic for Health Promotion: Rethinking the Sources of Human Well Being and Research with High Risk Population: Balancing Science, Ethics & Law. He earned his master’s degree and doctorate in public health at the University of California, Berkeley. Norman Daniels, PhD, is Mary B Saltonstall Professor and Professor of Ethics and Population Health in the Department of Global Health and Population at Harvard School of Public Health. Formerly he chaired the Philosophy Department at Tufts University, where he taught from 1969– 2002. His most recent books include Just Health: Meeting Health Needs Fairly (Cambridge, 2008); Setting Limits Fairly: Learning to Share Resources for Health, 2nd edition (Oxford, 2008); From Chance to Choice: Genetics and Justice (2000); and Is Inequality Bad for Our Health? (2000). His research focuses on justice and health policy, including priority setting in health systems, fairness and health systems reform, health inequalities, and intergenerational justice. He directs the Ethics Concentration of the Health Policy PhD, and teaches courses on ethics and health inequalities and justice and resource allocation.

Contributors Recently he won the Everett Mendelsohn Award for mentoring graduate students. Eliot Fishman, PhD (Yale), is currently a principal in the New York office of Health Management Associates, a consulting firm specializing in Medicaid and other health policy issues for low-income people. He was previously Policy Director in the New Jersey Department of Health and Vice President at Metropolitan Jewish Health System. He is the author of Running in Place: How the Medicaid Model Falls Short, and What to Do About It (Century/Brookings, 2002), among other publications related to reform of health care payment and delivery. Leonard M. Fleck, PhD, is Professor of Philosophy and Medical Ethics in the Philosophy Department and The Center for Ethics (College of Human Medicine), Michigan State University. He has published over ninety articles, either as book chapters or in various professional journals of philosophy, medical ethics, law or policy. He wrote Just Caring: Health Care Rationing and Democratic Deliberation (Oxford University Press, 2009). He is co-editor of Towards Fair Rationing at the Bedside (Oxford University Press, forthcoming), and he is working on a monograph, Medicine, Genetics, and Public Policy: Justice, Liberty, and Responsibility. In 1993 he served on The White House Task Force on Health Care Reform. He was co-PI of the six-year NIH Genome project “Genome Technology and Reproduction: Values and Public Policy” (1995–2002). In 2003 he received a University Distinguished Faculty Award from Michigan State University and a Distinguished Faculty Award from the College of Human Medicine. Leslie Pickering Francis, PhD, JD, holds joint appointments as distinguished professor of philosophy and law and Alfred C. Emery professor of law at the University of Utah. She teaches and writes extensively in the areas of health law, bioethics, and disability. Professor Francis currently serves as a member of the National Committee on Vital and Health Statistics, where she co-chairs the subcommittee on Privacy, Confidentiality, and Security; and as a vice president of the Executive Committee of the International Association for Philosophy of Law and Social Philosophy (IVR). Kristen Hessler, PhD, is Assistant Professor of Philosophy at the State University of New York at

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Albany. She received her PhD from the University of Arizona. Her research focuses on political philosophy (especially issues in global justice, human rights, and international law) and bioethics (including public health and the environment). She has published articles on human rights law, international justice, the human rights approach to public health ethics, and ethical issues concerning biotechnology in agriculture. James M. Hitt, PhD, is Assistant Professor in the Department of Philosophy at Saginaw Valley State University. He has been a Medical Ethics Fellow at Mount Sinai School of Medicine and a bioethics consultant for Maimonides Medical Center. He is the coordinator of the William and Julia Edwards Lecture in Philosophy and Religion, serves on the editorial board of the International Journal of Technoethics, and serves on the ethics committee for Covenant Hospital. His two main areas of research in the philosophy of medicine have been on nosology and mental ontology among disorders of consciousness. Ian R. Holzman, MD, is Professor of Pediatrics, Obstetrics, Gynecology and Reproductive Sciences at The Mount Sinai School of Medicine. He serves as the Vice Chair for Clinical Affairs in the Department of Pediatrics and the Chief of the Division of Newborn Medicine. He has served as the Chair of The Mount Sinai Hospital’s ethics committee for nearly a decade and has been a member of the American Academy of Pediatrics Committee on Bioethics, where he co-authored a number of Academy statements and authored the statement on Managing Boundaries. Tony Hope, MD, PhD, is Professor of Medical Ethics at the University of Oxford, a Fellow of St Cross College, and an Honorary Consultant Psychiatrist. His two main areas of research have been the behavioral changes in people with dementia, and medical ethics with a particular interest in the combination of ethical analysis and the collection of empirical data. He has done work particularly in the field of mental health ethics and in resource allocation. He founded the Ethox Centre at the University of Oxford, a multidisciplinary center carrying out research, teaching, and support to clinicians in medical ethics. In addition to research papers he has co-authored a number of books, including a general textbook of medicine, a self-help psychology book, and several books in medical ethics and law.

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Contributors

David A. Hyman is the Richard W. and Marie L. Corman Professor of Law and Professor of Medicine at the University of Illinois, where he directs the Epstein Program in Health Law and Policy. He focuses his research and writing on the regulation and financing of health care. While serving as Special Counsel to the Federal Trade Commission, Professor Hyman was principal author and project leader for the first joint report ever issued by the Federal Trade Commission and Department of Justice, Improving Health Care: A Dose of Competition (2004). He is also the author of Medicare Meets Mephistopheles, which was selected by the U.S. Chamber of Commerce/ National Chamber Foundation as one of the top ten books of 2007. He has published widely in student-edited law reviews and peer-reviewed medical, health policy, and law journals. Kenneth Kipnis, PhD, is Professor of Philosophy at the University of Hawaii at Manoa, where he has taught ethics in health care and philosophy of law for over 30 years. He has done extensive work as a hospital ethics consultant and as an expert witness in ethics-related court cases. He has been Executive Director of the American Section of the International Association for Philosophy of Law and Social Philosophy (AMINTAPHIL) and has chaired the Committee on Philosophy and Medicine of the American Philosophical Association. He has written on legal ethics, newborn intensive care, military medicine, research on the vulnerable, pediatric ethics, and medical ethics following disasters and catastrophes. He has worked with correctional health care professionals, and the present article is the most recent of several he has published on that topic. Eva Feder Kittay, PhD, is Distinguished Professor of Philosophy and Senior Fellow, Center for Medical Humanities, Compassionate Care, and Bioethics at Stony Brook University/SUNY. She is the author of Love’s Labor: Essays on Women, Equality, and Dependency and Metaphor: Its Cognitive Force and Linguistic Structure. She is coeditor of Cognitive Disability and Its Challenge to Moral Philosophy, Blackwell Studies in Feminist Philosophy, The Subject of Care: Theoretical Perspectives on Dependency and Women; Women and Moral Theory; Frames, Fields and Contrasts and has authored numerous articles on feminist philosophy, disability, and the philosophy of language. A Quest for A Humbler Philosophy: Thinking about Disabled Minds and Things that Matter,

exploring challenges posed by cognitive disabilities to philosophy, is in the making, as is a collection of essays on an ethics of care. She has two adult children, one of whom has significant cognitive impairments. F.M. Kamm, PhD, is Lucius Littauer Professor of Philosophy and Public Policy, Harvard Kennedy School, and Professor of Philosophy, Department of Philosophy, Harvard University. She is the author of Creation and Abortion; Morality, Mortality, vols. 1 and 2; Intricate Ethics; and Ethics for Enemies: Terror, Torture and War (all from Oxford University Press), and numerous articles on normative ethical theory and on practical ethics. She serves on the editorial board of Philosophy & Public Affairs and on the Faculty Advisory Committee of the Safra Ethics Center. She has been a fellow of the Guggenheim Foundation and the Center for Advanced Studies in the Behavioral Sciences, Stanford, and is a fellow of the American Academy of Arts and Sciences. Loretta M. Kopelman, PhD, is a Professor Emeritus at the Brody School of Medicine, where she founded and chaired its Department of Bioethics and Interdisciplinary Studies, and a faculty affiliate at Georgetown University. She was founding president of the American Society for Bioethics and Humanities, president of the Society for Health and Human Values, and recipient of the 2007 William G. Bartholome Award for Ethical Excellence from The American Academy of Pediatrics. She was a member of the Institute of Medicine’s Committee on Research with Children, and the American Philosophical Association’s Committee on Philosophy and Medicine. She serves on many editorial boards and has published widely, including on topics in bioethics, the rights of disabled persons, research ethics, philosophy and medicine, the fair allocation of health care resources, and especially on children’s rights and welfare. She has just been appointed to Ethics Advisory Panels at the NIH and the FDA. John W. Lango, PhD, is Professor of Philosophy (Emeritus) at Hunter College of the City University of New York. He specializes in metaphysics, ethics, and political philosophy. Concerning metaphysics, he has written articles on the philosophy of time, the theory of tropes, and the metaphysics of Alfred North Whitehead. He is the author of Whitehead’s Ontology. Concerning ethics and political philosophy, he has written articles on just

Contributors war theory, noncombatant immunity, nonviolent action, peacekeeping missions, nonlethal weapons, the last resort principle, nuclear deterrence, intelligence work, coercive interrogation, preventive war, armed humanitarian intervention, and other subjects. He is a coeditor of Rethinking the Just War Tradition. He is currently writing a book on just war theory. Stephen R. Latham, JD, PhD, is Director of the Interdisciplinary Center for Bioethics and a Senior Research Scientist at the Institution for Social and Policy Studies, Yale University. His publications on health law, professionalism, and bioethics have appeared in numerous law reviews, medical and bioethics journals, and university-press books. Latham is a former graduate fellow of Harvard’s Safra Center on Ethics and a former Research Fellow of the University of Edinburgh’s Institute for Advanced Studies in the Humanities. Latham was a gubernatorial appointee to Connecticut’s Stem Cell Research Advisory Board, and has also served on statewide advisory committees on tissue-banking and pandemic preparedness, and on the medical review board of the Department of Children and Families. He is a former board member of the American Society for Bioethics and Humanities, which gave him its distinguished service award in 2010. Janet E. Lord, LLB, LLM, LLM, is a senior partner and director of human rights and inclusive development at BlueLaw International, LLP, a veteran-owned international law and development firm, where she directs the human rights and disability inclusive development practice. She participated in the drafting of the UN Convention on the Rights of Persons with Disabilities, serving as legal advisor to Disabled Peoples’ International, several lead governments, and as technical expert to the United Nations. A senior research associate at the Harvard Law School Project on Disability, she has published widely in the area of human rights, international disability law, and inclusive development. She is adjunct professor of law at the University of Maryland Francis King Carey School of Law, where she teaches health and human rights, and serves on the faculty of the University of Galway (Ireland) summer institute on disability discrimination. Patricia S. Mann, JD, PhD, is an immigration lawyer in New York City, specializing in removal defense litigation. She is the author of MicroPolitics: Agency in a Postfeminist Era (University

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of Minnesota Press, 1994) and numerous journal articles. As a social and political philosopher, she wrote about contemporary issues of social change, such as gendered social changes and the assisted suicide debate. Howard McGary is Professor in the Department of Philosophy, Rutgers, The State University of New Jersey. His areas of specialization are social and political philosophy, African American philosophy, and normative ethics. His research has focused on liberalism, theories of justice, and collective responsibility. He serves on the editorial boards of the Encyclopedia of Ethics, The Journal of Ethics, Notre Dame Philosophical Reviews, The Philosophical Forum, and Social Identities, and he serves on the Executive Committee of the Eastern Division, American Philosophical Association. McGary is Founder and Director of the Rutgers Summer Institute for Diversity in Philosophy. His publications include My Larger Education (introductory essay to Booker T. Washington’s classic text on education), Humanities Books, 2004; Race and Social Justice, Blackwell Publishers, 1999; Between Slavery and Freedom (with Bill Lawson), Indiana University Press, 1992; and numerous articles and book chapters in journals and books. Jeff McMahan is Professor of Philosophy at Rutgers University. He is the author of The Ethics of Killing: Problems at the Margins of Life (Oxford, 2002) and Killing in War (Oxford, 2009). He has several other books forthcoming from Oxford University Press, including a collection of essays called The Values of Lives, a book on war intended for both academic and nonacademic readers called The Right Way to Fight, and a sequel to his 2002 book called The Ethics of Killing: Self-Defense, War, and Punishment. Paul T. Menzel, PhD, is Professor of Philosophy at Pacific Lutheran University. He has authored two books about moral questions in health economics, Medical Costs, Moral Choices: A Philosophy of Health Care Economics for America and Strong Medicine: The Ethical Rationing of Health Care. He has co-authored with health economists a number of articles about philosophical questions raised by the methodological structure of cost-effectiveness analysis. In other essays he has explored the relationship between justice and liberty in health system structure and health insurance reform. His most recent publication is a volume of original essays co-edited with Halley S. Faust, Prevention

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vs. Treatment: What’s the Right Balance? (Oxford University Press, 2012). Franklin G. Miller, PhD, is a member of the senior faculty in the Department of Bioethics, National Institutes of Health (NIH) and Special Expert, National Institute of Mental Health Intramural Research Program. His principal current research interests are examination of ethical issues in clinical research, the relationship between clinical research and health policy, and the placebo effect. Dr. Miller has co-authored Death, Dying, and Organ Transplantation (with Robert Truog), Oxford University Press (2012), edited five books, and written numerous published articles in medical and bioethics journals on the ethics of clinical research, ethical issues concerning death and dying, professional integrity, health policy, pragmatism and bioethics, and the placebo effect. Dr. Miller is a fellow of the Hastings Center, a Faculty Affiliate at the Kennedy Institute of Ethics, and Associate Professor of Public Health in the Division of Medical Ethics, Department of Public Health, Weill Medical College. E. Haavi Morreim, JD, PhD, is a Professor in the College of Medicine, University of Tennessee Health Science Center. She does clinical teaching, consulting, and research, with special interests in health care’s changing economics, alternative dispute resolution, and the litigation issues surrounding clinical medical research. She is also a licensed attorney, assisting clients in a variety of pro bono cases, and an experienced mediator listed by the Tennessee Supreme Court as a Rule 31 mediator for civil and family matters. Dr. Morreim has authored two books and over one hundred forty articles in journals of law, medicine, and bioethics, including California Law Review, Vanderbilt Law Review, Journal of the American Medical Association, Archives of Internal Medicine, Hastings Center Report, and the Wall Street Journal. Dr. Morreim has presented hundreds of lectures nationally and internationally, to such groups as the American Bar Association, the American Health Lawyers Association, and the American Medical Association. Timothy F. Murphy, PhD, is Professor of Philosophy in the Biomedical Sciences at the University of Illinois College of Medicine at Chicago and Lecturer in Medical Ethics at the Rosalind Franklin University Scholl College of Podiatric Medicine. He has written on sexuality and medicine,

genetics, and choices about having children for such journals as Bioethics, The Hastings Center Report, Journal of Medical Ethics, and Reproductive Biomedicine Online. He is the author or editor of eight books, the most recent of which is Ethics, Sexual Orientation, and Choices about Children (The MIT Press, 2012). He serves on the editorial boards of the journals Bioethics, the American Journal of Bioethics, and Virtual Mentor (the on-line ethics journal of the American Medical Association). He has also been a Visiting Scholar at the Institute for Ethics of the American Medical Association. Michael Nair-Collins, PhD, is Assistant Professor in the Department of Medical Humanities and Social Sciences and Associate Faculty in the Center for Innovative Collaboration in Medicine and Law at Florida State University College of Medicine. He was previously an Ethics Fellow at Mount Sinai School of Medicine. He writes on issues at the intersection of bioethics, philosophy of mind, and cognitive science, particularly involving brain death and disorders of consciousness. James Lindemann Nelson, PhD, is Associate Dean for Graduate Studies in the College of Arts and Letters, Professor of Philosophy, and Faculty Associate in the Center for Ethics and Humanities in the Life Sciences at Michigan State University. Nelson is the author or co-author of three books (The Patient in the Family, Alzheimer’s, and Hippocrates’ Maze) and editor or co-editor of two collections, and has published over a hundred articles and chapters on topics in bioethics, moral psychology, and moral theory. Currently a member of the Board of Directors of the American Society for Bioethics and Humanities, he is working on a book on organ procurement ethics and participating in a five-nation consortium on bioethical issues emerging from the interactions of formal health care and families. Nelson is a Fellow of The Hastings Center. David Ozar, PhD, is Professor of Philosophy at Loyola University Chicago. He has taught professional ethics in Loyola’s schools of medicine, nursing, business, law, education, social work, and dentistry and served as Director of Loyola’s Center for Ethics from 1993 to 2006. Ozar is also in his 27th year as consulting ethicist and member of the Institutional Ethics Committee for North Shore University Healthcare System. He was a member of the Ethics Board of the Illinois

Contributors Department of Children and Family Services and the Executive Board of the Chicago Region Advance Care Planning Coalition. Ozar also conducts the ethics program for the Chicago College of Osteopathic Medicine. He was the founding President of the American Society for Dental Ethics and has served in various roles for the American Society for Bioethics and Humanities and other professional organizations. He has published two books and more than a hundred professional articles and book chapters on ethical and social issues in health care, professional ethics, and organizational ethics. Robert T. Pennock, PhD, is a Professor at Michigan State University, where he is on the faculty of Lyman Briggs College, the Departments of Philosophy and Computer Science, the Ecology, Evolutionary Biology and Behavior graduate program, and the Center for Ethics and Humanities in the Life Sciences. He is a principal investigator of the BEACON Center for the Study of Evolution in Action. His research focuses on the relationship of epistemic and ethical values in science, especially as they relate to evolutionary biology, including the evolution of altruism and intelligence, and to responsible conduct of research. A Fellow of the American Association for the Advancement of Science (AAAS), Pennock has served on the AAAS Committee on the Public Understanding of Science and Technology and American Philosophical Association (APA) Committee on Public Philosophy. He is currently the APA representative on the AAAS Section Committee on History and Philosophy of Science. Rosamond Rhodes, PhD, is Professor of Medical Education and Director of Bioethics Education at Mount Sinai School of Medicine, Professor of Philosophy at The Graduate Center, CUNY, and Professor of Bioethics and Associate Director of the Union-Mount Sinai Bioethics Program. She writes on a broad array of issues in bioethics and on the moral and political philosophy of Hobbes, Aristotle, Kant, and Rawls. She is coeditor of The Blackwell Guide to Medical Ethics (Blackwell, 2007), Medicine and Social Justice: Essays on the Distribution of Health Care (Oxford, 2002), and Physician Assisted Suicide: Expanding the Debate (Routledge, 1998). She is a former board member of the American Society for Bioethics and Humanities, and she is now Chair of The American Philosophical Association Committee on Philosophy and Medicine.

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Erin Rothwell, PhD, is an Assistant Research Professor in the College of Nursing at the University of Utah. She is a behavioral scientist and currently a fellow in Bioethics at the Medical College of Wisconsin, an Associate of the Division of Medical Ethics and Humanities, and faculty within the Graduate Program for Genetic Counselling at the University of Utah. She is also a member of the Mountain States Region Genetics Collaborative. Her program of research focuses on the ethical, social, and legal implications of genetic and technological advancements on individuals and families specifically within newborn screening, predictive cancer testing and biobanking. She has extensive experience on qualitative approaches to further understand and advance this research agenda. James Sabin, MD, is Clinical Professor in the Departments of Population Medicine and Psychiatry at Harvard Medical School and Director of the Harvard Pilgrim Health Care Ethics Program, a nationally recognized, highly innovative organizational ethics program. His major research interests are in the clinical and theoretical aspects of fair resource allocation, the role of consumers in overseeing health policy and practice, and the ways in which organizations can best deal with the ethical dimensions of their work. He has written more than one hundred and forty articles and chapters on organizational ethics, resource allocation, and clinical practice. A second edition of Setting Limits Fairly, written with Norman Daniels, was published by Oxford University Press in 2008. No Margin, No Mission: Health Care Organizations and the Quest for Ethical Excellence, written with Steven Pearson and Ezekiel Emanuel, was published by Oxford University Press in 2003. He blogs about health system ethics at http://healthcareorganizationalethics.blogspot.com/. Thomas D. Schiano, MD, is Professor of Medicine and Medical Director of the Liver and Intestinal Transplantation programs at The Mount Sinai Medical Center. He is on the Medical Advisory Board for the New York Donor Network and has served on the Ethics Committee for the American Association for the Study of Liver Diseases as well as for The United Network for Organ Sharing. He has served as an Associate Editor for the journal Hepatology. Mark Sheehan, PhD, is Oxford Biomedical Research Centre (BRC) Ethics Fellow at the Ethox

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Centre and a James Martin Research Fellow at the Institute for Science and Ethics in the Faculty of Philosophy. His current research focuses on issues in research ethics and governance, ethical issues in health care resource allocation, and methodology in Applied Ethics and Bioethics. He is a co-author of the EU-funded European Textbook on Ethics in Research. He is a member of the NHS Advisory Group for National Specialised Services (AGNSS) and is vice-chair of the Thames Valley Priorities Forum (MOBBB) for the South Central Strategic Health Authority. He is Deputy Editor of the Journal of Medical Ethics and is a Senior Research Fellow in Philosophy at St. Benet’s Hall, University of Oxford. Charles Silver, MA, JD, holds the Roy W. and Eugenia C. McDonald Endowed Chair in Civil Procedure and is Co-Director of the Center on Lawyers, Civil Justice, and the Media at the University of Texas School of Law. Professor Silver writes on diverse subjects, including aggregate litigation, the professional responsibilities of attorneys, medical malpractice, and health care policy. He served as Associate Reporter on the American Law Institute’s Principles of the Law of Aggregate Litigation, which was published in 2010. In 2009, he received the Robert B. McKay Award given annually by the Tort, Trial and Insurance Practice Section of the American Bar Association in recognition of outstanding scholarship on tort and insurance law. Working with a team of researchers, Professor Silver has produced a series of influential empirical studies of medical malpractice lawsuits in Texas. Anita Silvers, PhD, is Professor and Chair of Philosophy at San Francisco State University. She is the recipient of the American Philosophical Association’s Quinn Prize and the Chair of the APA Committee on Inclusiveness. She has written extensively on issues of medicine and justice for people with disabilities and chronic illnesses, elderly people, neonates, and other especially vulnerable groups. She is coauthor of Disability, Difference, Discrimination: Perspectives on Justice in Bioethics and Public Policy (Rowman, 1999) and coeditor of The Blackwell Guide to Medical Ethics (Blackwell, 2007), Medicine and Social Justice: Essays on the Distribution of Health Care (Oxford, 2002), and Physician Assisted Suicide: Expanding the Debate (Routledge, 1998). She is completing a coauthored (with Leslie Pickering Francis) book on philosophical theory of justice which is enriched

by her experience in disability advocacy and in service on the ethics committee of a county hospital. Patricia Smith, PhD, is Professor of Philosophy at The Graduate Center, CUNY. In her work she focuses on issues of social and legal responsibility, distributive justice, and social revolution. She is also interested in the act/omission distinction in law and morals, the doctrine of positive and negative duty and its implications for liberal theory, and the process and effect of social change on values and obligations. She has published Goodness and Nature: A Defense of Ethical Naturalism (Nijhoff, 1987), The Politics of Aristotle, Translated with introduction, analysis, and notes (University of North Carolina Press, 1997), A Philosophical Commentary on the Politics of Aristotle, (University of North Carolina Press, 1998), On Karol Wojtyla (Wadsworth, 2001), and Vices, Virtues, and Consequences (Catholic University of America Press, 2001). Gopal Sreenivasan is Lester Crown Professor of Ethics at Duke University, where he is jointly appointed between the philosophy department and the Trent Center for Bioethics in the medical school. He obtained his PhD in philosophy from the University of California, Berkeley in 1993. His work in bioethics has concentrated mainly on questions of distributive justice and health, both domestically and internationally. He is also very interested in the ethics of informed consent. He has published articles on a wide range of other topics in moral, political, and legal philosophy, including rights; democracy; judicial review; international agreements; global distributive justice; cross-cultural ethics; and moral psychology. He is currently completing his second book, Emotion and Virtue (Princeton). He taught previously at Princeton University and the University of Toronto. From 2000 to 2002, he was on the faculty of the Department of Clinical Bioethics at the NIH. Mark S. Stein, JD, PhD, is a union-side labor lawyer in Chicago. He is the author of Distributive Justice and Disability: Utilitarianism against Egalitarianism (Yale University Press, 2006). He has published numerous journal articles on distributive justice, bioethics, and other topics. He is currently working on a book titled Blood Libel: The Life and Memory of Mendel Beilis. Michael Ashley Stein holds a JD from Harvard Law School and a PhD from Cambridge University.

Contributors Co-founder and Executive Director of the Harvard Law School Project on Disability, as well as Cabell Professor at William & Mary Law School, he has taught at Harvard, New York University, and Stanford law schools. An internationally acclaimed expert on disability law and policy, Stein participated in the drafting of the UN Convention on the Rights of Persons with Disabilities. He works with disabled persons organizations around the world, actively consults with governments on their disability laws and policies, and advises a number of UN bodies. Lance K. Stell, PhD, FACFE, is John E. and Mary West Thatcher Professor of Philosophy and Director, Medical Humanities Program at Davidson College; Clinical Professor of Medicine, UNC— Chapel Hill, School of Medicine; Medical Ethicist, Carolinas Medical Center; Professor of Medicine, Translational Science Institute, Wake Forest University School of Medicine; Professor, Graduate Faculty, Wake Forest University. He teaches and publishes in ethics, medical ethics, political philosophy, and philosophy of law. Dr. Stell directs Carolinas Medical Center’s Ethics Consultation Service and serves on the Patient Selection Committees for organ transplantation. He serves on the Editorial Advisory Board of The Physician’s Index for Ethics in Medicine. Dr. Stell is a Fellow and Diplomat in the American College of Forensic Examiners. He serves as an expert witness in criminal, civil, and hospital discipline cases involving standards of professionalism. He serves on the North Carolina Medical Society’s Committee on Ethical and Judicial Affairs and on the North Carolina Bar’s Grievance Committee, 26th Judicial District. In 2005, the NC Medical Society recognized Dr. Stell’s service to the medical profession with the John Huske Anderson award, the highest honor the Medical Society confers on a non-physician. Dorothy Weiss Tolchin, MD, EdM, is a boardcertified physiatrist with specialty neurology fellowship training in diagnosis and care for individuals with neuromuscular disease. She completed her AB, EdM (disability policy), and MD degrees, as well as her post-graduate medical training, at Harvard University. She recently moved to Manhattan to be with her husband and is currently a clinical fellow in palliative medicine at Columbia University Medical Center. She serves people with disabilities and their families across all phases of the lifespan, with a focus on quality

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and continuity of care. She has extensive experience creating curricula and teaching medical students and physicians about optimal care for individuals with disabilities, and is an active disability advocate and program volunteer in her community. Rosemarie Tong, PhD, has dedicated her research, teaching, and service to two areas: feminist thought and bioethics. She has focused on issues such as women’s health, global bioethics, genetic and reproductive technologies, and, most recently, aging and long-term care. She has benefitted from invitations to participate in international conferences (Beijing, Taipei, Helsinki, London, Mexico City, Sydney, Amsterdam, Belgrade, Singapore, and Croatia), where she learned about women’s diversities and commonalities, experiences that inform her writing and teaching. Tong’s goal is to write and speak in a clear and compelling way that is comprehensible to the average informed citizen. She has had leadership roles in the Association for Professional and Applied Ethics, the International Network for Feminists Approaches to Bioethics, and the American Philosophical Association Committee on the Status of Women. Bruce C. Vladeck, PhD, is Senior Advisor to Nexera Inc., a wholly-owned consulting subsidiary of the Greater New York Hospital Association. Previously, he had worked at Ernst & Young, as Interim President of The University of Medicine and Dentistry of New Jersey, and at Mount Sinai Medical Center. From 1993 through 1997, Dr. Vladeck was Administrator of the Health Care Financing Administration (HCFA), responsible for administering Medicare, Medicaid, and related programs. He is a member of the New York City Board of Health, a Trustee of Ascension Health, Board Chairman of the Medicare Rights Center, and a member of the Editorial Board of Health Affairs. He was President of the United Hospital Fund of New York from 1983–1993, and is a member of the Institute of Medicine and the National Academy of Social Insurance, from which he received the Robert M. Ball Award in 2005. David Wasserman, JD, MA (psychology), is Director of Research, Center for Ethics at Yeshiva University. He works on ethical and policy issues in disability, reproduction, health care, genetics, and biotechnology. He has co-authored Disability, Difference, Discrimination with Anita Silvers and Mary Mahowald. He has co-edited Quality of Life

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and Human Difference: Genetic Testing, HealthCare, and Disability, with Robert Wachbroit and Jerome Bickenbach, and Harming Future Persons: Ethics, Genetics, and the Nonidentity Problem with Melinda Roberts. Jonathan Wolff, MPhil, is Professor of Philosophy and Director of the Centre for Philosophy, Justice and Health at University College London. His books include Robert Nozick (1991), An Introduction to Political Philosophy (1996 and 2006),

Why Read Marx Today? (2002), Disadvantage (2007), Ethics and Public Policy (2011), and The Human Right to Health (2012). He works especially in the connection between philosophy and public policy, and has been a member of several public committees in the UK, including the Gambling Review Body and the Academy of Medical Science working party on Drug Futures. He is a member of the Nuffield Council on Bioethics, and writes a regular column for The Guardian.

Introduction Medicine and Social Justice Essays on the Distribution of Health Care

T

he essays in this volume—written by philosophers, doctors, lawyers, bioethicists, political scientists, and economists—challenge and deepen understanding of issues of social justice through a detailed examination of both philosophical theory and health care policy and practice. Since the publication of the first edition of Medicine and Social Justice a decade ago, there have been shifts in the understanding of social justice, both in philosophical and political theory, and in practice in the health care domain. There have been significant changes in health care institutions and policies as well. Biomedical science has advanced, social institutions have been transformed, and some issues that were barely noticed or not even on the horizon in 2002 have now come to be pressing. Profound concern about the adequacy of health care funding—for both present and future populations’ needs—has prompted initiatives across the globe aimed at providing health services more efficiently and effectively, without compromising justice in regard to access to care. All these developments call for somewhat altered approaches to justice in health care decision-making. The second edition of Medicine and Social Justice represents a significant update of the previous volume in both content and organization. The second edition still addresses, but with revised and new essays, the basic concepts and key issues of justice that arise in the allocation of health care. Two of the original chapters from the first edition are included, together with 19 considerably revised chapters, and 21 chapters that are entirely new to this volume. This second edition of Medicine and Social Justice continues to raise and try to resolve farreaching difficult questions: What is justice? What is it for a health care system to be ideally just? What conditions of social justice or injustice in the background society affect justice in health care? What does justice require if health care must

be allocated under conditions of injustice? Which choices and tradeoffs made within health care systems are just, and which ones are not? What requests from patients seeking access to specific forms of health care does justice require to be answered positively—does their personal history or the situation of their social group matter? Or their prognosis or the anguish of their desperation? The collection serves two purposes: it both explores a wide range of different approaches to the issues of justice in health care, and it also probes the connections between theoretical accounts of justice and observations of justice (and injustice) in practice. It does not impose a single way of looking at justice; rather, readers will be introduced to the repleteness of theory and the many ways that different understandings of justice frame the problems facing policymakers and clinicians. Readers thus are invited to observe how theory is used to guide practice, and is itself shaped and changed by the conditions of practice. The relevant theoretical discussion of justice draws on Aristotle, whose viewpoint is still influential and insightful. Aristotle defines “justice” as treating like cases alike and different cases differently. This is a formal principle of justice, and it still holds for all of the specific forms of justice: distributive justice (how to parcel out goods among parties who deserve them), procedural justice (how to maintain fairness in resolving disputes or differences in points of view), retributive justice (how to respond to a party who caused an offense), compensatory justice (how to repair harms done to parties undeserving of such treatment), and so on. Although other spheres of justice play a role as well, distributive justice is central to discussions of health care justice because health systems virtually always operate under conditions of scarcity. Thus the most frequent question regarding justice in health care is about how providers should allocate care among patients who need or want it when there are not enough

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introduction

resources to provide for what everyone ideally should or would like to have. The term “social justice” refers to relationships between a society and the individuals and groups it comprises. Social justice sets out what the society owes to its members and, concomitantly, what people owe to the community as a whole. Social justice can be contrasted with an individualistic conception of justice that focuses on what persons owe to one another (e.g., a doctor to a patient, a parent to a child, neighbors to each other), rather than what the collective community owes and is owed. While the term “social justice” is used in different ways, it usually incorporates the various forms of justice, but places particular emphasis on distributive justice sought in a context of opportunities and deprivations. Social justice is the ultimate goal of the forms of justice as they might be practiced interactively, in concert, on behalf of society as a whole. Many discussions of health care and social justice are framed in terms of health and disease. Health is often defined as the biological condition that enables normal species functioning. Grounding decisions about the allocation of health care resources in the value of health makes allocation dependent on whether or not the prospective recipients’ health states are classified as illnesses or disease: resources are provided primarily for cure or mitigation of disease. In spite of the familiarity of this line of argument, health may not be the single appropriate goal for designing a health care system. It is hard to make sense of the notion of a right to health, as it is unclear against whom or what such a claim to be provided with health (as distinct from receiving services to maintain or restore health) reasonably could be lodged. Also, the skills and knowledge of medicine as it now is practiced are not restricted to preventing and curing disease. Of course, every undesirable biological state with which medical professionals concern themselves might be subsumed under the idea of disease. But to do so would be to beg real questions about whether being old, heavy, infertile, or not immune to certain infections counts as being diseased. Yet these all are conditions for which physicians’ services are offered in our health care system. Further, the broadly construed health care system encompasses much beyond effecting cures: immunization and other prevention programs, long-term caregiving, design and distribution of many kinds of durable equipment and prosthetic devices, medical analytics and informatics, and

even patient transportation, not to mention professional education and licensing for many kinds of service-providing and caregiving roles. Discussions in this volume reflect the presence of such extensions of health care systems, expanding the volume’s focus beyond the traditional physician–patient relationship. Four groupings of chapters make up the volume. First, the chapters in Part I address theoretical issues about the nature and requirements of justice. Some draw on John Rawls’s influential theory of justice, a theory that, particularly in the application by Norman Daniels, has shaped much of contemporary thinking about justice in health care. Daniels emphasizes the importance of health in equalizing people’s abilities to pursue opportunities in the world; he also develops the “lifespan” approach to justice in health care, according to which the young, the middle-aged, and the old are not seen as groups in competition for scarce health resources, but as individual persons at different stages of their lives. Other chapters in this section are non-Rawlsian in their conception of justice and their views of justice in health care. The chapters of this section, sometimes in agreement and sometimes in tension with one another, explore and expand the grounds for health care justice. The chapters in Part II examine the justice of various proposals about priorities for allocating health care resources. This section begins to wrestle with the theories of justice explored in Part I. As rationing may be required in the real world of scarce resources, authors try to identify the just bases for making hard decisions. Some authors address the fundamental issue of whether a just system may give considerations of efficiency a dispositive, or at least weighty, role in deciding which individuals should have access to health care, and what quality and quantity of health care each should receive. Some of the chapters discuss the magnitude of the obstacles—economic, political, and ideological—to the achievement of justice in actual health care situations and systems, both at a national and on a global level. Some of the chapters in Part II point to dilemmas and inadequacies in the systems they examine, and to failures to reach or even to approximate justice in the distribution of health care resources. Others identify policies and practices that may approach a condition of genuine justice in health care. The chapters of Part III pose some of the most pressing political challenges concerning justice in health care: these essays consider the claims and needs of disadvantaged groups, including the

Medicine and Social Justice poor, racial minorities, women, LGBT people, children, the elderly, people with disabilities and chronic illnesses, and other groups that are typically defined by social criteria and not by health care needs alone. Troubling policy questions arise: what does theoretical and practical justice say about claims to health care by people who are politically powerless or socially disadvantaged? Do the currently prevailing health care systems even recognize or appreciate their needs? Do health care systems deal with inequities of influence, do they acknowledge them with hollow rhetoric, do they address long histories of unfairness and maldistribution? Many of the chapters in Part III engage with social problems that can be traced to painful group experiences of denial and deprivation, and to frustration with the limitations of health care systems. The viewpoints they present are shaped by a profound sense of human need and by recognition of the difficulty of responding to social differences in a way that is just to all concerned. Finally, the chapters in Part IV illustrate other kinds of serious challenges to justice in healthpolicy design. Policymakers who actually make the hard choices address specifics and adjudicate conflicts between different sets of desirable outcomes that can be disregarded on the theoretical level. They have to allocate medical resources between competing individuals (e.g., who gets the liver?) and authorize or deny payment for treatments (e.g., who gets drugs for depression? acupuncture for pain?). The rules of insurers complicate the decisions that must be made by medical professionals, patients, and families. The chapters in this section also illustrate the complicated situations that must be faced in just decision-making about the medical profession’s pursuit and acquisition of new medical knowledge and government’s pursuit of the collective public interest. While the essays in this volume have been organized into the four sections described briefly above, many of them are complex because they deal with layered issues. Some chapters could have been appropriately placed within more than one section. Similarly, the disciplinary concerns of the authors overlap considerably: some are involved in consultations, some in bedside treatment decisions, some in policymaking at institutional or government levels, some in academic discussions, and some in legal proceedings, but many of these authors have experience in at least some, and a few in most or all, of these activities. Taken together, the authors represented in this collection greatly enrich our understanding

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of the concept of justice and what a just health care system should be. All also are concerned with sharpening and refining our conception of justice. The introduction to each section provides a more detailed guide to the views presented within it. It will be evident that the volume as a whole provides a rich and very complex set of discussions, all concerned with a range of deeply troubling and profoundly important issues—the issues of justice in health care—in contemporary societies.

PA R T I . T H E O R E T I C A L F O U N D AT I O N S Justice, said Aristotle, involves treating like cases alike and different cases differently. This formal principle of justice which we presented above would be easy to satisfy if it were possible to tell with clarity which cases are alike and which cases are different, and if, when distributive questions arose, there were enough resources available in every situation so that everyone who needs or wants something could have it. But this is not so, and the real challenge to theories of distributive justice involves showing how the merely formal demands of the Aristotelian principle are to be met in cases of scarcity and conflict—whether that scarcity is real or the result of various policy constraints, and whether the conflicts are between similarly or disparately situated recipients. What counts as justice in medicine, or in health care more generally? Are “like cases alike” when two people have the same illness? Or have the same prognosis? Or when they are the same age, or are in the same social situation, or have suffered the same past deprivation, or have made the same social contributions, or are the same in other specific respects? And what if resources— whether of money, medical materials, or skilled medical personnel—do not suffice to provide similar treatment for all individuals who initially seem to be relevantly alike? Can finer-tuned differences among individuals be invoked justifiably to defend differences in their access to medical help? The chapters in this section examine the appropriateness of various sorts of conceptual machinery for applying theories of justice to such practical dilemmas about medicine and justice. In “Justice, Health, and Health Care,” the first of the theoretical selections in this section, Norman Daniels provides a succinct but comprehensive statement of his well-known theory of justice in health care, now expanded to examine three basic questions: first, is health care special, different from other goods? second, when are

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introduction

inequalities in health—not simply health care, but health itself—unjust? and third, can there be a fair process for making rationing decisions? Daniels’s theory of justice in health care is developed as an application of John Rawls’s theory of justice to the special circumstances of health care, an issue Rawls did not address. Daniels’s theory holds that health—and by extrapolation health care—is important to the range of opportunities in life that are open to a person—offices, employment, relationships, aesthetic capabilities, political roles, even the capacity to think. Health care may affect virtually every area of human experience and activity: if poorer health care means poorer health, it may also mean poorer experience in every aspect of human existence. Thus, health care is not just one among many things that are good, but is of central and crucial importance because it enables the realization of other goods. Recent empirical work shows, however, that people’s level of health is correlated with more characteristics of their social environment than just the health care available to them. The importance of social determinants of health raises new challenges for thinking about justice in health care. To answer this challenge, Daniels expands upon his well-known theory, and shows how justice is good for health and how health is good for justice. Paul T. Menzel, in “Justice, Liberty, and the Choice of Health-System Structure,” explores what have been assumed to be irreconcilable conflicts between different types of health care systems—specifically, between the values of individual choice and responsibility on the one hand, and the values of equity and efficiency on the other. Menzel tries to reconcile what is commonly thought to be a basic conflict. Egalitarian socialwelfare systems tax the wealthier to pay for the health care of the poor and impose restrictions such as cost constraints on the liberty of all. Freemarket systems treat health care like other consumer goods: those who can pay get excellent health care, and those who cannot pay go without, or rely on minimally funded public or charity care. Menzel addresses the tension between egalitarian and free-market values by explaining how requiring everyone in a society to have health insurance is actually consistent with both. (This issue is taken up again in the chapter by Stephen R. Latham in Part II.) Menzel examines several key considerations: what a free-rider would actually choose if forced to make choices; what is involved when a patient’s prior consent is presumed; what

is at stake in regard to personal integrity, and whether a person ought to be held responsible for the later results of personal choices made at an earlier time; equal opportunity for welfare; and a principle of just sharing of financial burdens. In contrast to Menzel’s focus on individuals, Mark S. Stein’s account of “A Utilitarian Approach to Justice in Health Care” contends that the goal of a just health care system ought to be the “greatest good for the greatest number,” the utilitarian ideal. Stein considers the adequacy of alternative theories of distributive justice for resolving issues about health care allocation. He takes egalitarianism, in its several variations, to be the main alternative to utilitarianism. Stein argues that applying egalitarian principles to problems about allocating health care yields implausible results. He then presents a nuanced utilitarianism meant to support values of equality, clarify the matter of aggregating benefits, and comply with intuitions about deontological constraints about sacrificing less healthy individuals for those with better prospects for recovery. (This last issue is taken up again in the chapters by David Wasserman in Part I and F.M. Kamm in Part II.) Rosamond Rhodes’s chapter “Justice Pluralism: Resource Allocation in Medicine and Public Health” takes a different tack. Instead of defending a single conception of justice as the way to make decisions about how and to whom medical resources should be allocated, she argues that there are several different theories of justice that offer legitimate distributive principles and that therefore may be invoked to resolve questions about allocating health care. To illustrate this, she focuses primarily on public health decisions by examining the aftermath of 9/11, the anthrax attacks of 2001, the flu vaccine shortage of 2004, and the response to Hurricane Katrina as her primary examples. Taking up a theme introduced by Daniels, Jonathan Wolff ’s chapter on “Health Risk and Health Security” focuses in depth on how various social factors contribute to people’s health status. Unlike Daniels, for Wolff (and others) the connection between a population’s good health and access to generous health care is not unproblematic. Drawing on U.K. health outcomes data segmented by class, Wolff examines suspicions that the benefits of universal health care are marginal. He argues that universal health care not only has benefits for particular individuals, but also improves population health by providing health security. Health security, or the lack of it, is a

Medicine and Social Justice crucial multidimensional indirect effect that a society’s health care system has on the population’s well-being. David Wasserman’s chapter, “Aggregation and the Moral Relevance of Context in Health Care Decision-Making,” focuses on dilemmas of “tragic choices” about whom to save when one cannot save all. These dilemmas have often been framed as distributive choices among individuals in situations of scarcity—for example, choosing between two patients in an emergency room, both of whom will die without a respirator, when only one respirator is available. Wasserman expands the discussion to encompass “tragic choices” made by institutions and governments about allocating health care resources among different groups of prospective patients. He observes that different distributional rules are thought to apply in “macro” contexts and in the standard “micro” contexts of bioethics, particularly in rules concerning tradeoffs between a small number of great harms, such as the loss of life, and a larger number of lesser harms, such as the loss of a limb. The final two chapters in this section consider whether or not there is a right to health care. In the first, “Why There Is No Right to Health Care,” Stefan Bernard Baumrin applies the conceptually important distinction between negative and positive rights. Negative rights, also called liberty rights, are rights not to be interfered with in doing something you want to do, or impeded in acquiring something you want to possess. Positive rights, in contrast—also called claim rights—are rights to be provided with something. Baumrin considers whether health care is a right in either of these senses, and if so, whether it could be the product of contract, oath, legislation, or simple expectation. He also considers what a right to health care, if there were such, might cover. Here, he constructs three lists of services, one covering minimal emergency and acute care and control of epidemic disease, a second also including chronic and reconstructive care, and a third including all of those plus well care, dental care, and nutrition. Baumrin argues that there is no general right to health care, despite broad expectations, and that this issue will be “the main social battlefield of the coming century.” The second chapter that explores the question of whether there is a right to health care takes a somewhat different view. Kristen Hessler and Allen Buchanan, in their chapter “Equality, Democracy, and the Human Right to Health Care,” identify two distinct trends in the discussion

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of this issue—one of which, they argue, is on the mark, the other misguided. The one they find praiseworthy is the increasingly broad approach to the issue of justice in health care, as discussed by Norman Daniels earlier in this section, in which the social determinants of health are recognized. What they find misguided are attempts to analyze the precise content of the alleged “right to health” by specifying the levels and kinds of health care to which individuals are entitled. Their criticism implicitly takes issue with the list offered in the preceding paper by Baumrin and the account of a “decent minimum” in a chapter by Menzel in Part II. They point out that a “right to health,” as distinct from a “right to health care,” would be impossibly expensive and ultimately unattainable (after all, all patients eventually die, and so cannot have been guaranteed an open-ended right to health). Hessler and Buchanan review a number of accounts of rights to health care and find all of them inadequate. Instead, they suggest that we should think of “rights” to health care not as a foundation of justice, but as established by the political process, especially by the procedures of a democratic state. We should thus look to the realities of human experience and political decisionmaking, rather than to the ideals of a theory of justice, to ascertain the force of claims to rights to health care.

PA R T I I . A C C E S S A N D R AT I O N I N G The chapters in this section examine illustrative issues about allocation of scarce medical resources within a society. Building on the discussions of justice theory in the first section, this group of chapters focuses on central facts about health care in the world in which we find ourselves today. First, there are chapters that address the health care systems we now have in the U.S. and the U.K., and assess possible changes to see whether these might promote or impede progress toward justice. The section continues with chapters that spell out specific considerations that a just system of health care allocation should address. The section concludes with two papers that take a global view of social justice. In their chapter, “Unequal by Design: Health Care, Distributive Justice, and the American Political Process,” Bruce C. Vladeck and Eliot Fishman discuss the situation in the U.S. They propose that the absence of a national health care provider or insurance system in the U.S., leaving about one third of the population without reliable payment

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for medical treatment, is a consequence of the U.S. Constitution and political system. They invoke features of U.S. political institutions to account for the failure to establish universal health care insurance despite the creation of more limited programs such as Medicare and Medicaid, and the recently passed Affordable Care Act. They also suggest that the inability to achieve equitable access to health care in the U.S. aligns with a broader retreat from the active promotion of greater distributive justice in many areas of American society. Stephen R. Latham’s chapter, “Justice of and Within Health Care Finance,” continues the discussion of the U.S. approach to health care distribution, with special attention to the reform measures recently passed by the U.S. Congress and signed into law by President Obama. As of this writing, these reform measures are being attacked both in the courts and by some politicians. Latham begins by considering arguments in favor of, and arguments objecting to, the social subsidization of health care. In the last part of the essay, Latham focuses on the individual mandate, one of the most disputed features of the U.S. reform legislation, which forces citizens to purchase health insurance. The next two chapters examine the general issue of rationing in principle and in practice. In his chapter, “Setting Priorities for a Basic Minimum of Accessible Health Care,” Paul T. Menzel takes up the claim that justice requires providing people with at least a decent minimum of care. Menzel offers a careful analysis of how theoretical commitments to a safety net or bottom line translate into a basis for rationing medical resources. From that perspective, he goes on to explain what would constitute a basic minimum, and provides a detailed account of what those services would include. Gopal Sreenivasan’s chapter, “Why Justice Requires Rationing in Health Care,” explains the ineluctable need for making hard rationing decisions. Justice, he says, not only permits but in principle requires a national health scheme to deny some people some effective medical treatment they need. He goes on to examine strong and weak versions of this conclusion, pointing out that whether rationing is called for in practice will turn on the particular circumstances of the health system. Following are two chapters about how certain comparative considerations should be weighed in allocating scarce health care resources. Dan W. Brock discusses whether an individual’s

being worse off than others should be a relevant consideration in the allocation of limited medical resources. His chapter, “Priority to the Worse Off in Health Care Resource Prioritization,” reviews and assesses arguments that are pressed by proponents of different theories of justice about whether being worse off than others makes special demands on just allocations of resources. F.M. Kamm’s chapter, “Whether to Discontinue Nonfutile Use of a Scarce Resource,” considers whether, and if so how, the efficacy of a treatment should factor into rationing decisions. Her discussion also illuminates the comparative moral significance of small and large differences in determining who does or does not get access to medical care. The next two chapters in this section consider how being a moral agent bears on allocating medical resources. Lance K. Stell’s chapter, “Responsibility for Health Status,” presents an account of what it takes to be a moral agent. Based on this view, he argues that people are to some degree responsible for their medical conditions. Thus, he says, ignoring people’s accountability for their health states in allocating medical resources treats prospective patients as if they are not respectable moral agents. In his view, doing so fails to acknowledge their agency and hence is wrong. In exploring the imperfect nature of the U.S. health care system, Patricia S. Mann’s chapter, “Health Care Justice and Political Agency 2011,” considers the gap between political ideals (which she believes the U.S. still has) and current political praxis. Mann seeks to eliminate the tension that Stell embraces. The problem, she thinks, results from tension between the ideal of the individual as an autonomous economic and political agent, and the ideal of a collective distributive justice that fairly and equally benefits all. The myth propelling the preeminence of the individual is that each could succeed, if he or she really tried; hence, public support for universal benefits like health care is an undue burden on achievers. Mann exposes errors in the assumption she believes to fuel this view, proposing an alternative reading of responsible agency. Mark Sheehan and Tony Hope discuss the situation in the U.K. in their chapter, “Allocating Health Care Resources in the U.K.: Putting Principles into Practice.” The chapter opens with a discussion of the ethical principles behind just health care allocation in the British National Health Service (NHS), as it is the largest provider

Medicine and Social Justice of health care in the world and has tackled issues of rationing and resource distribution. The ethical considerations that the authors believe should underlie just health care allocation are equality of outcome, as measured by cost per quality-adjusted life year (QALY), and equality of persons or equity, which can be considered through the principles of fair process, need, and rescue. Sheehan and Hope examine how these ethical principles work in practice on the national, regional, and local levels. The national level is governed by the National Institute for Health and Clinical Excellence (NICE), and uses the principles of cost effectiveness and equity in order to make fiscal and clinical recommendations to the lower levels. Although there have been few cases where the local level does not follow NICE recommendations, Sheehan and Hope criticize NICE for having power without the relevant responsibility, which causes them to make recommendations with regards to opportunity costs and the national budget, without addressing specific issues of the local level. The authors then focus on the local level, specifically the Oxfordshire Primary Care Trust, and how it uses the South Central Ethical Framework to make decisions about why an individual patient should receive a treatment that is not usually covered by the NHS. This framework provides seven principles for making these decisions. Sheehan and Hope address the need to consider ethical issues on both the national and local level. They end by discussing the issue of rescue and Individual Funding Request (IFR) panels. Taken together, their discussion examines the strengths and weaknesses associated with the NHS, and argues for a consistent and cohesive approach to health care decision-making. The last two chapters in Part II take up the challenge of thinking about access to health care as a global issue. John W. Lango’s chapter, “Global Health, Human Rights, and Distributive Justice,” considers whether we should adopt a global perspective about access to health care rather than concerning ourselves just about the needs of citizens in our community or nation. He argues that we should care about medical support for our fellow humans regardless of political boundaries. In advancing his position, Lango draws upon international statements of human rights as well as positions taken by the United Nations. The final chapter in this section, “Equal Access to Health Care Under the UN Disability Rights Convention,” by Michael Ashley Stein, Janet E. Lord, and Dorothy Weiss Tolchin, also looks at the issue

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of access to health care from a global perspective. They discuss the mandates of the 2006 United Nations Convention on the Rights of People with Disabilities (CRPD), ratified by 100 nations at the time of this writing, for the provision of health care to people with disabilities. The CRPD is shaped by the social model of disability rather than the medical model. States that are parties to the convention are required to provide equitable access to health care, including rehabilitation services, regardless of whether individuals have incurable biological impairments. Thus, disability no longer can be regarded as a reason for reducing eligibility for scarce health care resources.

PA R T I I I . P O P U L AT I O N S In today’s world, some people have more health problems than others, and some people receive better health care treatment than others, but the groups receiving greater benefits often are different and distanced from the groups with greater needs. In contrast, in a world of fully sufficient resources and ideal justice, there would be no difficulties for institutions to operate equitably. They would never promote the welfare of some at the expense of others or privilege some when others might also be claimants for the allocation of a benefit or a good. But in our world, the kinds of people considered most important to society—whoever they happen to be—typically are offered access to health care of superior quality and greater quantity than are marginalized groups. Patients with the same health problems often have very different degrees of access to effective care. Further, because resources really may be scarce, health care distribution often is portrayed as requiring choices in which some individuals are treated less well, or even sacrificed, so that others may benefit. So in the circumstances in which we really live, some kinds of patients will receive better treatment than others. Some hospitals and health care institutions will get more funding than others. Thus there may be a deep divide between the ideals that shape theories of justice of Part I, and the ragged realities of the lived world that are reflected in the attempts in Part II to address justice in health care rationing. Further, the ambitious aims and intricate allocation schemes presented in the first two sections of this book may seem not to touch or be touched by the realities of the groups discussed in Part III, or at least may not give us as much insight as

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we need to bring these groups’ members within the embrace of health care justice. These incongruities may be thought to suggest that theorizing about justice is not relevant to or helpful in producing just practice. But this ignores the distinction between ideal theory and what has come to be known (following Rawls) as partial-compliance theory. The former—ideal theory—provides an account of what justice should be in a world in which all institutions and the practices are just. The latter—partial compliance theory—offers approaches for progressing toward justice under conditions of injustice. Unlike ideal theory, which concerns itself with what should be when we realize all of justice’s aims, partial-compliance theory is centered on what to do when justice is not achievable for all. The central challenge for partial-compliance theory is what to do about justice in an imperfect world. Even those who agree on the same ideal theory may disagree about what the theory requires here and now. Discord is especially agonizing when the pursuit of greater justice for one group may reinforce or exacerbate existing injustices for another. In Part III, the authors look closely at groups of people whose compromised social status has led to difficulties in their obtaining care for medical conditions. Most explore in nuanced ways how a group’s being so distanced from social influence and political power, or being stigmatized as dangerous or burdensome, directly or indirectly affect members’ health. Taken together, the chapters present a picture of a multiplicity of connections through which social injustice has damaged our civic and commercial interactions generally, and also led to failures in our medical system. Taken separately, the chapters follow up on their diagnoses of such wrongs by arguing for sometimes familiar but in other cases innovative methods of rectification. The chapters in this section pose some of the hardest challenges concerning justice in health care. They consider the claims and needs of the poor, racial minorities, women, LGBT people, individuals with chronic illnesses and disabilities, children, the aged, veterans, and prisoners, all of whom continue to be disadvantaged by social organization generally and not in regard to health care alone. The discussions are propelled by a profound sense of human needs for health care. Troubling questions of justice arise in regard to such groups: what do theories of justice say about the claims of politically powerless and socially

excluded people? Do they have special health care needs and on what basis, if any, are health care systems obligated to be responsive in serving special needs for care? Do traditional theories of distributive justice even recognize these needs? Many of the chapters deal with problems that reflect groups’ painful experiences of deprivation and denial beyond the lack of medical services. They also testify to frustration with the current conceptual and practical limitations of medical care. Should health care systems rectify health disparities traceable to inequities of power and wealth and compensate for long histories of unfairness and maldistribution? This question, raised in many of the chapters, acknowledges the challenges of responding to social status differences in ways that maintain justice for all the parties involved. The first chapter in this section makes a case for people whose unfortunate socioeconomic position appears to be directly implicated in the special difficulties they experience in acquiring adequate health care and achieving good health. Patricia Smith’s chapter, “Justice, Health, and the Price of Poverty,” deals systematically with questions about financial resources. Smith shows us how intimately poverty, ill health, and lack of health care are connected. Poor health both results from, and exacerbates, poverty. This state of affairs is not only inhumane and unjust, it is inefficient. Because our society commodifies health, high prices can be set for access to the means of maintaining it. “Medicine should be dedicated to health without qualification,” Smith urges. Neither poverty, nor age, nor race, nor gender, nor type of disability should disqualify individuals from equitable access to effective means of caring for their health and the health of their families. African-Americans’ experiences of mistreatment by medical professionals have left them distrustful of the health care system. In the next chapter, “Racial Groups, Distrust, and the Distribution of Health Care,” Howard McGary examines the ways race should and should not affect the delivery of health care benefits in a system that is just. To show how race does so, he points out disquieting similarities between the infamous Tuskegee study of half a century ago and contemporary public health efforts directed at reducing HIV/AIDS infection in the AfricanAmerican community that may detract from the effectiveness of these programs. McGary points out that a just society’s stability may require resource allocation for the purpose of demonstrating how

Medicine and Social Justice just the system is. Further, patients’ trust in their physicians is important to good health care and absence of trust is a disadvantage in obtaining effective health care. McGary then offers a series of remedies. In an illustrative postscript, he considers Michelle Obama’s initiative to reduce the incidence of obesity in U.S. children and argues that, given the history of anti-black racism in American society, African-Americans still have special reasons to distrust programs that would change their eating habits and lifestyles. National efforts to combat obesity must be cognizant of this concern. Social transformation is also the goal of Rosemarie Tong’s chapter, “Gender Justice in the Health Care System: An Elusive Goal.” Tong begins her discussion of gender bias in the health care system by citing a report of the U.S. Institute of Medicine to the effect that, on the whole, health disparities are “due to characteristics related to patients’ gender, race, ethnicity, class, and so forth. Such disparities are thought to be ‘not only unnecessary and avoidable’ but also ‘unfair and unjust.’” Tong applies five accounts of gender justice—the sameness approach, the difference approach, the dominance approach, the diversity approach, and the dependency approach—to gender-based disparities in the health care system. She describes the health care inequities that command the spotlight for each approach. Although the first four approaches have contributed to our understanding of gender justice, they do not illuminate elderly women’s health-related issues. To secure women against being treated less well than men, Tong advocates adopting a new concept centered on interdependency and an ethics of care. She urges that justice theory focus on vulnerability and acknowledge that women are specially disadvantaged because of their role as caregivers for vulnerable people who cannot care for themselves. Timothy F. Murphy addresses the reasons that barriers to obtaining optimal health care are imposed on sexual minorities. His chapter is titled “Justice for Gay and Lesbian People in Health Care.” Same-sex partners may not have legal standing to assume the role of surrogate or even to visit a hospitalized partner. In regard to distributive justice, LGBT people face inequitable difficulties in accessing various forms of payment for medical treatment. Another important issue is whether it can be just for medical professionals to treat people with the aim of reorienting their sexual orientation. Murphy also explores whether

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medical professionals can justly refuse to provide health care services to patients on the basis of their sexual orientation. In principle, he argues, sexual orientation is morally irrelevant in the delivery of medical care, a realization that is good for practitioners and patients alike. Nearly half of the adults in the U.S. are living with a chronic illness or disability, and about 75% of health care costs are due to such conditions. But the bioethics literature focuses mainly on patients with acute medical needs and has not adequately addressed this other, more numerous group. In “Health Care Justice for the Chronically Ill and Disabled: A Deficiency in Justice Theory and How To Cure It,” Anita Silvers examines proposals about what might make justice for chronically ill and disabled people special. Idealized political theory typically has dismissed such individuals on the presumption that their capacity to contribute is compromised by their health states and thus has relegated them to the margins of justice. But their nonmedical needs are similar to those of acutely ill patients. The distinctive difference about chronically ill and disabled people is simply their lengthy—and likely lifelong—involvement with the health care system. Silvers points out that moving disabled and chronically ill people into the spotlight of justice brings up the question of how much health care over a lifetime each person is owed. To weigh answers to this question fairly, it is important to resist biased assessments of the value of disabled and chronically ill people’s lives. Moral and political claims to health care services on behalf of individuals with severe cognitive disabilities are often based on their relationship to family members and the needs of their caregivers. Eva Feder Kittay’s discussion in “Getting from Here to There: Claiming Justice for the Severely Cognitively Disabled” emphasizes the importance of providing resources and other protections for cognitively disabled people and contends that doing so is central to adequate principles of justice. According to Kittay, an inclusive account of justice should not be based on properties intrinsic to moral personhood, as many well-known theories of justice are. Nor is the principle of equality effective in securing distributive justice for individuals with severe cognitive disabilities. But there are species-specific differences that matter, one of which is that humans share in caring for our young. Surviving the long periods of human dependency requires a species whose members are disposed to social cooperation. Thus Kittay

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construes the existence and shape of human society itself as being centered on dependent humans, which she takes as a conclusive reason for adopting a public ethic of care. In “Cognitive Surrogacy, Assisted Participation, and Moral Status,” David Wasserman and Jeff McMahan explore the limitations of surrogate judgment exercised on behalf of individuals with radically limited cognitive capacity. Article 12 of the U.N. Convention on the Rights of People with Disabilities—discussed by Stein, Lord, and Tolchin in their chapter in Part II—warns against this practice where substituted judgment is permitted as a standard for surrogacy. Wasserman and McMahan believe that assisted decision-making valuably helps many individuals with cognitive limitations secure their political rights and express their autonomy. But surrogacy cannot establish political equality for individuals lacking selfconsciousness and practical rationality. Nor can moral status attributions that invoke grounds other than participation in human social life establish claims made on their behalf to the full array of social and political rights. Even though our children are our future, Loretta M. Kopelman points out in “Health Care Reform and Children’s Right to Health Care: A Modest Proposal” that they often do not receive even the basic health care that adults in similar circumstance enjoy. Kopelman opposes medical services rationing on the basis of age that is disadvantageous to children. But arguments employed to justify caring for the health of needy older citizens, such as sympathy and empathy for their plight, best interest protection, social utility and efficiency, and equal opportunity, apply similarly to needy children. Her modest “fair share” proposal is that, as a prima facie duty, publicly funded health care goods, services, and benefits be provided for children on at least as favorable a basis as to adults. In the U.S., Medicare is available to adults once they reach age 65; based on their age children should also be eligible for a (different) array of federal- or state-supported programs as well as heavily subsidized additional insurance. Kopelman extends her fair-share approach to the difficult issue of children’s participation as research subjects. She goes on to explain that children’s participation may be required to secure the benefits of medical research for their age group. Ian R. Holzman presents an overview of health care allocation issues and ethical problems relating to newborns in his chapter, “Premature and Compromised Neonates.” Unlike Kopelman’s

emphasis on the similarities of situation in regard to the justice of providing health care for children and for adults, Holzman is concerned with the distinctiveness of the neonate population and thus with the resulting ethical complexity of both personal and societal decisions about them. Neonatal intensive care is expensive, and decisions about treatment provision or limitation respond to many considerations: family’s desires, urgency, need, cost containment. Because there is a higher incidence of prematurity among the urban poor, particularly among the urban AfricanAmerican poor, any limitation on treatment for seriously compromised neonates would fall disproportionately on that population. Holzman’s chapter is subdivided to address three different kinds of challenges in neonatology: the lower limits of viability, discontinuing intensive care support for a neonate, and the problems associated with infants having congenital anomalies. Holzman maintains that U.S. laws mandating life-saving treatment for infants regardless of their risk of disability conflict with the best-interest standard and with consideration for family desires and the burdens imposed by a disabled child. Nevertheless, he thinks, physicians should engage families in full and open discussions of each child’s possible future uncolored by medical biases. Kopelman and Holzman are concerned about the health care needs of those at or near the start of life. In “Age Rationing Under Conditions of Injustice,” Leslie Pickering Francis writes about the elderly, who are near the end of life. In the eyes of some policymakers and bioethicists rising health care costs, sinking public and private financial resources, and the graying of the population recommend rationing health care resources on the basis of old age. The fragmented U.S. health system thus pits populations against each other in competition for resources—for instance, poor children and the poor generally against elderly people who need Medicaid to pay for nursing home care. Francis argues that, given the current context in which imperfections of justice are rife, these familiar reasons either simply do not support age rationing of medical services or do so only in virtue of contingent connections. Attention to fair opportunity suggests that considerations other than age—such as providing kinds of care that assist self and community care and thereby reduce institutionalization—may be more effective and appropriate for saving resources. Like the elderly, veterans sometimes are presumed to have special claims on health care based

Medicine and Social Justice on their past contributions to society. An underexplored question in the health care justice literature is what the health care system owes to individuals who have returned from active military service to reenter civilian life. This is a pressing question, not the least because, as Fritz Allhoff observes in “Health Care for Soldiers,” the risks soldiers face are precisely those that health care aims to rectify. Allhoff pursues various issues that arise regarding the medical services owed to those who have defended their country by taking up arms. He probes each issue from the perspectives of various theories of justice. For both pragmatic and moral reasons, he argues, the civilian health care system should not disregard patients’ past military status. Pragmatically, military morale will be higher if those on whom we rely to fight can have confidence in society’s commitment to rectify or mitigate resulting injuries. Morally, familiar principles of justice rule out abandoning those we have sent into harm’s way on our behalf, even if—indeed, especially if—they have assented to deployment. In the final chapter of this section, “Social Justice and Correctional Health Services,” Kenneth Kipnis maps the obligations of justice as they pertain to providing the incarcerated with health care. What access to this societal good do prisoners, who by their situation cannot participate in market-based distributive schemes to get medical treatment, deserve? Kipnis reviews precedents that establish, as a matter of U.S. law, wardens’ obligations to be responsive to inmates’ health care needs. He then lays out the special dimensions of the responsibilities—to patients, to public health, and to the institution and its personnel— of professionals who provide medical services within correctional facilities. Finally, he considers some endemic issues about justice for prisoners: social and legal disabilities imposed by incarceration, devaluation of the incarcerated, and the duty to refrain from placing people in systems that cannot be fairly and effectively managed. Despite the economic burden of providing medical services to a growing, aging prison population, Kipnis argues that people who are incarcerated must be provided with health care.

PA R T I V. D I L E M M A S A N D PRIORITIES Idealized theories of justice offer general guidance for policy within a society. When real-world contingencies require sorting out conflicting claims about medical proprieties, however, additional

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debate can arise even among adherents who share a theoretical view. The previous section’s chapters illustrate conflicts about the equitable distribution of health care based on social group identity. Difficulties related to health care disparities suffered by some groups of people in comparison with others are by no means the only controversies about justice that roil the provision of medical services today. Therefore the chapters in Part IV explore other kinds of disagreements—some about fair procedures and some about fair distributions—about justice in medicine. Health care providers operate in complex systems, but individual interactions between health care professionals and patients remain at the heart of ethical conduct in medicine Their practices are affected by a variety of institutions, some of which are components of the health care system, while others exert force from the greater society beyond. It would be naïve to ignore the influences of the legal system, the government’s pursuit of the collective public interest, and both nonprofit and for-profit corporations. In addition, advances in biomedical science and the measures that society implements in response to them raise new questions of justice, both about the protections and obligations of the parties involved in research, and about responsibilities for delivering the benefits of medical progress to recipients who will be helped by them. Further, crises and challenges, ranging from epidemics to political disagreements about health care reform, exacerbate the system’s strains, creating cracks through which needy individuals fall. The chapters in this section illuminate some of these problems. The first four essays are concerned with debates about the kinds of services that insurance schemes—public and private—should cover. The next five all bear on issues related to the advancement of biomedical science and the application of new knowledge to achieve social and personal benefits. Three of them raise issues about research and its products that concern health care professionals, even if the problems discussed do not now command much attention from the general public. The subjects of the next two chapters—the prolongation of life in individuals with profound neurological damage and decisions about allocation of scare organs for transplant— have been widely publicized as subjects of divisive debates. The final two chapters in Part IV deal with conflicts that result from the interaction of the health care system with forces from beyond it—in

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introduction

these cases, catastrophic events and the law. Manmade and natural disasters such as 9/11, Hurricane Katrina, and epidemics such as the near pandemic of severe acute respiratory syndrome (SARS) in 2002/03, raise vexing questions about responsibilities and allocation of resources for preparation, as well as anguished questions about whom to help under such pervasive emergency conditions. The legal system currently is the route through which people who believe themselves to have been wronged by medical malpractice seek redress, but there is profound disagreement between medical and legal perspectives about whether contemporary tort law promotes or undermines justice. The ongoing health care funding debate in the U.S. highlights the issue of health insurance. Specifically, it raises questions of which health problems and which treatments should be included in coverage and which should be exempted. In his chapter, “Are Preexisting Condition Exclusion Clauses Just? Lessons from Causal and Ethical Considerations Regarding Genetic Testing,” Robert T. Pennock takes up the health-reform issue that probably has the broadest public support, the prohibition on denying coverage for preexisting conditions. Pennock is especially concerned with coverage for conditions associated with genetic dispositions. The Genetic Information Nondiscrimination Act of 2008 (Pub.L. 110–233, 122 Stat. 881, enacted May 21, 2008, GINA), is designed to prohibit the improper use of genetic information in health insurance and employment. GINA prohibits group health plans and health insurers from denying coverage to a healthy individual, or from charging that person a higher premium based solely on a genetic predisposition to developing a disease in the future. The broader health care reform of the Patient Protection and Affordable Care Act (Pub. L. 111–148, enacted March 23, 2010, PPACA) requires the private health insurance market to provide coverage for individuals with preexisting conditions. Consequently, Pennock considers whether preexisting conditions—genetic or otherwise—should be grounds for denying someone health insurance. David Ozar and James Sabin illuminate the inequitable policies that disadvantage people needing “Oral and Mental Health Services.” Neither private nor public coverage typically offers individuals with mental or dental pathologies the same benefits of mitigation or cure that are offered to people with acute physical health illness or injury. Arguing that insurers should

respond to dental and mental health needs on a par with others, Ozar and Sabin hypothesize about why these health needs are assigned lower priority. They also describe the importance of good dental and mental health, and make vivid the consequences of depriving people of treatment for dental and mental health needs. In her chapter “Limits of Science and Boundaries of Access: Alternative Health Care,” E. Haavi Morreim takes up the question of whether alternative medicine should be covered by health insurance. She identifies the (sometimes) unfounded bias that paints all alternative medicine as quackery and the (sometimes) unwarranted confidence that paints all conventional medicine as science. Morreim argues that in order to respond appropriately to the health-related needs of patients, health care financing plans must avoid a double standard by using the same criteria for evaluating conventional and alternative modalities. A just system should promote good care within prudent limits by avoiding waste and harm, and by requiring empirical substantiation of the value of all interventions, conventional as well as alternative ones. Some people who provide care for those who are ill do so professionally; others do it out of love or obligation to a family member. James Lindeman Nelson’s chapter, “Just Expectations: Family Caregivers, Practical Identities, and Social Justice in the Provision of Health Care,” speaks about the importance of increasing both respect and material resources for individuals who assume non-professional caregiving roles. Nelson describes the kinds of vulnerabilities that families develop when responsibility for ill or disabled family members falls on them. He argues that communities have a duty of distributive justice to deploy resources for the support of families with these special needs. As Nelson sees it, this obligation is at least as strong a requirement of justice as the requirement for providing health care itself. The most basic issue in regard to the advancement of biomedical science and the medical and social uses of new knowledge is how human subject research fits into the social fabric. In their chapter “Justice in Research on Human Subjects,” David Buchanan and Franklin G. Miller note that despite increasing institutional rules to ensure ethical conduct in human subject research, controversies continue. Some are propelled by advances in science, and others arise from a broadening sense of global responsibility. The authors’ thorough treatment of the topic begins with a review of prominent frameworks

Medicine and Social Justice and key theories of justice, and then draws conclusions from considerations of justice at the institutional level, at the level of researchers, and at the level of research participants. Leonard M. Fleck’s chapter, “Just Genetics: The Ethical Challenges of Personalized Medicine,” moves the discussion on to examine the specific impact of some new medical knowledge on the obligations of medical professionals to their patients. Advances in genomic science will allow clinicians to know which patients are likely to have a significantly beneficial response to a particular medication and which will not. Should patients be denied access to pharmaceuticals, or be assigned lower priority, because current genomics predicts a lower probability of their benefiting from it? Fleck examines whether, as a matter of justice in resource allocation, such information should be used as a basis for providing or withholding a treatment from patients who want it. Jeffrey R. Botkin, Rebecca A. Anderson, and Erin Rothwell discuss the practice of newborn screening. Their chapter, “Expanded Newborn Screening: Contemporary Challenges to the Parens Patriae Doctrine and the Use of Public Resources,” explains how nearly every newborn in the U.S. is screened for certain genetic diseases. This practice was designed to identify children with serious and treatable conditions that respond to timely treatment. But some programs screen for conditions for which no current treatment exists, and in some states, even when effective treatment exists, there is no provision for affected children to receive the necessary care. A further problem of justice is that parents are not adequately informed about what is being done and their consent for screening is rarely obtained. Botkin, Anderson, and Rothwell recommend changes in how these programs are administered that would promote justice and improve transparency and trust in the health care system. Advances in neurology enable detection of the presence or absence of activity in different parts of the brain. Advances in medical care have enabled doctors to sustain the lives of patients whose neurological damage prevents consciousness. These advances have, in turn, raised questions about what sort of care is owed to such individuals, for how long, and why. Michael Nair-Collins’s and James M. Hitt chapter, “Justice, Profound Neurological Injury, and Brain Death,” examines these issues by providing detailed information about the science and what it reveals. They discuss the social and ethical implications of sustaining a patient like

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Terri Schiavo, including the justice of abiding by or rejecting the values of people who do not accept the brain death standard. Advancing science that has improved the success of organ transplantation also creates an increased demand for life-saving organ transplantation. Systems for allocating organs for transplantation vividly exemplify a wide-ranging problem of justice. In transplantation of vital solid organs, the scarcity of what is to be distributed is glaringly obvious while the political forces that affect allocation policy are hard to see. The injustices that result are even harder to discern. In their chapter, “Justice in Transplant Organ Allocation,” Rosamond Rhodes and Thomas D. Schiano explain the current national system for allocating transplant organs in the U.S. and discuss several additional complex factors. Despite the dramatic disparity in waiting times for transplantation, and the disparate treatment for different groups of people who need a transplant organ, the United Network for Organ Sharing system espouses its commitment to justice, equity, and efficacy. Rhodes and Schiano argue that a just system should attend to the most important concerns of those whose interests are directly relevant. They maintain that other agendas have to be identified, discounted, and prevented from intruding on the design and implementation of organ allocation policy. In addition, those who assess systems for the allocation of scarce medical materials need to be alert, vigilant, and wary of how statements of goals can disguise injustice and make it look like justice. As political pressures influence the organ allocation system, other events and practices from beyond medicine intervene as well. With the specter of pandemics and disasters such as 9/11, Hurricane Katrina, vaccine shortage, bird flu, SARS, and H1N1 in mind, Leslie Pickering Francis and Margaret Pabst Battin explain how we are simultaneously both victims of disease and vectors of disease. In their chapter, “Justice in Planning for Pandemics and Disasters,” they go on to discuss what justice requires in regard to both preparation and response. An especially vexing question is whether scarce medical resources should be distributed preemptively, especially if they are never used. Yet, when investments in preparedness are not adequately supplied with resources, the cost in lives and suffering can be significant. The final chapter in this section is provocatively titled “Justice Has (Almost) Nothing to Do with It: Medical Malpractice and Tort Reform.” David A. Hyman and Charles Silver consider the

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costs and contributions of the current legal framework for seeking justice to remedy medical malpractice. Those who support legislative reform focus their attention on the high payouts that some claimants receive, the high insurance rates that practicing physicians pay, and the impact of these rates on whether physicians decide to leave practice. Hyman and Silver cite data collected in Texas

and elsewhere to contend that these claims are not supported by the evidence. They go on to explore problems with the current malpractice system, including injustices to individuals who are unable to mount effective litigation when they are victims of malpractice, and injustices to plaintiffs whose suits succeed but who do not receive compensation sufficient to meet their injury-related needs.

PART I Theoretical Foundations

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1 Justice, Health, and Health Care NORMAN DANIELS

THREE QUESTIONS OF JUSTICE A theory of justice for health and health care should answer this fundamental question: what do we owe each other in the protection and promotion of health? I divide this question into three subsidiary questions. First, is health special? Is it morally important in ways that justify (and explain) the fact that many societies distribute health care more equally than many other social goods? Second, when are health inequalities unjust? After all, many socially controllable factors besides access to health care affect the levels of population health and the degree of health inequalities in a population. Third, how can we meet competing health needs fairly under reasonable resource constraints? In earlier work, I thought the answer to the first question implied answers to the other two, but I now think they are independent. About 30 years ago, I answered the first question by claiming that health care, which I broadly construed to include medical care and traditional public health and which I (mistakenly) understood to be the main determinant of population health, is of special moral importance because of its impact on opportunity (Daniels 1981, 1985). Specifically, the central function of health care is to maintain normal functioning. By impairing normal functioning, disease and disability (or more broadly pathology) typically restrict the range of opportunities open to individuals. Health care thus makes a distinct but limited contribution to the protection of equality of opportunity. During the past 30 years, a major literature has emerged exploring the social determinants of health. We have long known that the richer people are, the longer and healthier their lives. The powerful findings of the past three or so decades, however, have deepened our understanding of the factors at work producing these effects on population health

and the distribution of health within populations. For example, we now have strong evidence that health inequalities are not the result of poverty or deprivation alone, but occur across the socioeconomic spectrum and are added to by racist and other exclusionary practices. Since social policies— not laws of human nature or economic development—are responsible for the social and economic inequalities that produce these health effects, we are forced to look upstream from the point of medical delivery and ask about the fairness of the distributions of these goods. I shall later suggest that Rawls’s theory of justice as fairness, quite serendipitously, contains principles that give a plausible account of the fair distribution of those broader determinants, thus providing an answer to the second question (Daniels, Kennedy, & Kawachi 1999, 2000). During the 1980s, I became aware that my account of just health care, like other general theories, failed to give specific guidance, or gave implausible answers, to certain questions about rationing (Daniels 1993). Though philosophers may work out middle-level principles that can supplement general accounts of distributive justice and solve these unsolved rationing problems, it is unlikely that there will be consensus on them in the foreseeable future. Distributive issues remain highly contested. In the absence of consensus on distributive principles, we need a fair process to establish legitimacy (and arguably achieve fairness) for critical resource-allocation decisions. My account of fair process for addressing these distributive issues is called “accountability for reasonableness” (Daniels & Sabin 1997, 1998a, 2008). It is an attempt to connect views about deliberative democracy to decision-making at various institutional levels, whether public or private, in our complex health systems. Because I (mistakenly) used to think that health care was the main determinant of population

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health, and because I also thought (I think correctly) that health care is of special moral importance because of its impact on opportunity, I believed there was a quick and easy answer to the second and third questions. We could, I thought, judge any health inequality unjust if it resulted from unequal access to health care, and we could guide fair allocation by determining the impact of specific forms of health care on opportunity. But since, I learned, population health is the result of various factors, not just health care, we need a different answer to the question about the injustice of health inequalities, and since we lack principles that tell us when one intervention better protects opportunity than another, we need a different answer to the third question. My goal in this essay is to sketch the central ideas behind my approach to all three questions, to suggest how they all fit together, and to state what they together imply about what we owe each other in health policy. Detailed arguments can be found in the references. Answering all three questions, and not simply the first, gives a fuller demonstration that justice is good for our health.

W H AT I S T H E S P E C I A L M O R A L I M P O R TA N C E O F H E A LT H ? The central moral importance of health, for purposes of justice, derives from the way in which protecting normal functioning1 contributes to protecting opportunity. Specifically, meeting health needs in order to keep people close to normal functioning preserves for people their ability to participate in the political, social, and economic life of their society. It sustains them as fully participating citizens—normal collaborators and competitors—in all spheres of social life. To the extent that health care (construed broadly as above) protects, promotes, and compensates for losses of normal functioning, it protects individuals’ fair shares of the normal range of opportunities. This normal opportunity range is societally relative, depending on various facts about its level of technological development and social organization. Individuals’ fair shares of that societal normal opportunity range are the plans of life it would be reasonable for them to choose (given their talents and skills) were they not ill or disabled and were their talents and skills suitably protected against mis- or underdevelopment as a result of unfair social practices and the consequences of socioeconomic inequalities. Individuals generally choose to develop only some of their

talents and skills, effectively narrowing their range of opportunities. Maintaining normal functioning preserves, however, their broader, fair share of the normal opportunity range, giving them the chance to revise their plans of life over time. It thus protects the opportunities they can reasonably choose to exercise. In Sen’s (1980, 1992) terminology, it protects their capabilities. This relationship between health care and the protection of opportunity suggests that the appropriate principle of distributive justice for regulating the design of a health care system is a principle protecting equality of opportunity. That is, if we have social obligations to protect opportunity, we have a framework for protecting health. Any theory of justice that supports a principle ensuring equal opportunity (or giving priority to improving the opportunities of those who have the least opportunity) could thus be extended to health care. At the time I proposed this approach (Daniels 1981), the best defense of such a general principle was to be found in Rawls’s theory of justice as fairness (Rawls 1971)—and my strategy was to borrow justification from that theory for such a principle. In response to Rawls’s work, some more recent egalitarian or prioritarian (Parfit 1997) views also suggest that justice requires that we protect opportunities or capabilities, and I borrow similar support from them (though there may also be some points of disagreement with them— see Daniels 2008a). I return shortly to these other views. Consider first one of the principles that Rawls’s social contractors would choose as a principle of justice: it assures them fair equality of opportunity in access to jobs and offices. This principle not only prohibits discriminatory barriers to such access, but requires positive social measures that correct for the negative effects on opportunity, including the under-development of skills and talents, that derive from allowable inequalities as well as from a legacy of unfair social practices (e.g., a legacy of gender or race bias). Such positive measures would include among other things the provision of public education and other early childhood interventions that improve opportunity by more equitably developing talents and skills. Rawls, however, had deliberately simplified the formulation of his general theory of justice by assuming that people are fully functional over a normal lifespan. His social contractors thus represented people who suffered no disease or disability or premature death. By subsuming the protection

Justice, Health, and Health Care of normal functioning under (a suitably adjusted version of) his principle ensuring fair equality of opportunity, I showed how to drop that idealization and apply his theory to the real world of illness, disability, and premature death (Rawls 1993 supports this approach). The fair equality of opportunity account does not use the impact of disease or disability on welfare (desire satisfaction or happiness) or utility as a basis for thinking about distributive justice. One might have thought, for example, that what was special about health care was that good health was important for happiness. But illness and disability may not lead to unhappiness, even if they restrict the range of opportunities open to an individual. Intuitively, then, there is something attractive about locating the moral importance of meeting health care needs in the more objective impact on opportunity than in the more subjective impact on happiness (cf. Hausman 2006 for a similar view). This analysis fits well with and extends Rawls’s (1971) non-welfarist account of primary social goods. For purposes of justice, Rawls argued, we should not seek to determine what we owe each other by measuring our satisfaction or welfare, but we should measure our levels of well-being by publicly accessible measures. For Rawls this means an index of primary social goods that includes rights and liberties, powers and opportunity, income and wealth, and the social bases of selfrespect (these are the all-purpose means that meet the needs of free and equal citizens). My account includes the protection of normal functioning within the scope of the primary good of opportunity. Drawing on insights from Scanlon’s (1975) discussion of the “urgency” of meeting some “preferences” to relieve decrements in well-being but not others (and agreeing with his later rejection of an appeal to a global measure of welfare in Scanlon 1998), my account explains why we believe we have obligations to assist others in meeting health care needs but not necessarily to provide them with other things they say they need to make them happier. Consider an actual issue where the contrast is important. People with some longstanding disabilities may rank their welfare higher than would other people who are merely imagining life with such disabilities (see Daniels, Rose, & Zide 2009 for an argument that this adaptation effect varies across conditions). Perhaps people with (some) disabilities accommodate to them by adjusting their goals and expectations. Even if they are more satisfied with their lives than people without

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disabilities might expect, there is an objective loss in their range of capabilities and opportunities, and that loss is captured by the appeal to a fair share of an opportunity range. The fair equality of opportunity account thus avoids a troubling feature that haunts cost-utility analysis and its treatment of such disabilities.2 Health care is of special moral importance because it helps to preserve our status as fully functioning citizens. By itself, however, this does not distinguish health care from food, shelter, and rest, which also meet basic needs of citizens by preserving normal functioning. Since medical needs are more unequally distributed than these other needs and can be catastrophically expensive, they are appropriately seen as the object of private or social insurance schemes. It might be argued that we can finesse the problem of talking about the medical needs we owe it to each other to meet, if we ensure that people have fair income shares from which they can purchase such insurance. We cannot, however, define a minimal but fair income share unless it is capable of meeting such needs (Daniels 1985, 2008a). Some economists and philosophers may object that giving special status to health insurance will be “paternalistic” and inefficient3 since some people prefer to trade income for things other than health care. Our social obligation, however, is to provide institutions (such as social insurance or subsidies to buy private insurance) that protect opportunity, not to maximize aggregate welfare or achieve efficiency above all else. The principles of justice defended here thus depart from utilitarian goals. The elderly might object that an opportunitybased account of just health care will leave them out in the cold, for their opportunities might seem to be in the past. We can avoid this conclusion by not biasing our allocations in favor of one stage of life and instead considering the age-relative opportunity range. Still, treating people differently at different stages of life—for example, saving resources from one stage of life for use at another— does not produce inequalities across persons in the way that differential treatment by race or gender does. We all age—though we do not change gender or race. Fairness between age groups in designing a health care system is appropriately modeled by the idea of prudent allocation over a lifespan (Daniels 1988; for some qualifications, see Daniels 2008b). Under some conditions of scarcity, this implies that “pure” rationing by age (where age is not proxy for other traits) is permissible.4

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One controversial implication of my approach provides a way to contrast the fair equality of opportunity view with some alternative egalitarian accounts that nevertheless emphasize protection of opportunity or exercisable opportunities (i.e., capabilities). In aiming at normal functioning, my approach views the prevention and treatment of disease and disability as the primary rationale for what we owe each other by way of assistance in cooperative health care schemes (Buchanan et al. 2000). Enhancing otherwise normal conditions—even when they put us at a disadvantage compared to others through no fault of our own—is then viewed as “not medically necessary.” For example, there is support in my view for the common insurance practice of covering synthetic growth hormone treatment for very short children who have growth hormone deficiencies, but not covering it for equally short children who are otherwise normal. The objection to my view is that this coverage policy seems to place too much weight on the presence of disease and disability and too little on what really should matter to an account aiming at protecting opportunity—namely, reducing the disadvantage that extreme shortness brings. This objection might be voiced by proponents of “equal opportunity for welfare or advantage” (Arneson 1988; GA Cohen 1989), a view now commonly called “luck egalitarianism” (Anderson 1999). This view claims that anyone who suffers bad “brute luck”—a deficit in welfare or advantage that is no fault of his or her own—has a claim on others for assistance or compensation. In contrast, bad “option luck,” the result of the choices we make or are responsible for making, does not give rise to claims on others. A disadvantage in talents or skills or even height that is not our fault thus provides a basis for claims on others for compensation or possibly enhancement. I argue elsewhere (Daniels 1990, 2000a, 2010) that this view gives too much centrality to choice or responsibility, a centrality we do not and should not recognize when we want to protect our capabilities as citizens in a democratic society; there are good policy objections to it as well (Sabin & Daniels 1994). But the objection is particularly problematic given the origin of luck egalitarianism as a response to the objection that we should not aim to equalize welfare or we will hold ourselves hostage to those who develop expensive tastes. If any deficit in a trait that an individual treats as disadvantaging gives rise to claims on others, then we are hostage to the expensive tastes some people have for

specific talents or skills (or appearance, since we may then owe them cosmetic surgery). A similar objection might be raised from a perspective grounded in the importance of positive liberty or freedom, thought of as our capability to do or be what we choose (Sen 1980, 1992, 1999). The claim is that we should not necessarily be focused on a concept such as disease or disability but rather on whether individuals have the appropriate set of capabilities to do or be what they choose. Perhaps the very short child who is otherwise normal still lacks a key trait or capability that we should address. If we consider more carefully, however, when differences in capabilities give rise to claims on others, then support for treating the short but normal child may disappear. Sen (1992) himself notes that many differences in capabilities will be “incommensurable” since there will be no consensus about whether a person is worse off than others (as does J Cohen 1995). The short but normal child, for example, may have an excellent temperament or wonderful social or cognitive skills. The cases where there is likely to be agreement that someone is clearly worse off in capabilities are likely to be captured by the categories of (serious) disease and disability. In practice, then, this view converges much more with the view I defend than it appears at first.5 These alternative views obviously deserve more careful discussion than I can offer here. Still, my answer to the original question, that the special moral importance of health care derives from the protection of our opportunities, remains a defensible member of a family of views connecting health care to our opportunities and capabilities (Daniels 2008a, Ch. 2), and so I borrow justification from them as well as from Rawls for a general principle ensuring protection of opportunity. Moreover, its practical implications converge more on many issues with those of its cousins than is apparent from the family quarrels among them.

W H I C H H E A LT H I N E Q UA L I T I E S ARE UNJUST? Universal access to appropriate health care—just health care—does not break the link between social status and health that I noted earlier, a point driven home in studies of the effects on health inequality of the British National Health Service (Black et al. 1988; Acheson et al. 1998; Marmot et al. 1998, Marmot 2004) and confirmed by work

Justice, Health, and Health Care in other countries as well (Evans, Barer & Marmor 1994, Kawachi, Kennedy & Wilkinson 1999, Evans et al. 2001, Kawachi & Kennedy 2002, WHO Commission on Social Determinants, Final Report 2008). Our health is affected not simply by the ease with which we can see a doctor—though that surely matters—but also by our social position and the underlying inequality of our society. We cannot, of course, infer causation from these correlations between social inequality and health inequality (though later I explore some ideas about how the one might lead to the other). Suffice to say that, while the exact processes are not fully understood, the evidence suggests that there are social determinants of health (Marmot 2004). If social factors play a large role in determining our health, then efforts to ensure greater justice in health outcomes should not focus simply on the traditional health sector. Health is produced not merely by having access to medical prevention and treatment, but also, to a measurably greater extent, by the cumulative experience of social conditions over the course of one’s life. By the time a 60-year-old heart attack victim arrives at the emergency room, bodily insults have accumulated over a lifetime. For such a person, medical care is, figuratively speaking, “the ambulance waiting at the bottom of the cliff.” Much contemporary discussion about reducing health inequalities by increasing access to medical care misses this point. Of course, we still want that ambulance there, but we should be looking as well to improve social conditions that help to determine the health of societies. As I noted earlier, Rawls’s theory of justice as fairness was not designed to address issues of health care. He assumed a completely healthy population, and argued that a just society must assure people equal basic liberties, guarantee that the right of political participation has roughly equal value for all, provide a robust form of equal opportunity, and limit inequalities to those that benefit the least advantaged. When these requirements of justice are met, Rawls argued, we can have reasonable confidence that others are showing us the respect that is essential to our sense of self-worth. The fair terms of cooperation specified by these principles promote our social and political well-being. The conjecture I explore is that by establishing equal liberties, robustly equal opportunity, a fair distribution of resources, and support for our selfrespect—the basics of Rawlsian justice—we would go a long way to eliminating the most important

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injustices in health outcomes. To be sure, social justice is valuable for reasons other than its effects on health (or Rawls could not have set aside issues of health when arguing for justice as fairness). And social reform in the direction of greater justice would not eliminate the need to think hard about fair allocation of resources within the health care system. Still, acting to promote social justice is a crucial step toward improving our health because there is this surprising convergence between what is needed for our social and political well-being and for our mental and physical health. To see the basis for this conjecture about Rawlsian principles, let us review very briefly some of the central findings in the recent literature on the social determinants of health. If we look at cross-national studies, we see that a country’s prosperity is related to its health, as measured, for example, by life expectancy: in richer countries, people tend to live longer. But the relationship between per capita gross domestic product (GDPpc) and life expectancy levels off at around $8,000 to $10,000; beyond this threshold, further economic advance buys virtually no further gains in life expectancy. This leveling effect is most apparent among the advanced industrial economies. Nevertheless, even within this relationship, there are telling variations. Though Cuba and Iraq were equally poor in 1995 (each had a GDPpc of about $3,100), life expectancy in Cuba exceeded that in Iraq by 17.2 years. The poor state of Kerala in India, which invested heavily in education, especially female literacy, has health outcomes far superior to the rest of India and more comparable to those in much wealthier countries. The difference between the GDPpc for Costa Rica and the U.S. is enormous (it is about one third of the U.S. GDPpc), yet Costa Rica’s life expectancy exceeds that of the U.S. Taken together, these observations show that the health of nations depends, in large part, on factors other than wealth. Culture, social organization, and government policies also help determine population health. Variations in these factors— not fixed laws of economic development—may explain many of the differences in health outcomes among nations. At the individual level, we find that inequality is important. Numerous studies have documented what has come to be known as the socioeconomic gradient: at each step along the economic ladder, we see improved health outcomes over the rung below (including in societies with universal

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health insurance). Differences in health outcomes are not confined to the extremes of rich and poor, but are observed across all levels of socioeconomic status (SES). It is relatively uncontroversial that the shape of the SES gradient of health (in which we graph a health outcome, such as life expectancy, on the y axis and a measure of SES status on the x axis) is concave. This means that we can produce more improvement in the health of the worst-off groups by reducing the inequality that underlies SES status than we lose in the best-off groups. What is more controversial is a stronger claim about the impact of inequality, the income relativity thesis. Some evidence supports this more radical (and controversial) claim, namely that the degree of inequality—relative inequality—matters and not simply absolute levels. In some studies of states within the U.S. or countries with considerable inequality, we get evidence that increased inequality hurts better-off parts of the population. This effect may require we exceed some threshold of inequality (Subramanian & Kawachi 2004, 2006). (See Daniels 2008a for discussion of the implications of this view). In other studies, especially of smaller social units than states, there is less support for this view. The slope of the socioeconomic gradient varies substantially across societies. Some societies show a relatively shallow gradient in mortality rates: being better off confers a health advantage, but not so large an advantage as elsewhere. Others, with comparable or even higher levels of economic development, show much steeper gradients. The slope of the gradient appears to be fixed by the level of income inequality in a society: the more unequal a society is in economic terms, the more unequal it is in health terms. The income relativity thesis suggests that middle-income groups in a country with high income inequality will do worse in terms of health than comparable or even poorer groups in a society with less income inequality. If the income relativity thesis were true, it would suggest that everyone can be made better off with regard to health by reducing SES inequality; but even if we only have the claim that the SES gradient is concave, then we know that redistribution to those worse off has greater health effects than it costs society. Earlier, I cautioned that correlations between inequality and health do not necessarily imply causation. Still, there are plausible and identifiable pathways through which social inequalities appear to produce health inequalities to make a reasonable

case for causation. In the U.S., the states with the most unequal income distributions invest less in public education, have larger uninsured populations, and spend less on social safety nets (Kaplan et al. 1996; Kawachi & Kennedy 1997). Studies of educational spending and educational outcomes are especially striking: controlling for median income, income inequality explains about 40% of the variation between states in the percentage of children in the fourth grade who are below the basic reading level. Similarly strong associations are seen for high school dropout rates. It is evident from these data that educational opportunities for children in high-income-inequality states are quite different from those in states with more egalitarian distributions. These effects on education have an immediate impact on health, increasing the likelihood of premature death during childhood and adolescence (as evidenced by the much higher death rates for infants and children in the high-inequality states). Later in life, they appear in the socioeconomic gradient in health. When we compare countries, we also find that differential investment in human capital—in particular, education—is a strong predictor of health. Indeed, one of the strongest predictors of life expectancy among developing countries is adult literacy, particularly the disparity between male and female adult literacy, which explains much of the variation in health achievement among these countries after accounting for GDPpc. For example, among the majority of developing countries with GDPpcs less than $10,000, the difference between male and female literacy accounts for approximately 40% of the variation in life expectancy (after factoring out the effect of GDPpc). In the U.S., differences between the states in women’s status—measured in terms of their economic autonomy and political participation—are strongly correlated with higher female mortality rates. These societal mechanisms—for example, income inequality leading to educational inequality leading to health inequality—are tightly linked to the political processes that influence government policy. For example, income inequality appears to affect health by undermining civil society. Income inequality erodes social cohesion, as measured by higher levels of social mistrust and reduced participation in civic organizations. Lack of social cohesion leads to lower participation in political activity (such as voting, serving in local government, volunteering for political campaigns). And lower participation, in turn, undermines the responsiveness of government institutions in

Justice, Health, and Health Care addressing the needs of the worst off. States with the highest income inequality, and thus lowest levels of social capital and political participation, are less likely to invest in human capital and provide far less generous social safety nets (Kawachi & Kennedy 1999). Rawls’s principles of justice thus turn out to regulate the key social determinants of health. One principle ensures equal basic liberties, and specifically provides for guaranteeing effective rights of political participation. The fair equality opportunity principle ensures access to highquality public education, early childhood interventions, including day care, aimed at eliminating class or race disadvantages, and universal coverage for appropriate health care. Rawls’s “difference principle” permits inequalities in income only if the inequalities work (e.g., through incentives) to make those who are worst off as well off as possible. This principle is not a simple “trickle-down” principle that tolerates any inequality so long as there is some benefit that flows down the socioeconomic ladder; it requires a maximal flow downward. It would therefore flatten socioeconomic inequalities in a robust way, ensuring far more than a “decent minimum” (J. Cohen 1989). In addition, the assurances of the value of political participation and fair equality of opportunity would further constrain allowable income inequalities. The conjecture is that a society complying with these principles of justice would probably flatten the socioeconomic gradient even more than we see in the most egalitarian welfare states of northern Europe. The implication is that we should view health inequalities that derive from social determinants as unjust unless the determinants are distributed in conformity with these robust principles. Because of the detailed attention Rawls’s theory pays to the interaction of these terms of fair cooperation, it provides us—through the findings of social science—with an account of the just distribution of health. The inequalities in the social determinants that are still permitted by this theory may still produce a socioeconomic gradient, albeit a much flatter one than we see today. Should we view these residual health inequalities as unjust and demand further redistribution of the social determinants? I believe the theory I have described does not give a clear answer. If the Rawlsian theory insists that protecting opportunity takes priority over other matters and cannot be traded for other gains

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(and Rawls generally adopts this view), then residual health inequalities may be unjust. If health can be traded for other goods—and all of us make such trades when we take chances with our health to pursue other goals—then the account may be more flexible (Daniels, Kennedy & Kawachi 1999). Still, Rawls’s principles give us more specific guidance in thinking about the distribution of the social determinants than is given by the fair equality of opportunity account of just health care alone. I noted earlier that there is considerable convergence between the opportunity-based view I defend and Sen’s (1992) appeal to a capabilitiesbased account (or freedom-based account) of the target of justice. The convergence is even more pronounced when Sen (1999) discusses the ways in which health in developing countries is affected by different development strategies and emphasizes the importance of education and the growth of democratic culture and institutions. Rawls’s focus on the “capabilities of free and equal citizens” suggests the convergence works in both directions (Daniels 2000). Both approaches allow us talk informatively about justice and the distribution of health. One point is worth emphasizing: I earlier used a narrow conception of health, namely the normal functioning view. It should now be clear that a narrow conception of health is compatible with a very broad view of the determinants of health. Thinking that a narrow view of health rules out a broad view of its determinants is simply a confusion. Knowing that a health inequality is unjust may affect our views about how much priority we should give to eliminating it (but see my remarks below). Nevertheless, we generally owe assistance to people whose health states are not the result of social injustice. It is important not to confuse these matters—learning that a health inequality is not itself unfair does not mean that we have no obligations to reduce or eliminate it.

W H E N A R E L I M I T S TO H E A LT H C A R E FA I R ? Justice requires that all societies meet health care needs fairly under reasonable resource constraints. Even a wealthy, egalitarian country with a highly efficient health care system will have to set limits to the health care it guarantees everyone (whether or not it allows supplementary tiers for those who can afford them). Poorer countries have to make even harder choices about priorities and limits.

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However important, health care is not the only important social good. All societies must decide which needs should be given priority and when resources are better spent elsewhere. How should fair decisions about such limits be made? Under what conditions should we view such decisions as a legitimate exercise of moral authority? Answering these questions would be much simpler if people could agree on principles of distributive justice that would determine how to set fair limits to health care. If societies agreed on such principles, people could simply check social decisions and practices against the principles to see if they conform to them. Where decisions, practices, and institutions fail to conform, they would be unjust and people should then change them. Disagreements about the fairness of actual distributions would then be disagreements either about the interpretation of the principles or about the facts of the situation. Many societies have well-established and reliable, if imperfect, legal procedures for resolving such disputes about facts and interpretations. Unfortunately, there is no consensus on such distributive principles for health care. Reasonable people, who have diverse moral and religious views about many matters, disagree morally about what constitutes a fair allocation of resources to meet competing health care needs—even when they agree on other aspects of the justice of health care systems, such as the importance of universal access to whatever services are provided. We should expect, and respect, such diversity in views about rationing health care. Nevertheless, we must arrive at acceptable social policies despite our disagreements. This moral controversy raises a distinctive problem of legitimacy: Under what conditions should we accept as legitimate the moral authority of those making rationing decisions? I shall develop the following argument: (1) We have no consensus on principled solutions to a family of morally controversial rationing problems, and general principles of justice for health and health care fail to give specific guidance about them (Daniels 1993); (2) In the absence of such a consensus, we should rely on a fair process for arriving at solutions to these problems and for establishing the legitimacy of such decisions (Rawls 1971); (3) A fair process that addresses issues of legitimacy will have to meet several constraints that I shall refer to as “accountability for reasonableness” (Daniels & Sabin 1998a); these constraints tie the process to deliberative democratic

procedures (Daniels & Sabin 1997, 2002, 2008). This issue of legitimacy and fair process arises in both public and mixed public–private health care systems and it must be addressed in countries at all levels of development. To support the first step of the argument, consider a problem that has been labeled the “priorities problem” (Daniels 1993; Kamm 1993): How much priority should we give to treating the sickest or most disabled patients? To start with, imagine two extreme positions. The Maximin position (“maximize the minimum”) says that we should give complete priority to treating the worst-off patients. One might think that Maximin is implied by the fair equality of opportunity account (though I believe my account is only committed to giving some priority to the worst off, placing it in a broad family of views that leave the degree of priority unspecified). The Maximize position says that we should give priority to whatever treatment produces the greatest net health benefit (or greatest net health benefit per dollar spent) regardless of which patients we treat. Suppose comparable resources could be invested in Technology A or B, but the resources are “lumpy” (we cannot introduce some A and some B) and we can afford only one of A or B in our health care budget. The Maximin position would settle the matter by determining whether patients treated by A are worse off before treatment than patients treated by B. If so, we introduce A; if patients treated by B are worse off, we introduce B. If the two sets of patients are equally badly off, we can break the tie by considering whom we can provide the most benefit. The Maximize position chooses between A and B solely by reference to which produces the greatest net benefit. In practice, most people are likely to reject both extreme positions (Nord 1995, 1999, Menzel et al. 1999, Ubel 2000, Dolan et al. 2005). If the benefits A and B produce are nearly equal, but patients needing A start off much worse than patients needing B, most people seem to believe we should introduce A. They prefer to provide A even if they know we could produce somewhat more net health benefit by introducing B. But if the net benefit produced by A is very small, or if B produces significantly more net benefit, then most people will overcome their concern to give priority to the worst off and will prefer to introduce B to A. Some people who would give priority to patients needing A temper their preference if those patients end up faring much better than patients needing B. Disagreement persists: a definite but very small

Justice, Health, and Health Care minority are inclined to be maximizers and a definite but very small minority are inclined to be maximiners. Most people fall in-between, and they vary considerably in how much benefit they are willing to sacrifice in order to give priority to worse-off patients. Two other types of rationing problems also suggest we are not straight maximizers or maximiners, though we lack principled characterizations of acceptable middle-course solutions (Daniels 1993). The Fair Chances/Best Outcomes Problem asks: Should we give all who might benefit some chance at a resource, or should we give the resource to those who get the best outcome? The Aggregation problem asks: When do lesser benefits to many outweigh greater benefits to a few? Two strategies have been pursued to address these kinds of rationing problems, one philosophical, one empirical. The philosophical approach, brilliantly exemplified in Kamm’s (1993) work, examines subtly varied hypothetical cases, seeking to reveal agreement on a complex set of underlying principles that can account for the judgments the philosophical inquirer makes about these cases.6 This strategy may well help us arrive at middle-level principles for addressing these rationing problems, and it should be pursued. Nevertheless, given the subtlety of the method and the likelihood that some disagreements about cases will reflect broader moral disagreements about other matters, I do not believe this method will produce consensus on such principles in the foreseeable future. The insights from this approach are important inputs into a fair, deliberative process of decision-making, but they are not a substitute for such a fair process. The empirical approach has been ingeniously developed by the economist Erik Nord (1999), who also explores hypothetical cases by asking groups of people “person-tradeoff ” questions, and by others (Ubel 2000, Dolan et al. 2005). These questions are a variation on a standard economic approach seeking “indifference” points or curves reflecting when an individual finds two benefits or outcomes equivalent. For example, if we can invest only in treatments A and B, and A is used for people more seriously ill than B, we might ask how many treatments with B would someone trade for some number of treatments with A. Nord hopes this approach can uncover the structure of moral concerns in a population of people. A key risk of the method is that it disguises moral disagreement by talking about a “range” of responses. For this, and other reasons I discuss

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elsewhere (Daniels 1998c, Daniels & Sabin 1997), the results of Nord’s work can help inform fair, deliberative decision processes but cannot substitute for them. If we have persistent disagreement about principles for resolving rationing problems, then we must retreat to a process—a form of procedural justice—that all can agree is a fair way to resolve disputes about them. The retreat to procedural justice as a way of determining what is fair when we lack prior agreement on principles is a central feature of Rawls’s (1971) account (thus the term “justice as [procedural] fairness” because his original position is a fair way to resolve disputes about the balance of liberty and equality within social justice). The kind of procedural justice problem we face, however, does not fit precisely into Rawls’s classical description of procedural justice. Suppose we have prior agreement on a principle that governs outcomes (“convict all and only the guilty”): we may still need a process to help us apply the principle. Rawls classifies processes such as this as “impure” procedural justice. For example, we need the adversarial process and rules of evidence in a criminal trial to help us determine how the principle applies in a specific case. Because the outcome of a trial may be in error according to the principle, Rawls classifies the criminal trial as “imperfect” as well as impure. In cases of pure procedural justice, in contrast, we lack a prior principle. Rawls illustrates this case with gambling—no principle governs a fair outcome of a gamble other than the outcome of a fair gamble, be it a spin of a balanced roulette wheel, balanced dice, or an unmarked deck. The problem is that our case, resolving reasonable disagreements about resource allocation, fits the category in some ways (there is no prior agreement on a principle), but fails to fit it in other ways. For example, we may want to constrain the process by making sure it does not overturn clear principles of justice, such as non-discrimination by race. We may also later come to accept a principle of fair distribution that we think governs the resource allocation decision; so, unlike gambling, the process is only defeasibly fair. It counts as fair until we agree the process frustrates a principle we have come to accept. I will stipulate that the outcomes of the following process then count as both legitimate and defeasibly fair. We would take a giant step toward solving the problems of legitimacy and fairness that face public agencies and private health plans making limit-setting decisions if the following four

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conditions were satisfied (Daniels & Sabin 1997, 2008):7 1. Publicity condition: Decisions regarding coverage for new technologies (and other limit-setting decisions) and their rationales must be publicly accessible. 2. Relevance condition: The rationales for coverage decisions should aim to provide a reasonable construal of how the organization (or society) should provide “value for money” in meeting the varied health needs of a defined population under reasonable resource constraints. Specifically, a construal will be “reasonable” if it appeals to reasons and principles that are accepted as relevant by people who are disposed to finding terms of cooperation that are mutually justifiable. 3. Appeals condition: There is a mechanism for challenge and dispute resolution regarding limit-setting decisions, including the opportunity for revising decisions in light of further evidence or arguments. 4. Enforcement condition: There is either voluntary or public regulation of the process to ensure that conditions 1 through 3 are met. The guiding idea behind the four conditions is to convert private health plan or public agency decisions into part of a larger public deliberation about how to use limited resources to protect fairly the health of a population with varied needs. The broader public deliberation envisioned here is not necessarily an organized democratic procedure, though it could include the deliberation underlying public regulation of the health care system. Rather, it may take place in various forms in an array of institutions, spilling over into legislative politics only under some circumstances. Meeting these conditions also serves an educative function: the public is made familiar with the need for limits and appropriate ways to reason about them. The first condition requires that rationales for decisions be publicly accessible to all affected by them. One American health plan, for example, decided to cover growth hormone treatment but only for children who are growth hormonedeficient or who have Turner’s syndrome. It deliberated carefully and clearly about the reasons for

its decision. These included the lack of evidence of efficacy or good risk/benefit ratios for other groups of patients, and a commitment to restrict coverage to the treatment of disease and disability (as opposed to enhancements). It did not, however, state these reasons in its medical director’s letter to clinicians or in support materials used in “shared decision-making” with patients and families about the procedure. Its reasons were defensible ones aimed at a public good all can understand and see as relevant, the provision of effective and safe treatment to a defined population under resource constraints. The restriction to treatment rather than enhancement requires a moral argument, however, and remains a point about which reasonable people can disagree, as we saw earlier. One important effect of making public the reasons for coverage decisions is that, over time, the pattern of such decisions will resemble a type of “case law.” A body of case law establishes the presumption that if some individuals have been treated one way because they fall under a reasonable interpretation of the relevant principles, then similar individuals should be treated the same way in subsequent cases. In effect, the institution generating the case law is saying, “We deliberate carefully about hard cases and have good reasons for doing what we have done, and we continue to stand by our reasons in our commitment to act consistently with past practices.” To rebut this presumption requires showing either that the new case differs in relevant and important ways from the earlier one, justifying different treatment, or that there are good grounds for rejecting the reasons or principles embodied in the earlier case. Case law does not imply past infallibility, but it does imply giving careful consideration to why earlier decision-makers made the choices they did. It involves a form of institutional reflective equilibrium, a commitment to both transparency and coherence in the giving of reasons. The benefits of publicity in the form of case law are both internal and external to the decisionmaking institution. The quality of decision-making improves if reasons must be articulated. Fairness improves over time, both formally, since like cases are treated similarly, and substantively, since there is systematic evaluation of reasons. To the extent that we are then better able to discover flaws in our moral reasoning, we are more likely to arrive at fair decisions. Over time, people will understand better the moral commitments of the institutions making these decisions.

Justice, Health, and Health Care The relevance condition imposes two important constraints on the rationales that are made publicly accessible. Specifically, the rationales for coverage decisions should aim to provide (a) a reasonable construal of (b) how the organization (or society) should provide “value for money” in meeting the varied health needs of a defined population under reasonable resource constraints. Both constraints need explanation. We may think of the goal of meeting the varied needs of the population of patients under reasonable resource constraints as a characterization of the common or public good pursued by all engaged in the enterprise of delivering and receiving this care. Reasoning about that goal must also meet certain conditions. Specifically, a construal of the goal will be “reasonable” only if it appeals to reasons (evidence, values, and principles) that are accepted as relevant by “fair-minded” people. By “fairminded” I mean people who seek mutually justifiable terms of cooperation. The notion is not mysterious, since we encounter it all the time in sports: fair-minded people are those who want to play by agreed-upon rules in a sport and prefer rules that are designed to bring out the best in that game. Here we are concerned with the game of delivering health care that meets population needs in a fair way. Recall the restriction on the use of growth hormone treatment to those with growth hormone deficiency. As I noted earlier, some object that a theory that emphasizes protecting equal opportunity, as mine does, should also use medical interventions to eliminate extreme but normal shortness if it is disadvantaging. Still, proponents on both sides of this dispute can recognize that reasonable people might disagree about the specific requirements of a principle protecting opportunity. Both sides of the dispute about the scope of the goals of medicine nevertheless must recognize the relevance and appropriateness of the kind of reason offered by the other, even if they disagree with the interpretation of the principle or the applications to which it is put. Consider further the implications of the relevance condition. “Including this treatment benefits me (and other patients like me),” just like “excluding this treatment disadvantages me (or other patients like me),” is not the kind of reason that meets the constraints on reasons. Because comparative coverage decisions always advantage some and disadvantage others, mere advantage or disadvantage is not a relevant reason in debates about coverage. If, however, a coverage decision

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disadvantages me compared to other patients similar to me in all relevant ways, then this is reason based on disadvantage that all must think is relevant. Also, if a coverage decision disadvantages someone (and others like him) more than anyone need be disadvantaged under alternatives available, then this too is a reason that all must consider relevant. How should we view the claim that a treatment “costs too much”? First, suppose this is a claim about relative cost-effectiveness or worthiness. People who share in the goal of meeting the varied medical needs of a population covered by limited resources would consider relevant the claim that a particular technology falls below some defensible threshold of cost-effectiveness or relative cost-worthiness. Suppose, however, the claim that something “costs too much” refers to its effects on profits or competitiveness. Supporting this claim often requires providing information that private health plans will not reveal (for good business reasons), often turns on economic and strategic judgments requiring special experience and training, and ultimately depends on a much more fundamental claim about the design of the system—namely, that a system involving competition in this sort of market will produce efficiencies that work to the advantage of all who have medical needs. My point is not that these reasons fail to meet the relevance condition, but that providing support for them requires information that is often not available, that is hard to understand when it is available, and that ultimately depends on fundamental moral and political judgments about the feasibility of quite different alternative systems for delivering health care. Nevertheless, if for-profit health plans are to comply with the relevance condition, they must either be willing to provide information they would ordinarily not make public, or make their decisions on the basis of reasons that they can defend to other relevant stakeholders. The constraints here imposed on reasons have a bearing on a philosophical debate about the legitimacy of democratic procedures. An aggregative or proceduralist conception of democratic voting sees it as a way of aggregating preferences. Where, however, we are concerned with fundamental differences in values, not mere preferences, an aggregative view seems inadequate. It seems insensitive to how we ideally would like to resolve moral disputes, namely through argument and deliberation. An alternative “deliberative” view imposes constraints on the kinds of reasons that

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can play a role in deliberation. Not just any preferences will do: reasons must reflect the fact that all parties to a decision are viewed as seeking terms of fair cooperation that they accept as reasonable. Even if we have to rely on a majority vote to settle a disagreement where there are serious moral issues involved, if the reasons are constrained to those all must view as relevant, then the minority can at least assure itself that the preference of the majority rests on the kind of reason that even the minority must acknowledge appropriately plays a role in deliberation. The majority does not exercise brute power of preference but is instead constrained by having to seek reasons for its view that are justifiable to all who seek mutually justifiable terms of cooperation. The appeals and enforcement conditions involve mechanisms that go beyond the publicity requirements of the first two conditions. When patients or clinicians use these procedures to challenge a decision, and the results of the challenge lead effectively to reconsideration of the decision on its merits, the decision-making process is made iterative in a way that broadens the input of information and argument. Parties that were excluded from the decision-making process, and whose views may not have been clearly heard or understood, find a voice, even if after the original fact. The dispute-resolution mechanisms do not empower enrollees or clinicians to play a direct, participatory role in the actual decision-making bodies, but that does not happen in many public democratic processes as well. Still, it does empower them to play a more effective role in the larger social deliberation about the issues, including in those public institutions that can play a role in regulating private health plans or otherwise constraining their acts. The mechanisms we describe thus play a role in ensuring broader accountability of private organizations to those who are affected by limit-setting decisions. The arrangements required by the four conditions provide connective tissue to, not a replacement for, broader democratic processes that ultimately have authority and responsibility for guaranteeing the fairness of limit-setting decisions. Together these conditions hold institutions— public or private—and decision-makers in them “accountable for the reasonableness” of the limits they set. All must engage in a process of establishing their credentials for fair decision-making about such fundamental matters every time they make such a decision. Whether in public or mixed systems, establishing the accountability of decision-makers

to those affected by their decisions is the only way to show, over time, that arguably fair decisions are being made and that those making them have established a procedure we should view as legitimate. This is not to say that public participation is an essential ingredient of the process in either public or mixed systems, but the accountability to the public in both cases is necessary to facilitate broader democratic processes that regulate the system. In many public systems the reasoning that lies behind decisions that affect the length of queues—a rationing device—are inscrutable to the public. They are made in a “black box” of budgetary decisions. Queues may then be adjusted if the public complains too much—there is this kind of accountability to the squeaky wheel. But there is in general too little accountability of the sort demanded by the four conditions I describe (Ham & Pickard 1998, Coulter & Ham 2000). Only through such accountability and the way in which it facilitates or enables a broader social deliberation will there be a wider perception that rationing decisions are fair and are made through an exercise of legitimate authority. One issue facing this “process” approach to rationing seems to be more problematic in public systems than it does in mixed ones. In a mixed system, two different insurers or health plans might arrive at different judgments about what limits to set. I have suggested both might be “right” if their decisions are the results of fair procedures (Daniels & Sabin 1998b, 2008). The anomaly is that some patients will then have access to services that others will not have, and this might seem to violate a formal constraint on fairness, that society treat like cases similarly. In a mixed system, we might see this variation as a price we pay for whatever virtues (if any) the mixed system brings (the variation might ultimately lead us to better decisions over time). In a public system, however, such variation (e.g., between districts) might seem more objectionable if all are governed by the same public legislation and funding. Still, despite such anomalies, fair process may be the best we can do wherever we have no prior consensus on fair outcomes. Because the British were particularly disturbed when different local health authorities made different decisions about coverage in the National Health Service, they put in place the National Institute for Clinical Excellence (NICE), which would make uniform recommendations for both England and Wales (but not Scotland). Many of

Justice, Health, and Health Care the ideas embodied in accountability for reasonableness had an influence in the design and management of NICE (Rawlins 2005, NICE Report on Social Values 2008), as they have on prioritysetting in several other European countries and Commonwealth countries, including Norway, Sweden, and Canada, as well as in Mexico. The approach has made less headway in the U.S. (Daniels & Sabin 2008). Accountability for reasonableness can also assist us in using a human-rights approach to health, for that approach is in general unable to provide rationales for priorities among competing right claims (Daniels 2008a, Ch. 12; Gruskin & Daniels 2008). Supplementing that human-rights approach with the kind of fair process described here can provide rationales for decisions about what to undertake first in the progressive realization of a right to health or health care. Accountability for reasonableness is also needed to help us resolve disagreements about how much to reduce health inequalities—including health inequities (i.e., unjust inequalities in health). The unsolved rationing problems noted earlier (the priorities problem, the aggregation problem, the best outcomes vs. fair chances problem) all arise when we make decisions about reducing health inequalities, even unjust ones, and so reasonable people will disagree about how much priority to give to reducing health inequalities versus improving aggregate population health (Daniels 2008a, Ch. 11).

I M P L I C AT I O N S O F T H E OV E R A L L T H E O RY The account sketched here in these answers to the three questions has several implications for what we owe each other in the protection and promotion of health (see Daniels 2008a, Ch. 5 for more detail). The account implies that we owe each other comprehensive measures to reduce health risks and to distribute them more equitably. This means that not only do we have obligations to pursue traditional public-health measures, including those that bear on differential risk in the workplace and environment more generally, but also we must distribute the social determinants of health in a more equitable fashion. The implication is that social justice in general is good for our health. One form of health protection is health promotion—and this means we must in various ways learn how to influence people to take more responsibility for their health, at the same time we do not engage in victim blaming. If this means

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providing incentives to people to behave more prudently, we should do so. I note that this may be one place where there is a clear basis in my extension of Rawls for justifying such incentives, whereas a luck egalitarian view may not have a clear way to justify incentives that make people behave more prudently (since luck egalitarians believe we do not owe people assistance when they make imprudent but informed, voluntary choices—see Daniels 2010). We also owe each other a reasonable array of treatments that address conditions we cannot prevent. Specifically, the account supports the provision of universal access to appropriate health care—including traditional public health and preventive measures—through public or mixed public and private insurance schemes. Health care aimed at protecting fair equality of opportunity should not be distributed according to ability to pay and the burden of payment should not fall disproportionately on the ill (Daniels 1985, 1995; Daniels, Light & Caplan 1996). Properly designed universal-coverage health systems will be constrained by reasonable budgets, since health care is not the only important good. Reasonable resource constraints will then require judgments about which medical needs are more important to meet than others. Prioritysetting and rationing is thus a requirement of justice, since meeting health care needs should not and need not be a bottomless pit. Accountability for reasonableness gives us an approach to making legitimate and defeasibly fair decisions about what entitlements follow from recognizing a right to health or health care. On the account developed here, such a right is a special case of a right to fair equality of opportunity. Some commentators (Sreenivasan 2007) have argued that if putting our resources into the better distribution of the social determinants of health means we can better protect the opportunities of the population than by providing universal coverage, perhaps an opportunity-based account is not the proper framework for justifying universal coverage. But this view ignores the fact that we cannot prevent all illness and we still owe those who are ill protection of their opportunities: we may have to thin our benefit package in order to distribute the social determinants more fairly, but we still owe people universal access to what we do provide (Daniels 2007). Some universal-coverage health care systems permit a supplementary tier that is purchased by those who are best off in society. For example, the British private insurance sector allows about 10%

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of the population to have quicker access to services that others must wait longer for in the National Health Service. Other countries, such as Norway until recently, prohibited a supplementary tier, fearing it will undermine the political solidarity needed to sustain their generous health care system. The fair equality of opportunity account constrains, but does not rule out, all tiering (Daniels 1998a; Daniels, Light & Caplan 1996).

CONCLUDING REMARKS A comprehensive approach to justice, health, and health care must address all three questions I have discussed. My extension of Rawls’s theory of justice to health and health care provides a way to link answers to the first and second questions. There are also three ways in which Rawls’s theory also provides support for my approach to the third question. First, I propose that we use a fair process to arrive at what is fair in rationing, since we lack prior consensus on the relevant distributive principles. This retreat to procedural justice is at the heart of Rawls’s own invocation of his version of a social contract. Second, Rawls places great emphasis on the importance of publicity as a constraint on theories of justice: principles of justice and the grounds for them must be publicly acknowledged. This constraint is central to the conditions that establish accountability for reasonableness. Finally, Rawls develops the view that “public reason” must constrain the content of public deliberation and decision about fundamental matters of justice, avoiding special considerations that might be elements of the comprehensive moral views that people hold (Rawls 1993). Accountability for reasonableness pushes decision-makers toward finding reasons all can agree are relevant to the goals of cooperative health-delivery schemes. In this way, accountability for reasonableness promotes the democratic deliberation that Rawls also advocates. In pointing out these connections, I am not suggesting that this is the only approach to developing a theory of justice that applies to all aspects of health and health care. Indeed, I have pointed to other theories that converge to some extent both in practice and in theory with the approach adopted here. I am proposing that concerns about justice and fairness in health policy should look to political philosophy for guidance and that some specific guidance is forthcoming. At the very same time, seeing how we have to modify and refine work in political philosophy if it is to apply to real

issues in the world suggests that we should abandon the unidirectional implications of the term “applied ethics” or “applied political philosophy” (Daniels 1996b).

AC K N OW L E D G M E N T Bruce Kennedy and Ichiro Kawachi collaborated with me to write the material on which I drew for the section “Which Health Inequalities Are Unjust?”. James Sabin collaborated on the research and writing on which I drew for the section “When Are Limits to Health Care Fair?”. Research for the original version of this paper was supported by a Robert Wood Johnson Investigator Award and Tufts Sabbatical Leave. I have benefited over the years from discussions with Richard Arneson, Allen Buchanan, Dan Brock, G.A. Cohen, Joshua Cohen, John Rawls, and Dan Wikler about the relationship between my approach and that of other recent work on egalitarianism. Notes 1. Disease and disability, both physical and mental, are construed as adverse departures from normal functional organization or “normal functioning,” for short. The line between disease and disability and normal functioning is drawn in the relatively objective and non-evaluative context provided by the biomedical sciences, broadly construed (though glaring misclassifications have also occurred). For more discussion of this controversial view, see Daniels 2008a, Ch. 2. 2. Daniels 1996a discusses the relationship between the equal opportunity account and the rationale for “reasonable accommodation” required of employers under the Americans with Disabilities Act; see also Brock 1995. Brock (1998) discusses the implication of disabilities for cost-effectiveness analysis. 3. Economists view an arrangement as efficient or pareto optimal if no one can be made better off without making someone else worse off. If some people would trade their access to health care through socially provided insurance for other goods, they are not in a pareto optimal situation. 4. This view differs from that advocated by Callahan (1987), who thinks the old have a duty to step aside in favor of the young; it is also different from those who argue for a version of the “fair innings” view, which gives priority to the young on the grounds that the old have already had their opportunity to acquire years (cf. Brock 1989; Williams 1997); it is also different in rationale from Kamm (1993), who argues that the young would be worse off than the old and in that sense “need” years more than the old. The considerable disagreement about what justice permits, even among those who accept some forms of age rationing, argues

Justice, Health, and Health Care for the importance of the type of fair process described later in this paper. 5. See Daniels 2000; also Rawls 1993. The convergence is clearer still when Sen (1999) addresses the ways in which we should focus on our capabilities as citizens—see Anderson 1999. For more on the convergence of Sen’s views with mine see Daniels 2008a, Ch. 2. 6. Kamm insists on exploring hypothetical cases or thought experiments, rather than real ones, attempting to isolate more clearly in these cases the relevant features that motivate our judgments. She believes that her method will uncover an “internal program” or underlying moral structure to our beliefs; crucial to this approach is the claim that people will agree on a central range of cases—that is, that others will have the same responses Kamm does to them. For doubts about the method, see Daniels 1998b. 7. The conditions described were developed independently but fit reasonably well with the framework of principles for democratic deliberation developed by Gutman and Thompson (1996). For some reservations about their approach see Daniels 1999.

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Daniels, N. (2010). Social and individual responsibility for health. In Knight, C., & Stemplowska, Z. (Eds.), Distributive Justice and Responsibility. Oxford and New York: Oxford University Press. Daniels, N., & Sabin, J. (1997). Limits to health care: fair procedures, democratic deliberation, and the legitimacy problem for insurers. Philosophy and Public Affairs 26:303–350. Daniels, N., & Sabin, J. (1998a). The ethics of accountability and the reform of managed care organizations, Health Affairs 17(5):50–69. Daniels, N., & Sabin, J. (1998b). Last-chance therapies and managed care: pluralism, fair procedures, and legitimacy, Hastings Center Report 28(2):27–41. Daniels, N., & Sabin, J. (2002). Setting Limits Fairly: Can We Learn to Share Medical Resources? New York: Oxford University Press. Daniels, N., & Sabin, J. (2008). Setting Limits Fairly: Can We Learn to Share Medical Resources? (2nd ed.). New York: Oxford University Press. Daniels, N., Kennedy, B., & Kawachi, I. (1999). Why justice is good for our health: social determinants of health inequalities. Daedalus 128(4):215–251. Daniels, N., Kennedy, B., & Kawachi, I. (2000). Justice is good for our health: how greater economic equality would promote public health. Boston Review 25(1):4–9, 18–19. Daniels, N., Light, D., & Caplan, R. (1996). Benchmarks of Fairness for Health Care Reform. New York: Oxford University Press. Daniels, N., Rose, S., & Zide, E.D., Disability, adaptation, and inclusion. In Brownlee, K., & Cureton, A. (Eds.) Disability and Disadvantage: Re-examining Topics in Moral and Political Philosophy. New York: Oxford University Press, 2009, pp. 54–85. Dolan, P., Shaw, R., Tsuchiya, A, et al. (2005) QALY maximisation and people’s preferences: a methodological review of the literature. Health Economics 14:197–208. Evans, R., Barer, M., & Marmor, T. (Eds.). (1994). Why are Some People Healthy and Others are Not? The Determinants for Health of Populations. New York: A. de Gruyter. Evans, T., Whitehead, M., Diderichsen, et al. (Eds.). (2001). Challenging Inequities in Health: From Ethics to Action. Oxford: Oxford University Press. Gruskin, S., & Daniels, N. (2008). Justice and human rights: priority setting and fair deliberative process. American Journal of Public Health 98(9):1573– 1577. Gutman, A., & Thompson, D. (1996). Democracy and Disagreement. Cambridge, MA: Harvard University Press. Ham, C., & Pickard, S. (Eds.). (1998). Tragic choices in health care: The story of Child B. London: Kings Fund.

Hausman, D.M. (2006). Valuing health. Philosophy and Public Affairs 34(3):246–274. Kamm, F.M. (1993). Morality, mortality. Vol. 1: Death and whom to save from it. Oxford: Oxford University Press. Kaplan, G.A., Pamuk, E.R., Lynch, J.W., et al. (1996). Inequality in income and mortality in the United States: analysis of mortality and potential pathways. British Medical Journal 312:999–1003. Kawachi, I., & Kennedy, B.P. (1997). Health and social cohesion: why care about income inequality? British Medical Journal 314:1037–1040. Kawachi, I., & Kennedy, B.P. (1999). Income inequality and health: Pathways and mechanisms. Health Services Research. 34:215–227. Kawachi, I., & Kennedy, B.P. (2002). The Health of Nations: Why Inequality is Harmful to Your Health. New York: The New Press. Kawachi, I., Kennedy, B.P., & Wilkinson, R. (Eds.). (1999). Income Inequality and Health: A Reader. New York: The New Press. Marmot, M.G. (2004).The Status Syndrome: How Social Standing Affects Our Health and Longevity. New York: Henry Holt, Times Books. Marmot, M.G., Fuhrer, R., Ettner, S.L., Marks, N.F., et al. (1998). Contribution of psychosocial factors to socioeconomic differences in health. Milbank Quarterly 76(3): 403–448. Menzel, P., Gold, M., Nord, E., Pinto-Prades, J.L., et al. (1999). Toward a broader view of values in costeffectiveness analysis in health care. Hastings Center Report 29(3):7–15. NICE. (2008). Social Value Judgements: Principles for the Development of NICE Guidance (2nd ed.). Available at: http://www.nice.org.uk/media/C18/30/ SVJ2PUBLICATION2008.pdf Nord, E. (1995). The person-tradeoff approach to valuing health care programs. Medical Decision Making 15:201–208. Nord, E. (1999). Cost-Value Analysis in Health Care: Making Sense out of QALYs. Cambridge: Cambridge University Press. Parfit, D. (1997). Equality and priority. Ratio 10: 202–221. Rawlins, M. (2005). Pharmacopolitics and deliberative democracy. Clinical Medicine 5(5):471–475. Rawls, J. (1971). A Theory of Justice. Cambridge, MA: Harvard University Press. Rawls, J. (1993). Political Liberalism. New York: Columbia University Press. Sabin, J., & Daniels, N. (1994). Determining `medical necessity’ in mental health practice: a study of clinical reasoning and a proposal for insurance policy. Hasting Center Reports 24(6):5–13. Scanlon, T.M. (1975). Preference and urgency. Journal of Philosophy 77(19):655–669.

Justice, Health, and Health Care Scanlon, T.M. (1998). What Do We Owe to Each Other? Cambridge, MA: Belknap Press of Harvard University Press. Sen, A.K. (1980). Equality of what? In McMurrin, S. (Ed.), Tanner Lectures on Human Values, Vol. 1. Cambridge: Cambridge University Press. Sen, A.K. (1992). Inequality Reexamined Cambridge, MA: Harvard University Press. Sen, A.K. (1999). Development as Freedom. New York: Alfred A. Knopf. Sreenivasan, G. (2007). Health care and equality of opportunity. Hastings Center Report Mar-Apr 37(2):21–31. Subramanian, S.V., & Kawachi, I. (2004). Income equality and health: What have we learned so far? Epidemiologic Reviews 26:8–91.

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Subramanian, S.V., & Kawachi, I. (2006). Whose health is affected by income inequality? A multilevel interaction analysis of contemporaneous and lagged effects of state income inequality on individual self-rated health in the United States. Health and Place 12(2):141–156. Ubel, P. (2000). Pricing Life: Why It’s Time for Health Care Rationing. Cambridge, MA: MIT Press. Williams, A. (1997). Intergenerational equity: an exploration of the “fair innings” argument. Health Economics 6:117–132. World Health Organization. (2008). Commission on Social Determinants of Health. Closing the Gap in a Generation: Health Equity through Action on the Social Determinants of Health. Available at http:// www.who.int/social_determinants/thecommission/finalreport/en/index.html.

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2 Justice, Liberty, and the Choice of Health-System Structure PAU L T. M E N Z E L

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ealth care systems are sometimes thought to fall on a spectrum from those characterized by great equity and justice but that employ considerable collective coercion, to those that achieve little equity but encroach less on individual liberty1 (Culyer et al. 1981). Often systems in the former, allegedly liberty-diminishing direction are also assumed to be the most efficient and costeffective; more centralized, they minimize administrative costs and are better able to control costly provider behavior and insurance-distorted patient demand. Their paradigm is a unitary public system, either single-payer insurance of care provided by private clinics and hospitals, or a national health service that directly delivers care to an entire population. The paradigm on the opposite, decentralized end of the spectrum is a pluralistic, competitive multi-payer insurance market designed not for universal access but for consumer choice. In this paradigm’s pure form, individuals remain at liberty to refuse to purchase any insurance, while insurers may bid for any group of subscribers with premiums they judge to be adequate.2 Those who see liberty, equity, and costeffectiveness aligning this way in choice of health care system understand that the alignment is not exclusive. Unitary public systems can fully respect an individual’s right of informed refusal of care as much as multi-payer systems do. Pluralistic market systems can achieve universal access through vouchers subsidized for low-income and highrisk subscribers (Pauly et al. 1992), and arguably some multi-payer systems achieve high levels of efficiency—Germany’s, for example (Reid 2009, pp. 66–81). Nonetheless, the moral tradeoffs and conflicts in choice of fundamental structure are still commonly thought to be significant enough that health policy remains an ideological battleground between the political left, willing to compromise

liberty to achieve equity and aggregate efficiency, and the political right, willing to sacrifice equity and universal access to avoid encroaching on liberty.3 I will articulate a contrary view, focusing in this essay especially on liberty and equity: moral conflicts among liberty and equity do not align with the basic type of health care system in remotely this simple a way. To be sure, egalitarian views of justice insist from the start on both universal access to a robust basic minimum of care and financially equitable financing (for example, “community-rated” premiums). Since both appear more difficult to achieve in a pluralistic market system, most egalitarians view justice as requiring a unitary public system. Our first reaction to this alleged alignment ought to be at least to note that senses of justice and equity vary widely. In more libertarian ones, for example, a pluralistic healthinsurance market is seen to respect justice as well as liberty (Engelhardt 1996). More important than this point in breaking up the stereotypical associations, however, is something in the nature of the fundamental values themselves: many of the conflicts between individual liberty and responsibility, on the one hand, and equity, on the other, are fewer and less intractable than is usually assumed. To see this we need to understand how these values manifest themselves in the basic structure of a health care system. More specifically I argue that (a) even those with relatively libertarian views of distributive justice should embrace compulsory, universal coverage of health care for a basic minimum of care, and (b) egalitarians should recognize that systems that allow private purchase of additional care and coverage on top of a universally accessible, lean basic minimum of care can be equitable and just.

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Such an approach asks ardent defenders of liberty to embrace compulsory insurance and committed supporters of egalitarian justice to allow the existence of varying tiers of health care. This approach, while it can support single-payer systems, can also provide moral support for the combination of mandates, subsidies, and insurance regulations featured in the U.S. 2010 health reform act (Patient Protection and Affordable Care Act, 2010).4 To begin the argument, I first describe the economic phenomenon of “market failure” that inevitably plagues voluntary health-insurance markets. That sets the stage for a powerful moral argument for intervening in the market by mandating universal, similar-premium insurance. To make the argument I use an Anti-Free-Riding Principle (AFRP) and two additional principles needed to round out the argument for mandated, universal insurance for basic care: Equal Opportunity for Welfare (EOW), an understanding of distributive justice that reduces the tension between liberty and equity, and Just Sharing, a secondary principle following from EOW that addresses the expense of insurance. EOW also points to rejecting Medical Egalitarianism, the view that everyone should receive equal care for equal medical need.

M A R K E T FA I L U R E To comprehend how intersecting values bear on choice of system structure, certain basic aspects of health care markets need to be understood. The most important is what economists call “market failure”: the market for a particular good fails to supply it for those who most want and need it. Health insurance is such a good. In a voluntary insurance market, competing insurers will offer lower premiums for those who are less expensive to insure. They will keep lowering that cost for the youngest and healthiest to the point where they can still profit on this segment of the population. Complementing this is the fact that the youngest and healthiest subscribers, if they are not required to purchase insurance, will refuse to buy it unless its price drops to a level proportional to their particular risk. On the opposite, high-cost end of the market, insurers, if they do not have to cover everyone, will offer insurance to high-risk subscribers only at the rates actuarially adequate to their high expense. Without healthier subscribers in the same pool helping to share expenses, the cost of insurance will skyrocket. Remotely affordable insurance will simply not be offered to those

who most need it to protect against devastating expenses. Insurers will offer more affordable prices for policies with either preexisting condition exclusions or an insurer’s right to rescind when a subscriber becomes too expensive, but such policies leave purchasers exposed to the very risks insurance is designed to blunt. One commonly proposed solution will not work at all: prohibiting insurers from segmenting premiums, rescinding insurance, and excluding preexisting conditions, creating a “communityrated” premium open to all potential subscribers at any point in time. By themselves such prohibitions are actually likely to increase the ranks of the uninsured. Inevitably they raise premiums for the healthier and younger parts of the population; then these groups are even less likely to insure. In turn, premiums for those who remain must increase even more. An insurance “death spiral” ensues. There is an obvious solution: do not allow people to pick their time to get insured, postponing insurance when they think its expense to be a poor bargain given their current good health. People need to pay in all along. If market failure is to be prevented, not only must insurers be barred from using preexisting condition exclusions, waiting periods, and widely varying riskrated premiums, but people must be required to have insurance. A second kind of failure also marks health care markets—not for insurance, but for the provision of care itself. In a society that does not provide or require insurance for everyone, many uninsured people will arrive at hospitals in emergencies unable to pay. If hospitals are under little competitive pressure to offer the best prices to insurers to get the business of their subscribers, they may choose to offer uninsured persons uncompensated care, recouping the cost by shifting it onto others through higher charges for services provided to paying, insurance-supported patients. Under competitive pressure, however, no individual hospital can afford to provide that unless its competitors also do. When they are not required to do so, most will not, and the socially desired good of delivering even just emergency care to everyone will not be achieved. Exactly this set of forces played out among U.S. hospitals in the 1980s. Collectively, citizens then had a choice: watch hospital after hospital turn critically ill patients away, or level the playing field for those who want to provide and cost-shift such care. People apparently regarded the former

Justice, Liberty, and the Choice of Health-System Structure as unpalatable; through political processes they chose the latter. In 1985 (reaffirmed in 1998) Congress passed EMTALA, the Emergency Medical Treatment and Active Labor Act, requiring all hospitals to accept nonpaying patients for emergency care (EMTALA 1998, Lee 2004).5 Market failure for uninsured emergency care was addressed by legislative mandate. These two market failures for insurance and care must be acknowledged before the comparative moral advantages of different basic structures can be accurately discerned. The multi-payer option for system structure, in particular, has to be adjusted to account for market failure. Two moral principles, concerning free-riding and equal opportunity, are relevant to this adjustment.

THE ANTI-FREE-RIDING PRINCIPLE Arguments about choice of basic health care system are significantly about the limits of state power. One must look at general arguments for state power for suggestions about whether a society may restrict the liberty of providers, insurers, subscribers, and patients for the sake of equity or efficiency. One argument in particular, the argument from “public goods,” has been regarded by conservatives and classical liberals as powerful in justifying a state’s limited coercive power. The essential benefits of the state inevitably accrue to everyone—that is, its goods are “public” and “nonexclusive.”6 Therefore the state may extract from everyone his or her individual fair share of taxes and obedience. From a liberty-emphasizing perspective, as we shall see, the powerful element in this argument is that the preferences of individuals for a collective enterprise support state coercion. The argument can be fleshed out in terms of a more formal AFRP, sometimes known as the “principle of fairness.” The AFRP speaks to situations where people receive benefits without paying their share of expense: A person should pay her share of the costs of a collective enterprise that produces benefits from which she cannot be excluded, unless she would actually prefer to lose all the benefits of the enterprise rather than pay her fair share of its costs.7

Hypothetical preference and consent of the person receiving the benefits is the correct limiting condition, as stated here. It is not the weaker condition

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of a person’s mere acceptance of the benefits (see Nozick 1974, p. 94). It is also not the stronger condition of persons’ actual consent, unless consulting them for their actual consent is feasible and not prohibitively costly (Menzel 1990, pp. 29–31). The principle applies in circumstances where it is very difficult if not impossible to exclude a person from receiving the good at issue (that is, it is a genuinely “public” good), and the test the community must meet if it is to respect the person as a free and responsible individual when it requires her to contribute her fair share is this: if push were actually to come to shove and the person would have to pay to gain the benefits, she would choose to pay. Suppose, for example, that individual residents in the neighborhood of a park cannot feasibly be excluded from receiving many of the park’s benefits, and suppose that they would in fact agree to pay their share of its expense if that were necessary to receive its benefits. Then, even if we can no longer feasibly ask their consent (by putting the matter to a vote, say, because the park already exists), we may compel them to pay their share of expense. It is not their mere “acceptance” of the park’s benefits (say, by not moving away) that justifies taxing them for its collective expense. It is the fact that, were they to have to choose between paying their share of the park’s expense or going without its benefits, they would pay. Any argument that a person must pay her fair share is then only as good as the descriptive accuracy of the claim that in fact she would agree to pay that share if she must to receive benefits. It is often difficult, however, to be confident about such claims. The most fundamental difficulty is that we have trouble putting people to a true test of whether they will consent to contribute their share in order to avoid losing the benefits; if they cannot realistically be excluded from the benefits (that is, the goods are truly “public”), any consent we might attribute to them remains forever hypothetical. Furthermore, even if we could exclude people to give a sense of reality to the test, they may still be tempted to “hold out,” hoping both that others will come forth to get the collective enterprise off the ground anyhow and that it will then be too difficult to exclude them. Unless we are simply going to turn a blind eye to free-riding, we end up having to depend on fallible judgments about hypothetical consent. We just have to make those judgments as accurately as we can. Having embraced hypothetical consent as necessary to apply any AFRP in the actual world,

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we will still have to confront another difficulty in using the principle to justify coercion: some legitimate “honest holdouts” may remain, people who receive benefits from the enterprise less than their share of its costs. Coercive payment laudably catches many free-riders, but it also catches some who honestly prefer to forgo all benefits to paying their share of costs (Schmidtz 1991, p. 84). Why should they, too, have to fund what is then essentially other people’s chosen projects? Perhaps, then, all we have is an AFRP that proclaims freeriding to be regrettable, not one in which it is objectionable enough to justify coercively extracting contribution. Additional considerations, however, show that AFRP is powerful enough to justify coercion: (1) Honest holdouts and free-riders are not necessarily different people. If the good that the collective enterprise produces is virtually universal, then even if one is an honest holdout because one judges one’s benefit insufficient to balance one’s fair-share cost, the matter may be a close call. And even if one’s status as an honest holdout should block enforced participation, the fact remains that if the enterprise proceeds and one is not required to help pay, one still gets for free a benefit that may be nearly worth one’s cost. Another factor is also relevant to a balanced judgment about costs and benefits: how close do alternative arrangements of private contract come to achieving benefits equivalent to those of the collective enterprise? The closer they come, the weaker the case for the collective enterprise and its required contribution to prevent free-riding. (2) The AFRP as stated here is itself fundamentally a pro-individualist principle compatible with libertarian senses of justice. In holding people responsible for the costs of the collective enterprises from which they benefit, AFRP keeps collective solutions to human needs in tow, tying them tightly to people’s ability and willingness to pay their costs. AFRP thus provides a strong connection between social arrangements and individual preference. It is a powerful principle in justifying social coercion of membership and contribution precisely

because it fits squarely within a social philosophy that highly values individual liberty. We can summarize these points about free-riding and coercion generally, before applying them to health insurance. Society may require individuals to contribute to a collective enterprise from whose benefits they cannot feasibly be excluded, unless they would actually prefer entirely forgoing the benefits to paying their fair share of costs. Ideally, honest holdouts for whom the benefits are not worth a fair share of costs should not be forced to contribute, but several factors must be considered before rejecting coercion: the degree to which honest holdouts still benefit considerably from the arrangement, and how close any alternative non-coercive arrangements come to producing equivalent community benefits.

FREE-RIDING AND INSURANCE A central question about the basic structure for health care concerns compulsory coverage: should people be at liberty to go uninsured, or should everyone in the society be covered by mandating basic insurance or centralizing insurance under a single-payer structure? From a liberty-focused perspective, health care is a net good only insofar as people are willing to invest in it because it sufficiently contributes to their welfare. It might then seem that people should be at liberty to have not only as much but as little health insurance as they desire, including none. Even within a liberty-focused perspective, however, this is highly debatable. Clear aside two cases from the discussion: people who could definitely pay out of pocket for any care from which they might later significantly benefit, and people who will not subscribe to even the leanest plan because they simply do not have the necessary resources after paying for more immediate needs. People in the first situation are not exposed by lack of insurance, and do not expose others. People in the second situation, let us assume, are either provided basic insurance or the means for it to be affordable. Then the realistic question becomes: should people who can afford insurance but cannot afford to pay out of pocket for care they may need be required to insure? I will refer to the subset of persons who would choose not to subscribe as “rejecters.” When others insure and rejecters do not, rejecters still benefit in numerous ways. They seldom see friends and relatives die or suffer for

Justice, Liberty, and the Choice of Health-System Structure lack of insurance, and they avoid being pulled by powerful attachments into bailing them out. They also live in a more buoyant and healthy society due to the care that many of the insured around them get more dependably. Suppose, furthermore, that when put to the test, rejecters would be willing to pay a certain amount of their own resources if they simply had to in order to obtain these benefits from others’ insurance. Notice: these benefits are above and beyond the benefits to them of their own insurance were they to have to buy it. To the extent that these benefits are valuable to them, rejecters free-ride on other people’s decisions to insure. A complementary point is that rejecters impose certain costs on others. An uninsured person presents others with torturous decisions about whether to bail her out when she becomes ill beyond her means. Suppose they do bail her out. If the moral and emotional pull on their heartstrings and wallets is a peculiar function of their individual values, it might be said that it is they, not the person who failed to insure, who bears responsibility. To the extent, however, that their anguish and cost is an eminently reasonable and expected reaction—and especially if rejecters, too, typically have this reaction—then she is responsible, not they. Thus, with respect to costs they shift to others as well as benefits they unavoidably receive, rejecters free-ride on others who insure.8 These free-riding elements are endemic in any situation where many are insured and others are not. To them must be added another important free-riding element that as a matter of contingent historical fact is present in the U.S.: everyone is guaranteed access to emergency care. In 1989, with little political controversy or opposition, Congress passed the previously mentioned Emergency Medical Treatment and Active Labor Act, barring hospitals from denying emergency care to patients unable to pay (EMTALA 1998, Lee 2004). With this partial step toward universal coverage, people considering insurance could see that even without it, their urgent needs will still be provided—emergency room care at least, and, it turns out, a good bit more. As a practical matter, hospitals find it virtually impossible to confine the required care they provide to the ER. Patients not kept on for further care will likely just show up again later, incurring yet more uncompensated emergency care. Because of EMTALA, therefore, hospitals end up providing much more than just ER care. Over $100 billion of care ends up being annually “cost-shifted” onto paying patients, almost all of

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whom are insured. The costs shifted to them are hardly small: roughly $1,000 higher annual premiums for every insured family (Families USA 2005). Inefficiency exacerbates these concerns about free-riding. Universal access to emergency care by itself creates inefficient overreliance on ERs. It may be understandable why a society unwilling to commit to universal access more generally would choose emergency care as one of its first steps toward universal access,9 but the inefficiency created by no equivalent access to primary care is absolutely predictable. It makes the cost-shifting that flows from EMTALA all the more galling and unfair. It is bad enough for those who incur great expense to purchase insurance to pay noticeably higher premiums because of predictable costshifting; it is worse to realize that much of the money used to finance mandated emergency care could achieve greater benefit at less expense if used for primary care. These facts are critical in building an anti-freeriding argument against leaving insurance voluntary, but they are not sufficient. Applying the previous analysis of AFRP, we must ask three further questions to determine whether we have the sort of free-riding that warrants correction by required contribution: (1) Does mandatory basic insurance to eliminate free-riding constitute at least a break-even arrangement for those who resist participating, or instead, are those who insist they do not want insurance “honest holdouts” for whom benefits are in fact not worth a fair share of cost? (2) If some are in fact honest holdouts, do they still benefit enough from widespread insurance that the value they receive is (nearly) worth the cost they would be required to pay? (3) Can any alternate, non-mandatory arrangement create close to the same individual and social benefits as the collective enterprise that requires their contribution? All three can be answered to support the case for making insurance compulsory. For the U.S., addressing the first question requires reference to the guarantee of emergency care. The crucial question for determining whether free-riding is morally objectionable is this: would rejecters prefer to go entirely without the benefits provided by both the guarantee of emergency care and living in a society where insurance is prevalent? The list of benefits they have to be willing to forgo to escape the grasp of the AFRP is long: guarantee of access to emergency and associated care even if one cannot pay, freedom from the anguish experienced

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as a spectator-citizen if hospitals were to turn emergency patients away at the door, freedom from the emotional and financial pressure to bail out friends and relatives, the “social buoyancy” of the healthier society that basic insurance helps to achieve, etc. This list is in addition to what persons would gain in security and direct care from the basic insurance they would have if required to insure. There is another especially tricky aspect of free-riding situations: even with the crucial question thus clarified, because there is no way to exclude people from public-good benefits, there is no actual behavioral test to which we can put people to detect their real answer. One can idly envision living in a society that had virtually no insurance and no guarantee of emergency care, to see whether one would imagine it a good bargain, but that is not a real test. No resistant person’s actual choice can accurately tell us that her benefits from universal basic insurance fall short of her fair share of costs. We can only give non-definitive answers to these ineradicably hypothetical questions—that is, educated, discerning guesses. Some indicators are helpful. EMTALA enjoys extremely widespread support, even from parts of the political spectrum where mandates on market participants are generally castigated; apparently people across the political spectrum put high value on not being rejected for emergency care. Broader basic insurance also garners widespread support. Even the most conservative opponents of greater regulation and central government sponsorship do not denigrate insurance or say it does not matter that nearly a sixth of the population is uninsured. They instead laud the capacities of a reformed marketplace to deliver insurance and reduce the ranks of the uninsured. The most basic indication of all may be that many people of similar resources purchase their own insurance, thinking it cost-worthy even without taking into account any of the public-good benefits they inevitably receive. And when people are exposed to very high premiums by becoming high-risk subscribers, they tend not to react passively. They typically either pay the hardship-causing premiums, complain bitterly, or lend their political support to causes to reform insurance. When all these considerations are totaled up, only a small portion of those who reject insurance likely do so as “honest holdouts” qualified to escape the grasp of the AFRP. To answer the second question, of course some probably are honest holdouts, who qualify for that escape. Given the array of benefits noted above,

however, it is likely that even for these persons, benefits come close to being worth fair-share cost. While they are genuine honest holdouts, they are still partial free-riders if nothing by way of contribution is required of them. One option at this turn in the argument is to claim that what turns out to be their small net loss in being required to participate in the collective enterprise is outweighed by the benefits of requiring the greater number of true free-riders to contribute.10 To answer the third question, the anti-freeriding argument against allowing people to go uninsured may still be unpersuasive if an alternative, voluntary arrangement comes close to achieving the same benefits. Does it? Some prominently proposed free-market alternatives that stop short of mandating insurance are clearly inadequate; one, notably, was the proposal by the U.S. Republican congressional leadership in fall 2009 that would reduce the ranks of the uninsured by only 3 million by 2019, leaving 52 million, virtually the same percentage of the population, uninsured (Pear & Herszenhorn 2009, Herszenhorn 2009, 2010.) More complete alternative proposals, by contrast, would directly address the coverage of preexisting conditions, provide much larger subsidy pools for high-risk subscribers (upwards of $15 billion annually), and revise the taxable income exclusion for employer-sponsored premiums into a tax credit for everyone’s basic insurance that would provide greater assistance to lowerincome subscribers (Capretta & Miller 2009, 2010). How comparatively effective such proposals would be in correcting market failure in insurance and reducing the ranks of the uninsured is debatable. In the less partisan atmosphere of the 1990s, conservative defenders of a multi-payer market (e.g., Pauly et al. 1992) did not shrink from including compulsory insurance as necessary to avoid free-riding and achieve efficiency.11 A cautious conclusion is that in addressing insurance market failure, even the most comprehensive and aggressive of the not-insurance-mandating, multipayer market proposals of 2009–10 would be no more effective, and probably less effective, than the soft mandate of the 2010 legislation. Whether the example is the multi-payer insurance markets of countries such as Germany, the Netherlands, and Switzerland, or the proposals of conservative scholars such as Pauly et al. (1992) from earlier decades, a universal mandate of basic insurance is better. Thus, the AFRP, applied to markets for health insurance, justifies mandating basic insurance.

Justice, Liberty, and the Choice of Health-System Structure The argument is made entirely within the confines of a social philosophy of classical liberalism and a limited, consent-constrained theory of the state. A multi-payer competitive market as an option for the structure of a health care system thus gets modified, by elements within its very own philosophical home, into insurance as universal as that in any single-payer or national health service system. The complete argument for mandatory, universal insurance for basic care will employ additional moral principles as well. To those I now move. Suppose we mandate insurance on the basis of the previous, anti-free-riding argument. It would be unfair to require a high-risk person to buy insurance with financially prohibitive premiums. Beyond the need for income-related subsidies to address affordability, a major problem is raised by differences in likelihood of illness. Those more likely to become ill (“high-risk subscribers”) will not be treated fairly unless insurers are restricted in allowable premiums. This point is derived from two principles. The one specific to health care I refer to as Just Sharing. Supporting it is a broader, more fundamental principle, EOW. Both make central claims about justice.

E Q UA L O P P O R T U N I T Y F O R W E L FA R E , A N D J U S T SHARING OF EXPENSES Left to their own choices in a voluntary, unfettered competitive market, the relatively healthy and young tend to insure for less care than others. Even if they insure for the same scope of care, they pay much less. Huge differences in premiums for likely well and ill inevitably emerge. One conception of distributive justice that regards such differences in the cost of insurance as unjust is particularly inclusive of liberty. This conception is expressed in the principle of EOW: People should not be worse off than others through no fault or voluntary choice of their own. Situations where people are worse off than others because of their own sufficiently blameworthy actions or choices are not unjust, as painful or compassion eliciting as those situations may be.12

Equal opportunity for welfare differs from equality of welfare per se, though the opportunities to be made equal are still ranked by the prospects for welfare that they afford. Because it focuses on opportunity, not welfare per se, EOW preserves a considerable role for individual choice.

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Even with all its moderate stripes, EOW has straightforward implications for the differences in insurance premiums for the likely ill and well. EOW generates a secondary principle I refer to as Just Sharing: The financial burdens of medical misfortunes ought to be shared equally by well and ill alike, unless individuals can be reasonably expected to control those misfortunes by their own choices.

Just Sharing is a moderate principle. It is not a strong principle of general redress for natural misfortune that would call on us to equalize the entire life chances of well and ill. Just Sharing’s goal is modest: equalizing the financial costs of illness, a goal that is, largely, readily achievable. Arguably, EOW and Just Sharing are widely held views of distributive justice in U.S. moral culture.13 To be sure, there are opponents of even such a moderate notion of equity. Archlibertarians, for example, may argue that short of contract, actual individuals have no obligations of justice to others; obligations never arise out of fate alone. Their position has some intuitive attraction: if through no act or oversight or inaction of yours, I am struck, say, by lightning, why should you be obligated to help me? Even in the allegedly individualistic U.S, however, few people think about the overall burdens and advantages in life along such strictly “separatist” lines. Most, I suspect, hold a conception of equitable distribution in which the initial burden of proof is simply flipped: if there is no relevant difference between people (for example, one is no more deserving than another), why shouldn’t one be obligated to share in another’s most unfortunate, life-agenda–setting burdens? Being alive at all is a gratuitous fortune for each of us. So on what basis may a person legitimately complain if truly undeserved burdens get pooled in order to help equalize life chances and overall opportunities for well-being? Obligations of justice are not grounded only in contract by actual individuals. If indeed a view of justice similar to EOW and thus also to Just Sharing is widely shared, then an additional public-goods, anti-free-rider argument comes into play. Residing in a society that actually lives by Just Sharing in its basic policies about health care will be a benefit, not merely to the ill, but to all who morally agree with the Just Sharing principle. One’s fair share of the costs of that moral benefit involve participating in relatively equal, community-rated premiums.

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To be sure, some may be “honest holdouts” (see previous sections) who do not include the principle of Just Sharing within their moral views. We have to ask, however, which is worse: out of respect for truly honest holdouts, do we put up with the free-riding behavior of many likely well who do share the principle but have a self-interest in holding on to low premiums, or do we regrettably coerce contributions from a few honest holdouts to eliminate the unfairness of a greater number of likely well free-riders paying low premiums? Since the larger set of individualistic values includes not only various liberties but something like the AFRP, and since the principle of EOW from which Just Sharing is derived is already a notably liberty-incorporating principle, the use of coercion in mandating insurance cannot be ruled out. Where the argument finally comes out on the question of coercion to prevent freeriding may depend on empirical facts about how widely held the Just Sharing principle is in a particular society. Just Sharing also bolsters other parts of the argument for mandating insurance. For a mandate to be fair, premiums must be affordable. A portion of affordability needs to come by subsidies, but another part comes from applying Just Sharing to narrow the permissible range of premiums between well and ill. A sufficient solution is not, by itself, to bar experience-rated premiums and require “community rating.” That will likely create even greater numbers of uninsured: the young and healthy will be even more tempted to go without insurance as their premiums, now community-rated, rise. As more healthy subscribers drop out, however, premiums for those who remain rise yet again. To avoid such a “death spiral” for insurance, everyone needs to insure for basic care needs and not wait to pick the time of their insurance.

MEDICAL E G A L I TA R I A N I S M EOW makes another major contribution to judgments about the justice of different basic structures for a health care system. It tells us that different “tiers” or levels of health care are not by themselves unjust, even if they are related to income level. EOW’s focus is on equality of opportunity, and moreover, opportunity to achieve a very broad goal, welfare. Many other basic goods besides health care significantly influence opportunity; health care is not the only (or even major) determinant of health; and health is not the only

or dominant dimension of human welfare. For all these reasons the notion of justice expressed in EOW tolerates widely varying choices about financial investment in health care. A more restrictive distributive ideal such as equality of health, for example, even if it legitimately rests on some special contribution that health makes to opportunity and welfare, limits freely chosen tradeoffs between health and other goods in a way that EOW does not. To take an extreme but conceptually coherent example, someone may plausibly think that it better serves her opportunity for welfare to purchase only the bare minimum on health insurance—for example, a policy that covers only evidence-based forms of preventive care, very basic primary care, and “catastrophic”-level care for accidents and the most common acute diseases. She can then invest what she consequently saves on insurance in educational and professional advancement she could otherwise not afford.14 Opportunity and welfare cannot be separated from the subjective judgments of individuals who have different conceptions of fruitful, satisfying lives. EOW’s vision of distributive justice blunts the tension between egalitarian and libertarian accounts of justice. Respecting the liberty necessary to realize equal opportunity for welfare becomes one of the very ingredients of equity and justice. Thus EOW will strongly resist the libertydenying claims of Medical Egalitarianism, the view that care for persons of equal medical needs ought to be equal regardless of a patient’s income. Medical Egalitarianism does indeed push against pluralistic market systems, but the view itself is dubious. Take Daniels’ 1985 argument for a modified version of some such special equality for health care (Daniels 1985a, 1985b). Since illness and disability are major, unequal barriers to equal opportunity, health care ought to be distributed straightforwardly according to medical need. Daniels defines illness and disease as deviations from “the natural functional organization of a typical member of a species.” A person has a health care need when care is necessary to achieve or maintain that “species-typical normal functioning.” Maintaining or regaining health is not important simply because it is necessary for satisfying people’s desires. Health care’s special role is something further: preserving or restoring the “normal opportunity range.” This argument is highly problematic. The concept of opportunity involves three sorts of

Justice, Liberty, and the Choice of Health-System Structure reference: some goal or set of goals toward which we strive, the absence of all insurmountable obstacles to that goal, and in certain contexts, the absence of other particular obstacles to that goal. Equal opportunity then refers to people’s mutual freedom from a similar set of obstacles to the same set of goals (Westen 1985). The argument for the special equality of health care based on equal opportunity omits one of these elements: a set of goals to which illnesses are impediments. Daniels’ argument is then caught on the horns of an impossible dilemma (Menzel 1990, pp. 124– 125). On the one hand, if its point is just that the opportunity to pursue any set of goals is set back by disease and disability, then, though true, it seems appropriate for a rational poor person to adjust her level of medical care downward from what the middle-class person selects in order to balance out her health care needs with other important goals. The set of all goals, after all, is the point of the project. On the other hand, if the opportunities that health care helps to equalize exclude or downgrade the competing goals that might lead a rational poor person to adjust his preferred level of health care downward, we concede the point of health care’s goals being especially important. The concept of “opportunity” performs no magic in abstraction from the real lives of preferring individuals. And once we get to those real lives, we see different, plausible opinions about what resources to invest in health care in order to maximize opportunity. EOW allows that. Thus, for justice as EOW, the notion of an equitable distribution of care between rich and poor is much less rigid than often thought, and it is certainly not captured by Medical Egalitarianism and a one-tier system. The attraction we have to the proposition that a decent minimum of health care for the poor is roughly equal to the care that others who are not poor obtain may reflect practical considerations, not moral principle (Menzel 1992). Perhaps providers fall into the routine of using a uniform conception of “good” and “basic” care. If so, there would be no way, short of excluding specific services, to distinguish a decent minimum from the care that is commonly offered to the middle class. Lumping the poor in with the middle class under a unitary standard of required care may be the only politically feasible way of getting additional resources to the poor. But then it is the public attitudes that politically restrict government to that form of provision that are the problem (Menzel 1990, pp. 126–128).

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CONCLUSION My argument has unfolded in a sequence of moral layers. (1) Correcting for market failure and freeriding requires universal, mandated insurance for basic care. Even in a multi-payer market system that preserves significant choice for subscribers, insuring for basic care should not remain an optional, voluntary matter. (2) Justice between well and ill requires that differences in insurance premiums be sharply constrained. Once premium differences are constrained, however, to prevent further free-riding and expansion of the ranks of the uninsured, insurance must be made mandatory. (3) Justice as Equal Opportunity for Welfare rejects Medical Egalitarianism as a view of health care justice. The existence of multiple tiers of health care, with universal access guaranteed only to the basic tier, need not be unjust even when effective access to higher tiers varies with income. (4) The moral principles needed to develop the arguments for these claims—an Anti-Free-Riding Principle, Equal Opportunity for Welfare, and Just Sharing—have status in a wide range of social philosophies, including liberty-emphasizing ones, and EOW is a widely held view of distributive justice. Thus, at their very core, the arguments for mandating universal insurance for basic care, for sharply narrowing the range of premium differences between well and ill, and for allowing multiple tiers to which not all have effective access incorporate both liberty and justice. While these considerations make a pluralistic and multi-tiered system potentially just for egalitarians, conversely, they and other factors may make unitary systems acceptable to classical liberals. Problems of preference translation in market competition, the unusual power of health care providers to create their own marketplace demand, and the administrative inefficiency of multiple payers may push individuals of widely varying philosophical orientations toward a unified single-payer system. This is especially true if buy-ups to additional care and insurance beyond the single-payer coverage are permitted. In all systems, drawing a line that establishes what care is “basic” will be crucial in determining the scope of the insurance that should be mandatory or universal. I do not address that challenge here. (See Chapter 11 on setting priorities for a basic minimum of universally accessible care and insurance.) Notes 1. Meaning, in this case, “negative liberty,” the liberty not to be interfered with.

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2. Examples of single-payer insurance are Canada, Taiwan, and (with some modification) France. Great Britain exemplifies countries with a national health service. Multi-payer systems include, on the highly regulated end, Germany, the Netherlands, and Switzerland, and of a much less standardized and regulated variety, the U.S. The U.S. falls into this category, however, only for a segment of its health care—that provided through private insurance. As Reid (2009) points out, U.S. health care contains segments that represent every system type: Medicare and Medicaid provide singlepayer insurance for senior citizens and the under-65 poor, and the Veterans Health Administration is a national health service for veterans. 3. I hold at arm’s length any claim that the political right, to preserve liberty, is willing to sacrifice efficiency as well as equity. Perhaps they are, with cries against “rationing,” for instance, but one of their central claims about health care is that market competition spurs greater efficiency. 4. Caution is in order. I am saying only that the moral approach developed here can provide a moral foundation for the combination of mandates, subsidies, and regulation of insurance present in the 2010 PPACA. Following out the implications of this moral foundation may require rejecting some features of the legislation and adding others. The approach articulated here is also focused more specifically on whether the case for universal, mandatory basic insurance can be derived from principles at home in moderate libertarianism and classical liberalism. On the connections between universal access and political conservatism more broadly, see Menzel and Light (2006). 5. An important element conditions the requirement: if another hospital designated and financed to provide care to uninsured persons is located within a feasibly safe transportable distance, then a hospital does not have to accept non-paying patients. 6. Public safety, national defense, or education, for example. Once a certain mass of contributors is in place, it is difficult if not impossible to exclude from these enterprises’ benefits an individual who chooses not to contribute to them. 7. The AFRP is often referred to in the philosophical literature as the “Principle of Fairness” or the “Duty of Fair Play.” See Hart (1955, p. 185), Nozick (1974, pp. 93–95), Arneson (1982), Schmidtz (1991, p. 146), and the excellent survey of the philosophical literature by Morelli (1985). Note that the “fair share” and “willing to pay” elements already include the exemption often claimed for people unable to pay. In their case, either the truly fair share of payment is virtually nothing, or, with their meager resources, they would not have been willing to pay to get the benefits; they thus have no duty to pay just because we cannot now exclude them from the benefits.

I do not attempt here a justification of AFRP itself, regardless of which version. It is possible that there are no more fundamental reasons behind AFRP to provide its justification, for it might be needed to explain why any moral principle can bind people at all: morality as a whole is the collective enterprise, and a reasonable degree of obedience is the fair share everyone is obligated to pay to gain the non-excludable benefits of morality as a social institution. 8. Such free-rider considerations may explain a great deal of the predominant attitude toward insurance in countries such as Germany and the Netherlands, where all non-indigent, low- and middle-income citizens are expected and required to get insurance (Kirkman-Liff 1991, Heubel 2000). A person who needs care but who has not insured carries social and moral disgrace, reflecting not so much paternalistic disdain for those who fail to care for themselves but condemnation for neglecting one’s social responsibilities and free-riding on others. 9. Not only is the immediate moral call of rescue more clearly in play in emergency care than in most other care, but financial responsibility for mandating it can be rather conveniently dodged because “backdoor” financing is feasible. Emergency care is provided by sizable institutions (hospitals) large enough to absorb immediate costs and shift them. No such hidden financing is as feasible for primary care, usually delivered in smaller institutional settings. 10. Besides this conceptual option in the argument, there is a practical turn: impose a “soft mandate” by exacting only a partial contribution from people who do not insure, and view it as either partial compensation for the benefits they inevitably receive or compensation for the costs they impose on others. This, arguably, is the nature of the “mandate” in the 2010 health reform law (PPACA 2010). That act’s mandate is certainly soft: no coercion, other than a penalty of $750 added to one’s tax liability. If the Families USA (2005) study is correct in its estimate that by failing to insure a person adds an average $1,000 to the annual premiums paid by a family of four, the act’s “mandate” barely even recoups costs that going uninsured shifts to others. Even then, the remaining free-riding that occurs through unavoidable receipt of public-good benefits remains unaddressed. 11. Mandates did play a prominent role in one of 2009’s most attention-getting essays. In espousing a radical revision of U.S. health care toward greater power of market forces, David Goldhill (2009) incorporated mandatory “catastrophic” insurance for high expenses, and sizable mandatory health savings accounts for more ordinary expenses, both subsidized for people of lower incomes. In the context of 2009 Goldhill was an unusually independent conservative voice, writing from the vantage point of neither a

Justice, Liberty, and the Choice of Health-System Structure political group nor an ideologically identified research institute. 12. The label EOW is used by Arneson for his version of this view (1989, 1990). EOW as stated here and in the prominent views of Arneson and G.A. Cohen (1989, 1995, 2006) resides in a family of views referred to as “luck egalitarian” justice. Segall (2010) provides a superb summary of such views and states his own version: “It is unjust for individuals to be worse off than others due to outcomes that it would have been unreasonable to expect them to avoid” (p. 13). The views are “luck egalitarian” because they all see justice not as generally equalizing whatever is the proper object of equalization in a theory of justice (welfare, for example), but equalizing it only in order to compensate for bad “brute luck.” Bad brute luck (e.g., being hit by a falling tree one had no reason to suspect would fall) is distinguished from bad “option luck,” luck that occurs in a chain of events in which one’s own voluntary choices play a role. Justice requires equalization only for bad brute luck, not bad option luck. Examples of the latter include buying many lottery tickets but not winning, or playing Russian roulette and ending up dead. A more debatable example that some would regard as bad option luck and others would not is becoming seriously diabetic after years of heavy sugar intake and modest obesity. The ambiguity stems from the fact that though heavy sugar ingestion and obesity are wellknown risk factors for diabetes, most people who heavily ingest sugar and are obese do not develop diabetes. 13. Factual evidence for this claim is the clearest in the case of Just Sharing. (a) The need for the likely well to share in the expenses of the more likely ill is one moral factor behind the existence of Medicare, covering the elderly, with higher predicted health-care expenditures, as the first segment of the population guaranteed access. (b) Passing the EMTALA and sticking by it involves a recognition that the costs of treating one segment of ill persons need to be borne by others. Largely through cost-shifting to insured paying patients, most of the cost predictably ends up being paid by subscribers who are less ill. (c) The clearest and most significant evidence is the most recent: within the fractious and vitriolic debate in 2009–10 about health insurance reform, one of the few elements that conservatives and liberals alike seemed to agree on is that people should not be prevented by their health status from obtaining or continuing insurance. Democrats and Republicans argued about whether to solve this by limiting the range of premium differentials (Democrats) or by subsidized high-risk pools (Republicans), but even the Republican proposal reflects the need to roughly equalize the costs subscribers pay for insurance. 14. This example is not specifically described but is conceptually harbored in Goldhill (2009).

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References Arneson, R. (1982). The principle of fairness and freerider problems. Ethics 92:616–633. Arneson, R. (1989). Equality and equal opportunity for welfare. Philosophical Studies 56:77–93. Arneson, R. (1990). Liberalism, distributive subjectivism, and equal opportunity for welfare. Philosophy and Public Affairs 19(2):158–193. Capretta, J.C., & T. Miller (2010). How to cover preexisting conditions. National Affairs, no. 4, summer. Available: http://www.nationalaffairs.com/publications/detail/how-to-cover-pre-existing-conditions. July 15, 2010. Capretta, J.C., & T.P. Miller (2009). The insurance fix. National Review, November 2. Available: http:// www.eppc.org/publications/pubID.3975/pub_detail. asp. July 15, 2010. Cohen, G.A. (1989). On the currency of egalitarian justice. Ethics 99(4):906–944. Cohen, G.A. (1995). Self-Ownership, Freedom and Equality. Cambridge: Cambridge University Press. Cohen, G.A. (2006). Luck and equality: a reply to Hurley. Philosophy and Phenomenological Research 72(2):439–436. Culyer, A.J., A. Maynard, & A. Williams (1981). Alternative systems of health care provision: An essay on Motes and Beams. In M. Olson (ed.), A New Approach to the Economics of Health Care, pp. 131–150. Washington: American Enterprise Institute. Daniels, N. (1985a). Just Health Care. Cambridge: Cambridge University Press. Daniels, N. (1985b). Fair equality of opportunity and decent minimums: a reply to Buchanan. Philosophy and Public Affairs 14:106–110. EMTALA: The Emergency Medical Treatment and Active Labor Act (1998). Pub. L. No. 99–272, 100 Stat. 164, codified as amended at 42 U.SC 1395dd. Engelhardt, H.T. (1996). The Foundations of Bioethics (2nd ed.). New York: Oxford University Press. Families USA (2005). Paying a Premium: The Added Cost of Care for the Uninsured, author K. Stoll, with data analysis by K. Thorpe. New York: Families USA. Available: http://www.familiesusa.org/assets/ pdfs/Paying_a_Premium_rev_July_13731e.pdf. January 3, 2010. Goldhill, D. (2009). How American health care killed my father. The Atlantic, September, pp. 38–55. Hart, H.L.A. (1955). Are there any natural rights? Philosophical Review 64. Herszenhorn, D.M. (2009). Budget monitor says G.O.P. bill leaves many uninsured. New York Times, November 4. Available: http://prescriptions.blogs. nytimes.com/2009/11/04/budget-monitor-questionsimpact-of-gop-health-bill. July 15, 2010.

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Herszenhorn, D.M. (2010). Hoping to show the G.O.P’s role. New York Times, February 21, p. A17. Heubel, F. (2000). Patients or customers: ethical limits of market economy in health care. Journal of Medicine and Philosophy 25:240–153. Kirkman-Liff, B. (1991). Health insurance values and implementation in the Netherlands and the Federal Republic of Germany. JAMA 265:2496–2502. Lee, T.M. (2004). An EMTALA primer: the impact of changes in the emergency medicine landscape on EMTALA compliance and enforcement. Annals of Health Law 13:145–178. Menzel, P.T. (1990). Strong Medicine: The Ethical Rationing of Health Care. New York: Oxford University Press. Menzel, P.T. (1992). Equality, autonomy, and efficiency: what health care system should we have? Journal of Medicine and Philosophy 17:33–58. Menzel, P.T., & D.W. Light. (2006). A conservative case for universal access to health care. Hastings Center Report 36: 4 (July–August):36–45. Morelli, J. (1985). The fairness principle. Philosophy and Law Newsletter (American Philosophical Association), spring, 2–4. Nozick, R. (1974). Anarchy, State, and Utopia. New York: Basic Books.

Patient Protection and Affordable Care Act [PPACA] (2010). U.S. Pub. L. No. 111–148 and supplement Pub. L. No. 111–152, Health Care and Education Reconciliation Act. Available: http://frwebgate. access.gpo.gov/cgi-bin/getdoc.cgi?dbname=111_ cong_public_laws&docid=f:publ148.111.pdf and www.opencongress.org/bill/111-h3590/text. June 29, 2010. Pauly, M.V., P. Danzon, P.J. Feldstein, & J. Hoff. 1992. Responsible National Health Insurance. Washington, DC: The American Enterprise Institute Press. Pear, R., & D.M. Herzenhorn (2009). G.O.P. counters with a health plan of its own. New York Times, November 3. Available at http://www.nytimes. com/2009/11/04/health/policy/04health.html. July 15, 2010. Reid, T.R. (2009). The Healing of America: A Global Quest for Better, Cheaper, and Fairer Health Care. New York: Penguin Books. Schmidtz, D. (1991). The Limits of Government: An Essay on the Public Goods Argument. Boulder: Westview Press. Segall, S. (2010). Health, Luck, and Justice. Princeton, NJ: Princeton University Press. Westen, P. (1985). The concept of equal opportunity. Ethics 95:837–850.

3 A Utilitarian Approach to Justice in Health Care MARK S. STEIN1

INTRODUCTION In this chapter, I present a utilitarian perspective on distributive justice in the field of health care. I focus on the contest between utilitarianism and egalitarianism and on the contest between utilitarianism and prioritarianism. I also attempt to clear up some confusion about the topic of aggregation. At the end of this chapter, I consider the place of deontological constraints; I address the famous hypothetical example in which a utilitarian transplant surgeon kills an innocent person and harvests the victim’s organs to save the lives of five other people. U T I L I TA R I A N I S M A N D COMPETING THEORIES Many theories of justice can be described across two dimensions, according to the metric they use and the principle or function they apply to the chosen metric.2 For utilitarianism, the metric is welfare (or utility), and the principle is unweighted maximization. Utilitarianism tells us to maximize welfare, counting equally the welfare of each. In the distribution of scarce health care resources, utilitarianism generally tells us to help those who would most benefit from the resources, “benefit” being understood as an increase in welfare.3 Utilitarianism is not the only benefit-maximizing theory. Some theories use the same principle as utilitarianism—unweighted maximization—but a different metric, a different benefit. The theory of wealth maximization tells us to maximize wealth, counting everyone’s wealth equally. The theory of life-year maximization tells us to maximize the lifespan of people, giving equal weight to the life years of each. Under some circumstances, the maximization of a benefit other than welfare can serve as a proxy for utilitarianism. Welfare is hard to measure, while other benefits, such as wealth and lifespan, are relatively easier to measure. The maximization

of wealth, though, is a fairly poor utilitarian proxy. Among other problems, wealth has diminishing marginal utility: the poor gain more welfare from additional money than do the rich. The maximization of lifespan may be a better utilitarian proxy. In the distribution of scarce life-saving resources, I believe, the utilitarian course is generally (though not always) to maximize life years.4 The major alternatives to utilitarianism are distributive theories that are egalitarian or that mix utilitarian and egalitarian elements. By “egalitarian,” I chiefly mean a theory that gives preference to those who are in some way worse off. If the slogan of utilitarianism is “help those who can most benefit,” the slogan of egalitarianism is “help those who are worse off.” The term “egalitarianism” has been given different meanings by different distributive theorists. In recent years many theorists have taken to using the term to refer only to a theory that seeks greater equality as a goal in itself, irrespective of the effect that increased equality would have on the welfare of anyone. Such a theory would “level down”: it would reduce the welfare of the better-off without doing anything for the worse-off, or it would reduce everyone’s welfare to achieve greater equality. I do not adopt this restrictive definition of “egalitarianism,” as it would exclude most distributive theorists who have considered themselves egalitarians over the years, including Rawls. The two main varieties of egalitarianism are welfare egalitarianism and resource egalitarianism. Welfare egalitarianism uses the same metric as utilitarianism—welfare—but a different principle of distribution. Resource egalitarianism, as compared to utilitarianism, uses both a different metric and a different principle. Resource egalitarianism uses essentially the same metric as wealth maximization: resource egalitarianism (equalize resources) is to wealth maximization (maximize resources) as welfare egalitarianism

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(equalize welfare) is to utilitarianism (maximize welfare).

T H E I M P L AU S I B I L I T Y O F E G A L I TA R I A N I S M Even leaving aside extreme egalitarian theories that would “level down” to achieve equality, the egalitarian approach to distributive justice is implausible. A thoroughgoing egalitarian theory (one that does not contain elements of utilitarianism) is completely insensitive to relative benefit. Such a theory would allocate scarce resources to someone who is worse off even if some other candidate could gain vastly more welfare from the resources. It often seems right to distribute resources to those who will most benefit, with “benefit” understood as an increase in welfare.5 Consider an example given by Peter Singer in his book Practical Ethics, which I will call the Singer Earthquake Case. After an earthquake, Singer imagines, we come upon two victims, one more severely injured than the other: The more severely injured victim, A, has lost a leg and is in danger of losing a toe from her remaining leg; while the less severely injured victim, B, has an injury to her leg, but the limb can be saved. We have medical supplies for only one person. If we use them on the more severely injured victim the most we can do is save her toe, whereas if we use them on the less severely injured victim we can save her leg.6

Most people, I believe, would agree with Singer that here we should not distribute the scarce medical supplies to the person who is more severely injured (victim A, who has already lost a leg and risks losing a toe on her remaining leg). Rather, we should distribute the medical supplies to the person who can benefit more (victim B, who risks losing a leg, but has no other injury). The Singer Earthquake Case is one of innumerable examples (real and imaginary) in which it seems right to help the candidate for scarce resources who can most benefit, even if another candidate is in some way worse off. Egalitarianism cannot give a satisfactory answer in such cases. If instituted society-wide, a thoroughgoing egalitarianism would provide either too much help to people with illness and disability or too little help, depending on what is sought to be equalized. An egalitarianism that seeks to equalize welfare would massively redistribute social

resources to those severely ill or severely disabled people who are considered to have the least welfare,7 such as, for example, young people with terminal cancer. Welfare egalitarianism would continue to lavish resources on those with least welfare long after they ceased to derive much benefit from additional resources. On the other hand, an egalitarianism that seeks to equalize material resources would in general make no special provision for people with illness or disability. Resource egalitarianism would consider the poor (those with fewest material resources) to be worst off; the ill and the disabled would be entitled to no extra resources if such extra provision would reduce the minimum income afforded to the poor.8 While resource egalitarianism and welfare egalitarianism point toward opposite implausible extremes, their implausibility arises from a common defect: insensitivity to relative benefit. Resource egalitarianism would distribute too little to people with illness or disability who could benefit greatly from additional resources; welfare egalitarianism would distribute too much to people with illness or disability who could benefit hardly at all from additional resources. By contrast, utilitarianism is completely sensitive to relative benefit. Utilitarianism seeks to place resources where they will do the most good. Only utilitarianism, or a theory with a large element of utilitarianism, can avoid both inadequate provision for the ill and disabled and excessive redistribution to the ill and disabled.9 Utilitarianism is the golden mean of distributive justice. I take the terms “resource egalitarianism” and “welfare egalitarianism” from Ronald Dworkin.10 Like Dworkin, I use the term “welfare” broadly. A number of theorists who claim to have some metric other than welfare can usefully be seen as welfare egalitarians. Amartya Sen and Martha Nussbaum say that they want to equalize not welfare, but “capabilities” to achieve “functionings”;11 G. A. Cohen says that he wants to equalize not welfare, but “access to advantage.”12 Nevertheless, all such theories are vulnerable to the same criticism as welfare egalitarianism: they set no acceptable limit on redistribution to the severely ill and severely disabled. Equality of capabilities would result in excessive redistribution of resources to the severely ill and severely disabled,13 as would equality of access to advantage. A number of welfare-egalitarian theorists stress issues of opportunity and responsibility. The idea is that we will raise the welfare of people who did not have the opportunity to raise their

A Utilitarian Approach to Justice in Health Care own welfare. But of course, denying redistribution to people who are responsible for their own low welfare does not prevent unlimited redistribution to the severely ill and severely disabled, except perhaps in circumstances where we might blame them for causing their own problems. Opportunity and responsibility may be very relevant to some issues treated by welfare egalitarians, but these concepts do not help welfare egalitarians to set a plausible limit on redistribution to those who are worst off.14 While I take the fundamental distinction between resource egalitarianism and welfare egalitarianism from Dworkin, I disagree with Dworkin’s classification of his own theory. Dworkin refers to his theory as “equality of resources.”15 I contend, however, that Dworkin’s theory, which relies heavily on the device of hypothetical insurance, is actually a form of utilitarianism. Dworkin’s hypothetical insurance is a rough and indirect way of distributing resources to the people who would most benefit from them.16

Marginal Egalitarianism and Random Allocation There are two other theories that might be considered egalitarian, even though they do not necessarily involve giving preference to those who are worse off. Marginal egalitarianism (a term coined by Douglas Rae) tells us to give every person an equal amount of whatever is being distributed.17 Random allocation tells us to give every person an equal chance at receiving whatever is being distributed. Random allocation has received an astonishing level of support from theorists, in the context of scarce life-saving medical resources.18 An interesting question is whether these theorists support random allocation as a second-best substitute for marginal egalitarianism: Do they believe that candidates for a heart transplant should receive equal chances only because a heart cannot be divided? Suppose that instead of giving two candidates an equal chance at receiving scarce life-saving treatment, it were possible to give both candidates one half of the life extension that each would receive if she alone received the treatment. Would theorists who support random allocation then choose marginal egalitarianism instead? Despite the enormous support for random allocation among theorists, it seems that random allocation is rarely if ever used as a criterion for the distribution of cadaveric organs. I see this disjunction between theory and practice as a signal

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that theorists should reevaluate their support for random allocation; perhaps their support is ill advised, or is limited to such unrealistic situations as to be inconsequential in practice. Theorists who support random allocation evidently see it the other way: some of them, at least, think it is the non-use of random allocation in practice that should be reexamined. I cannot here offer a full discussion of marginal egalitarianism and random allocation.19 I simply observe that both of these theories, like other versions of egalitarianism, are insensitive to relative benefit. The random allocation of lifesaving resources would distribute an enormous number of those resources to candidates who would gain only a few months of life, denying the resources to candidates who would gain many years of life. Once again, this insensitivity to relative benefit is implausible.

Utilitarian Support for Values of Equality I reject egalitarian theories of distributive justice, but there are a number of ways in which I, along with other utilitarians, support values of equality. First, utilitarians are generally in favor of greater economic equality. Economic egalitarianism is justified on utilitarian grounds because the poor can benefit so greatly from additional resources.20 Second, there is a conditional utilitarian preference for those who are worse off in matters of health. If there are two candidates for a scarce medical treatment, and the treatment will effect a complete cure, utilitarianism tells us to favor the candidate who is worse off, who is at a lower level of welfare. The candidate who is at a lower level of welfare will benefit more from a complete cure; he will gain more welfare than the other candidate. Third, and most fundamentally, utilitarians support and espouse the value of equal respect. Consider again the Singer Earthquake Case. In that example, it seems right to distribute scarce medical resources to the candidate who can benefit more (victim B, who will lose a leg if we do not help her, but who has no other injury) rather than the candidate who is worse off (victim A, who has already lost a leg and will lose a toe if we do not help her). To utilitarians, helping those who will most benefit is an expression of equal respect.21 It would contravene the fundamental value of equal respect if we elevated a lesser interest of one person (saving a toe) over a greater interest of another person (saving a leg).

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Drawing on the Singer Earthquake Case, I will make a further and related point. Some writers on bioethics use terms like “fairness,” “justice,” and “equity” in a surprisingly tendentious way: they exclude, almost by definition, the possibility that the best expression of these values is to maximize welfare.22 But in the Singer Earthquake Case, it would not be fair to save victim A’s toe rather than victim B’s leg; it would not be just or equitable. Fairness, justice, and equity, in my view, require that we help those who can most benefit, as counseled by utilitarianism.

W E L FA R I S M W E I G H T E D OR UNWEIGHTED? Because a complete insensitivity to relative benefit is implausible, the only truly serious competitors to utilitarianism are theories that are themselves partly utilitarian, that are partly sensitive to relative benefit. A theory that gives some priority to those who are worse off, but not absolute priority, is known as prioritarianism.23 Often prioritarians use the metric of welfare. They then have the same metric as utilitarianism, but a different principle. While the distributive principle of utilitarianism is unweighted maximization (maximize welfare, giving equal weight to the welfare of everyone), the distributive principle of prioritarianism is weighted maximization (maximize welfare, giving extra weight to the welfare of those who are worse off ). The prioritarian camp is actually larger than those who self-identify as prioritarians. Some self-identified egalitarians are ethical pluralists. They advocate egalitarianism, but they simultaneously accept other principles that mitigate the problems a thoroughgoing egalitarianism would cause. Although ethical pluralist egalitarians are not always explicit in saying so, one of the principles that they seem generally to accept is utilitarianism.24 Ethical pluralist egalitarians do not combine utilitarianism and egalitarianism into one principle, as do prioritarians, but they end up with a similar theory.25 To recap, welfare egalitarians must move two steps toward utilitarianism in order to gain plausibility. First, they must abjure policies that would equalize welfare by “leveling down.” Second, they must concede that the priority for those who are worse off cannot be absolute. The resulting prioritarian theory, as I say, is partly utilitarian. If the utilitarian slogan is “help those who can most benefit,” and the egalitarian slogan is “help those who are worse off,” the prioritarian slogan is “sometimes

help those who are worse off and sometimes help those who can most benefit.” The prioritarian approach is clearly less well defined than either utilitarianism or egalitarianism. Still, prioritarianism is attractive to many theorists. Because prioritarianism has utilitarian elements, the contest between prioritarianism and utilitarianism is hard to judge. Prioritarians would presumably give the same answer as utilitarians to the Singer Earthquake Case. Prioritarians would say that since the benefit to the better-off candidate (saving a leg) is so much greater than the benefit to the worse-off candidate (saving a toe), we should here help the better-off candidate who can benefit more. To pose the conflict between utilitarianism and prioritarianism, it is therefore necessary to use examples in which the benefit to the better-off candidate is not enormously greater than the benefit to the worse-off candidate. Consider a modified version of the Singer Earthquake Case. After an earthquake, we can help one of two victims. Victim A is more seriously injured; she has already lost a leg and she will also lose a finger if we do not help her. Victim B is less seriously injured; she will lose a hand if we do not help her, but she has no other injury. Here it still seems to me that we should help victim B (the better-off candidate), because she is likely to suffer more from losing a hand than victim A is likely to suffer from losing a finger. While the difference in benefit is not as great as in the original Singer Earthquake Case, it still seems that we should help the candidate who can benefit more, even though the other candidate is worse off. We could attempt to continue, in this fashion, to reduce the difference in benefit, testing utilitarianism against versions of prioritarianism that are closer and closer to utilitarianism. There is a problem in such an endeavor, however. The fact that one of the candidates is worse off means that what seems to be a lesser benefit might actually, to her, be a greater benefit. Suppose we modified the Singer Earthquake Case further, saying that the worse-off victim (who has already lost a leg) will lose a finger if we do not help her, while the betteroff victim (who has no other injury) will lose two fingers. In this example, the utilitarian course might conceivably be to help the worse-off victim. If the worse-off victim has already lost a leg, she is likely to become more reliant on her arms and hands than she would otherwise be. Therefore, she might suffer more from the loss of a finger than the better-off victim would suffer from the

A Utilitarian Approach to Justice in Health Care loss of two fingers.26 If both utilitarianism and prioritarianism tell us to help the worse-off victim, the example obviously does not pose the conflict between utilitarianism and prioritarianism. We could attempt to bypass the difficulty of coming up with examples that reliably pose the conflict between utilitarianism and prioritarianism by simply stipulating that the worse-off victim would benefit less from our help, even if the facts suggest that she might benefit more. Opponents of utilitarianism often include such stipulated interpersonal comparisons of welfare in their examples.27 But a stipulated interpersonal comparison, if not supported by the facts of the example, might not properly test our moral intuitions. If the facts point in one direction, and a stipulated interpersonal comparison points in the opposite direction, our intuitions may respond to the facts rather than to the unsupported stipulation. I doubt that my argument thus far will persuade prioritarian opponents of utilitarianism that their examples should not rely on stipulated interpersonal comparisons. I will therefore go a step further and demonstrate that such illegitimate examples could also be offered in favor of utilitarianism. Consider again the Singer Earthquake Case, this time with a stipulated interpersonal comparison: After an earthquake, we can help one of two victims. Victim A is more seriously injured; she has already lost a leg and she will also lose a toe on her remaining leg if we do not help her. Victim B is less seriously injured; she will lose a leg if we do not help her, but she has no other injury. You, the reader of this example, are to assume that the benefit to B of saving her leg will be only infinitesimally greater than the benefit to A of saving her toe: the benefit to B of saving her leg will exceed the benefit to A of saving her toe by only the tiniest amount.

Here, the facts are basically the same as in the original Singer Earthquake Case, but I have tacked on a stipulated interpersonal comparison of welfare. Given this stipulated interpersonal comparison, I might argue, those who still believe it is right to distribute the scarce medical care to the victim who risks losing a leg must now accept utilitarianism in place of prioritarianism; they must acknowledge that resources should always be distributed to the people who can most benefit from them, even if the people who can most benefit are better off and even if the difference in benefit is only infinitesimal.

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Such a move would of course be illegitimate. Although I have stipulated that the benefit to B of saving her leg would be only infinitesimally greater than the benefit to A of saving her toe, this stipulation is not convincingly supported by the facts of the example; indeed, it is contrary to the facts of the example. Accordingly, we cannot be sure whether our intuitive reaction to the example as a whole is based on the facts, which point in one direction, or on the stipulated interpersonal comparison, which points in the other direction. I hope this demonstration of an illegitimate proutilitarian example will induce opponents of utilitarianism to realize that they, too, should abjure examples that rely on stipulated interpersonal comparisons. I do not have space here to review and comment on the various examples that prioritarians offer in favor of their own theory,28 but I will make some conclusory observations. Prioritarian examples fall into three categories. First, there are examples in which it is not clear that the worse-off candidate really would benefit less from scarce resources than the better-off candidate. Such examples do not test utilitarianism against prioritarianism, as utilitarianism might counsel the same result as prioritarianism. Second, there are examples in which it is stipulated that the worseoff candidate would benefit less from scarce resources, but this stipulation is not clearly supported by the facts of the example. As noted, I deny that such stipulated interpersonal comparisons legitimately and properly test our intuitions. Finally, there are examples in which it is indeed clear that the worse-off candidate would benefit less from scarce resources than the better-off candidate. In these examples, it seems right to me that the scarce resources go to the candidate who can benefit most, even if she is better off. I conclude that my intuitions, at least, are utilitarian. While I cannot rule out some version of prioritarianism, it must be a version of prioritarianism that is very close to utilitarianism. Let me now step back from examples and take up general considerations bearing on the contest between utilitarianism and prioritarianism. Many critics of utilitarianism think it wrong that utilitarianism is unconcerned with the distribution of welfare. To a utilitarian, a slight increase in the sum of welfare can justify a wildly uneven distribution of welfare. But shouldn’t we care both about maximizing welfare and about equalizing welfare? And shouldn’t we, therefore, sometimes prefer a smaller amount of welfare that is more

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evenly distributed to a larger amount of welfare that is less evenly distributed? If the question is put in these terms, it does seem a defect of utilitarianism that it is unconcerned with the distribution of welfare. However, the question is somewhat deceptive. As William Shaw observes, welfare itself is never distributed; resources are distributed.29 To speak of the distribution of welfare is to speak of welfare as if it were a resource. This kind of phrasing evokes our moral intuitions about the distribution of resources, including our awareness that resources have diminishing marginal utility. The utilitarian economist Yew-Kwang Ng believes that prioritarianism in general is the product of what he calls “utility illusion.”30 For utilitarian reasons, we must give less weight to the marginal income of the rich. If we then give less weight to the welfare or utility of the rich, we have engaged in a kind of double-discounting we did not really intend.31 I would not go so far as Ng in discrediting all prioritarian deviations from utilitarianism as the product of illusion or confusion. I do think, however, that speaking of the distribution of welfare does produce a type of “utility illusion” by picturing welfare as a resource. A more pro-utilitarian way of posing the contest between utilitarianism and prioritarianism is to recall that utilitarianism values the welfare of everyone equally, while prioritarianism does not value the welfare of everyone equally. Prioritarianism gives extra weight to the welfare of those who are worse off. From a utilitarian perspective, this is like placing a thumb on the scale of justice; it violates the fundamental principle of equal respect. Of course, I would not expect prioritarians to share this perspective.

C L A R I F I C AT I O N A B O U T A G G R E G AT I O N It is sometimes thought that utilitarianism produces counterintuitive results in cases involving aggregation.32 Suppose that we can provide many people with small benefits or can instead provide a few people with large benefits. Utilitarianism would aggregate the benefits to be received by each group. If the many small benefits sum to more than the few large benefits, utilitarianism would tell us to help the many rather than the few. Some believe that this is wrong, or that it could be wrong.33 I cannot here offer a full defense of the utilitarian position on aggregation,34 but I will try to clear up two common mistakes. First, the term “aggregation”

does not at all imply a decision to provide small benefits to the many rather than large benefits to the few. We must first conclude that the many small benefits really do sum to more than the few large benefits. Aggregation describes the process of summing up benefits, not the decision to help the many or the few. This point may be well understood by experienced philosophers, but it is often missed by casual participants in discussions of utilitarianism. The source of the confusion may be the unfortunate slogan “the greatest happiness of the greatest number,” which is now indelibly associated with utilitarianism. Thus, I have been surprised to hear, from very intelligent people, the ridiculous suggestion that utilitarianism cannot possibly justify any help to people with disabilities. Why not? Because the disabled are a minority, and utilitarianism seeks the “greatest happiness of the greatest number.” Utilitarian writers have made strenuous efforts to explain that the phrase “greatest happiness of the greatest number” is confusing and inexact; that it does not properly represent utilitarianism; and that while Bentham used the phrase for a time, he ultimately abandoned it in favor of “the greatest happiness.”35 The phrase “greatest happiness of the greatest number” refers to two different goals: the greatest happiness and the happiness of the greatest number. Sometimes these goals coincide; sometimes we aggregate the happiness of the greatest number and find that it is also the greatest happiness. But when the two goals diverge, utilitarianism pursues the greatest happiness, not the happiness of the greatest number. Suppose that we could give ice cream cones to 100 well-fed people, each of whom would like an ice cream cone. Alternatively, we could relieve 50 other people from horrible pain. Would utilitarianism tell us to give ice cream cones to the 100, in order to promote the happiness of the greatest number? No; utilitarianism would tell us to relieve the 50 from horrible pain, in order to promote the greatest happiness. At one time, I thought all this was obvious. No one, I thought, could possibly be confused by the phrase “greatest happiness of the greatest number” into thinking that utilitarianism seeks not the greatest happiness, but the happiness of the greatest number. Now I know better: despite the best efforts of generations of utilitarian writers, that unfortunate phrase continues to sow confusion. A second mistake people make about the issue of aggregation is to think that it tracks the

A Utilitarian Approach to Justice in Health Care utilitarian–egalitarian debate. Egalitarians are often suspicious of aggregation, and it might superficially seem that opposition to aggregation is an egalitarian position. In fact, aggregation sometimes leads utilitarians to take a position consistent with egalitarianism. Suppose that we can either provide a small benefit to a large number of quadriplegics or can instead completely cure a small number of paraplegics.36 If the many small benefits to quadriplegics sum to more than the few large benefits to paraplegics, utilitarianism would support helping the many worse-off quadriplegics instead of the few better-off paraplegics. This would also be the egalitarian position. The difference is that an egalitarian might advocate that we provide a small benefit to many quadriplegics, rather than completely curing a few paraplegics, even if the many small benefits do not sum to more than the few large benefits. Indeed, an egalitarian might prefer to provide a small benefit to a few quadriplegics rather than completely curing a large number of paraplegics: as the quadriplegics are worse off, the egalitarian gives them absolute priority, even if much more good can be done for many people who are somewhat better off.

D E O N TO L O G I C A L CONSTRAINTS Another common charge against utilitarianism is that it would require the killing of one person, in order to save the lives of other people, in circumstances that offend moral intuition. Probably the most famous example given to support this antiutilitarian view involves killing an innocent person so as to harvest his organs for transplantation to other people. Following is a typical version of the example, which I will call the Karlovian Transplant Case: A magnificently skilled surgeon has five patients who will die if they do not immediately receive organ transplants. The surgeon can make the five patients as good as new, but only if he kills a healthy individual and harvests the latter’s organs. The surgeon will be able to make it appear as though the unwilling donor died of natural causes, and no one will ever know different. Is it morally permissible for the surgeon to kill the healthy individual in order to transplant his organs to the five dying patients?37

I refer to this as the Karlovian Transplant Case because one may imagine Boris Karloff in the role

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of the surgeon (“What I do is for the greatest benefit of humanity. Come, Igor!”). In this example, most people feel that the surgeon should not kill one person to save five people, and I agree. Whether surgeons should kill people and harvest their organs for transplant is not the most pressing issue in the field of health care allocation. However, the Karlovian Transplant Case does concern justice in health care, and it does purport to show that utilitarianism leads to a counterintuitive result. A complete utilitarian theory should therefore confront this example. Before doing so, however, I observe that examples like the Karlovian Transplant Case are a far bigger problem for egalitarians than they are for utilitarians. Suppose Dr. Karloff were a welfare egalitarian rather than a utilitarian. Suppose he had a patient who was severely ill and severely disabled, had suffered greatly all of her short life, and needed five different life-sustaining organs that had to come (for some reason) from five different people, to avoid immediate death. Or suppose the unfortunate patient needed the same organ from five different people in succession, because her body rejected each transplanted organ after a brief period of time. A thoroughgoing welfare egalitarianism, unbounded by deontological (rights-based) constraints, would require Dr. Karloff to kill five people in order to save the one patient, as long as each of the five people had enjoyed more welfare over the course of his or her life.38 I am not even speaking here of the most extreme kind of welfare egalitarianism, which would “level down” in order to achieve equality. If the egalitarian Dr. Karloff killed five better-off patients to save one worse-off patient, he would not be “leveling down”: the one person saved would actually benefit from the death of the five. Thus, even what some espouse as a moderate form of welfare egalitarianism would send the egalitarian Dr. Karloff on a killing spree. Moreover, as with most vulnerabilities of welfare egalitarianism, this one is unaffected by distinctions that welfare egalitarians draw among themselves. Shifting from equality of welfare to equality of capabilities would not stay Dr. Karloff ’s knife, nor would an emphasis on opportunity and responsibility. However wrong it may seem to kill one person in order to save five people, in the original Karlovian Transplant Case, it is surely worse to kill five people in order to save only one person. As I say, then, examples like the Karlovian Transplant Case are a far bigger problem for egalitarians than

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for utilitarians. Yet while such examples are constantly thrown up to challenge utilitarianism, they are less often used to critique egalitarian theories.39 The reason, perhaps, is that theorists who adopt egalitarian distributive principles tend also to adopt, as a fundamental element of their theories, deontological constraints on those principles. Now the utilitarian approach to distributive justice can accommodate deontological constraints just as well (or as poorly) as egalitarian approaches. Some theorists who accept generally utilitarian principles would provide, as a fundamental matter, that these principles apply to the redistribution of money, not the redistribution of body parts. My own view, however, is that injunctions against killing and the like are not morally fundamental, but rather can be derived from utilitarianism—for cases that will occur in real life.40 Therefore, I do not see any need to give fundamental status to deontological constraints. How, then, do I respond to the original Karlovian Transplant Case, in which the utilitarian doctor kills one person in order to save five people? My first response is that in the real world, such behavior would not have good consequences. Real-world objections are stipulated away in the example, of course. We are supposed to believe that the only consequences of the doctor’s behavior will be a net gain of four lives. I contend, however, that such unrealistic stipulations about consequences do not properly test moral intuition. I demonstrated above that stipulated interpersonal comparisons of welfare, not convincingly supported by the facts of an example, can unfairly prejudice our intuitive response. Similarly, I argue, philosophers’ examples may not properly test moral intuition if they ask us to assume that behavior produces good consequences even though it ordinarily produces bad consequences. I doubt that my argument thus far will convince deontologist opponents of utilitarianism that the Karlovian Transplant Case is an unreliable example. I will therefore take a further step: I believe that if examples like the Karlovian Transplant Case are properly reframed, our intuitive response can change; we can come to believe that the supposed utilitarian course, which previously seemed monstrous, is in fact acceptable, because it really would produce good consequences. Often, reframing cases to achieve convincing causality means taking them out of the fabric of ordinary life and placing them in an extraordinary setting—only then are the extraordinary

causal stipulations fully supportable. An additional useful technique is iteration. The same situation is replayed a number of times, to drive home the conclusion that the utilitarian course really will have good consequences and the non-utilitarian course really will have bad consequences. The Karlovian Transplant Case is a very tough nut to crack. Partly, this is because the supposed utilitarian course causes a great sense of insecurity in readers of the example, which corresponds to the massive insecurity that would result if, in the real world, doctors actually killed people and harvested their organs for transplant. Radical measures are needed to establish convincing causality, but I believe it can be done. Consider, then, the following example, which I call Interstellar Transplant Machine: An unmanned spaceship enters the Earth’s solar system. The spaceship contains advanced technology for the transplantation of organs— let us call it a transplant machine. It was produced and used by a faraway civilization, but it has been lost and off course for a very long time. The transplant machine settles into orbit around the planet Neptune. Its computers detect intelligent life on Earth. After a few months it teleports to its medical facilities five persons who are dying of organ failure and one healthy person. The transplant machine painlessly kills the healthy person and transplants a number of his organs into the five dying patients, curing them completely. It then teleports the five now-healthy patients back to Earth, along with the body of the deceased donor. The transplant machine repeats this process every month or so. Each time, one healthy person is killed and his organs are transplanted into five dying patients, curing them completely. After a while, there is a change in the process. Now each time the machine teleports five dying patients and one healthy person to its medical facilities, it also teleports there a medical doctor. It identifies medical doctors through their brain waves. When each medical doctor arrives at the transplant machine, he is informed that the decision whether to proceed with the transplant is up to him. The doctor faces a button. Pushing the button will activate the transplantation process. If the doctor does not push the button within the space of ten minutes, the

A Utilitarian Approach to Justice in Health Care process will not occur; the machine will teleport its human inhabitants back to Earth in their original state. Some doctors push the button and some do not. Every time a doctor pushes the button, the one is killed and the five are cured completely. Every time a doctor does not push the button, the one is not killed; he and the five dying patients are teleported back to Earth, along with the doctor. Then, within the space of at most two months, every one of the five dying patients does in fact die. Human doctors are never able to save the dying patients with organ transplants from dead donors; the machine evidently selects only patients who cannot be saved with existing human technology. The machine has now been operating for many years. Scientists have determined that the patients who are cured have a normal life expectancy after receiving their transplants. These cured patients are, on average, no older than the unfortunate person whose organs they receive. Also, the cured patients did not suffer organ failure in the first place because of any behavior that it would be wrong to encourage, such as smoking or alcoholism. Dr. Jones is the 170th doctor to be teleported to the machine. Every previous doctor who has pushed the button has managed to save five people by killing one person. Every previous doctor who has not pushed the button has avoided killing one person, but has allowed five other people to die. Is it morally permissible for Jones to push the button?

My view is that it is morally permissible, in Interstellar Transplant Machine, to kill one person and harvest his organs, thus saving five other people. The action that previously seemed so monstrous, in the Karlovian Transplant Case, now seems at least acceptable.41 We still experience insecurity at the idea that someone’s body organs can be taken by force, but our insecurity is now mitigated because the behavior is limited to a unique setting in which it pretty clearly will save lives overall. There appears to be little danger that a permissive attitude toward killing people for their body parts will spill over into the rest of life.42 It may be objected that if unrealistic examples do not properly test moral intuition, as suggested above, I should not rely on the Interstellar Transplant Machine to defend utilitarianism against the Karlovian Transplant Case. Surely, the Interstellar

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Transplant Machine is less realistic than the Karlovian Transplant Case. In response: the setting is more realistic in the Karlovian Transplant Case, but the stipulation that the supposedly utilitarian action would produce a welfare gain is less convincing. If, in real life, a Boris Karloff-type doctor attempted to kill a healthy person in order to save five patients needing transplants, the likely result would not be a net gain of four lives. Rather, after killing the one healthy person, or attempting to do so, the doctor would be arrested and imprisoned, preventing him from ever saving any lives again. Moreover, if the case were not a completely isolated incident— if there were more than one doctor pursuing a Karlovian plan—people would experience enormous insecurity and would go to great lengths to protect themselves from the Karlovians, including a refusal of all consent to organ donation after death. The supply of organs for transplant would plummet, costing many lives. The Karlovian Transplant Case takes unfair advantage of our awareness that the supposedly utilitarian course hypothesized in that case would, in the real world, have welfare-reducing consequences, not welfare-promoting consequences. We do not truly accept stipulations to the contrary, even though we are asked to do so. Thus, our intuitive rejection of Dr. Karloff ’s behavior draws on utilitarian intuitions as well as deontological intuitions, and the case does not cleanly pose the conflict between utilitarianism and deontological theories. To pose the conflict in a way that legitimately tests moral intuition, we must be convinced that killing one to save five really would increase aggregate welfare. The example I have called Interstellar Transplant Machine supports the conclusion of welfare gain more convincingly, so it is actually a more legitimate example, despite the unrealistic setting. Note that an example like Interstellar Transplant Machine cannot similarly rehabilitate egalitarian theories that are unbounded by deontological constraints. Imagine that the interstellar transplant machine offered doctors the choice of whether to kill five healthy people in order to save the life of one severely ill and severely disabled person. Killing five people to save one person would still be an abhorrent act, whether done with the assistance of the Interstellar Transplant Machine or not. Thus, when Dr. Boris Karloff is on the job, as at so many other times, utilitarianism is more plausible than egalitarianism. Egalitarians can

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only avoid abhorrent results by incorporating deontological constraints at a fundamental level. Utilitarians can also make this adjustment, but utilitarians, unlike egalitarians, also have the option of insisting that seemingly fundamental deontological rules are in fact subsidiary rules for promoting aggregate welfare in the context of everyday life. When, in an extraordinary situation, it would truly and credibly promote aggregate welfare to violate deontological constraints, doing so does not offend moral intuition—at least, it does not offend my intuitions. Pending the appearance of the Interstellar Transplant Machine, however, I will continue to support the rule that doctors refrain from killing innocent people to obtain organs for transplant.

CONCLUSION The utilitarian perspective is often missing from contemporary discussions of distributive justice. Egalitarians and prioritarians make interesting arguments among themselves, but their common assumptions often go unchallenged. I have tried here to challenge these assumptions. Notes 1. Parts of this essay are drawn from my previously published works: my book Distributive Justice and Disability: Utilitarianism against Egalitarianism (Yale University Press, 2006); my article “Nussbaum: A Utilitarian Critique,” Boston College Law Review 50, no. 2 (2009): 489–531; and my article “The Distribution of Life-Saving Medical Resources: Equality, Life Expectancy, and Choice Behind the Veil,” Social Philosophy & Policy 19, no. 2 (Summer, 2002): 212–45. I thank the publishers and editors of these works for permission to republish. I also acknowledge with thanks the financial support of Harvard Law School, Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics. 2. Ian Shapiro, Democracy’s Place (Cornell University Press, 1996), p. 112. A theory’s metric can also be described as the space in which it operates. Amartya Sen, Inequality Reexamined (Harvard University Press, 1992), p. 2. 3. If the distribution of a scarce resource will have no welfare effects on anyone other than the candidates for the resource, the utilitarian course is to distribute the resource to the candidate who would most benefit. If there are other effects on welfare, the resource may not go to the candidate who would most directly benefit, but the utilitarian course is still to maximize benefit overall. 4. See Stein, Distributive Justice and Disability, Chapter 11.

5. For the remainder of this essay, I use the term “benefit” in the utilitarian sense, to denote an increase in welfare. 6. Peter Singer, Practical Ethics, Second Edition (Cambridge University Press, 1993), p. 25. 7. Disability does not necessarily mean low welfare. See Anita Silvers, “Formal Justice,” in Disability, Difference, Discrimination, ed. Silvers, Wasserman, and Mahowald (Rowman & Littlefield, 1998); Stein, Distributive Justice and Disability, Chapter 3. I am here hypothesizing a severe disability, possibly accompanied by severe illness, that does reduce welfare. 8. These general assertions are defended at length in Stein, Distributive Justice and Disability, Chapter 5. 9. There is an argument, most identified with Amartya Sen, that utilitarianism would often allocate fewer resources to disabled people than to nondisabled people, so that the disabled would end up with fewer resources and also less welfare. I address this argument in Stein, Distributive Justice and Disability, Chapter 4. 10. Ronald Dworkin, Sovereign Virtue: The Theory and Practice of Equality (Harvard University Press, 2000). 11. Sen, Inequality Reexamined, pp. 39–56; Martha Nussbaum, Frontiers of Justice: Disability, Nationality, Species Membership (2006). 12. G. A. Cohen, “On the Currency of Egalitarian Justice,” Ethics 99, no. 4 (1989): 906–945. 13. See Stein, “Nussbaum: A Utilitarian Critique,” Boston College Law Review 50, no. 2 (2009): 489–531. 14. Similarly, a sensitivity to opportunity does not enable resource egalitarians to avoid inadequate redistribution to the ill and disabled. See Stein, Distributive Justice and Disability, p. 65. 15. Dworkin, Sovereign Virtue, Chapter 2. 16. Stein, Distributive Justice and Disability, Chapter 7. 17. Douglas Rae et al., Equalities (Harvard University Press, 1989), p. 50. 18. See, for example, John Harris, “Justice and Equal Opportunities in Health Care,” Bioethics 13, no. 5 (1999): 392–404; F. M. Kamm, Morality, Mortality, Volume I: Death and Whom to Save from It (Oxford University Press, 1993); Dan W. Brock, “Ethical Issues in Recipient Selection for Organ Transplantation,” in Organ Substitution Technology: Ethical, Legal, and Public Policy Issues, ed. Deborah Mathieu (Westview Press, 1988), pp. 86–99. 19. I discuss these theories at greater length in Stein, Distributive Justice and Disability, pp. 92–94 (marginal egalitarianism), 256–259 (random allocation). See also Einer Elhauge, “Allocating Health Care Morally,” California Law Review 82 (1994): 1449– 1544. 20. See Stein, “Diminishing Marginal Utility of Income and Progressive Taxation: A Critique of The

A Utilitarian Approach to Justice in Health Care Uneasy Case,” Northern Illinois University Law Review 12 (1992): 373–397. 21. Singer, Practical Ethics, p. 25. 22. Some theorists use the term “fairness” almost as a synonym for random allocation. 23. Derek Parfit, “Equality and Priority,” in Ideals of Equality, ed. A. Mason (Blackwell, 1998), p. 12. 24. See, for example, Sen, Inequality Reexamined, p. 92 (“aggregative considerations”). 25. See Stein, Distributive Justice and Disability, Chapter 9. 26. This point is made by Singer himself. Singer, Practical Ethics, p. 25. 27. For an example that relies at least partly on a stipulated interpersonal comparison, see Thomas Nagel, Mortal Questions (Cambridge University Press, 1979), pp. 123–124. 28. See, for example, Nagel, Mortal Questions, pp. 123–124; T. M. Scanlon, What We Owe to Each Other (Harvard University Press, 1998), pp. 226–227. 29. William H. Shaw, Contemporary Ethics: Taking Account of Utilitarianism (Blackwell, 1999), p. 120. 30. Y. K. Ng, “Bentham or Bergson? Finite Sensibility, Utility Functions and Social Welfare Functions,” Review of Economic Studies 42, no. 4 (1975): 546–547. 31. Ibid. 32. See, for example, Scanlon, What We Owe to Each Other, p. 230; Alastair Norcross, “Comparing Harms: Headaches and Human Lives,” Philosophy & Public Affairs 26, no. 2 (1997): 135–167. 33. Scanlon, What We Owe to Each Other, pp. 229– 241; Thomas Nagel, Equality and Partiality (Oxford University Press, 1991), pp. 67–68. 34. See Stein, Distributive Justice and Disability, Chapter 10. 35. James Griffin, Well-Being: Its Meaning, Measurement, and Moral Importance (Oxford University Press, 1986), pp. 151–154; Shaw, Contemporary Ethics: Taking Account of Utilitarianism, pp. 13–14; Geoffrey Scarre, Utilitarianism (Routledge, 1996), pp. 23–24. 36. I am using the terms “quadriplegic” and “paraplegic” in their common non-technical sense, to denote paralysis below the neck and paralysis below the waist.

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37. The version of the example I give here is based in part on Judith Jarvis Thomson’s version in The Realm of Rights. Judith Jarvis Thomson, The Realm of Rights (Harvard University Press, 1990), pp. 135–148. 38. This assumes that welfare egalitarianism seeks to equalize welfare over a complete life, which is the predominant welfare-egalitarian position. 39. Some theorists have observed that egalitarianism could require the redistribution of body parts that are not necessary to life, such as one eye or one kidney. Robert Nozick, Anarchy, State, and Utopia (Basic Books, 1974), p. 206; Ian Shapiro, Democratic Justice (Yale University Press, 1999), p. 157; Jan Narveson, “On Dworkinian Equality,” Social Philosophy and Policy 1, no. 1 (1983): 1–23, p. 16. As far as I know, however, I am the first to observe that if a utilitarian surgeon would kill one person to save five people, an egalitarian surgeon would kill five (better-off ) people to save one (worse-off ) person. 40. My view is close to that of the late great Richard Hare. See R. M. Hare, Moral Thinking: Its Levels, Method and Point (Clarendon Press, 1981). 41. It may be wondered whether killing one to save five in this revised transplant case is consistent with Thomson’s distinction in Realm of Rights between “Trolley” and “Transplant,” a distinction that focuses on ex ante advantage. Apparently, it is not consistent: Thomson appears to indicate that it would be impermissible for the surgeon to proceed in Transplant even if human behavior had no effect on organ failure, although then the case would be closer. Thomson, Realm of Rights, pp. 185–186. Another interesting question is whether Thomson’s treatment of the Trolley/Transplant problem in Realm of Rights is anything other than a utilitarian analysis. That question, however, is beyond the scope of this essay. 42. Note that in Interstellar Transplant Machine, I have not even eliminated the problem that the five ailing patients have been able to prepare for death, while the one unwilling donor has not. Notwithstanding this disparity, sacrificing one for five still seems acceptable to me in Interstellar Transplant Machine.

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4 Justice Pluralism Resource Allocation in Medicine and Public Health1 ROSAMOND RHODES

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odern medicine and public health measures have contributed dramatically to reducing the death rate and extending life expectancy in populations. Because of their success, their value is broadly acknowledged, at least in public discussion. Nevertheless, claims for the allocation of societal funds to medical and public health projects are always in competition with claims for projects of other sorts. Ideally, broad considerations of justice should determine how a society’s funds are allocated among the important societal needs for expenditures on social goods such as public health, education, defense, safety, transportation, law enforcement, the arts, and clinical medicine. Yet, issues of justice persist even when we focus solely on a single domain. Within the sphere of medicine and public health, we are challenged to decide how limited funds and other resources should be prioritized out: Which projects should be addressed first? How much should be allocated to which efforts? What sorts of considerations should be taken into account and which factors should be ignored? Should all of the funds be directed at providing immediate benefits, or should some resources be allotted to prepare for future possible medical and public health needs or to medical and public health research? Beyond these significant policy issues, when emergencies and disasters arise, they bring an additional array of challenging questions about how to allocate the limited available scarce resources, including funds, supplies, equipment, space, and personnel. In times of urgency and need, how should the limited supply of vaccine or drugs be allocated? Which populations should be rescued when all cannot be? How should the multitude of competing claims be prioritized?

Some recent events provide us with vivid examples for deciding just what justice requires in the allocation of public health resources: the attack on the World Trade Center in New York City in September 2001, the anthrax attacks in October 2001, the flu vaccine shortage in the fall of 2004, and Hurricane Katrina in September 2005. I shall take these events and what unfolded in their wake as a framework for considering the issues of justice in medicine and public health. Although there has been some debate about strategy (e.g., universal vaccination to protect against a possible smallpox epidemic vs. ring vaccination in response to an actual terrorist infectious disease attack), and about the allocation of resources (e.g., which victims to benefit and how much, whether to allocate resources for planning and to which plan, whether to allocate resources for research and what to study), the principles that underlie these decisions have been assumed with relatively little contention. Implicit in this silent agreement are the presumptions that (1) everyone knows the guiding principle of justice and (2) the principle has the solid endorsement of a broad majority of the population. In what follows, I shall question both presumptions. By exploring several vivid and challenging examples, I shall try to shed some light on our general approach to the just allocation of a society’s limited medical and public health resources. I shall compare the principles that are most commonly invoked in discussions of the just allocation of medicine and social resources with some of the policies that we enact in order to reveal that there is no single principle that supports all of the relevant policies. This discovery, that no single conception of justice explains the array of broadly endorsed medical and public

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PROMINENT CONCEPTIONS OF JUSTICE In his lengthy discussion of justice in book 5 of the Nicomachean Ethics,2 Aristotle acknowledges the complexity and contextuality of justice, and he equates justice to the entirety of interpersonal virtue.3 Aristotle defines justice as giving each his due and treating similarly situated individuals similarly. Yet he discerns the difficulty involved in determining which features of a situation should be taken into account in deciding that individuals are similarly situated and which of the generally important factors should be given priority in a particular situation. According to Aristotle, justice does require equality in the treatment of equals. Yet many incommensurable factors, such as relationship, history, consequences, and feasibility, may or may not be relevant considerations. Justice requires the moral discernment to identify which of such factors are significant and how they should be compared in order to make an allocation that is just in the situation. Although some contemporary philosophers follow Aristotle’s insights and recommend an account of justice that draws on an array of reasons,4 those who write on issues of justice and health care appear to prefer a more Platonic approach. Most typically, they attempt to articulate a singular essentialist conception as a comprehensive account of justice. Allow me to briefly sketch a few of these several competing contemporary accounts of justice that enter discussions of medicine and public health.

Utilitarians thus identify an objective standard for calculating outcomes, and employ that single standard in determining policy and making policy decisions. Utilitarian allocations aim at maximizing their singular outcome over a population. A utilitarian conception of justice is committed to treating people as equals and to deliberately ignoring relational and relative differences between individuals. Hence, utilitarians add up the positive and negative consequences of implementing a proposed policy and select policy based on the aggregate of the desired results for the entire population governed by that policy. A policy is just, on utilitarian grounds, when it is efficacious, when it is the most likely way to produce the greatest aggregate amount of the specified end. When addressing the health care sphere, utilitarians focus on measurements of health or lifespan. A cost–benefit analysis in terms of the one factor that counts is employed to determine the policy for a population. Nothing else is considered because, for utilitarians, justice is defined only in terms of the end that they aim at maximizing. Who will get the benefit and who will not, how they will use the benefit, what will happen to those who don’t get the benefit, are all irrelevant. Today utilitarianism appears to be the dominant view of justice in medical and public health policy. It is a popular approach because the utilitarian calculus is simple and focused on something that people do value. It provides a metric that allows for numerical calculations and, therein, offers a method for evaluating all decisions in the same way. For example, some utilitarian policies employ a metric of quality-adjusted life-years (QALYs), others employ disability-adjusted lifeyears (DALYs), and others employ disabilityadjusted life expectations (DALEs). These approaches are all utilitarian and they produce allocations that at least seem fair in that they evaluate every allocation decision according to the same singular standard.

Utilitarianism Utilitarianism has a long history in ethics, tracing back to the writings of Jeremy Bentham5 and John Stuart Mill.6 It is the view that justifies policies that produce the best outcomes in terms of one specific measurable outcome. For example, Bentham argued that pleasure was the only thing that all people value, hence justice should aim at maximizing pleasure. Similarly, Mill adopted happiness as his singular value, and argued that justice should aim at maximizing happiness.

John Rawls Since 1971, many of the positions on justice espoused by philosopher John Rawls, first in A Theory of Justice7 and later in Political Liberalism8 and other works, have come to play a significant role in philosophical discussion of non-utilitarian criteria for the just allocation of social resources. Rawls famously advances two principles of justice. According to Rawls’s first principle, justice requires a liberal democratic political regime to ensure that its citizens’ basic needs for primary

health policies, suggests that there is no single and authoritative conception of justice. No simple formula can tell us what justice requires in all circumstances. Rather, investigation and examination of the situation, reflection on the array of problems involved, and the consequences of choosing one path or another, will lead to a conclusion that justice requires one or another distribution in the specific context.

Justice Pluralism goods are met, and that citizens have the means to make effective use of their liberties and opportunities. Rawls’s second principle regulates the basic institutions of a just state so as to assure citizens fair equality of opportunity. The first principle has priority over the second in that it requires political institutions to provide for citizens whatever they must have in order to understand and to exercise their rights and liberties. According to Rawls, his two principles taken together ensure basic political rights and liberties such as liberty of conscience, freedom of association, freedom of speech, voting, running for office, freedom of movement, and free choice of occupation. They also guarantee the political value of fair equality of opportunity in the face of inevitable social and economic inequalities.9 Both principles, therefore, express a commitment to the equality of political liberties and opportunities. These two principles of justice express Rawls’s view of the basic commitments that a liberal political society should endorse.10 Rawls’s principles are intended as “guidelines for how basic [political] institutions are to realize the values of liberty and equality”11 and assure all citizens “adequate all-purpose means to make effective use of their liberties and opportunities.”12 Together, these principles specify certain basic rights, liberties, and opportunities, and assign them priority against claims of those who advocate for the general good or the promotion of perfectionism (i.e., the best possible society). In Rawls’s account, the difference principle is the second condition of the second principle of justice. Recognizing that economic and social inequalities are an unavoidable feature of any ongoing social arrangement, Rawls established his second principle to express the limits on unequal distributions. He holds that equal access to opportunities is a necessary feature of a just society, and then, so as to compensate for eventual disparities and to maintain equality of opportunity, he calls for corrective distribution measures through the application of the difference principle. According to Rawls, the principle requires that “[s]ocial and economic inequalities . . . are to be to the greatest benefit of the least advantaged members of society.”13 In other words, governmental policies that distribute goods between citizens must be designed to rectify inequality by first advancing the interests of those who are otherwise less well off than their fellow citizens. Rawls himself does not extend his principles of justice to health and medical care. In fact, he

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specifically maintains that “variations in physical capacities and skills, including the effects of illness and accident on natural abilities”14 are not unfair and they do not give rise to injustice so long as the principles of justice are satisfied. Yet several prominent authors who write about justice and medicine have seen the relevance of extending Rawls’s principles to the allocation of health care. They discuss medical allocations by invoking Rawls’s principles, and they extend the Rawlsian concepts that they take to be most significant to the allocation of health care resources. One Rawlsian concept that has received especially broad endorsement in the medical ethics literature is his commitment to what he calls “fair equality of opportunity.” The other concept that has been widely supported in this literature is the “difference principle,” and people who have embraced some version of that principle now refer to such views as “prioritarian.”

Norman Daniels and Fair Equality of Opportunity Norman Daniels has used the Rawlsian concept of fair equality of opportunity to argue that health care should be treated as a basic need.15 He maintains that “[h]ealth care is of special moral importance because it helps to preserve our status as fully functioning citizens.”16 Daniels wants us to count at least some medical services as “primary goods” so that they are “treated as claims to special needs.” From Daniels’s point of view, therefore, the allocation of health care resources should be aimed at equalizing social opportunity. Daniels expects his claim to lead to the conclusion that a just society should provide its members with universal health care, including public health and preventive measures. Yet recognizing that a society will limit the amount of health care it provides, Daniels proposes “normal species function” as the benchmark for deciding which care to provide. He holds that health care that will restore or maintain normal species function should be provided. Nothing has to be provided, however, for those who are already within the normal range. Furthermore, Daniels points to the many social determinants of health inequalities, and invokes Rawls’s difference principle to claim that a just society should provide the most health care to those who are most disadvantaged with respect to health. On Daniels’s view, the needs of those who fall below the normal level of human species function must be addressed in order to allow those individuals to have equal access to social opportunities.

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In other words, Daniels’s standard for the design of health care systems is providing fair equality of opportunity. Neither the total amount of life-years produced, nor feasibility, nor any other social value is a relevant consideration.

Prioritarianism Prioritarian views build on Rawls’s “difference principle” rather than his principle of fair equal opportunity. Again, prioritarian views stand in opposition to utilitarian approaches to the distribution of scarce resources. Whereas utilitarian allocations aim at the maximization of an outcome over a population and deliberately ignore the relational and relative differences between individuals, prioritarian allocations aim at the identification of unwanted inequalities and then try to distribute resources so as to compensate for or correct them. Prioritarian allocations reflect a concern for how individuals fare in relation to each other and attempt to advantage those whose position is worse than others’. Numerous papers in the bioethics literature address the conflict between prioritarian concerns and utilitarian aggregation in the allocation of health care resources. For instance, Dan Brock,17 Frances Kamm,18 and David Wasserman19 argue the merits of one approach over the other in a variety of vexing cases. They reflect on the difference between policies that will save the lives of a few people or save an arm for several other people. They are concerned with whether public policies should provide a greater advantage to some who are already well off (e.g., save the lives of the ablebodied), or provide a smaller advantage to some who are worse off (e.g., save the use of an arm for those with some other preexisting disability). These discussions of “tragic choices” aim at discovering a principled basis for determining who is worse off, and for making these tradeoff decisions. Sometimes they focus on identifiable individuals, but sometimes not. They sometimes address tradeoffs of future significant harms against present small harms or more certain imminent harms against more hypothetical distant harms. Typically, these discussions favor policies that will allocate resources to immediate needs over future needs and benefits to identifiable individuals over benefits to those who cannot be currently identified. Regardless of these differences, prioritarian views maintain a singular focus on the idea that justice requires advantaging those who are worse off than others. As with Daniels, neither the total

amount of life-years produced, nor feasibility, nor any other social value is a relevant consideration.

MEDICAL MODELS FOR RESOURCE DISTRIBUTION In light of these competing theories of justice, it is illuminating to scrutinize some of the medical and public health policies that were implemented in the fall of 2001. Consider two examples. Medical Emergencies Triage is the broadly endorsed approach for responding to medical emergencies. It is the approach that had previously been accepted for disaster responses in New York City and rehearsed for implementation at medical facilities throughout New York State. Triage was immediately adopted by health care workers on September 11, 2001, for dealing with the medical needs that were predicted once the Twin Towers of the World Trade Center collapsed, and its appropriateness has not been challenged in any of the literature that I have encountered since then. Triage is the public health model for responding to domestic medical emergencies. It acknowledges the seriousness of widespread medical needs and at least the temporary scarcity of the human and material resources to fully respond to all needs. Triage requires health care professionals to make judgments about the likely survival of patients who need medical treatment. Recognizing that some people have urgent needs (i.e., they will die or suffer significant harm if not treated very soon) and that the resources available are inadequate relative to the need (e.g., supplies, facilities, trained personnel), patients are sorted into three groups and they are either treated, or put aside, or asked to wait according to their group classification. In the most extreme circumstances, those who are not likely to survive are deprived of treatment so that the available resources can be used to save the lives of those who are more likely to live. Those who are likely to die without treatment but who are likely to live if treated promptly are treated first. Those who are in need of treatment but can wait longer without dying are treated after those who are urgently ill. On the morning of 9/11, the disaster plan that had been previously developed and practiced was implemented at hospitals in the New York City vicinity. Many beds in intensive care units were emptied, elective surgeries were canceled, and patients who could have been sent home were discharged. Collection activities in blood banks went into high gear, but they were accepting only O- donors.

Justice Pluralism In medical emergencies, health care professionals deliberately disregard the concepts of giving everyone a fair equal opportunity to receive medical treatment, and they pointedly ignore relative differences in economic and social standing. Instead, they focus exclusively on the medical factors of urgency of need and the likelihood of survival. No one presumes to measure whether or not each patient has previously received a fair or equal share of available resources, and no one stops to assess who has been more or less advantaged. No one sorts out the small differences between individuals that would provide somewhat greater utility in one allocation rather than another. And no one criticizes medicine for not attending to those differences.20 In fact, the long tradition of medical ethics, dating back at least to the Hippocratic tradition, requires physicians to provide treatment based on need. Hence, the ethics of medicine appears to require physicians to commit themselves to unequal treatment (since need is unequal), and also to the non-judgmental regard of each patients’ worthiness. These longstanding expectations have not changed over the centuries since Hippocrates or in the years following the tragedies of September 11. These commitments remain intact irrespective of recent writing on the just allocation of medical resources, and they have not been eroded or transformed by reflection on the events of the fall of 2001 and our responses to them.

Research and Public Health Biomedical research and public health policies typically focus on populations. Biomedical research attempts to disconfirm hypotheses about predicted outcomes and thereby develop facts about the response of organisms with certain common characteristics. With respect to human subject research, groups of people are selected for study because of some relevant biological or environmental similarities. Any knowledge gained from the process is useful to the extent that it is applicable to all of those who share the common condition. Public health policies are also designed to have an impact on all of those who are similarly affected by a particular disease or a health-related condition. In deliberately focusing on the affected group, biomedical research and public health policies typically provide benefits only to that target group. The goals of biomedical research and public health are pointedly directed at everyone in the group that might benefit from them. By looking back at outcomes, researchers attempt to develop knowledge

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about biological or psychological reactions. By looking toward the future, public health officials attempt to develop a generalizable approach to the prevention, reduction, or treatment of biological or psychological problems.21 And, as with medical triage in the emergency setting, biomedical research and public health have not been criticized for holding to these agendas.

CHALLENGES FOR P R E VA I L I N G C O N C E P T I O N S OF JUSTICE Because ideas about justice and medicine are typically discussed singly, in artificially isolated contexts, and with a focus on carefully selected or constructed examples, it is hard to notice when and how their underlying conceptions clash. Yet the post-September 11 broad consensus on emergency triage, public health research, and public health policy provides an occasion to consider justice across a broad spectrum of medical contexts. An array of examples will also serve as a challenge to the assumption that a consensus supports a single principle of justice in medicine and public health. As philosopher Ronald Green has noted in his criticism of Daniels, the “mistake . . . is trying to decide such matters by reference to a single consideration—and not necessarily the most important one.”22 Consider some of the following public health examples. Emergency triage provides neither equal shares of care nor equal opportunity for future social participation. On the contrary, the distribution of resources under triage aims at saving the most lives and thereby maximizing everyone’s chance of being saved so that each can pursue the life that reflects each individual’s personal values and goals. Triage gives everyone a better chance at living than could be had by an equal distribution of resources. Consequentialist considerations of efficacy and equality support the well-accepted views on emergency triage. When the time constraints of an emergency and the need for medical resources significantly outstrip the available resources, responses should be based on efficacy and treating everyone with similar medical needs similarly. Yet the sweeping exclusions of triage appear to represent the somewhat different goal of avoiding of the worst outcome more than the utilitarian aim of maximizing the greatest utility, particularly when utility might require fine-grained sorting and ranking. Triage, therefore, is not entirely compatible with utilitarianism.

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Triage is also not consistent with either fair equality of opportunity or prioritarianism, which take factors into account that are deliberately ignored by medical triage. Clearly, if these different principles of justice (i.e., avoid the worst outcome, maximize utility, fair equality of opportunity, and prioritarianism) are applied to the same kinds of issues, they cannot all be appropriate for guiding these resource-allocation decisions because they would direct very different decisions. The intuitions that support the views that priority should be given to equalizing social opportunities, or to providing the greatest benefit to the least advantaged, are undermined by the strong sense that non-medical relative differences (e.g., in previous opportunities or disadvantages) should not come into play in decisions about emergency responses to terrorism and biological warfare. Similarly, questioning the commitment to fair equality of opportunity or prioritarianism in medical triage invites questions about the appropriate framework for policy decisions about public health needs and setting the research agenda. Emergency triage allocates resources by taking everyone’s prognosis and expected outcome into account. When an emergency triage policy is applied, individuals certainly get unequal lots and no priority is allowed to those who are more generally worse off. Furthermore, public health research sometimes has no impact on the social participation, health, or longevity of the entire population. If it turns out that we never have another disaster similar to what occurred on September 11, or if we never again experience a catastrophe that creates enormous amounts of pulverized concrete and incinerated computers and office furniture, research on their effects may never promote the social participation or health of anyone. In addition, if the burdens of the interventions that the studies support turn out to be prohibitively costly (e.g., give up skyscrapers and computers), they will not be adopted and no one’s fair equality of opportunity will be advanced. Public health research involves a quest for information that may or may not be useful. It also sometimes directs resources to the needs of a relatively few affected individuals. So, the standards of promoting fair equality of opportunity or maximizing health may, at least sometimes, be incompatible with those views of justice. Many other uses of the resources devoted to public health research could be more likely to promote fair equality of opportunity. If considerations of fair equality of opportunity were the only factors to be taken into account, projects that promoted it

should have preference over public health research. Yet the consensus in favor of public health research suggests that other reasons support the broad endorsement it receives. Whereas public health policies sometimes meet the standard of promoting utility, fair equality of opportunity, or priority for the worse off, sometimes they do not. In some cases (e.g., anthrax, smallpox), interventions are advocated because they are likely to save more lives than some alternative plan. The tremendous amount of resources devoted to decontamination of post offices and office buildings after the mail-disseminated anthrax attacks was widely accepted. But the cleanup policy had only a hypothetical and distant relation either to the avoidance of deaths or to the promotion of fair equality of opportunity. In sum, policies adopted in the fall of 2001 suggest that emergency triage, public health research, and public health policy rely on more than a single principle of justice.

A L E S S O N F R O M R AW L S The discussion above suggests two conclusions. First, a broad Rawlsian overlapping consensus supports many of the policies that were instituted in the wake of the terrorist attacks of September 11 and the anthrax attacks that followed. Second, none of the leading candidates for conceptualizing justice that I examined, namely utilitarianism, fair equality of opportunity, and prioritarianism, explain all of the positions that we accept on medical and public health policies. The incongruity between the post-September 11 policy consensus, on the one hand, and these lauded principles of justice, on the other, suggests that there is a mistake in our search for the ruling principle of justice. It also suggests an alternative for looking at the problem of justice. When we stop to examine our own thinking about these issues, we notice that we actually invoke different reasons to support different principles and different rankings of considerations in different contexts. That insight suggests that there is no obvious reason to presume that a single principle defines justice. In some circumstances, some reasons may be more defensible and more broadly accepted than others. With sensitivity to the complexity of human values and to the different contexts of medical and public health policies, we can appreciate that different reasons justify decisions in different public health resource allocations. Even though such a contextual approach to determining the just distribution of resources will sometimes favor one

Justice Pluralism principle and at other times endorse another, the decisions can express a widely shared view about the primacy of one consideration over another and reflect reasons that no one can reasonably reject. In this sense, a contextual view of justice is neither random nor idiosyncratically subjective. Rather, it expresses deep similarities in human concerns and shared priorities that relate to our human mortality and vulnerability.

T H E F L U VA C C I N E S H O R TA G E A N D H U R R I C A N E K AT R I N A Before returning to examples from 9/11, consider the flu vaccine shortage in the fall of 2004 and Hurricane Katrina in the fall of 2005. In 2004, when it was recognized that the supply of flu vaccine would be inadequate to meet the anticipated demand, people recognized that it was important to find a better way to allocate the limited supply of flu vaccine than to allow it to go to those with good connections, the aggressive, the rich, and the lucky. Communities around the country, and then the Centers for Disease Control, promulgated distribution policies that allotted the vaccine to those who were likely to die or suffer serious harm if they contracted the disease. They then implemented schemes to restrict distribution of the available doses accordingly. The supply was therefore directed to the immunocompromised, the very young, pregnant women, and the elderly, and to the health care providers who would be called upon to treat affected individuals. These policies were very broadly endorsed and compliance with the allocation measures was exemplary. The almost total absence of debate about their implementation was evidence of the extent of their endorsement. Aside from the advocates for children and the elderly, who each argued that their constituent group should have even more priority over the others in the vaccine target group, the U.S. population accepted the plans that were implemented. The consensus that supported the prioritizations was broad and deep. The principle that supported the flu vaccine allocation was not utilitarian because utility alone would have disqualified those with only a short remaining lifespan since the vaccination for the elderly and the immunocompromised could be expected to provide a low QALY payoff. Neither did the policy consider previous injustices or disadvantages in the allocation so as to give priority to the least well off, nor did it try to equalize opportunities in some wider sense. The principle

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inherent in the vaccine distribution policy was avoid the worst outcome—that is, avoid the most deaths and serious illnesses. The consensus of support, and the lack of opposition, speaks to how the importance of one particular goal, over the many alternative possible goals, can be apparent in a situation. Reaction to what happened before, during, and after Hurricane Katrina illustrates a broad consensus at the other end of the spectrum. In the case of Katrina, we found general agreement that our government had failed to adequately prepare for the disaster, that it had failed to warn and protect Gulf Coast citizens, and that it had failed in its attempts to rescue and meet the tremendous needs of the affected communities in the aftermath. These realizations point us to further broad agreement on the importance of investment in disaster preparedness, the importance of meeting the urgent needs of all citizens, and the importance of making leadership appointments based on qualifications rather than cronyism and politics. Again, this consensus on values is not a matter of chance coincidence; it reflects the central importance of key human concerns and the special saliency of these specific issues in the context of Katrina and its aftermath.

J U S T I C E I N A L L O C AT I O N S FOR MEDICINE AND P U B L I C H E A LT H We all are vulnerable to death, pain, illness, and disability, and we all want to avoid those consequences for ourselves and our loved one. We also all have to acknowledge that there are not enough resources to provide for all of the public health projects that we would like to implement. Hence, we recognize the necessity of prioritizing values and sacrificing some of what we would like to have so that we can be more likely to secure those things that are more important to us. Because the achievement of certain goals is essential to our enjoyment of others, and because certain hardships are more enduring and painful than others, and because this is so for almost everyone almost all of the time, as humans who are vulnerable and mortal, people tend to agree on the primacy of some important concerns. This feature of our shared human nature makes the concordance that we frequently find on the priority of some matters of public health not contingent and coincidental, but a genuine agreement expressing the human importance of some feature of a situation. This natural consensus provides us with an array of principles of justice. [See Table 4.1.]

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theoretical foundations TABLE 4.1 JUSTIFICATIONS FOR ALLOCATION POLICIES

Medical & Public Health Policies

Justifying Principles

Clean air, clean water and sewage treatment

vital importance to well-being efficacy difference principle Danger alert avoid worst outcomes preserve trust Disaster preparedness maximin Disaster relief equality vital importance to well-being Dispensing vaccine avoid the worst outcomes equality Inoculation exemption avoid undue burdens Mandatory inoculation provides a public good anti free-rider principle Medical triage avoid the worst outcomes Research maximin Safe disposition of provides a public good corpses anti free-rider principle

Triage may be the appropriate guiding conception of justice for policies that respond to large-scale emergency situations. The justification for triage is that it is the policy most likely to avoid the worst outcome and to save the greatest number of lives. Reasonable people would want to survive a disaster and they would want their loved ones to survive. Foregoing treatment for those who are least likely to survive so as to provide the best chance of survival to the greatest number of people yields the result that everyone wants most—that is, their most likely survival. In contemplating disaster scenarios and designing emergency-response plans, it is hard to imagine any reasonable person objecting to triage and withholding endorsement from the policy.23 So long as the same criteria for treatment are applied to everyone, the loved ones of those from whom treatment is withheld should not complain of injustice. Because hypothetical consent to triage policies can be legitimately presumed, a triage allocation of emergency services is not likely to undermine social stability. Disaster preparedness involves a different approach. It requires the allocation of communal resources for research, training, and equipment. Investment in these resources diverts funds that could, instead, be devoted to improving the lot of those who are less advantaged than the rest.

Yet policies to allocate resources for emergency preparedness are justified because, if a disaster should ever befall us, the ability to respond efficiently would be crucial. The good that can be had from preparation would not be available without the prior contribution from a common pool. Hence, it would be reasonable for a society to provide some resources for disaster preparedness in order to increase the chance for a good outcome and to minimize the chance for the worst outcome (i.e., maximin). Consider another circumstance that raises issues of justice in public health. In the face of a credible risk of biological warfare, mandatory inoculation against a serious contagious disease like smallpox is an appropriate policy when a reasonably safe and effective vaccine is available. Reasonable people would endorse such required inoculation because it provides protection from the disease—that is, it provides a public good that everyone values. Everyone should, therefore, bear a fair share of the burden of safety. Those who might refuse to comply with mandated inoculation would be free-riders, ready to treat others unjustly by taking advantage of their good will and sense of communal responsibility. Other public health measures, such as those that required the safe disposition of corpses after September 11, are similarly justified by the public good of protection against disease that they provide, and by the anti-free-rider principle that would prohibit unsafe practices. And when it comes to actually dispensing the smallpox vaccine in the face of a credible risk, because the relative differences between individuals may not be significant enough to be taken into account, a distribution scheme based on equality, such as a lottery or first-come, first-serve, may be required. Furthermore, with respect to public health measures like vaccination, there may be good reasons for allowing a few to be exempt from inoculation. Those who are especially vulnerable to the inherent dangers of immunization—for example, those with impaired immune systems—would bear more than the typical burden of being vaccinated. If everyone else in the society received the vaccination, exempting those few who would otherwise bear an undue burden would not increase the risk for others. In such cases, neither the implementation of the rule nor the countenance of legitimate exceptions would undermine social stability. Vaccination and exemption would not turn on some person or group being worse off than another, so priority for the worse off would

Justice Pluralism not be a relevant consideration. Instead, the difference in treatment would reflect the disproportionate burden on those who are immunocompromised and the lack of any other justification for imposing that extra burden. The public health concern about air quality immediately after the September 11 attacks reflects three slightly different principles. Clean air, clean water, and sewage treatment are the kinds of public goods that everyone needs constantly. Their vital and constant importance to everyone’s well-being is a justification for implementation of policies to provide and protect those critically important features of a human environment. In many settings, clean air, clean water, and sewage treatment are also the kinds of benefits that no one can have unless everyone has them. Thus, making them available or unavailable at all makes them available or unavailable to everyone in the society. In many situations, these are also services that can be provided with greatest efficacy by providing them for everyone. Public health measures to assess air quality after the collapse and burning of the World Trade Center, and the subsequent measures to protect the water supply from terrorist attacks, are justified by both of these reasons. Interventions that provide for everyone’s vital and constant needs are also likely to make the greatest difference in health and well-being for the economically and socially least advantaged. The well-to-do could leave town for the clean air of the countryside or simply purchase gas masks to protect themselves from air pollution. They would also have the wherewithal to purchase bottled water, dig private wells, and install private sewage systems. The well-to-do would be better off with the general availability of clean air, clean water, and sewage treatment. Yet the underlying interrelation between poverty and poor health and the consequent disparity between the well-todo and the poor with respect to health status and life expectancy24–26 suggest that the economically and socially disadvantaged would derive an even greater benefit from policies that made these benefits generally available. Furthermore, the continuous lack of such basic goods as clean air, clean water, and sewage treatment for some, while others enjoy them as private resources, could promote social instability. An additional reason for adopting public health measures to provide these services is the difference principle, which requires that new allocations of social resources be designed to most advantage those who are least advantaged.

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It justifies the same policies that would be supported by the vital importance of the services and the fact that such services are most feasibly supplied to all at once (i.e., efficacy). This example, therefore, illustrates how several different principles can be just and converge in support of public health policies.

OV E RV I E W To the extent that policy domains covered by different principles can be legitimately distinguished, a variety of appropriate and compelling principles can express the complex and varied considerations that make different policies just. In other words, we should avoid both the allure of a single simple ideal conception of justice and the temptation to shoehorn distinctly different principles into the scope of our cardinal ideological commitment. The just allocation of medical resources is, and should be, governed by a variety of considerations that reasonable people endorse for their saliency. Several principles of justice have a legitimate place in medical and public health allocation. Thus, policy solutions to practical problems in medicine and public health should focus on identifying compelling concerns and addressing them with broadly supported measures. The principles of justice include the anti-free-rider principle, avoid undue burdens, avoid the worst outcome, the difference principle, efficacy, equality, maximin, provide public goods, the vital and constant importance to well-being.27 To the extent that the scarcity of resources makes it impossible to fulfill all of the legitimate claims for a society’s allocation of resources, some principle(s) will have to be sacrificed and some projects that are supported by compelling reasons will have to be scaled down from an ideal level, delayed, or abandoned. When these hard choices have to be made, they too should be made for good reasons that reasonable people would support.28 In making difficult choices about the ranking of projects and priorities and the design of policies, different considerations will have different importance in different kinds of situations. There is no obvious reason to presume that one principle or priority will always trump the others. When the prioritization of a principle reflects the endorsement of an overlapping consensus of reasonable people, the justice of the policy is clear. When large groups of people rank the competing considerations differently, a significant consensus on the principles that are irrelevant may emerge,

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and that consensus can also serve as the basis for just policy. Furthermore, to the extent that flexibility can be supported by the available resources, policies should show tolerance for different priorities. As a general caution, however, medical and public health policymakers need to be alert to the kinds of illegitimate considerations that can distort and pervert any policy. Common psychological tendencies can interfere with judgment. For example, human psychology inclines people to exaggerate the impact of a loss and also inclines people to under-appreciate the value of future goods. This common inclination to inflate the importance of risk aversion seems to have contributed to the charge into risky vaccination policies in the face of a conceivable but remote and unlikely smallpox threat after 9/11. Politics and personal gain are also likely to have an influence on public policy. It is possible that political goals, cronyism, and fear all contributed to the huge investment in anthrax decontamination in the fall of 2001 at sites where the likelihood of danger was almost nonexistent. Those biasing elements may also have contributed to the considerable investments in federal funding for decontamination equipment in the years that followed. The desire to curry favor or to shore up votes does not promote reasonable public health policy. And then there is greed, which can be camouflaged under reasons that seem to be acceptable justifications. Greed, coupled with the desire to repay debts or to secure future political support, may have been additional inappropriate factors contributing to the introduction of policies for the administration of unproven anthrax vaccination to U.S. troops. Prejudice, stereotyping, the desire to do something, pressing needs made vivid by individual cases, lack of insight, and lack of foresight are other common psychological inclinations that can distort judgment and lead to the adoption of unjust public health policies. Our experiences after 9/11 and with the flu vaccine shortage and dealing with Hurricane Katrina have also taught us lessons about communication and trust and their importance in the design and implementation of just public health policies. After the fall of the World Trade Center, public health officials from the Environmental Protection Agency and government representatives failed to honestly communicate about the danger and misled the public about the air quality and the need for protection from the toxic environment. Today, thousands of people who worked

at the site are ill and hundreds are dying, at least in part because of the failure to provide full and honest disclosure.29–31 Apparently, those who made the decisions to withhold information and to promulgate false reports were more concerned with impressions, messages, and the promotion of political ends than with promoting safety—a truly central human value. Similarly false and misleading reports before, during, and after Hurricane Katrina cost lives and exaggerated the tragedy for many. These inaccurate and misleading communications undermined trust in government, in public health pronouncements, and in public health policy. When people believe that they are being deceived, and that the reasons for policies are personal or political advantage rather than the public good, they are less inclined to accept the pronouncements and less likely to cooperate with the policy. In contrast, the honest communication about the flu vaccine shortage, the clear communication about the justification for the policies that governed the distribution of the scarce supply, and the efforts to communicate crucial information about vaccine distribution to the public, all contributed to cooperation with the policy and the success it achieved in avoiding deaths and serious illness. These examples highlight the need for full and honest communication about medicine and matters of public health and their importance in promoting justice.

CONCLUSION In sum, it is difficult to achieve justice in medical and public health policy because there is neither a single ideal governing principle nor a simple formula for success. A variety of considerations can and do legitimately support good policy. A variety of cloaked and disguised hazards can intrude on the policymaking process and, in the name of justice, lead to indefensible results. For medical and public health policies to be just, the description of the situations they aim to address must be accurate and the reasons behind them must be the ones that reasonable people would find most compelling and most appropriate. Policies must reflect the choices that reasonable people would make and the priorities that reasonable people find most pressing. Notes 1. This chapter draws on previously published articles: “Justice in allocations for terrorism, biological warfare, and public health” In Public Health Ethics,

Justice Pluralism edited by Michael Boylan, Kluwer, 2004; “Justice in medicine and public health.” Cambridge Quarterly of Healthcare Ethics 2005;14(1):13–26; and Rhodes R. Justice and resource allocation in public health. In International Encyclopedia of Public Health. H. K. Heggenhougen and Quah, eds., 2008, Elsevier, Inc., volume 5; 544–551. Portions of this material were also presented at the International Bioethics Retreat, Pavia, Italy, June 2003, and at the meetings of the Association for Politics and the Life Sciences, Philadelphia, September 2003. 2. Aristotle. The Nichochean Ethics of Aristotle, W. David Ross, translator. London: Oxford University Press, 1971. 3. Aristotle 1130a9. 4. I count contractarian constructivists, such as T.M. Scanlon, in this camp. 5. Bentham, J. (1789). An Introduction to the Principles of Morals and Legislation. Edited by J.H. Burns and H.L.A. Hart. London and New York: Methuen, 1982. 6. Mill, J.S. (1861). Utilitarianism. Edited by G. Sher. Indianapolis, IN and Cambridge: Hacket Publishing, 1979. 7. John Rawls. A Theory of Justice. Cambridge, MA: Harvard University Press, 1971. 8. John Rawls. Political Liberalism. New York: Columbia University Press, 1993. 9. Rawls 1993:228–229. 10. Rawls 1993:6. 11. Rawls 1993:326. 12. Rawls 1993:4. 13. Rawls 1993:6. 14. Rawls 1993:184. 15. Norman Daniels. “Justice, health, and health care.” In Medicine and Social Justice: Essays on the Distribution of Health Care, Rhodes, Battin and Silvers, editors. New York: Oxford University Press, 2002:6–23; Norman Daniels and J.E. Sabin. “Limits to health care: Fair procedures, democratic deliberation, and the legitimacy problem for insurers.” Philosophy and Public Affairs 1997;26:303–350. 16. Daniels 2002:8. 17. Dan W. Brock. “Priority to the worse off in health care resource prioritization.” In Medicine and Social Justice: Essays on the Distribution of Health Care, Rhodes, Battin and Silvers, editors. New York: Oxford University Press, 2002:362–372; Dan W. Brock. “Aggregating costs and benefits.” Philosophy and Phenomenological Research 1998;58:963–968. 18. F.M. Kamm. “Whether to discontinue nonfutile use of a scarce resource.” In Medicine and Social Justice: Essays on the Distribution of Health Care, Rhodes, Battin and Silvers, editors. New York: Oxford University

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Press, 2002:373–389; F.M. Kamm. Morality, Mortality, Vol. I: Death and Who to Save From It. New York: Oxford University Press, 1993. 19. David Wasserman. “Aggregation and the moral relevance of context in health care decision making.” In Medicine and Social Justice: Essays on the Distribution of Health Care, Rhodes, Battin and Silvers, editors. New York: Oxford University Press, 2002:65–77. 20. Rosamond Rhodes. “Understanding the trusted doctor and constructing a theory of bioethics.” Theoretical Medicine and Bioethics 2001;22(6):493–504. I have argued generally that physicians have a rolerelated responsibility to avoid making judgments about patients’ worthiness and that they must treat all patients similarly based on medical considerations. 21. Although a subject for biomedical research may disproportionately affect a relatively disadvantaged population (e.g., the effect of lead paint on child development), the study findings and the subsequent public health policies will have implications for all of those who have been or who may be affected. 22. Ronald M. Green. “Access to healthcare: going beyond fair equality of opportunity.” American Journal of Bioethics, Spring 2001;1(2):22–23. 23. In this analysis I am drawing freely on T.M. Scanlon’s conception of justice. T.M. Scanlon. What We Owe to Each Other. Cambridge, MA: The Belknap Press of Harvard University Press, 1998. 24. Daniels 2002. 25. Patricia Smith. “Justice, health, and the price of poverty.” In Medicine and Social Justice: Essays on the Distribution of Health Care, Rhodes, Battin and Silvers, editors. New York: Oxford University Press, 2002:301–318. 26. Mark Sheehan and Peter Sheehan. “Justice and the social reality of health: the case of Australia.” In Medicine and Social Justice: Essays on the Distribution of Health Care, Rhodes, Battin and Silvers, editors. New York: Oxford University Press, 2002:169–182. 27. This list enumerates the principles of justice that are relevant to the circumstances that I have considered in this chapter. I do not claim that this list is a full elaboration of all of the relevant considerations for justice in medicine and public health. 28. Daniels’s “relevance condition” appears to capture this aspect of policy-setting. Daniels, 2002:16. 29. Anthony DePalma. “Illness persisting in 9/11 workers, big study finds.” The New York Times, September 6, 2006. 30. Anthony DePalma. “As a way to pay victims of 9/11, insurance fund is problematic. The New York Times, February 15, 2007. 31. Anthony DePalma. “Ground Zero illnesses clouding Giuliani’s legacy.” The New York Times, May 14, 2007.

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5 Health Risk and Health Security J O N AT H A N WO L F F

INTRODUCTION In 2008, before the U.S. health care reforms, a taxi driver in Florida told me that the U.S. had the best health system in the world; the only trouble, he said, is that a huge number of Americans can’t get access to it. Does this mean that the U.S. had a good system or a bad one? How can we tell? How we can know whether a society has a health system of which it can be proud? There are, of course, many statistics that bear on the question of how to assess the quality of a nation’s health system. The U.S. spends a greater proportion of its gross domestic product (GDP) on health care than any other nation. According to the World Health Organization (WHO), in 2006 it spent 15.3% of GDP, compared with 8.2% in the U.K. The second-highest-spending major country, as a proportion of GDP, was France, with 11% (WHO 2009, 107–9). Even though it is largely a privately funded system, the U.S. government even spends more money per citizen on publicly funded health care, largely through Medicaid, Medicare, and medical support for veterans, than the vast majority of other nations (including even the U.K. on its National Health System [NHS] in 2006) (WHO 2009, 110). Despite this, it is widely believed that there is something seriously amiss with the U.S. health system. But what is the best way of revealing the problem? Life expectancy in the U.S., according to the WHO, was 78 in 2007, which puts the U.S. outside the top 20 of medium to large nations. The U.K. does better, at 80, with Japan, New Zealand, Australia, Canada, France, and Sweden better still. The U.S., in fact, is at the same level as Denmark (WHO 2009, 38–45). The Danes, of course, are not happy to do so poorly, comparatively to the rest of Europe, but, nevertheless, there is less general sense in Denmark than there was in the U.S. that its health system is in serious crisis, with a need for root and branch reform (Juel et al. 2000).

The obvious difference between pre-reform U.S. and the rest of the Organisation for Economic Co-operation and Development (OECD) countries, of course, is that it was (and actually still is) the only member without universal health care. Many millions lacked health coverage and many more had inadequate insurance; something they found out only when they attempted to make a claim. Even those with high-quality insurance coverage can find claims exceptionally difficult to pursue and settle, and see maximum limits of care forcing very hard decisions. It seems clear that anyone designing a health system from scratch would not have dreamt of the U.S. system; it probably would not even have occurred to them as a possibility to be rejected. It is still far too early to know whether the recent reforms will provide a substantial improvement. In some respects, and although we are living in a different time with many significant differences, the pre-reform situation in the U.S. resembled the situation in the U.K. before the introduction of the NHS, in which access to health care was very uneven, and many, especially women, were left unable to afford routine care (Webster 2002). The introduction of the NHS had many beneficial effects, but it has not solved one of the problems it was introduced to address: inequalities in health. A series of studies have suggested that inequalities in health in the U.K. actually widened after the introduction of the NHS, and they remain a problem (Black 1982, Acheson 1998). It is tempting to think that the problems within the U.S. health care system would be solved by universal health care. But, it appears, this was not so in the U.K.: 60 years on we are still struggling. This, quite likely, should also raise questions about priorities for further reforms both in the U.K. and the U.S. and throughout the world. Indeed, the debate on health reform in the U.S. creates a dilemma for those who regard themselves,

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as I do, as “progressives” about health and social policy more generally. On the one hand, it seems obvious that universal health care is essential to any civilized country; a universal human right to medical care appears in Article 25 of the Universal Declaration of Human Rights (United Nations 1948). On the other hand, many progressives also believe that the relation between health and health care is problematic. In general, what makes people ill is not the absence of health care. Poverty, poor nutrition, poor living and working conditions, unhealthy behaviors, and so on may be much more important determinants of health than access to health care (Marmot 2004, 2006). For some theorists, we have got the balance completely wrong. For example, it was even suggested in the 1980s that the best way to improve health in the U.K. was to divert spending away from hospitals towards social services. This seems to have been the view of sociologist Peter Townsend, one of the authors of the Black Report, to which we will return (Berridge 2010). The argument has been made again very recently in the context of where government cuts should fall so as to do the least damage to health (Stuckler 2010). The dilemma for progressives, then, is why should we support universal health care if it is likely to make relatively little difference to health and life expectancy compared to other factors? That question is the key focus of this chapter. Of course, in saying that health care makes relatively little difference I do not mean that it never makes a difference. For a given individual health care can be a matter of life or death, such as in the case of emergency surgery, or chemotherapy. It can provide people with the ability to manage a chronic health condition so as to live a relatively normal life (think of diabetes or, now, HIV/AIDS) and can provide relief from distressing conditions. But at a population level, health care looks like poor value for money in delivering health outputs.

H E A LT H A N D H E A LT H SYSTEMS Before looking in more detail at questions of policy we need to look at some background, definitional questions. In particular we need, briefly, to ask: what is health, what is a health system, and what is the relation between the two? The definition of health, of course, is a highly contested matter. Intuitively health is often thought to be the absence of illness, disease, and disability (each of which then need further clarification). The WHO continues to define health much more expansively

as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity” (WHO 2006). In practice, however, the WHO has taken a more pragmatic approach to the understanding of health, as have national governments, such as the U.K., when they compute the health benefits of various possible interventions. For example, when health economists from the U.K. National Institute of Health and Clinical Excellence attempt to determine the quality-adjusted life-year value of an intervention, they evaluate health quality according to what is known as the EQ-5D instrument, which offers five dimensions of health: mobility, self-care, usual activities, pain/discomfort, and anxiety/depression (National Institute of Health and Clinical Excellence 2008). The idea is not so much that these dimensions provide an analytic definition of health, but rather if something is a significant health condition—and in the current international classification of diseases there are many thousands—it will show up in at least one of these dimensions. The advantage of EQ-5D is that it goes beyond “absence of disease” in its incorporation of mental (pain, anxiety, depression) and some social elements (usual activities) while remaining fairly precise. Although debatable whether it is extensive enough, it will be adequate for the discussion in this chapter. If the definition of health can be dealt with reasonably easily, what can we say about a health system? It is becoming a commonplace now to distinguish “health” from “health care,” and so there is a question of whether a “health system” is the same as a “health care system.” To explain, as we have already noted, there is increasing understanding that many of the determinants of health lie outside the province of medicine narrowly conceived. Nineteenth- and 20th-century improvements in life expectancy have come at least as much from improvements in sanitation and basic hygiene, and from safer working and living conditions, as from medical developments such as the discovery of antibiotics and improved surgical techniques. Estimates vary about the contribution health care makes to population health. For example, in responding to skepticism about the role of science and technology in contributing to beneficial health outcomes, the WHO reports that “scientific and technical progress explained almost half of the reduction in mortality between 1960 and 1990 in a sample of 115 low- and middle-income countries, while income growth explained less than 20% and increases in the

Health Risk and Health Security educational level of adult females less than 40%” (WHO 2000, 9). Now there is a lot to discuss in these results, and we will return to similar issues, but here all we need to note is that other factors beyond health care can and do influence health to a very significant degree. If it is clear that many of the determinants of health fall outside the health care system, then it would seem wrong to identify a health system with a health care system. Consider some of the major factors in the current assessment of the global burden of disease, such as lung (and related) cancers and road accidents, which according to the WHO are both in the top ten causes of death in the world (WHO 2008). Of course, medical professionals will offer care, to improve recovery and survival. Yet the main determinants of lung cancer and road deaths clearly fall outside of the health care system. Should we say, nevertheless, that steps to reduce such deaths fall within a country’s health system? Intuitively, some aspects fall more naturally into that classification than others. For example, public education about the effects of smoking seems a clear health initiative, whereas the design of a traffic system that makes overtaking safer would not normally be thought of as part of a health system. However, insofar as road safety reduces death and disability, it is arguable that an expansion to the notion of a health system is acceptable. For an even more difficult example, it is becoming clear that female literacy is an important factor in child health, as the WHO notes. Should we, then, say, that a country’s education system is also part of its health system? This may seem rather odd, in that as was pointed out during debates at the foundation of the NHS, if a child is ill, he or she cannot learn, and so by the same logic the health system should be part of the education system. The WHO includes in a health system all the organizations and institutions within a society that have the primary purpose of improving health. This would include, for example, health and safety interventions in the workplace, but not routine education. But still, this may seem overly restrictive. After all, many aspects of a society make a great different to health—especially negatively— without that being part of its primary purpose. Instead, the following working definition of a health system will be adopted: a country’s health system comprises those elements of a society that can be influenced by government action and are likely to have a significant impact on health (as defined by EQ-5D or similar measures). Clearly

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a country’s health care system will be included, as will other aspects of government action that have an impact on health, such as road safety, tax policy to influence the consumption of alcohol and tobacco, and environmental protection. And obviously such matters as the political decision to have a system of private health insurance, a single-payer system, or universal insurance will be part of a health system, on such a view. This greatly expanded notion of a health system encompasses a huge range of activities, both by the government and by businesses and individuals. To keep the discussion within some bounds I have added the idea that the impact on health must be “significant” if the activity is to fall within the health system, although I will not attempt to say any more about what counts as “significant.”

I N E Q UA L I T I E S I N H E A LT H AND THE SOCIAL DETERMINANTS OF H E A LT H : T H E U. K . EXPERIENCE Before the foundation of the NHS, health care in the U.K. was patchy, uncoordinated, and enormously unequal. There were inequalities not only between the rich, who could pay for hospital treatment, and the poor, who at best had to rely on charity, but also between the insured working man and his uninsured wife and children, who were not covered by the policies provided with the National Health Insurance scheme running at the time. Part of the purpose, therefore, of the NHS was to address inequalities in access to health care between rich and poor, and to bring women and children into a universal scheme, free at the point of consumption. In this way the NHS was committed to equality, and every citizen, rich or poor, male or female, had the right to receive attention in proportion to need. The Black Report, published in 1980, revealed that even after three decades of the NHS, severe inequalities in health remained, and in some respects inequalities had widened (Black 1982). The first message of the Black Report is that equal access to health care does not automatically produce equality in health; far from it. The second message is that on just about every indicator there is a “social gradient” of health, corresponding to social class. In 1980 the higher one’s social class, the better one’s health and the longer one lived. Members of the professional classes, both male and female, had fewer days of sickness and restricted activity than those even one step below

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them on the ladder. The pattern is replicated all the way down the scale of the occupational classes. The data paint an unrelenting picture of health inequality, and indeed, inequality moving in the wrong direction. It appears that the NHS had improved the health of those in the higher social classes, while making little difference to those of other classes. This is a surprising, even paradoxical result, as the professional classes had good access to health services before the NHS. The difference, it seems, is that the better off made use of preventive measures and benefited from public health initiatives, while those of lower social and economic standard did not, or at least not in a way that significantly improved their health. It has already been noted that access to health services has rather less effect on health than one might otherwise have assumed. But in a way the point is obvious. If you do a physically demanding and dangerous job and live in unsanitary housing, unable to afford healthy food, then while a health service might patch you up, as needed, its effects on your health will be fairly marginal. Doctors and hospitals can put you back on your feet; they rarely control the factors that put you on your back in the first place. The Black Report argues for a shift in attention from intervention in the mechanism of disease after it has occurred, to the conditions leading to disease and illness. What, then, are those conditions? Lifestyle has to be a major cause of the social gradient: there is a social gradient in smoking, heavy drinking, and poor diet, and that will exert its effects. Yet broadly unchosen working and living conditions also clearly have an influence. The Black Report brings to the fore the idea of the “social determinants of health”; that there are social factors that are causally responsible for ill health. It is hard to resist the conclusion that, at least in post-war Britain, the causes and remedies of much illness, disease, and disability lie outside the immediate scope of the health services. The more recent Acheson Report of 1998 presents a very similar picture, making numerous recommendations for poverty reduction as a means to health improvement. What we can think of as the “first wave” of the social determinants of health highlights the “material social determinants of health,” rooted in material poverty and life conditions. Yet it appears that not all health inequality can be blamed on poverty or physically hazardous working conditions. The “Whitehall studies”— large-scale studies of the health and mortality of British civil servants—were commissioned to

investigate the phenomenon of “executive stress”: the hypothesis that those at the top of organizations suffered from damaging levels of stress, and therefore would be more likely to suffer from heart attacks than others in their organizations. The researchers, however, found the exact opposite. Permanent secretaries (the highest civil service grade) had better health than under-secretaries, who had better health than their deputies (on average, of course), and this gradient was replicated all the way down to the mailroom. Presumably the myth of executive stress is partly a result of the fact that when the boss has a heart attack everyone gets to hear about it, but the further down the hierarchy you are, the less impact your illness makes. It seems that not only is the gradient not the result of differential access to health care, it cannot be explained by poverty or hazardous working conditions. All those studied were well above the poverty line, and all worked for the same, considerate, employer: the British civil service. There must be some other factor, or series of factors, at work. In this case the most important variables seen likely to be pure status, and control. Most likely the lower your position in the organization the less control you have over your working life, and this will greatly influence levels of stress. The executive might suffer from acute stress, having to make a hugely important decision from time to time, but once the decision is made the executive can relax. Those under continuous daily low-level stress get no relief and no opportunity to recover. High demand, low control, low reward, and low support are said to be a “toxic combination” causing chronic stress. Such arguments constitute what can be called a “second wave” of the theory of the social determinants of health, where psychological factors, rather than material ones, partially determine health outcomes. The presence or absence of supportive social networks seems to be a further determinant of chronic stress, in that those with supportive networks will be able to achieve better relief from stress, and thereby, on this understanding, better health too (Marmot 2004, 2006).

H E A LT H S E C U R I T Y A skeptical argument about health care that we sketched earlier becomes clearer at this point. If health is largely socially determined, then health care is much less important to health than it may have appeared. In which case, one might wonder why there is so much fuss about universal health care. Why put so much cost and effort into it if its

Health Risk and Health Security effects are so marginal? The reply is twofold. First, the effects in terms of health may be highly significant for particular individuals, especially in terms of quality of life, even if not life expectancy. Second, universal health care has other beneficial effects, even if they might not be in the most obvious places to look. To see this I need to introduce the notion of “health security.” (here I develop an account first set out in Wolff and de-Shalit 2007). The term “security” is widely used in contemporary political discourse and social policy. The term “social security” has been used for decades, and more recently it has become common to talk of “fuel security,” “food security,” and “water security” Security, broadly, is the inverse of risk or vulnerability, and thinking through how it is that exposure to risk can make people worse off is very fruitful, especially in relation to thinking about health. Here we shall look at the adverse effects of what could be called the lack of “health security.” Now at the present time when the term “health security” is used, it normally has a sense closer to “national security” than “social security,” in relation to major public-health threats: pandemics, bioterrorism, and climate change are all threats to public-health security. So the term has connotations that are not part of the present meaning. But here we are interested in what we can call health security at the level of each individual. No individual can have complete health security. Whatever access someone has to medical services, no one can be guaranteed health. Indeed, even when receiving medical attention, all that an individual can be offered is a chance of recovery, whatever the procedure, however tried and tested. Of course, an individual’s chances of recovery can certainly be changed by medical attention, generally, although not always, for the better (for ways in which doctors may do harm see Illich 1977 and Wootton 2006). But there is more to health security than health, and in particular four dimensions should be distinguished: vulnerability, control, resilience, and anxiety. To take the four dimensions in turn, the first, vulnerability or the probability of falling ill, is revealed through normal monitoring of health outcomes, which is the subject of epidemiology. Almost all health statistics that are presented to the public—the extent of a flu epidemic, cancer survival rates, the global burden of disease—are examples of statistics that will give some indication to individuals of their chances of suffering from various conditions, dependent on certain

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further facts about them. This dimension is captured by the normal work of epidemiology, and although there are numerous theoretical questions about the capture and presentation of such data, and puzzles about how to allocate individuals to groups in order to assess their risk, we need not pursue these issues here. The second dimension of health security, which we referred to as “control,” is the cost and difficulty of mitigation strategies to reduce health risk. Within a society different individuals face different challenges in trying to reduce their health risks. For example, even though it is well known that smoking is a very significant cause of lung cancer, smoking is much more common among some social groups than others. For this reason epidemiologists want to know not just the causes of illness, but what they call the “causes of the causes.” Why is it that low-income women smoke so much, compared to other groups? There are, of course, various hypotheses, which we cannot explore here. But the point is that variation between groups within a society suggests that people in different situations face different types of challenges in trying to control their health risk, and that there may be instruments or mechanisms within a government’s control that can influence how costly or difficult it is for people to adopt mitigation strategies to improve their chances of a healthy life. If it is very difficult or costly for you to change your health-related behavior, then you have low control over your health. If it is relatively easy and cheap, then you have high control. There are very obvious connections between the “first wave” of the social determinants of health, and this second dimension of health security: the cost and difficulty of taking steps to control health. Those who live in poor housing (damp, unsanitary, overcrowded), performing demanding work in dangerous conditions, and with little income to buy expensive, healthy foods, or leisure to relax or exercise, surely have less control over their health and hence less health security than others in that the steps they need to preserve their health are more costly or difficult than for other groups. Those who become ill through lack of control will show up in standard epidemiology under the first dimension above (vulnerability). But what will not show up in health statistics is the cost individuals may have faced in order to try to control their risks. So, for example, people who are frail typically are more vulnerable when walking in bad weather. As a result, such people, who

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include many who are older, living on their own, and not possessing a car, will stay in rather than risking injury from a fall. This reduces their opportunities for social interaction and increases loneliness, which is a cost they suffer in order to preserve their health. Now it might be said that it is rather harsh to consider loneliness caused by fear of injury when outdoors a failure of a health system. That point, itself, is arguable, but I use it for illustration. Similar remarks could be made about those who refuse to take a relatively well-paid job because of hazardous working conditions, and can find only poorly paid work. Or about someone on a low income who spends a high proportion of it on healthy food and thereby cannot afford other sources of enjoyment. Or someone who prefers not to join in a heavy-drinking culture and has difficulty maintaining a social network with colleagues. These are all ways in which individuals’ attempts to reduce their health risk adds nonhealth costs to their lives. Some of these elements are under greater government influence than others. For example, the Acheson report of 1998 argued that the EU Common Agricultural Policy made certain healthy food choices more expensive. If this is so, we can see it as a defect in a health system, broadly conceived. Similar remarks can be made about exercise. The configuration of towns and cities can make it more or less easy for people to build exercise into their normal daily lives. So, for example, it is all very well to encourage children to walk or cycle to school, but if education policy results in children attending school far from home, such policies are unrealistic. The public health mantra of making “the healthy choice the easy choice”— renamed by Thaler and Sunstein “libertarian paternalism” (Thaler & Sunstein 2008)—reinforces the point that the second dimension of health security (individuals’ ability to control their health risks) is very often under the influence of governments, in that it can make certain choices easier or more difficult. This is not to say that health considerations should be decisive in all public-policy decision-making. But such things should figure in what could be called a health security audit. The third dimension of health security was termed “resilience,” which in this context essentially means people’s ability to “bounce back” after an adverse health event. It has two aspects that could be represented as separate dimensions, but are so close that to do so may seem artificial: these

are the consequences of ill health, and the costs and difficulties of taking steps to mitigate those consequences. The consequences of illness themselves can primarily be divided into three categories: medical, social, and financial. Medical consequences include the physical and phenomenological aspects of illness and recovery, including the standard of care one receives. Social consequences include the attitudes of those around you, including family, friends, workmates, shop assistants, and so on, which can make illness harder or easier to bear. Finally, the financial consequences include not only potential loss of income, but in some societies, the expense of medical services themselves. Each of these three elements, even the attitudes others hold towards you, can be greatly influenced by government policy. In terms of an individual’s ability to mitigate the consequences of illness, once more we can distinguish medical, social, and financial aspects. The medical aspects include one’s ability to access care and to take advantage of it. Social aspects include government initiatives to educate the public about illness, in order to reduce the stigma, say, of cerebral palsy or mental illness, but also steps it might take to help (or hinder) individuals’ ability to form a supportive social network, whether in terms of support groups or more generally. Financial aspects include the cost and availability of medical and unemployment insurance. I will say more about these financial aspects under the final dimension—fear and anxiety—and for the present will concentrate on access to, and use of, care. A good deal of work has been undertaken exploring de facto inequalities in provision of health care services and, by implication, differential health security. There are concerns about access in rural areas, and concerns about the supply of female doctors among some immigrant communities where women are reluctant to consult male doctors about, for example, cervical screening (Acheson 1998). There are concerns about striking the right balance between large hospitals with highly specialized services and small, less-well-equipped, hospitals that make visiting much easier. There are concerns about the uptake even of free services when to do so means missing a day’s work and pay. This is all well-trodden ground, and all affect health security by making it more costly or difficult for some individuals to influence their health by seeking cures. Here, though, I would like to highlight what

Health Risk and Health Security appears a less well-documented aspect: ability to follow doctor’s advice. I rely on the somewhat disarming observation that before the introduction of antibiotics, doctors had few tools in their armory. Often advice would be to put heat on it, put cold on it, exercise, or rest. This, it has been said, is not far from the ancient theory of the four humors. Even these days, unless you have a condition that is amenable to surgery, or to antibiotics, or to counseling, very often there is little the medical profession can do for you except to advise you to rest so that the body’s natural recovery mechanisms can do their work. On the basis purely of conjecture, it seems to me likely that one important determinant of health is the opportunity to take time off from work and domestic duties to let physical systems recover. Someone on minimum income with no sick pay, or a young mother with no one else to look after her children, can hardly follow doctor’s orders to rest. The point was very well made more than 100 years ago by George Bernard Shaw in his play The Doctor’s Dilemma. Here Blenkinson, a doctor with a practice in a poor neighborhood, says to his old friend Ridgeon, a fashionable highsociety doctor, “My patients are all clerks and shopmen. They daren’t be ill: they can’t afford it. And when they break down what can I do for them? You can send your people to St Moritz or to Egypt, or recommend horse exercise or motoring or champagne jelly or complete change and rest for six months. I might as well order my people a slice of the moon” (Shaw 1946, 109–110). A little later Blenkinson reveals that he himself is unwell and, being of very low income, remarks, “If a fortnight’s holiday would save my life, I’d have to die” (Shaw 1946, 134). Quite clearly a health system can influence people’s ability to rest, through provision for sick pay and for domestic support for mothers and other caregivers who otherwise cannot take a rest from their duties. In fact here we might see why social networks are so important for health. Those with good social networks, with family or supportive neighbors, are more likely to be able to take a complete break from domestic duties in order to recover. How important this factor is remains to be seen, but it may have been relatively neglected to date. Finally, to turn to the fourth dimension, we must add a more subjective element, fear or anxiety. In many cases people fear or become anxious about falling ill. Sometimes the fear or anxiety attaches to the illness. Many people, for example,

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have a particular fear of cancer. Sometimes fear or anxiety attaches not to the direct experience of illness, but to its adverse consequences. This can include how it would affect one’s relations with family or workmates, but also its potentially ruinous financial consequences. One of the arguments for the U.K. NHS was precisely that it took away “money worries.” People on low income simply had no idea how they would be able to pay for a doctor’s services. Not only did this mean that such people often delayed treatment until it was too late to do anything, but also they “worried themselves sick.” That is to say, worry about the consequences of illness can be a cause of illness, both mental and physical. It has been argued that chronic stress suppresses the immune system, making stressed individuals more vulnerable to illness (Wilkinson 2001). Hence a system of universal coverage, free at the point of use, is good for individual health even if no one takes advantage of it. (Note that systems with significant “co-payments”—contributions from patients—lose this advantage.) A system in which medical bankruptcy is a possibility is one that does poorly on the “resilience” dimension of health security. And if people live in fear or anxiety of such outcomes, they do poorly also on a second dimension, fear and anxiety. Anxiety is, in fact, important in three different ways. First, as we noted at the beginning, the standard “instrument” for measuring health—the EQ-5D—includes depression/anxiety as a dimension of health, so where there is significant anxiety, this in itself counts as detrimental to health. Second, even if the anxiety does not reach “measurable” levels, nevertheless it can induce chronic stress and suppress the immune system, leading to other health problems. Finally, even when anxiety has no adverse effects on health, it can be a significant reduction in well-being. Here, then, is another effect of the health system that would not be captured in straightforward health data.

CONCLUSIONS Health care reform has been extensively discussed in the U.S. As an issue it is politically highly charged, emotional, and crisscrossed with the vested interests of those who would lose out if the system was reformed. After all, huge amounts are currently being spent, and they must be going somewhere. Those who advocate universal health care take its importance largely for granted. Yet experience in the U.K. suggests that, in terms of health improvement, the results of universal

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health care may be disappointing. But this is not a reason for abandoning the goal; rather, it is a reason for being clear about what the policy can reasonably be expected to achieve. In the terminology of this chapter, universal health care will significantly improve individual health security, especially in one important dimension at least: anxiety. Health worries are bad enough; coupled with “money worries” they can be stultifying. Universal health care can improve the quality of people’s lives: improvements in health may be only part of that improvement. A methodological lesson is the necessity to look at evidence. It is amazing how often, on inspection, the obviously true turns out to be false or at least problematic. In this case it seems obvious that the main value of universal health care is the health benefit it brings. But the evidence suggests that access to health care is but one, and possibly not the most important, determinant of health. Yet, it seems, it is also a determinant of other things, especially ease of mind. Understanding the notion of health security enriches our understanding of the casual frameworks in which health and health care stand. We can begin to see how other types of government action can affect—positively and negatively— health, and how the availability of health care can affect well-being. But the route from goals to policy reforms is a tortuous one, and many types of evidence must be brought to bear on the questions.1

Note 1. This essay was first presented as the first of my Boutwood Lectures at Corpus Christi College Cambridge, in 2009. I am very grateful to the Master and Fellows for the invitation, and especially to Nigel Simmonds for arranging the lectures. I would also like to thank Ben Colburn, John Dunn, Serena Olsaretti, and Diane Dawson for their exceptionally helpful comments. Subsequently I presented a version of this paper to audiences in Melbourne, Salt Lake City, and London and have received many valuable suggestions, for which I am extremely grateful. Work on this paper was supported by the U.K. Arts and Humanities Research Council as part of the Ethics of Risk project at University College London.

Bibliography Acheson, D. (1998). Independent Inquiry Into Inequalities in Health. London: The Stationery Office.

Berridge, V. (2010). The Black Report: reinterpreting history. In H.J. Cook, S. Bhattacharya, & A. Hardy (eds.), The History of the Social Determinants of Health. Andhra Pradesh, India: Orient Blackswan. Black, D., Morris, J.N., Smith, C., & Townsend, P. (1982). Inequalities in Health: The Black Report. London: Penguin. Illich, I. (1977). Limits to Medicine: Medical Nemesis— The Expropriation of Health. London: Pelican. Juel, K., Bjerregaard, P., & Madsen, M (2000). Mortality and life expectancy in Denmark and in other European countries: What is happening to middleaged Danes? European Journal of Public Health 10:93–100. Marmot, M. (2004). Status Syndrome. London: Bloomsbury. Marmot, M. (2006). Health in an unequal world: social circumstances, biology and disease. Clinical Medicine 6:559–572. National Institute of Health and Clinical Excellence (2008). Guide to the Methods of Technology Appraisal. London: National Institute of Health and Clinical Excellence. Shaw, G.B. (1946) The Doctor’s Dilemma. London: Penguin. (First produced 1906, published 1911). Stuckler, D., Basu, S., & McKee, M. (2010). Budget crises, health, and social welfare programmes. British Medical Journal 340:c3311. Thaler, R.H., & Sunstein, C. (2008). Nudge. New Haven: Yale University Press. United Nations (1948). Universal Declaration of Human Rights. http://www.un.org/en/documents/udhr/. Accessed June 27, 2010. Webster, C. (2002). The National Health Service: A Political History (2nd ed.). Oxford: Oxford University Press. Wilkinson, R. (2001) Mind the Gap. New Haven: Yale University Press. Wolff, J., & De-Shalit, A. (2007) Disadvantage. Oxford: Oxford University Press. Wootton, D. (2006). Bad Medicine: Doctors Doing Harm Since Hippocrates. Oxford: Oxford University Press. World Health Organization (2000). World Health Report 2000. Geneva: World Health Organization. World Health Organization (2006) Basic Documents. http://www.who.int/governance/eb/who_ constitution_en.pdf. Accessed June 27, 2010. World Health Organization (2008) The Top Ten Causes of Death. Fact Sheet 310 http://www.who.int/ mediacentre/factsheets/fs310/en/index.html. Accessed June 27, 2010. World Health Organization (2009). World Health Statistics. Geneva: World Health Organization.

6 Aggregation and the Moral Relevance of Context in Health Care Decision-Making D AV I D WA S S E R M A N

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uch of the philosophical literature on “tragic choices”—choices about whom to save with limited resources—presents the dilemma of an individual agent, deciding which victims to rescue when there is not enough time, medicine, or gasoline to rescue all. The agent is a helicopter pilot or emergency room physician; the victims are all strangers, but identifiable ones—the agent can observe their fear and peril even if he does not know their names. In contrast, much of the economic and policy literature on tragic choices concerns decisions made by governments or institutions, at a greater temporal distance, about people who can be identified only by the fates they will suffer—decisions about how much to invest in highway safety, cancer research, or rescue helicopters. In this chapter, I will consider the question of whether these are fundamentally different kinds of choices that ought to be governed by different decision rules or distributional principles. I will focus on the allocation of scarce health care resources, where the differences between the two kinds of choices described above are generally thought to support different decision rules. Thus, of the Institutes included in the National Institutes of Health, fewer than half are devoted to diseases that would generally be regarded as lifethreatening. No one seriously suggests that those Institutes receive the entire NIH budget until the life-threatening diseases they study are eradicated. At the same time, most people would regard it as acceptable, if not mandatory, for a doctor in a short-staffed emergency room to treat a small number of people who would otherwise die rather than a larger number of people who would otherwise lose a limb or suffer other non-lethal harms.1 In allocating health care resources, it clearly seems more acceptable to trade off death against lesser harms when the decision concerns harms that

will be incurred in the future by individuals who are not currently identifiable, than when it concerns harms that will be incurred in the present by identifiable individuals. Yet the decisions made in those two contexts, and the responsibility of the decision-makers for their consequences, are quite similar. In both contexts, some individuals will suffer harm because they have been denied the resources to prevent it. Regardless of whether the harm is imminent or remote, whether its victims are identified or unidentified, it comes to its victims in the same way, from a disease that the decisionmaker could have treated or developed the means to treat. And while it is not certain that some people will lose their limbs or lives unless the research makes a treatment available, it is also not certain that some people will lose their limbs or lives unless they receive an available treatment— spontaneous recovery is possible in either setting. The moral difference, if any, between the two contexts must lie elsewhere. In this chapter, I will examine a variety of explanations for the differing acceptability of aggregation in these two contexts. By “aggregation,” I will mean the interpersonal cumulation (strictly additive or not) of harms and benefits of varying magnitude to resolve conflicts over scarce resources. As such, aggregation is an essential feature of consequentialism, but some forms of aggregation are accepted in some contexts by most non-consequentialists. Explaining the varying acceptability of aggregating harms in the two contexts is complicated by the multiplicity of differences between them:2 between treatment decisions made by physicians or other health care providers about identified individuals with imminent medical needs, with funding decisions made by legislators or health care

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bureaucrats that will affect currently unidentified individuals whose medical needs have not yet arisen. At last three different factors are contrasted: the imminence of the harm, the social role or institutional status of the decision-makers, and the identifiability of the claimants. These different factors overlap, but only partially. Decision-makers tend to discount future medical needs, but they also tend to favor currently identifiable people over currently unidentifiable ones, regardless of whether their needs are imminent. The distinction between future and present seems to lose some of its moral significance when it is divorced from certainty about outcome (which is admittedly hard to do): our willingness to discount future harms may reflect a resilient optimism as much as a preference for the present. And while it is easier to identify people who are now afflicted than people who will be, we can often, and increasingly, identify people now who will have medical needs in the future. In the case of late-onset genetic diseases, for example, those who are certain or likely to have the disease will be identifiable long before they need medical attention (whether their “conditions” arise now or later depends on whether we regard their conditions as having a latent phase). In practice, identifiability and agent type are associated, since institutions typically decide on long-term projects and policies with unknown effects on specific people. But individuals can make decisions under similar uncertainty, and institutional decisions sometimes involve identifiable victims and beneficiaries. It is not clear what role these different factors play in the perceived acceptability of different distributional rules, and what moral significance, if any, they have. Philosophers who have defended the moral relevance of context have not been clear about whether context is defined by the imminence of harm, the identifiability of the victims, the social role of the rescuer, or some combination of factors. I will attempt to tease apart these factors in reviewing several proposed justifications and question whether any of the factors can bear the moral weight assigned to them. Before doing so, however, I need to address a threshold challenge to the belief that different allocation rules should apply in different contexts.

S H O U L D C O N T E X T M AT T E R ? To some commentators, it has seemed obvious that contextual differences can only explain, not justify, the use of different distributional principles. The two kinds of choices are essentially the

same, differing only in the clarity with which they reveal the tragic necessity of letting some die or suffer in order to rescue others. Writing in 1978, Guido Calabresi and Philip Bobbitt distinguished first-order decisions, about “how much [of a good] to produce, within the limits set by natural scarcity,” and second-order decisions, about “who shall get what is made” (Calabresi & Bobbitt 1978, 19). Although they appeared to have a different subject matter, first-order decisions were really just like second-order decisions “operating at a higher level of generality” (Calabresi & Bobbitt 1978, 34): For example, imagine two people, one in need of tragic good A and the other in need of tragic good B. If the production of A for the first person necessarily means that no B can be produced, then a decision to concentrate societal resources on A operates as a second-order allocation between the one in need of A and the one in need of B (Calabresi & Bobbitt 1978, 221).

Calabresi and Bobbitt believed that it was easy to overlook this obvious truth, however: And yet a first-order determination does not really seem to us to be merely a broader second-order decision. A decision as to how many iron lungs will be built is simply not perceived as the same kind of decision as one which determines who will actually be granted the use of such a machine (Calabresi & Bobbitt 1978, 135).

Several philosophers have argued, however, that these two kinds of decisions should not be perceived as the same, because they are different in morally relevant respects. Although both involve tradeoffs among the interests of different people, there are moral reasons for making the tradeoffs differently in different contexts. Moreover, those reasons are not the consequentialist ones that Calebresi and Bobbitt would readily acknowledge, which rest on no moral principle other than the maximization of good consequences or the minimization of bad ones.3 Frances Kamm maintains that while it is objectionable to save any number of arms rather than one life when “choosing whom to aid ‘here and now,’” it is acceptable to trade lives for arms “in making such macro decisions as whether to invest in research to cure a disease that will kill a few people or in research to cure a disease that

Aggregation and the Moral Relevance of Context in Health Care Decision-Making will kill no one but will wither an arm in many” (Kamm 1998a, 942). The “principle of public investment” for research funding “should not govern how we distribute in an emergency room, for example, if one hundred people come in with arms falling off at the same time as one comes in with a fatal condition” (Kamm 1998b, 973). Kamm may well be correct as a descriptive matter that in allocating funds to “an institution like an emergency room,” public policy recognizes that a morality with strong constraints on aggregation holds sway “in some areas of life, however small” (Kamm 1998b, 973).4 The question, however, is why public policy should recognize such “deontic preserves.” Without some argument for the moral relevance of context, the designation of such preserves seems ad hoc or conventional, an expression of ambivalence or sentimentality rather than moral principle. A context-sensitive morality, as I will call it, must not only explain, but justify, the greater acceptability of aggregation in decisions that will affect currently unidentifiable individuals at some future time. Many deontologists acknowledge that it is easier to treat people as mere objects or means when they are anonymous and remote in space and time. But the fact that it is easier to aggregate in those contexts hardly makes it more acceptable to do so. In explaining differing constraints on aggregation, the question a context-sensitive morality must answer is why a rule that is unacceptable in choosing among identified individuals, or present harms, should be acceptable in choosing among unidentified individuals or future harms. That is a distinct question from the one raised by choices across contexts, between harms that differ in immediacy or victims who differ in identifiability. Several philosophers (e.g., Fried 1970) have commented on the apparent preference for imminent needs and identifiable individuals reflected in such choices—for example, in the decision to save a trapped coal miner with funds that could prevent many later mining disasters. A context-sensitive morality, however, must explain why different rules apply in choosing between harms that are equally imminent and victims who are equally identifiable. A complete explanation is unlikely to be supplied by an account of the preference for imminent harms or identifiable victims. If, for example, decision-makers simply gave more weight to harms that were imminent or victims who were identifiable (or discounted harms or victims who were not), it would still be

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necessary to explain why our balancing of the competing interests came out differently when all of them had that extra weight than when none of them had. In this regard, it is instructive to consider Kamm’s suggestion that it may be acceptable to save one life now rather than many lives in the future because of our “special horror” at letting someone die when we have the means to save him: we seek to avoid having to stand by doing nothing at a time when we have resources that could be used. If we aid now, we will not have resources in the future. In the future, it will not be true that we stand by not helping when we have the resources with which to help. (Kamm, 1993, 141–142)

Kamm may be correct that there is a special horror in standing by when we have the resources to help. But this would not explain (nor is it offered to explain) our greater willingness to trade lives against lesser interests in the future than in the present. It is still necessary to explain why the special horror of letting one person lose his life prevails over the special horror of letting many people lose an arm here and now, while the mere horror of letting one person lose his life does not prevail over the mere horror of letting many people lose an arm there and then.5 What are the prospects for developing a context-sensitive morality along the lines I have suggested? I will look at three explanations for the varying acceptability of aggregation, which emphasize different factors among those usually conjoined in the here-and-now and there-andthen. The first stresses the imminence of harm or need; the second, social or professional role; the third, uncertainty about identity. I will not choose among these competing explanations, in part because they have not been articulated fully enough to permit an informed choice. I will, however, attempt to develop the explanation based on identifiability, because it strikes me as the most promising, and the one that most closely accords with the intuitions supporting a context-sensitive morality. But in the end, I find even that explanation inadequate.6

THE IMMINENCE OF HARM Kamm offers an explanation for our refusal to count arms against lives in the here-and-now that emphasizes the imminence of the victim’s harm.

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She suggests that agents have duties towards people who “confront” them with their imminent needs that they lack towards people who do not confront them this way (Kamm 1998b, 973). These duties may preclude them from engaging in certain kinds of tradeoffs, in particular, from aggregating lesser harms against death. Even the relatively limited contact between the rescuer and prospective victims on the high seas or in an emergency room creates a duty to rescue each victim; his limited resources create a conflict among those duties that cannot be resolved by maximizing the number of weighted duties that will be fulfilled, or by minimizing the number of weighted violations. The agent deciding what resources to produce is not, as a general matter, encumbered by such duties, so she can trade off lives for arms or focus on diseases that affect the most productive members of society. She has no duty to stock up for the kind of encounters that constrain the tradeoffs she can make: Suppose I have a car and a seriously ill person asks me to take him to the hospital. I have a duty to do this. But I do not have a duty to buy a car so that when I face a seriously ill person, I can take him to the hospital. (Possibly, I might even refrain from buying a car just so that I will not be put in the position of having to take people to the hospital when they confront me.) (Kamm 1998b, 973)

Kamm offers this example to illustrate that “we may have a duty to behave in a certain way if we have a resource, but not necessarily to see to it that we have that resource” (Kamm 1998b, 973). It is doubtful, however, that those who reject her claim of context-sensitivity would deny this, or more broadly, that they would embrace the absurd proposition that we have a (present) duty at t1 to satisfy the condition of any conditional (future) duty at t2. (Surely there are duty-triggering conditions at t2 that we have a duty not to bring about at t1 [e.g., a duty to aid a friend if he is badly hurt]). They may, however, accept the more plausible proposition that Kamm earlier ascribes to them: “that we have a duty at t1 (when doing research and development) to make it possible for us to fulfill the duties we will have at t2 (in the emergency room)” (Kamm 1998b, 973). There are many duties we can anticipate having at t2—to feed, clothe, and shelter our children, for example—that do not appear to be conditional on our having the resources to satisfy them, or (if “ought”

implies “can”) that impose a duty at t1 to ensure that we have those resources. What opponents of Kamm’s context-sensitivity would deny is that such “anticipatory duties,” as I will call them, are governed by different rules in the event of conflict than are duties to aid here and now. Kamm’s example is simply not relevant to this issue, since its point is to deny that she has any anticipatory duties towards the strangers at her doorstep. Her example addresses the concern that morality demands too much, by suggesting that while we acquire a duty to aid needy individuals when they confront us, we do not have to anticipate their arrival. It also suggests that there is an element of fortuity in the moral obligations we incur. But it cannot do the work Kamm requires of it, since it does nothing to explain why the duties we undeniably do have in some circumstances, to some individuals, to anticipate their future needs have different constraints on tradeoffs than the duties we have towards individuals who confront us with their imminent needs. If we consider individuals towards whom the agent does have an anticipatory duty, it is by no means clear that the imminence of their needs plays the constraining role Kamm ascribes to it. Thus, imagine that 21 small children live with a caretaker in his isolated cabin. All but one will lose their legs during the coming winter if he does not produce a certain drug he currently does not have; but that one, whom he can identify, will lose her life if he does not produce a different drug. Alas, both drugs are made from the same plant, and he has only enough to produce one medication or the other (there is, of course, no time to get more from outside). It seems clear that if the agent should favor life over limbs in the emergency room, he should favor life over limbs in these circumstances. And yet this would involve a duty to produce or procure resources at t1, not merely to use the resources that he has at t2. This example suggests that the same distributional rules apply regardless of the imminence of the competing needs when the agent has a prior duty of care to each of the needy individuals.7 Is there some other aspect of the here-and-now that mandates stronger constraints on aggregation? The cabin case introduces into macro or production decisions two factors more often associated with micro or distribution decisions: the agent has a special relationship with each of the claimants, and each is identifiable at the time the decision is made. Can either factor account for

Aggregation and the Moral Relevance of Context in Health Care Decision-Making the restrictions on aggregation typically found in micro contexts?

PROFES SIONAL ROLES An account based on special relationships would find the morally relevant difference between the here-and-now and the then-and-there not in the decision-maker’s knowledge of the victims in the former setting, but in her constraining duties toward them. Thus, Brock observes that while those making decisions at macro levels are typically government legislators, health officials, or health plan administrators, prioritizing different patients for needed treatment is typically done by physicians. A common objection to “bedside rationing” done by physicians is that physician’s commitments are and should be to the individual patients whom they are treating, and not to broader social goals. (Brock 2000, 14–15)

I wish to set aside questions about the justification for imposing different moral constraints on different social roles. Specifically, I will assume that physicians are required to display various kinds of partiality toward patients over non-patients, and forbidden to ration care for patients for the sake of a larger population of non-patients. But these features of the physician’s role fail to explain differences between the tradeoffs physicians are permitted to make among identified patients and the tradeoffs they are permitted to make among unidentified patients. Moreover, a role-morality account cannot explain why health officials who have not taken on the physician’s role may face similar constraints in allocating among identifiable individuals. Constraints on aggregation appear to vary less with the social or professional role of the decisionmaker than with the identifiability of the affected individuals. When those individuals are not identifiable at the time the production decision must be made, there appear to be looser constraints on aggregation even when the decision-maker is a physician who has, or is likely to have, a professional relationship with many or all of them. Thus, an emergency room physician not only has a duty to treat the patients who appear on her doorstep, but also a duty to make sure she has the resources necessary to treat those likely to appear at her doorstep—an anticipatory duty associated with her role. But in attempting to fulfill that duty, she may not have enough funds or time to obtain

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medicines for the full array of conditions she expects to see on her shift. In resolving this conflict, the physician need not give the same priority to lives over limbs that she would have to give in the emergency room. Arguably, she may use her limited funds to order medication that would save many limbs rather than medication that would save one life, whereas she must save a few lives rather than many limbs once the ambulances arrive. Counting limbs against lives in procurement decisions seems permissible regardless of whether the physician has, or is likely to have, a professional relationship with the as-yet-unidentified claimants. It would seem no less permissible to count limbs against lives in a one-physician town, where (almost) anyone coming into the emergency room on that shift was likely to be the physician’s patient. If physicians can choose patients’ limbs over patients’ lives when the specific patients affected by their decision are not yet identifiable, nonphysicians may be constrained in choosing limbs over lives when the affected individuals are identifiable. Consider the allocation of funding by a government agency with a general duty to support health-promoting research but no special relationship with, or duty towards, individuals facing particular health threats. Assume that the agency can support only one of two research programs: Program A has a very good chance of finding a cure within 10 years for a lung disease that would otherwise kill 50 people; Program B has a very good chance of finding a cure within 10 years for a circulatory disease that would otherwise cause 1,000 people to lose a leg. Assume (however improbable this may be) that all the 1,050 people who will be affected by this decision are asymptomatic but identifiable through medical testing. The 50 virtually certain to lose their lives would have as much reason to feel abandoned by the selection of a research program for a limb disease as a person left to die in the emergency room. It would attenuate the sense of abandonment if the research program had only a slight chance of success, but no more so than it would if there were only a slight chance of saving the patient in the emergency room. (There might also be some slight chance of survival from spontaneous recovery or from the independent discovery of a cure.) The fact that the victims are abandoned by government researchers rather than private physicians does little to blunt their complaint. Identifiability thus appears to impose the same constraints on “production”

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as on distribution regardless of whether the agent has any special relationship with the claimants.

IDENTIFIABILITY AND THE COMPLAINT ACCOUNT Intuitively, then, identifiability appears to be the most important factor in distinguishing contexts. But identifiability comes in different forms: the victims of a life- or limb-threatening disorder may be identifiable to different people, to varying degrees, with varying effort. For the remainder of this chapter, I will treat an individual as identifiable with respect to a given harm if anyone—the individual, the decision-maker, or a third party— could, with reasonable effort, determine that he would suffer that harm before an irrevocable allocation decision must be made. I use the phrase “reasonable effort” to bracket the issue of how much effort is necessary. Surely we would not treat prospective victims as identifiable in a morally relevant sense if their identification would be so costly that it would dramatically reduce their odds of survival. It is, of course, one thing to claim that identifiability plays a significant role in our intuitions about tradeoffs, quite another to justify that role. One way of accounting for the moral significance of un-identifiability would be in terms of the defense it offered to a complaint about the decision to favor arms over life. On this account, it would be presumptively correct to accord priority to a life over any number of arms; it would be reasonable for an individual to reject a principle that let him die in order to save 20 arms. This account is similar to what Scanlon, following Parfit, calls the Complaint Model: “a person’s complaint against a principle must have to do with its effects on him or her, and someone can reasonably reject a principle if there is some alternative to which no other person has a complaint as strong” (Scanlon 1998, 229). The individual who stands to lose his life as the result of a micro decision allocating scarce resources to limb-saving can complain about the lethal effect on him of that decision; no one who stood to lose a limb as a result of the alternative decision to allocate scarce resources to life-saving would have as strong a complaint.8 The question for this account is why an individual who stands to lose his life as a result of a macro decision, made in unavoidable ignorance of who would die, would not have a similar complaint. After all, the decision-makers knew that if they made a macro allocation to fund research on

the limb-threatening disease, someone would lose his life who would have lived if they had instead funded research on the life-threatening disease. Can’t the person who ends up losing his life invoke the effects of that decision on him, and claim that no one would have had as strong a complaint if the decision-makers had instead favored life over arms? The answer given by this account is that if the individual who loses his life would have endorsed the decision favoring limbs over lives and has no reason now, after his identity is known, to regard that endorsement as unreasonable in light of the information available at the time the decision had to be made, he lacks any basis for complaining about that decision. (He may have some basis for complaint if he is far more “deathaverse” than most people, but I will set aside this complication.) The complaint account begins with the simplifying assumptions that no one has any way of knowing who will be afflicted by either disease, so that everyone can be regarded as at risk of one or both of the diseases—a small risk of a life-threatening disease and a much larger risk of a limbthreatening disease (whether the risk is actual or merely “epistemic” does not matter), and that everyone has the same risk preferences, so that the decision to fund research for the latter could be justified in terms of what Charles Fried (1970, 177–182) has called the individual “risk-budget.” Although the assumption of uniform risk preferences is unrealistic, it is reasonable to assume that there is some tradeoff between risk to life and risk to limb that virtually everyone would be willing to make. Only a person obsessed with death to the exclusion of all lesser harms would reject any increase in the risk of death for some much greater reduction in the risk of arm loss.9 If an individual now facing death has no reason to reproach himself for his own moderate risk preferences, a person now facing death as the result of a collective decision to budget risks the same way has no reason to reproach the decision-makers (unless he has some reason to think that collective decision-makers should be more averse to lethal risks than the individuals facing those risks). This account treats the counterfactual endorsement of the person disadvantaged by a social decision as having normative significance. In this respect, it resembles a hypothetical argument seeking to justify a proposed scheme of social cooperation in terms of the consent that the affected individuals would have given. But the appeal to counterfactual endorsement in the complaint

Aggregation and the Moral Relevance of Context in Health Care Decision-Making account is quite different, because it is offered to justify a decision that has actually been made, and made irrevocably. The individual facing death as the result of a micro allocation to limb-saving research is not being asked to endorse, on the basis of his hypothetical consent, a present decision that would disadvantage him. He is in a very different posture than Dworkin’s poker player, asked to relinquish a good hand in unanticipated circumstances, on the basis of a rule that he would have, but had not in fact, agreed to (Dworkin 1974, 18). The individual with the life-threatening disease has been dealt a bad hand in clearly anticipated circumstances, and he cannot relinquish it—it is impossible to deal again. Indeed, if there were a present choice to be made—if the limbsaving medication could still be converted into the life-saving medication (a variation I discuss below)—he would not have to endorse an adverse decision: his society would then face a micro allocation between identifiable victims, in which his life would, per Kamm, prevail over any number of limbs; the fact that he would have chosen a macro allocation favoring limbs over life would not preclude him from demanding that the society now favor life over limbs. But as things stand, there is no possibility for conversion—the decision favoring limbs over life was irrevocably made at a time when he could not be identified as a victim. The only question is whether he now has grounds to complain about that decision; the complaint accounts holds that he does not. This non-consequentialist account of identifiability suggests that decision-makers are only permitted to trade off life for arms because no one can complain, and that they should take reasonable steps to deny themselves that permission by giving individuals the information they need to reject the tradeoff. This might seem to offer an insufficiently robust justification for choosing limbs over life in macro allocations. The complaint account might also seem too weak in treating that choice as permissive rather than required. It is not clear that the decision-makers are compelled to make that choice by the strength of the complaints they would face if they made the opposite choice. Had they chosen lives over limbs instead, those who subsequently lost their limbs would not appear to have a complaint. They would not, per Kamm, have had a complaint in a micro setting, where it was, or could be, known that their limbs would be sacrificed to save the life of an identifiable person, so it is difficult to see how they would have a complaint in a macro setting,

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where they could not have known that it was their limbs that would be lost.10 The defender of a complaint account of identifiability might respond that the justification for choosing limbs over life in macro settings should be no more robust than their account makes it out to be—that choice is merely permissible, not mandatory. She might insist that the choice of limbs over life is just one acceptable option in the face of ignorance about identity. Such ignorance is a regrettable fact about social decision-making; it does not enjoy the privileged status of the stipulated ignorance in the Original Position (Rawls, 1971). It is not needed to prevent bias or partiality. An identified individual who demands life-saving treatment for himself rather than limb-saving treatment for a large number of other identified or identifiable people is hardly engaged in special pleading, for which ignorance would be a desirable prophylactic. He is not at all like an individual so inured to privilege he cannot recognize the unfairness of the social arrangements responsible for his advantage. His demand is endorsed by the rest of us, who are not afflicted with either the lifeor limb-threatening injury. Thus, the ignorance about identity in which macro choices of limbs over life are made does not have the moral advantages of the ignorance imposed in the Original Position. But that does not mean that ignorance of the identities of those who will lose their lives or limbs is morally inferior to knowledge of those identities. Although such ignorance would not serve the bias-preventing function of ignorance in the Original Position, it might well be preferable to knowledge of the potential victims, for prudential if not moral reasons. Thus, imagine the kind of choices that we may face in the not-too-distant future. We can allocate funds between life- and limb-saving technologies this year or wait until next year, when genetic tests become available to reveal who among us is more prone to life- or limb-threatening diseases. Assume that, however improbably, there is no cost (or gain) in life or limbs in waiting. Or imagine that as every year passes, we will know increasingly more about the probability that each of us will develop one or the other of the disorders; in 10 years, we will be certain. Again, assume, even less probably, that there is no cost or gain in waiting. We know that if we had no choice about when to make the allocation decision, we would choose limbs over life now and life over limbs in 10 years. But we do have a choice, a choice that we must make in ignorance about what our

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increasing genetic knowledge will reveal about each of us. Is it obvious that we should wait until we know which of us will lose our limbs, which our lives, before making the allocation decision? At present, of course, there is no “constituency” for making the decision now or later. But it would seem that the same self-interested reasons (“calculations” may be too precise a term) that would favor allocating all or most to limbs if we had to make the decision now would also favor the higher-order decision to make the decision now. Each individual could reason: “If we wait, I’m far more likely to find that I have a limb- than life-threatening disorder, and if I do, its treatment will lose out to lifesaving treatment. So my expected utility is enhanced by choosing (limbs-over-lives) now. Choosing to wait, with the foregone conclusion of a life-saving allocation, is in effect the same decision as choosing the life-saving alternative now, which I oppose. So it’s in my interest to oppose waiting and support an immediate decision.” Although this is not a moral argument for choosing under ignorance, it does not seem to be a morally suspect one either. Still, the complaint account relies on a peculiar kind of ignorance to defend the macro allocation. From the decision-maker’s point of view, if not the victims’, things did not turn our any differently than expected—it was virtually certain that someone would die, and the person who in fact died was as likely a victim as anyone else. For this reason, the decision to favor limbs over life cannot be treated like a justified mistake—the best choice in light of the available information, but not in light of complete information—because it is not a mistake at all. The incidence of life- and limbthreatening disease is just as expected, and the death of this individual, or of any individual in the society, was a foreseeable outcome. The peculiarity of the kind of ignorance involved, and the uncertain moral status of that ignorance, are suggested by a hypothetical in which it is becomes possible to defer the choice between life- and limb-saving treatments to a point at which the victims are identifiable. Suppose an emergency room expects an average of 50 patients a day with a limb-threatening injury and only 1 with a life-threatening injury. Suppose also the medicine for the latter injury costs 50 times as much as the medicine for the former, and that the ER, which must purchase its medicine every morning, has funds for one or the other but not both. With its limited funds, it obtains the

medication for the limb-threatening injury rather than the life-threatening one. This might seem like a reasonable decision if the injuries were truly adventitious, so that there was no way of knowing at the beginning of the day who was going to need either kind of medicine. But what if a process is developed to convert the limb-saving medicine into the life-saving medicine in a few minutes? If one patient with the life-threatening injury arrived at the ER at the same time as 50 patients with the limb-threatening injury, it would be too late to convert. If, however, the technicians were dispatched to get the victims and phoned in to the ER when they were a few minutes away, there would be time. Should the ER physician begin the conversion process if she knows, or could learn, the identity of all 51 patients? The problem is not one of line-drawing—of deciding when identification becomes clear or detailed enough, or whether there is enough time for the conversion. The problem is rather that the information the ER receives from the field is not the sort that would normally require it to alter its preparations at all. The proportion of people with the two injuries is exactly what the ER estimated, and there are no details about the individual victims that would arguably support a change in priority—for example, that those with the limbthreatening injury had maliciously inflicted the life-threatening injury. For this reason, it might seem perverse to require the ER to make a frenzied last-minute conversion. But it might also seem perverse to require the ER to maintain its initial purchasing policy if it was very likely that most of those with life-threatening injuries would be identified in time to convert the medication. Why not simply anticipate their likely identification by purchasing the life-saving medication in the first place? And yet at the time the purchase is made, the injured are still not identifiable, and the entire at-risk population might well prefer that the ER purchase the limb-saving medication. I do not think there is an obvious solution to the ER’s dilemma; it merely highlights the uncertain moral significance of identifiability.

L I M I TAT I O N S O F T H E COMPLAINT ACCOUNT More important, perhaps, the complaint account of identifiability lacks generality; it does not apply in many settings where it would seem appropriate to favor limbs over life. Thus, for example, it might be acceptable for the government to fund research

Aggregation and the Moral Relevance of Context in Health Care Decision-Making on a rare limb-threatening disease rather than a still rarer life-threatening disease, where no one in the population was known to be at disproportionately greater risk of either, even if the risk of the limb-threatening disease was so low that most people would rather incur that risk than the stilllower risk of the life-threatening disease. If those who end up with the fatal disease would have agreed to fund research on the limb-threatening disease, it would not have been on prudential grounds; if they are now precluded from complaining, it is not because they would have endorsed that decision ex ante on the basis of their risk-budgets. Moreover, the choice of limbs over life would appear to be no less acceptable if it were possible to identify all and only the limb victims in advance, although that would complicate the application of the complaint account. Consider a case in which those who face limb loss are known at the time the decision must be made, but the smaller, non-overlapping group who face death is not. If it is acceptable to chose limbs over life when the identity of the limb victims is unknown, it might seem at least as acceptable to choose limbs over life when the veil is partially lifted so that their identity, but not that of the life victims, is known. But once the limb victims are known, everyone else will lack a self-interested reason to choose limbs over life; they will have nothing to gain, and much to lose, from that choice. Thus, the decision-makers could not presume the universal acceptability of the limb-saving policy at the time it was chosen. If that choice is justified, it can only be because the complaint the limb-losers would have about the choice of life over limb would be greater than the complaint anyone else would have about the choice of limb over life. This seems to depend in part on the odds that any given member of the rest of the population would get the life-threatening disease. If the odds were one in a million, the certain limb victims would still have the stronger complaint; if the odds were one in thirty, the complaint of the life victims might well be stronger. The ratio of limb- to life-losers would also matter. If substantially more now-unknown people would lose their lives than now-known people would lose their limbs, then the funding should arguably go to research on the life-threatening disorder, even with very slight odds that any given member of the remaining population would get it. Yet there would be a difference between the complaints that could be made by a now-identifiable individual who lost his limb because of a

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choice to fund the life-threatening disorder and a now-unidentifiable individual who ended up losing his life because of a choice to fund the limbthreatening disorder. The former would have a stronger or more personal complaint: in choosing to fund lives over limbs, the society rejected his claim to prevent the certain loss of his limbs. In contrast, the latter would be just one of the vast majority of people with a rejected claim to eliminate a small risk of death. But the comparative weakness of the latter complaint hardly compels the society to chose limbs over life in any case of such asymmetrical ignorance; merely that it will face stronger or more personal complaints if it chooses limbs over life in this context. It will also receive far fewer complaints, however, and the justification for the choice of limbs over lives may depend on how much the number of complaints counts, compared with their strength or personal character. The complaint account is also difficult to apply in cases where certain non-overlapping groups of individuals are known to be at greater risk of lifeor limb-threatening disorders. These conditions are fairly common: many people, much of the time, know enough about the risks they face to know that those risks sometimes differ substantially from the population average. In these conditions, it often seems acceptable to choose limbs over lives. Uncertainty appears to loosen the constraints on aggregation even when some individuals are (known to be) at greater risk than others. Thus, even if it was known that people on the East Coast were at much greater risk of a limb-threatening disease, and people on the West Coast were at much greater risk of a life-threatening disease, it would still seem acceptable for the federal government to devote a large share of its budget (but perhaps not as large a share as it could in the absence of such demographic knowledge) to do research into the limb-threatening disease—as long as the (known) risk of death to individual West Coasters was, however disproportionate, still small in absolute terms, and as long as disparities in risk were not correlated with suspect classifications: race, ethnicity, gender. It seems, for reasons still obscure, more appropriate to aggregate the risks of greater and lesser harms than the actual harms. An explanation in terms of the distinction between aggregating risks and aggregating harms would have to treat certainty as categorically different from, or discontinuous with, mere risks, a view that may be at odds with a probabilistic understanding of risk. That view

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may be defensible, but it has yet to be defended by the proponents of context-sensitivity.

Notes 1. Similarly, in determining the NIH budget, it would be considered appropriate to take account of such indirect consequences of disease as lost productivity. In contrast, it would be considered highly inappropriate for the emergency room physician to consider the impact on productivity of her treatment decisions. The appropriateness of taking into account such indirect effects thus appears to vary with context (Brock 2000); this difference might well have the same explanation as the difference in aggregating harms of varying magnitude. But since I can find no plausible explanation for the latter, I will not explore this possibility further. 2. The discussion of these explanations is also complicated by the variety of terms used to make much the same vague distinction between contexts: distribution vs. production; second- vs. first-order determinations; micro vs. macro decisions; decisions about the hereand-now and the there-and-then. Calebresi and Bobbitt (1978) use the first two pairs of terms interchangeably; Kamm (1993, 1998) and Brock (1998, 2000), the latter two. I will use all four pairs of terms interchangeably, except where one pair is specifically called for. Nord (1999, 7) offers a tripartite distinction between the budget level, at which treatment and prevention capacity are decided; the admissions level, at which it is decided who will be admitted to a service “given the capacity to treat that has been decided for that service;” and the bedside or clinical level, at which it is decided “how to treat those individuals who are admitted.” Decisions on the budget level are generally made by legislators or bureaucrats about individuals unknown to the decision-makers; admissions and bedside decisions are generally made by health professionals who have at least some knowledge of and personal contact with the affected individuals—much more at the bedside level (Nord 1999, 138). 3. For example, it is argued that institutions do a better job than individuals at certain kinds of aggregation, or that having individuals aggregate in those ways would have other undesirable effects, such as undermining trust. These arguments are countered by equally consequentialist ones, for instance that individual agents must make finely grained judgments of marginal utility in order for policies to work (Goodin 1990, Ubel 2000). 4. Specifically, Kamm claims that the morality that holds sway in the emergency room and other micro settings is Sobjectivity 3, which, to oversimplify, permits the aggregation of lives, and of “relevant” lesser interests like arms, in choices among equal numbers of lives. Macro settings are governed by Sobjectivity 4,

which, to oversimplify, permits lives to be outweighed by a sufficiently large number of “relevant” lesser interests. Kamm’s other Sobjectivities (1, 2, and 5) involve various combinations of objective and subjective elements, but Kamm does not think that they are adopted by commonsense morality in resolving conflicts about the allocation of scarce resources: I believe that the combination of Sobjectivities 3 and 4 represent common-sense morality’s solution to the distribution of a resource that is not divisible between groups needing it when the probability of success in helping each group is equal. (Kamm 1998a, 942) 5. Perhaps Kamm might contend that the horror in standing by was “special” only when it was death that we could prevent, not some lesser harm, and only when we could still avoid that harm. That horror would not be evoked by the loss of limb, and it would not operate as a thumb on the scales when we were choosing between the future loss of life and limb, because at that future time, we would lack the resources to aid. But this would offer more of a psychological than a moral explanation: Kamm might experience greater horror at letting a child die whom she still had the means to save (but only by letting 20 other children lose an arm) than at letting a child die whom she no longer had the means to save (because she had chosen to save the arms of 20 other children), but it is not clear why that greater horror would give her any moral reason to decide differently, if the decision to aid the 20 children would have been the right one. Why shouldn’t she regard that horror as a distorting influence, against which she should bind herself in advance? Moreover, the explanation would lack sufficient generality. The special horror of standing by and letting die cannot explain the constraint on choosing between two imminently imperiled lives on the basis of their value to others—regardless of which life we chose, we would feel the same horror at standing by while the other was lost. Nor could it explain why the constraints on aggregation varied in choosing between arms and fingers, as well as lives and arms. If there were no special horror in standing by and letting someone lose his arm when we have the resources to prevent it, there would be no more reason to chose an arm over 20 fingers here and now than there and then. 6. Another explanation might begin with the one form of aggregation that seems appropriate in almost all contexts: counting lives (at least lives directly saved) against lives, or more generally, interests of equal magnitude against each other (when the threats to those interests are equally imminent). While it may be objectionable to count the certain loss of arms against the certain loss of life in the emergency room, it is not only

Aggregation and the Moral Relevance of Context in Health Care Decision-Making appropriate, but mandatory, to count lives against lives, and to choose the greater number in that setting. Kamm (1993, 1998) and Scanlon (1998) have argued that we are required to do so not to produce the best outcome but to act fairly. To fail to alter the decision rule when a standoff among equal interests is broken by an additional interest of sufficient magnitude on one side—a life, or arguably an arm—is to slight the latter interest and treat its bearer unfairly. If this fairness justification for choosing the greater number were tenable, an argument could perhaps be made that it could be extended to the aggregation of lesser interests against greater in macro but not micro contexts. But I do not think the fairness justification is tenable, and I do not see how, even if it were, it could be selectively extended to the aggregation of lesser interests in macro contexts. 7. Indeed, it would be peculiar if imminence played a significant role for Kamm in establishing the rule for distributing health resources, since she elsewhere assigns “urgency”—how soon an individual will suffer adverse consequences if he does not receive a health resource—a relatively minor role in the distribution of scarce health resources (Kamm 1993, 268–269). 8. Scanlon (1998, 240–241) believes that the complaint model could be stretched to give each of the individuals with a significant lesser interest a grievance, but he does not suggest how this could be done. 9. This account also makes two other assumptions: first, the individual now facing the lethal harm was not involved in the actual decision to incur that risk (although the decision accorded with his risk-budget); second, he has no procedural grievance about not having been involved. The first assumption is needed because the acceptability of a decision to favor limbs over life in macro settings cannot rest on each individual’s actual agreement to it; the second assumption is needed because an objection to that decision cannot rest on a procedural flaw that could have been avoided and would, by stipulation, have had no effect on the allocation actually made. 10. It might be argued that a macro allocation favoring life over limbs is objectionable because the decision-makers in a democratic society are obliged in such settings to defer to the risk preferences of (a majority of) its members. But in that case, a complaint could be made by any member of that society ex ante, alleging a violation of democracy, not an error in

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distributive priorities. The only complaint the victims of the limb disorder would have special standing to make would be the oblique one that they had been harmed by a decision unfair to the population as a whole. More important, this account would have to explain why a society should not defer to the risk preferences of a majority of its members after the veil is lifted—why should a single identified person facing death be able to veto the micro allocation of resources to limb-saving? The recourse to democratic decisionmaking merely seems to defer or displace the question of why identifiability is morally relevant.

References Brock, D. 1998. Aggregating costs and benefits. Philosophy and Phenomenological Research 58:963– 968. Brock, D. 2000. Separate Spheres and Indirect Benefits (Draft prepared for World Health Organization meeting on Fairness and Goodness, Trivandrum, March 12–15, 2000). Calabresi, C., & P. Bobbitt. 1978. Tragic Choices. New York: W.W. Norton. Dworkin, R. 1974. The original position. In N. Daniels, Reading Rawls: Critical Studies of Rawls’ Theory of Justice. New York: Basic Books. Fried, C. 1970. An Anatomy of Values. Cambridge, MA: Harvard University Press. Goodin, R. 1990. Government house utilitarianism. In L. Allison, ed., The Utilitarian Response: The Contemporary Viability of Utilitarian Political Philosophy. London: Sage Publications. Kamm, F. 1993. Morality, Mortality Vol. I: Death and Whom to Save From It. New York: Oxford University Press. Kamm, F. 1998a. Precis of Morality, Mortality Vol. I: Death and Whom to Save From It. Philosophy and Phenomenological Research 58:939–945. Kamm., F. 1998b. Replies. Philosophy and Phenomenological Research 58:969–975. Nord, E. 1999. Cost-Value Analysis in Health-Care. New York: Cambridge University Press. Rawls, J. 1971. A Theory of Justice. Cambridge, MA: Harvard University Press. Scanlon, T. 1998. What We Owe To Each Other. Cambridge, MA: Harvard University Press. Ubel, P. 2000. Pricing Life: Why It’s Time for Health Care Rationing. Cambridge, MA: MIT Press.

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7 Why There Is No Right to Health Care S T E FA N B E R N A R D B AU M R I N

T

he rhetoric of rights dominates discourse about the distribution of health care. Interested parties invoke the right to health care as justification for insisting on expanding access, enriching benefits, and advocating limitless entitlements to special services. Such expansionist attitudes go back at least to the proclamation of the World Health Organization’s Preamble to its Constitution on July 22, 1946, where it declared: Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity. The enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, political belief, economic or social condition.

and as recently as 1997 the Council of Europe declared in its Preamble to its Convention for Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Biomedicine: Resolving to take such measures as are necessary to safeguard human dignity and the fundamental rights and freedoms of the individual with regard to the application of biology and medicine.

Such claims to the existence of preexisting fundamental and human rights to health care and health benefits have fed the fire of asserting unqualified and unlimited entitlements to the concern and care of others. Ordinary people, and medical care professionals, are called upon to satisfy these claims and feel justifiably uneasy about their failure to pitch in adequately to alleviate the suffering of those in need of various forms of health care— medications, rehabilitative services, long-term

care for the disabled, nutritional supplements, prosthetics, hospice care, and so on. If there were a fundamental right to health care such unease would be fully justified. In this chapter I take up the claim that there is such a fundamental right to limitless health care and try to show that it has no theoretical legs and is merely an incoherent rhetorical flourish, which, when fully examined, is unsupported and unsupportable, and should be replaced with appeals to a very circumscribed set of quite limited statutory entitlements. Further, arguments for new statutory entitlements should be understood as competing with other claims (e.g., for education, housing, welfare, water, electricity, transportation) for the just distribution of limited public resources on discretionary expenditures.

RIGHTS AND CANS Claims about morality are either true or not true. That is not a controversial claim, but that some are actually true is controversial. One such claim is “ought implies can”—a justly famous dictum of Kant’s. Every proper instance seems also true. For me to have an obligation to do x means that I must be able to do x. If I’m not able to do something I can’t have an obligation to do it. One cannot have an obligation to do the impossible. There is something about the logic of ought and obligation that requires it to be linked inextricably to the modality of possibility. There is another interesting, though less talked about, feature of this logic, namely “that no one ought to do what has to be or must be.” That is, if something will occur, will be, no matter what, then an agent related to this inexorable future event/occurrence

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cannot properly be said to be obliged to do something that will bring the event about, for whether one does or doesn’t do it, the event will occur without the agent’s intervention. “Ought,” we all know, only applies when the doing or not doing will make a difference. So, if I ought to do something x, then it must follow (1) that I can do it (or at least I can try to do it) and that my success or failure could make a difference. (2) If whatever I did couldn’t make a difference, then I’m under no obligation to try to do anything. My second point about the language of ethics is about the term “right” in the sense of having a right. Rights are created either (1) naturally (as the right to life) or (2) contractually by voluntary undertakings between agents (as the right to repayment) or (3) legislatively (as in the right to bear arms or engage in the free exercise of religion or speech). Where there are no contracts or no legislation pertaining to some matter there are no rights, except natural rights, if there are any, which are always with us. There are of course also quasi-rights, relationships that look like rights, that are not parasitic on these three—like debts of gratitude; social expectations not actually legislated; and similar sorts of claims that people have on one another. Most are more matters of etiquette, and some others depend significantly on implied contracts, both linguistically and non-linguistically based. We often couch our social expectations in rights language. For example, we might say we have a right to expect gracious behavior at dinner, or that someone had no right to come so late or to dress so immodestly, but these are clearly matters of taste not moral claims built into the nature of things. A second linguistic feature of talk about rights holds that there is a relation, a sort of complementarity or reciprocity, between rights and obligations, such that if someone has a right to repayment, then someone else has a duty to repay. For every such right there is a reciprocal duty or duties, so that it has often been said “no duties, no rights.” This has become known as the correlatively thesis. Whether this thesis holds in every case will not concern us for the moment. One can easily see that for either natural or legislative rights, the correlative duties fall very broadly, whereas for contractual rights the duties adhere very narrowly. If Jones owes me 10 ducats, then Smith has no duty to pay those ducats to me, while if Jones has a duty not to kill me, then Smith probably has the same duty, and if general legislation gives me a right to park on Bradmoor Road or on Riverside Drive,

then everyone has a duty not to prevent me from doing so. Of course when one has a duty, one has an obligation, and hence one ought (either to pay, or refrain from killing, or from interfering with, etc.), and that connects up with our first point. Clearly it is pretty easy not to kill someone (one just can not do it) or refrain from stopping me from parking on Bradmoor (e.g., by not being on Bradmoor, or walking on by). These negative duties are easy to fulfill, one simply can do them, can fulfill them, and so we can readily see that duties easily connect to oughts through cans. So when we say that “ought implies can” we are in effect saying that the right that establishes the ought is contingent on some agent’s ability (in general) to accomplish the task. There are, however, two complications worth attending to. (1) While all negative duties can be fulfilled by abstention, positive duties may run afoul of the facts, and (2) in the case of contractual duties impossibility may frustrate the actual fulfillment of the duty (Jones has lost all his ducats, and the ability to get any more). We need to deal with these two kinds of case. In the latter we would not want to say that because Jones is broke he doesn’t still have the duty to repay, so his not being able now doesn’t erase the duty, it just puts it on hold; even if it is never fulfilled, the duty remains (an albatross about Jones’ neck). Many of our duties are like this—waiting, as it were, patiently for the situation to be right, to repay, to make amends, to make happy, to finally do the right thing, etc. Unfulfilled duties circle like a little airy crown around each head waiting for the propitious moment to be plucked for fulfillment. If the will is there, only the local facts prevent immediate satisfaction. There is nothing in the nature of things that prevents their satisfaction. My own crown of unfulfilled duties is already vast and with each passing day grows ever larger no matter how much I try to trim it down. But also when I said above that positive duties may run afoul of the facts, I was talking not about contractual duties only, but also of duties of a more general nature. Some of these are opportunistic duties like the positive duty to give aid, which generally only occurs when one is situationally in a position to do so (e.g., to save someone apparently drowning, to help a less able person cross the street, to put coins in a beggar’s cup). Of course there may be no positive duty to give aid, there may only be the belief that such a positive duty exists. These duties are really unlike

Why There Is No Right to Health Care contractual duties. They are more seriously voluntary and may always be above the demands of duty proper. They may be nice things to do, but there is no duty to do them. We will return to this point shortly.

C A N S A N D T H E R I G H T TO H E A LT H C A R E I hope by now to have warmed you to my subject on the right to health care. First, we need to determine which kind of right this candidate right is. Is it natural (like the right to life) and merely requires that persons abstain from injuring another? It seems clearly not this, for the duty to provide health care is a positive duty and falls on very few, and natural rights (and their appended duties) fall on everyone. Is the right to health care contractual? There is a line in the Hippocratic Oath to the effect that “whatever houses” the physician may visit he “will come for the benefit of the sick” and another to use his art “for the benefit of the sick. . . [and to] keep them from harm and injustice.” On a very broad reading these parts of the Oath might be used to subscribe to the view that each physician has a duty to the whole of humankind to heal. But at most, this could only support the view that Hippocratic Oath-takers (and others who have subscribed to similar undertakings voluntarily) collectively have a duty to the whole of humankind, and clearly those few could not provide sufficiently. Moreover, here the right to health care would be as amorphous a halo of expectations as is my crown of unfulfilled duties. For just as I can’t do all I should, here all that should be done by physicians to heal can’t be done. After all, illness is boundless. Is this all that is potentially meant by a right to health care—that there are well-founded expectations that Hippocratic physicians have voluntarily sworn to heal the sick? We will return to this. Finally, is the right to health care merely a legislative creation? Two initial difficulties confront us. First, legislation is notoriously national. A legislated right to health care in Switzerland does not create a right to health care on anyone in France or Italy. So for there to be a general right to health care (a right that everyone can claim to have), it must be legislated generally (e.g., by the United Nations and therewith apply to all the United Nations’ member states). The first difficulty remains as not all states are member states, and so it is still a limited right. Even if all the world’s states were member states, the United Nations itself does not provide the means, it only creates the “right,” and without the means the right

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is empty. Even if it were supposed that the United Nations created the universal right to health care (however defined), it would at most create the duty of the member states to provide health care for all the world’s people, but no state thinks itself so obliged, nor is it able to provide health care for everyone (i.e., of every nation), so that “right,” were it to exist, would not be attended with fulfillable duties, and without fulfillability (invoking now “ought implies can”) there is no genuine duty, and if no genuine duty no genuine right. Mere talk of rights does not create real duties—it takes more. If, as seems likely, no one would claim there is a natural right to health care (and the appended duty that there be physicians from the beginning of human time), that leaves us the two viable candidates—the voluntary duty physicians create by oath or other undertaking and that at most they can only try to fulfill, or the legislatively created right (either by individual states for their own nationals or by the United Nations for everyone). Assuming, for argument’s sake, either construction, are the rights created by legislation real if they cannot be fulfilled (i.e., such rights, being positive, require the wherewithal for their fulfillment if the obligations created are to count as genuine duties)? If they can’t be fulfilled, then there is no obligation, no ought, and if no obligation, no duty, then no right. Actually to answer this question, to give more than a pro forma philosophic gloss, we need to specify what counts as health care. It is not enough to have some airy notion of what physicians or states are obliged to do. The former may think the obligation is fulfilled by merely keeping office or clinic hours open to all comers, and the latter may think its duty fulfilled by creating a national health service that provides minimal emergency care, or a little less or a little more than that. Specifying the meaning of health care in this context is made more difficult by the realization that each inclusion of a form of care raises the cost (in human energy and material) very significantly, and so significantly that single entries may make fulfillment impossible (e.g., depth psychology therapy; if everyone had such care a very significant part of the population would be psychiatrists). Suppose we create a smallish but seemingly satisfactory list of services:

List 1 Emergency trauma care Epidemic disease treatment and prevention services

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theoretical foundations Acute illness treatment, including surgery and recuperative facilities Obstetrics I have left off List 1:

List 2 All chronic care Psychological services Rehabilitative care Cosmetic surgery and care Reconstructive surgical care (including transplants) I have left off List 1 and 2: List 3 Well care Dental care Nutrition End-of-life home care There are of course yet many more items omitted from these lists. Suffice it to say that any item from List 2 above would outstrip the resources of the best-intentioned, best-endowed nation (and even if one could accommodate one item on List 2 for the general population, surely that would do it). Not only is illness boundless, but the desire for care is boundless as well. We not only have infection, disease, trauma, malnutrition, but also corns, rashes, sniffles, boils, depression, insomnia, baldness, infertility, impotency, flutters, chills, sweats, spasms, and the endless desire to be better, or normal, or just different. Every departure from the desired, we have learned, can be medicalized, even if it shouldn’t be. Suppose, then, we limit the meaning of health care in the phrase “the right to health care” to List 1 (suitably amended to cover any obvious omissions). Is that what the right to health care is intended to mean, or have we thus perverted it significantly? Surely if the Hippocratic physician were to define what he thought he had taken an oath to provide it would be to something like List 1, minus the personal provision of recuperative facilities, and he would think of himself as misunderstood if it were demanded that he provide, as obligatory, the items on List 2. Nations, on the other hand, might very well be expected to provide most, perhaps all, the items on List 2. So it really turns out that we are talking about at least two different rights, and if we don’t specify the

origin (the basis) of the right to health care, we introduce a fatal confusion into any discussion. If health care is restricted to List 1, then it could very well be an obligation physicians have undertaken and/or states have undertaken, at least for their own citizens. Then we need only look to the available resources, actual or obtainable, to see whether there is a genuine right (because there is a fulfillable duty) of either of these narrower sorts of rights. With respect to an oath-created right, the collective responsibility (of all oath-takers) would need to be recognized by those who thus have created the obligation. It would clearly not be enough for the right to be assumed by those who claim it and the obligation to be merely imputed. So it still remains to be seen whether the oath-takers think that they are creating a right to health care in the general population or merely going through some ritualized behavior. My own limited experience indicates that the majority of oath-takers think they are performing a near-meaningless ritual, and even more physicians (and other health care providers) do not even do that. So if there is a general obligation to provide the care on List 1, it falls on such a small number of providers that it cannot be said on that ground to create an effective right in the general population for health care even if that health care is restricted only to the entries on List 1. We should now look to state-created rights to health care through legislation as it applies just to List 1. Pretty clearly, most states do not provide the resources even if they provide the legislation. So in those states there is no effective obligation, hence no real right. In some nations (e.g., the United States), there was no general legislation until very recently, and hence there was no right of this sort, though there was a general expectation, multi-based, that local governments will secure access to all citizens to the health care on List 1, somehow, and that the federal government would ensure that it is available to those unable to arrange for their own care under targeted legislation like Medicare and Medicaid. The new legislation, employing the general use of medical insurance companies as implementing vehicles, may provide for effective universal care, but the government’s obligations have been therewith mitigated by the inclusion of an intervening third party with a substantial interest in minimizing costs. So though there was no real right to health care, there is now a possibly ill-founded obligation resting in the breach that serves in the United States the social purpose of a real right.

Why There Is No Right to Health Care So widespread is the general expectation that the state, national or local, or hospitals, or doctors, already have some unspecified obligation to provide various forms of medical care that the invocation of a right to health care falls on ready ears. However, in the absence of the foundations discussed above, the invocation is merely rhetorical. Philosophers and bioethicists who enter into this game of supposing that what ought to be is, do no service to the larger community. In those states (e.g., the United Kingdom) where there is both legislation and relevant resource distribution to secure the mandate of that legislation, there is a real right to health care established by the mandate of the legislature despite the inadequate resources devoted to its satisfaction. The population is entitled to the care on List 1 (suitably modified to include what I have inadvertently omitted), but that right does not extend to items like those on List 2. For the right to extend beyond List 1, adequate resources must be made available (presumably after the resources to satisfy List 1 actually have been adequately

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provided). In fact, the struggle for the expansion of health care services in such nations is the jockeying among patients and providers to move items from List 2 (or even from List 3) onto List 1, thereby effectively obliging the government to supply the resources as part of the national mandate. In this brief chapter I’ve said nothing nice about anyone. And in this conclusion I won’t be saying anything nice either. Philosophers have acted no better than populist lobbyists in elevating the notion of a right to health care to the status of objective fact. There is no such right in general and, in particular, it is to be found only within the confines of a few medically enlightened nations. Even here it is a niggardly thing, graced with fine words but in practice an impoverished provision. I believe that the competition to expand health care services to meet health care expectations will be the main social battlefield of the 21st century. As life’s horizon extends for some, all others will feel cheated for being left behind, and left behind by their own national guardians.

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8 Equality, Democracy, and the Human Right to Health Care KRISTEN HES SLER AND ALLEN BUCHANAN

INTRODUCTION Recent writing on the human right to health care is characterized by two trends. First, public health scholars increasingly emphasize that health is a complex good, promoted and protected by circumstances well beyond access to medical care for individuals or even the provision of traditional public health services to populations. It is increasingly recognized that goods as diverse as healthy physical environments, access to adequate nutrition, access to education, and gender equity contribute to health in populations. Second, work in both public health and in bioethics has increasingly recognized the importance of political empowerment and participatory processes to fair and effective health policies. In this chapter, we articulate an approach to human rights that supports both of these trends. We proceed by first sketching an account of the human right to health care that grounds this right in the importance of health as a component of human well-being. We then consider two views of human rights that we find deeply implausible, but whose flaws are instructive: in addition to the fact that neither provides a secure grounding for a human right to health care, neither, we argue, adequately appreciates the role of egalitarian political procedures for fully specifying the content of human rights. Finally, we provide a positive argument for our view that the appropriate forum for specifying the content of a human right to health is through appropriate democratic political procedures, and not by moral or political theory alone. HUMAN RIGHTS Human rights are those moral rights that all people possess. International human rights treaties reflect the efforts of the international community to

make the protection of these moral rights binding under international law. As the rights of all persons, moral human rights are importantly egalitarian. For example, the first article of the Universal Declaration of Human Rights proclaims: “All human beings are born free and equal in dignity and rights,” and the preamble of each document in the International Bill of Rights states that “recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world.” More substantially, international human rights law enumerates specific legal rights that underscore the importance of equality, such as equality before the law and rights against discrimination based on race or gender (Buchanan, 2010). Two features may be taken as essential to all moral human rights claims. First, the claim that there is a moral human right to some good, such as health care, is much stronger than the claim that it is desirable that all people have health care. One does not have a moral right to all those things that might increase one’s well-being; for instance, one does not have a moral right to possess a sense of humor. Rather, moral rights are strong moral claims, such that A’s possessing a human right to X entails that some other agent, or group of agents, has obligations to A. These obligations may include providing A with X, or, more minimally, refraining from depriving A of X. Second, human rights are universal rights, in the sense that they “are ascribed to all human beings simply by virtue of their humanity or personhood” (Buchanan, 2004, p. 121). In our view, human rights are best understood as moral claims grounded in interests that are universally shared by all (or nearly all) human beings, and that in turn are weighty enough to

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justify assigning obligations to other individuals, or to society generally, to secure and protect those interests (Buchanan, 2004, Ch. 3). On this account, there is a human right to health because being healthy is a universal human interest of sufficient weight to justify holding others to be under a duty to protect or promote this interest. The human right to health itself grounds both negative duties (for example, duties not to knowingly or carelessly imperil the health of others), as well as positive ones, especially on the part of governments, to promote or protect health among the population, at least when resources permit. Specifying the nature of rights in this formal way does not indicate which interests ground human rights. Rather than give a complete account of which rights are human rights, however, for the purposes of this chapter we merely want to show that, on this account, a moral human right to health care would be justified by reference to two very plausible claims: that the interest in access to health care is both (a) universally shared among all persons and (b) weighty enough to justify assigning at least some specific duties to at least some agents to respect and protect this interest, where the costs of doing so are not excessive.

R I G H T T O H E A LT H C A R E , R I G H T T O H E A LT H Research has shown that services provided by medical professionals to individuals are only a small component of the factors that make a difference to people’s health. Public health services are at least as important as medical services, and in many places the provision of basic public health measures could make much more difference to improving the health of large numbers of people. Unsurprisingly, individuals in poorer countries fare worse on all sorts of health measures than do richer ones. One obvious reason for this is that richer countries have more money to spend on medical care, but no less important is the fact that many citizens of richer countries have better access to healthy environments and adequate nutrition. This observation is consistent with the orientation of social epidemiology: The starting position of social epidemiology is that individual-level factors do not provide sufficient causal explanations for the significant health differences between groups of human beings defined by such social characteristics as nationality, education, income, occupation, gender, race/ethnicity, or geographical residence.

The hypothesis is that factors created by the social environment have a significant influence in the causal pathways to illness in individuals and unequally distribute ill health across social groups. (Venkatapuram, 2010, p. 124)

Moreover, recent work in public health suggests that socioeconomic status itself makes a difference to health outcomes across social groups. Longitudinal studies done on civil servants in England have shown significant differences in health outcomes based on the level of work performed over a person’s career. These differences were graded—for each increase in the employment grade within the civil service, health outcomes also improved. Moreover, these graded differences obtained despite the fact that all British civil servants have access to health care, all were equally likely to be stably employed, and all were well above the poverty line. Even more strikingly, the gradation of health outcomes correlating with employment grade persisted after accounting for standard risk factors for particular conditions (Sreenivasan, 2007, p. 24). Given the complexity of determinants of health, many have thought that the right to health care is too narrow and have favored a focus on a right to health more generally. Support for this move comes from the major human rights documents, which more often assert a “right to health” than a “right to health care.” For example, the International Covenant on Economic, Social and Cultural Rights includes the “right of everyone to the enjoyment of the highest attainable standard of physical and mental health,” whereas the Universal Declaration of Human Rights embeds a right specifically to medical care within a broader right to health and well-being. However, asserting a right to health, as opposed to a right to health care, invites the criticism that it seems impossible to fulfill. A right to health care implies, on its face, a right to certain services. By contrast, a right to health might seem to imply a right to be healthy, which is an impossible standard to meet: some severely ill or impaired individuals will never be healthy, no matter how many resources are expended on them. Moreover, seriously pursuing health for everyone would be so draining on social resources as to leave little, if any, room for the pursuit of other social goals. However, despite this objection, there are two reasons to search for an acceptable interpretation of the “right to health” rather than to reject the term entirely. One is that, as we mentioned, major

Equality, Democracy, and the Human Right to Health Care human rights treaties assert a right to health. It would be a serious cost to reject all articles in human rights treaties that assert a right to health, especially if an acceptable understanding of that locution were available. Second, given that it is undeniable that factors other than access to medical care have a significant impact on health, the notion of a right to health is valuable. A right to health care seems too narrow to cover factors like healthy environments or good sanitation facilities. This suggests that the “right to health” may be a useful label for a wider category of rights. Such an understanding is consistent with current usage of these terms, as many human rights treaties assert specific rights to certain kinds of medical care or public health services as part of a general right to health. There are two ways to understand a right to health as including the right to health care. One is to see the right to health as shorthand for a longer list of specific entitlements, including the subset of entitlements that make up the right to health care. To a certain extent, we accept this description. We use the term “right to health care” in this chapter to refer to rights to services rendered by health care professionals to individuals or to populations. Thus, the right to health care includes curative and preventive services provided to individuals—such as therapy for illness, health screenings, and prenatal care—as well as population-based services like immunizations. The right to health care, on our understanding, does not include rights to clean water, adequate sanitation, or the careful placement of toxic waste. In this sense, the right to health care picks out a subset of the entitlements that make up the broader right to health. However, this should not blind us to the other, more foundational, way of understanding the right to health as including the right to health care. The right to health asserts that the basic human interest in health is so important as to justify assigning some obligations to some agents to protect, promote, or at least not to actively set back that interest. It is because health is so important to human beings that rights to health care are important. However, it is also with an eye on the importance of the basic human interest in health that we see that, in some circumstances, health care is less important than other contributors to health, like sanitation or clean water. In this way, rights to health care and rights to healthy environments are best seen as components of the right to health, in the sense that they are different kinds of

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claims that are both justified by reference to the basic interest in health.

R I G H T S O R O B L I G AT I O N S ? One source of skepticism about a right to health care is skepticism about the project of human rights themselves. Onora O’Neill has argued in this vein that “if we want to establish intellectually robust norms for health policies it would be preferable to start from a systematic account of obligations rather than of rights.” This is so, in her view, because: A common problem with rights-based approaches is that rights are usually identified using highly ambiguous substantival phrases such as “right to life” or “right to health,” “right to development” and “right to work,” “right to equal opportunity” and “right to access,” as well as latterly “right to know” and “right not to know.” Most of these phrases have multiple interpretations: they cannot be disambiguated without sorting out who has to do what for whom—in short by specifying which obligations correspond to various more specific interpretations of each supposed right. Taking rights as basic to ethics, including health ethics, does not get close enough to the action. (O’Neill, 2002, p. 42)

However, in our view, there is no need for an account of human rights to “take rights as basic to ethics,” and in particular there is no reason for an account of the human right to health to shortchange an account of obligations. We believe that the best account of human rights grounds them in important and basic interests shared by all human beings. Human rights, then, are what we can call “middle-level” moral claims: they are claims about which interests shared by all human beings justify holding others to be under an obligation to protect those interests. This puts us in agreement with Joseph Raz’s point that rights specify the reasons for holding some agent(s) to be under an obligation, without specifying the content of the obligations or the specific agents to whom the obligations are assigned: To say that a person ought to behave in a certain way is to assert a requirement for action without indicating its ground. To assert that an individual has a right is to indicate a ground for a requirement for action of a certain kind, i.e. that an aspect of his well-being is a ground for a duty on another person. The specific role

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of rights in practical thinking is, therefore, the grounding of duties in the interests of other beings. (Raz, 1986, p. 180)

Rights, on this view, are not morally basic. They are, rather, moral claims derived from the urgency of protecting certain basic human interests, on one hand, which can, with further argument, ground other claims about who owes what to whom in order to best protect those interests. This answer is not likely to satisfy O’Neill, however, since in her view the point of moral theorizing about health policies is both to specify the foundations of moral obligations regarding health and the content of the obligations themselves. O’Neill’s account of “a promising route for doing this” is to rely on “a minimalist Kantian conception of reason and action that can establish (for example) basic obligations to reject coercion and deception, victimization and oppression, and to assist others in permissible forms of action” (O’Neill, 2002, p. 42). On O’Neill’s view, this approach has the advantage over an approach that relies on rights insofar as it makes clear “who has to do what for whom”: Even the notion of a universal “right to health care,” while not glaringly incoherent, is multiply ambiguous and may or may not be compatible with other equally important—or more important—obligations in particular cases and circumstances. It is easier to judge the coherence of proposed sets of obligations than of proposed sets of rights, because requirements for action are more explicit when we start with obligations. (O’Neill, 2002, p. 42)

In our view, however, O’Neill puts too much emphasis on the role of philosophical moral theory in assigning real-world obligations regarding health and health policies. Instead, we contend that political decision-making, conducted through legitimate institutions, is necessary in order to arrive at legitimate assignations of specific duties to specific agents. For this reason, it is not troubling that rights discourse itself does not fully specify duties: the specification of those duties is necessarily a function of the outcomes of legitimate political institutions. We elaborate this argument in the section below on “Human Rights and Political Institutions.”

POLITICAL CONCEPTIONS OF HUMAN RIGHTS Another source of skepticism about the human right to health care can be found in “political”

conceptions of human rights, which stipulate that human rights “proper” contain only those rights that a state must respect in order to be considered legitimate—that is, a member in good standing of the society of states, entitled to political selfdetermination. Such views do not tend to make room for a human right to health care, since a state can fail to provide health care as a matter of right, while still being recognized (according to most standards of international toleration) as a state entitled to exercise self-determination. John Rawls’s view in his Law of Peoples is a political account. For Rawls, human rights are those whose violation justifies cross-border interventions. As a result, Rawls’s list of human rights is notably short: the right to life (to the means of subsistence and security); to liberty (to freedom from slavery, serfdom, and forced occupation, and to a sufficient measure of liberty of conscience to ensure freedom of religion and thought); to property (personal property); and to formal equality as expressed by the rules of natural justice (that is, that similar cases be treated similarly). (Rawls, 1999, p. 65)

There are good reasons to recognize that the standard for toleration on the international stage should not be so high that any injustice licenses intervention. Identifying the fulfillment of human rights as the standard for toleration rather than justice, however, has two undesirable consequences. First, doing so basically turns human rights into a term of art within political theories, thereby abandoning the project of explicating the term “human rights” as it is standardly deployed in the wider project of human rights practice or in political theory (Tasioulas, 2009). Second, due to the pressure not to make the standards of international toleration too strict, political views tend to dramatically truncate the broad range of human rights in the human rights culture, thereby leaving no or very little room to make conceptual sense of a human right to health care. An exception in this regard is Joshua Cohen’s view. According to Cohen’s more expansive political conception of human rights: “A statement of human rights presents, as is commonly said, a set of limits on internal sovereignty, or—perhaps better—presents conditions on which a state’s internal sovereignty is acknowledged” (Cohen, 2004, p. 195). On Cohen’s view, human rights are those that are “founded on an idea of membership or inclusion in an organized political society”:

Equality, Democracy, and the Human Right to Health Care The central feature of the normative notion of membership is that a person’s good is to be taken into account by the political society’s basic institutions: to be treated as a member is to have one’s good given due consideration, both in the processes of arriving at authoritative collective decisions and in the content of those decisions. (Cohen, 2005, p. 237–238)

The idea of membership is supposed to take into account “the breadth and substance of the rights in the Universal Declaration and the Covenants— including rights to education, work, and cultural inclusion, as well as assembly, expression, and participation” (Cohen, 2004, p. 197–198). Moreover, Cohen embraces the requirement of “fidelity to the human rights culture”: “if there are human rights, then at least some substantial range of the rights identified by the principal human rights instruments—especially the Universal Declaration—are among them” (Cohen, 2005, p. 229–230). This suggests that Cohen wants primarily to explicate, rather than to revise, the range of human rights included in human rights practice, such as a right to health care. Whether Cohen’s account is successful in this regard depends on how the notion of “membership” is understood—the more substantive membership is, the longer his list of human rights will be. However, two features of Cohen’s view suggest that it is not obvious that it can include a human right to health care. First, Cohen’s account of the ideal of membership foregrounds political rights as the primary means of “having one’s good given due consideration.” As Cohen puts this point: “while human rights are not confined to matters of process, the prerequisites of a process of collective self-determination—including rights of dissent, expression, and conscience—are among the human rights” (Cohen, 2005, p. 237–238). Our point is that there is no indication in Cohen’s explication of rights of membership that suggests a right to health care is included. This suggests that a society might satisfy the norm of membership in the political process, while access to health care is determined solely by market forces, for example. Second, justifying a right to health care on the basis of a more foundational right to participate on equal grounds with others, or a right to equality of opportunity, is not obviously available to Cohen. This is because Cohen’s ideal of membership does not require a commitment to equality; that is, while each member’s good must be given due consideration, this does not imply that

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they must participate in the political process at all, much less on an equal footing with others. Thus, Cohen’s norm of membership can be satisfied even if some people’s access to the processes of political decision-making is hampered due to ill health. If this analysis is correct, then Cohen’s political conception of human rights is in tension with his own commitment to fidelity to the human rights culture, for two reasons. First, this culture includes rights to health care and other social and economic provisions that are not obviously captured by his ideal of membership. Second, giving each citizen’s good “due consideration” is compatible with the good of some arbitrarily counting for much less than that of others. For this reason, Cohen’s account of human rights is at odds with the egalitarianism of human rights that we emphasized earlier as a feature of human rights culture, especially the stringent requirements within international human rights practice of equality before the law and prohibitions on gender and racial discrimination. It is Cohen’s commitment to the thesis that protection of human rights does not require the political equality of citizens that leads him to deny any essential connection between human rights and democracy (understood broadly as a political process committed to the equal standing of all citizens).

HUMAN RIGHTS AND POLITICAL INSTITUTIONS In our view, a complete response to criticisms of human rights like O’Neill’s, or a complete analysis of what human rights must be recognized to be in order to give “due consideration” to the interests of citizens, requires paying greater attention to the political institutions that are necessary for adequately implementing human rights. Our account of the moral human right to health care does not specify what individuals are entitled to on the basis of this right, nor does it specify who exactly is responsible for meeting these entitlements. These might seem to be serious defects in the account. If it is not clear what the content of the human right to health is—that is, what exactly people are entitled to claim on the basis of this right, and who exactly is obligated to provide what in response—then implementing the right to health through international human rights law, and monitoring states’ compliance, will, it seems, be correspondingly difficult. In response to this problem, it might be tempting to specify in detail the scope and content

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of the right to health care for legal purposes. However, the project of giving an account of the content of the legal human right to health care that is universally applicable to all states ignores several important parameters of difference among states. On such a view, states would be considered in violation of human rights law if they could not afford to provide all the services that are included in the right to health care. If all states had something like a fair share of the world’s resources, then requiring them to expend similar levels of resources on health care provision might be justifiable. In the world as it is, however, disregarding the wide differences in available resources between states is unacceptable. Furthermore, any uniform specification of the content of the human right to health care must ignore the fact that different health-related problems in different countries may require different health services. Any attempt to specify a single, universal standard for the human right to health care must depend on the premise that all health problems in all countries can be equally well addressed by a universal package of health services. But a very limited set of services is all that most states can ensure, and no very limited set of services can adequately address the diverse health needs of different states. Finally, there are important social and cultural differences among states that might be relevant to the implementation of a right to health care. The World Health Organization’s 2009 report from the Commission on Social Determinants of Health notes multiple ways in which social and cultural factors influence both the health challenges and appropriate strategies for addressing them within different states. For example, the report notes that “the proportion of women who have a final say in decision-making on their own health care varies strongly across low- and middle-income countries, from below 20% in Burkina Faso to around 88% in Jordan” (CSDH, 2008, p. 145). This statistic suggests that, for many states, improving women’s health cannot proceed without the empowerment of women within the family. The report also argues that “the treatment of indigenous cultures—their world views, values, and aspirations—on the part of governments and those who deliver direct services” is a major determinant of health outcomes within indigenous communities. For example, the presence of every additional “cultural continuity factor” (land claims, self-government, education, police and fire services, health services, and cultural facilities) within indigenous communities is correlated

with a reduction in youth suicide rates within those communities (ranging from 120 per 100,000 in communities with no such factors to a rate of slightly over 20 per 100,000 for communities with five, and 0 per 100,000 in communities with all six cultural continuity factors) (CSDH, 2008, p. 157). As the Commission noted, implementing rights to health and to empowerment for indigenous peoples in different states, with their different histories and present circumstances, “will require careful consideration, led by Indigenous Peoples” (CSDH, 2008, p. 159). These examples show that any adequate account of how to implement the human right to health care must take the relevant social and cultural differences between states into consideration. These differences among states—differences in resource levels, different health-related problems, and social and cultural variations—combine to recommend against the project of incorporating into international human rights law a universal, determinate specification of the content of the human right to health care. Yet to implement and enforce the human right to health care in international law, we need some account of how it should be specified. Without such an account, we are threatened by two undesirable consequences: either states will be free to claim almost any arrangement as a fulfillment of the human right to health care, or the international monitoring bodies will be tempted to enforce one single standard on all states, regardless of their differences. Currently, the content of human rights in international law is specified mainly through the operation of international institutions, with some contribution from national governments. For example, the UN’s Committee on Economic, Social, and Cultural Rights in 2000 issued a General Comment on the right to health. It included a specification of the “normative content” of the right, including the claim that “the right to health is not to be understood as a right to be healthy.” It enumerated issues relating to health and specific populations, such as children, the elderly, and women, as well as the obligations of states and other agents in implementing this right (Committee on Economic, Social and Cultural Rights, 2000). Whereas specifying human rights is an essential process in human rights implementation, we should ask whether the authority for specifying such rights properly lies with international institutions, or whether it should lie elsewhere, or whether there should be a division of labor

Equality, Democracy, and the Human Right to Health Care regarding the tasks of specification. The most obvious justification for granting this authority to international institutions is that human rights are best viewed as rights against the state. Rights against torture and arbitrary imprisonment, as well as rights to health care, impose obligations on the state. Accordingly, states should not be allowed to specify the content of human rights for themselves, for this would allow them to judge the extent of their own obligations. On this view, the best human rights protection must come from supranational institutions. However, if all human rights are specified through international institutions, it is unlikely that the local differences that we mentioned earlier—which include differences in levels of resources, existing health problems, and culture—will be taken adequately into account. Our discussion of the human right to health care has thus led us to an institutional question relating to all human rights: Which institutions (if any) can specify the content of human rights in such a way that differences among states are taken adequately into account? We propose that the virtues of constitutional democratic governments suggest that they are better suited than international institutions for specifying human rights, and also that they might be able to do so in a way that adequately accommodates differences among states. A constitutional democratic government includes majoritarian political decision-making alongside entrenched rights that prevent majority tyranny over minorities. Briefly, there are three main virtues of constitutional democratic government. First, through contested elections, democratic procedures allow people to assert their interests in the political arena. Moreover, through the equal distribution of political rights, appropriately constrained majoritarian decision procedures embody equal consideration for the interests of all citizens (Christiano, 2004). Therefore, insofar as human rights are grounded in basic human interests, there is an important connection between democratic politics and human rights. Second, constitutional democracy is (at least in theory) the system of government that is most closely allied with the interests of the governed. To the extent that this ideal is realized in practice, such governments have little impetus to violate the human rights of their citizens. Third, participatory political procedures, along with institutionalized rights, protect minorities from having their interests ignored and protect the functioning of the participatory decision-making processes (such as

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rights to freedom of expression and association). These mechanisms are most likely to elicit citizens’ concerns about particular human-rights problems, and their suggested solutions for those problems. Thus, the specification of human rights within states’ institutions is likely to be a reliable means for ensuring that those rights are satisfied (Buchanan, 2008). These virtues provide grounds for exempting democratic governments from the general authority of international institutions to interpret human rights law. On our view, then, constitutional democracies should have some authority to interpret human rights law for implementation within their own borders (Hessler, 2005). Constitutional democratic states should not have absolute interpretive authority, however, even regarding the human rights of their own citizens. One reason is that human rights, while vague, are not meaningless. The human right to health care asserts that all people have a right to health care sufficient for their health and wellbeing. While this broad statement leaves many particular questions unanswered, it is determinate enough to provide the grounds for criticizing a system in which only members of a certain class, or race, have access to some health-related services. Some situations clearly violate human rights, even in their unspecified form. For that reason, international human rights bodies should have some role in supervising the implementation of human rights in both democratic and nondemocratic states. At this point, one might raise the objection that this account seems circular. The appearance of circularity is suggested by the fact that we have argued that human rights require interpretation in order to be implemented and enforced, but also that the international community should supervise the implementation of human rights even within constitutional democracies. To do this, it would seem that international institutions would have to solve the specification problem. However, if they could do so, then there would be no need for specifying human rights at the national level through democratic institutions. Our reply to this objection is to note the restricted way in which international institutions should supervise the implementation of human rights within constitutional democracies. We suggest that the role of international institutions should be limited to two functions. First, they should specify minimal conditions for rightsrespecting democratic political procedures

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within states. These conditions must be designed to ensure that democratic procedures work as they should, so they will include a well-functioning electoral system, wide freedom of speech and association, and the like. Second, international institutions should review national health care situations and point out any obviously inadequate policies. Neither of these tasks requires resolving the specification problem.

CONCLUSION We conclude by acknowledging an important limitation of our argument in this chapter. We have taken for granted that states have widely diverse levels of resources, such that some nations do not have enough resources to spend on their legitimate needs. We have taken this for granted for the limited purpose of pointing out the absurdity of holding poor nations responsible for providing the same protections for all human rights that richer nations are capable of providing. However, there are reasons for regarding the radical inequality of the international distribution of resources as seriously unjust. If so, the human right to health care may generate reasons for holding the international community (as well as states’ governments) responsible for providing health care adequate for the health and well-being of populations whose governments are too poor to do so, or for making sure that no state remains so poor that it cannot adequately protect the human rights of its citizens. References Buchanan, A. (2004). Justice, Legitimacy, and SelfDetermination. Oxford: Oxford University Press. Buchanan, A. (2008). Human rights and the legitimacy of the international order. Legal Theory 14:39–70.

Buchanan, A. (2010). The egalitarianism of human rights. Ethics 120:679–710. CSDH. (2008). Closing the gap in a generation: health equity through action on the social determinants of health. Final Report of the Commission on Social Determinants of Health. Geneva: World Health Organization. Christiano, T. (2004). The authority of democracy. The Journal of Political Philosophy 12:266–290. Cohen, J. (2004). Minimalism about human rights: The most we can hope for? The Journal of Political Philosophy 12:190–213. Cohen, J. (2005). Is there a human right to democracy? In Christine Sypnowich (ed.), The Egalitarian Conscience, pages 226–250. Oxford: Oxford University Press. Committee on Economic, Social and Cultural Rights. (2000). The right to the highest attainable standard of health. e/c. 12/2000/4 (general comments). Available at: http://www.unhchr.ch/tbs/doc.nsf/ (symbol)/E.C.12.2000.4.En. (Accessed October 20, 2010). Hessler, K. (2005). Resolving interpretive conflicts in international human rights law. Journal of Political Philosophy 13:29–52. O’Neill, O. (2002). Public health or clinical ethics: Thinking beyond borders. Ethics and International Affairs 16:35–45. Rawls, J. (1999). The Law of Peoples. Cambridge: Harvard University Press. Raz, J. (1986). The Morality of Freedom. Oxford: Oxford University Press. Sreenivasan, G. (2007). Health care and equality of opportunity. Hastings Center Report 37:21–31. Tasioulas, J. (2009). Are human rights essentially triggers for intervention? Philosophy Compass, 4:938–950. Venkatapuram, S. (2010). Global justice and the social determinants of health. Ethics and International Affairs 24:119–130.

PART II Access and Rationing

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9 Unequal by Design Health Care, Distributive Justice, and the American Political Process BRUCE C. VLADECK AND ELIOT FISHMAN

INTRODUCTION American democracy takes place within a uniquely complex constitutional and legal framework. Every nation, of course, is different, but the United States may be more different than most in the way that a basic framework established more than two centuries ago has evolved, adapted, and been modified while maintaining certain remarkable continuities. At the same time, the United States is the only modern industrial democracy without some form of universal health insurance. Even if the Affordable Care Act survives both political and legal challenges between now and 2014, the United States will still lack a truly universal healthinsurance program both in principle and in practice, with the Congressional Budget Office estimating that 6% of legal, non-elderly residents will lack health insurance after full implementation. Indeed, regardless of whether the Affordable Care Act’s Medicaid expansions and partial individual mandate survive electoral and judicial challenges, in most of the United States citizens will continue to have no right or legal guarantee of access to any medical care except evaluation and treatment by hospital emergency departments, if they can somehow contrive to find their way to one. We believe these two phenomena are causally related. That is our basic thesis: that inequities in health care in the United States arise from the fundamental constitutional and political structure of the American political system. That system does not make inequities inevitable, but it certainly makes ameliorating or eliminating them much more difficult than is the case in any other affluent society. And this is an incredibly affluent society— perhaps more so than any other society in human history. Traditional economic appeals to scarcity

as the root of inequities in American health care simply won’t wash, especially given how much more this country already spends for health care than any other nation. To make our argument, we will consider the interrelationship between constitution, policy, and politics at three levels of the American system: in the failure to enact comprehensive national health-insurance legislation and the belated, stilltenuous enactment of an individual mandate system; in the politics surrounding Medicare, the United States’ single system of universal health insurance for part of the population; and in the operation of those health-insurance programs for which responsibility is primarily devolved to the states, a longstanding approach. We will conclude with some observations on the implications of our analysis for competing strategies to redress those inequities.

N AT I O N A L H E A LT H INSURANCE AND THE MADISONIAN DESIGN In American politics, constitutional theory and constitutional interpretation are never just matters of objective analysis or dispassionate history, but a few aspects of the nation’s basic governmental structure are largely indisputable. First, the Founding Fathers took the division of powers further than any other constitutional authors since, providing independent electoral bases for the national legislature and executive and lifetime tenure for federal judges within a structure that renders the three branches of government almost uniquely interdependent. Not only do presidents and the Congress often have different political allegiances, but the House of Representatives and the Senate frequently march to different drummers, even when the same political party has

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a majority. The kind of unity of policy and politics possible in parliamentary governments in those instances in which one party has won a substantial majority, never mind the monolithic authority of majorities in the British system, can occur in the United States only when an electoral landslide is accompanied by chronological accidents in the terms of senators and Supreme Court justices, something so unlikely that it occurred for only 4 years, perhaps 6, in the whole of the 20th century. In other words, a distinct bias towards inaction is built into the American political system. The Founding Fathers were apprehensive that a more plebiscitary type of democracy, at least as democracy was understood in the late 18th century, would unduly threaten the prerogatives of wealth and property ownership. They explicitly feared a “tyranny of the majority,” and explicitly advocated for a governmental structure that could take bold action only with great difficulty.1 Significant positive change in social policy has generally come more slowly—and much later—in the United States than in other democracies. And by most measures, the United States has been less willing to provide public support of social-welfare measures than other industrialized nations. Although among the most affluent, Americans are about the least heavily taxed citizens of the First World; in direct correlation, they are also the least likely to benefit from public income support, family support, or health-insurance programs. Madison and his contemporaries got what they wanted. Participants in the Constitutional Convention attended not solely as members of a sociocultural and political elite, but also as representatives of at least partially sovereign states. Much of the time and energy of the Convention was devoted to protection of the states’ sovereignty and influence, and while the broad sweep of subsequent American history has been in the direction of nationalization of the economy, the culture, and political life, the governmental system is still profoundly shaped by these originating impulses.2 The significant and independent role of state governments in the formation and implementation of policy is the most obvious and important manifestation of the continuing role of subnational governments in the American political system. But there are other federal systems in the world, and in Canada and Germany, to name only the two most relevant examples, the sub-national governments play a central role in the structure of

national health insurance. What distinguishes the American political structure is the extent to which federal officials remain tied to sub-national political forces and pressures. Representation in the upper house of the American legislature is based on states, not on population, so that Wyoming’s half-million residents elect as many senators as California’s 35 million. Thus American public policy almost invariably tilts towards the interests of less-populated rural communities and the resource-extraction industries on which many of them rely. Even in the House of Representatives, where seats are allocated to the states in proportion to population and where the Supreme Court has required relatively equal population distributions across districts, representatives are elected by local majorities in districts usually drawn by state legislatures under election laws and procedures administered by the states. Whenever policy issues counterpose the values of national uniformity with the ability to respond to the peculiarities of individual geographic communities, the local focus almost always wins out. The United States is an especially large and heterogeneous country. Populations, cultures, and economic characteristics differ as widely as the nation’s topography. So do health care needs and the characteristics of health care delivery systems. The interaction of so much diversity with a centrifugal political system further reinforces the difficulty of making dramatic, coherent, national policies. According to the famous and rarely disputed adage, in the United States all politics is local. In other political systems, such centrifugal forces are counterbalanced by the role of political parties that in theory provide relatively coherent ideological positions with which voters can identify and around which elected representatives can organize. The Founding Fathers were largely opposed to the idea of creating stable, organized political parties (Federalist Papers, 1961). While most Americans have historically identified themselves as “Democrats” or “Republicans,” American political parties have never displayed the unity or ideological discipline of their European counterparts, even with the increased ideological polarization of the parties in the last decade. Because the United States has no nationally elected legislative officials, American legislators have always been mainly dependent on local majorities and ready to abandon their party leadership to respond to local imperatives.

Unequal by Design But the distinctiveness of American political parties is ideological, not just structural. Indeed, one important school in the historical analysis of why America lacks comprehensive national health insurance pretty much starts and ends with the syllogism that: the United States is the only industrialized nation never to have had a major labor party: in the rest of the world national health insurance has been the product of labor party governments or the imminent threat of them; hence, there is no national health insurance in the United States. That syllogism, of course, begs the question of why there has never been a national labor party in this country. The evolution of American political parties from early in the 19th century until very late in the 20th century was dominated by sectional cleavages that cross-cut coherent ideological or class lines.3 Prior to the Civil Rights Act of 1964 and the Voting Rights Act of 1965, the history of the Democratic Party was inseparable from the politics of the white supremacist South. Even when the Democrats attracted the allegiance of working people and progressive reformers, as they did briefly in the Wilson years and then more or less permanently since 1928, they were always constrained by the fact that a large portion of their national base was tied to the most conservative and localistic forces in American politics. Conversely, the dramatic realignment of Southern politics during the past five decades, combined with the evolution of campaign financing, may finally be leading American political parties to resemble the classic European model, reflected to a considerable extent in the 2000, 2004, and 2008 elections. Divided government, localism, weak national political parties—these are the structural elements of American government that have produced the most inequitable health care system in the Western world. It could also be argued, rightly, that American political culture is itself substantially more conservative, more protective of the interests of private property, and more suspicious of governmental action and governmental intervention, than any other Western nation. Most important political phenomena—like American health policy—are overdetermined, in part because structure and culture interact and reinforce one another so strongly. But public opinion and even political culture are more malleable and more volatile than political structures, arguing for the greater importance of structural than cultural causes. And it is doubtful that a majority of

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Americans are ideologically opposed to more dramatic government action on health care. Although the extent of that support has waxed and waned in response to short-term forces, public opinion data in the United States for the past 60 years have usually shown widespread popular support for greater governmental intervention to reduce inequities in health care. Nevertheless, the conservatism of America’s system appears to trump the flexibility of American public opinion on health care issues. Even a very cursory review of the history of national health-insurance proposals in the United States bears out the effects of these forces. Notwithstanding the efforts of the American Labor League and some other early reformers, government intervention to ensure access to health care for all Americans did not really arrive on the political agenda until 1935, when President Roosevelt’s Advisory Committee on Social Security recommended that health insurance be a part of the basic package of protections extended to all Americans under a comprehensive national scheme of social insurance. Yet Roosevelt, who was perhaps the most extraordinarily pragmatic politician in the history of the American presidency, feared that opposition to health insurance from organized medicine would jeopardize the entire package in the legislative process. At the time, Roosevelt was close to the peak of his extraordinary popularity, and his party commanded comfortable majorities in both houses of Congress. But that majority included a sizable fraction of Southerners, including a number of critical committee chairmen, whose willingness to support national pensions and cash assistance might be threatened if their local medical communities were mobilized in opposition. So health insurance was the only major recommendation of the Advisory Committee that was not included in the legislation proposed to, and ultimately enacted by, the Congress. National health insurance thus became a major agenda in the unfinished business of the New Deal that the remaining New Dealers sought to advance after World War II ended. But by then they had lost their electoral majorities. Just as war-weariness and the yearning for a return to domestic agendas is often adduced as the explanation for the unanticipated success of the Labour Party in Britain’s 1946 elections—which led immediately to the creation of the National Health Service—a similar desire for change in a more prosperous, less war-devastated nation ended the Democratic Congressional majority in the United States in the same year and essentially doomed

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national health insurance in this country. President Truman’s unsuccessful advocacy of the Murray-Wagner-Dingell health-insurance proposal in 1948—the high-water mark of national health-insurance efforts for the next generation— may have assisted in his unexpected re-election, but it did nothing to change a fundamentally unfavorable legislative balance of power. Under another democratic system, of course, Truman’s 1948 election would necessarily have altered the legislative balance of power. The Congress was controlled by a coalition of Republicans and conservative Southern Democrats from 1946 through 1964, and early in that period, after the defeat of Murray-Wagner-Dingell in 1948, the leading advocates of national health insurance both inside and outside the executive branch concluded that movement towards greater equity in access to health care would have to come more incrementally, in the kind of smaller bites the Madisonian system seemed to make inevitable. After 1950, therefore, they decided to focus their efforts on a relatively modest proposal to provide hospital insurance for the elderly. The enactments of Medicare and Medicaid in 1965 and the Affordable Care Act in 2010 are the exceptions to the general failure of the American political system to address widespread inequities in access to health care and will be discussed at greater length below. Perhaps the only thing that surprises about the failure of the political system to enact major changes in the health care system between 1965 and 2010 is how close it came on two occasions. In 1972, a Nixon Administration that was preoccupied by re-election concerns and an ideologically fractionated Democratic Congress came remarkably close to actually enacting some form of national health insurance. In 1993, a newly elected Clinton administration may have squandered its opportunity by moving too slowly, too obtusely, and with too little understanding of how to build a supportive coalition in the Congress. One of us was personally involved in the 1993–94 Washington events, however, and believes the Administration never really came close to succeeding. In both 1972 and 1993–94, there was widespread popular support for the national government doing something about reforming the health-insurance system to improve access for all Americans, and a relatively popular president actively supported legislation to that effect. Still, the political system ultimately produced stalemate, just as it was designed to do.

It is remarkable that Medicare got passed at all. That only happened because of the unique election landslide of 1964. Medicare was held up all through the 50s and early 60s by the effective veto power of senior Southern Congressmen opposed to a big new federal program. But, thanks to the Goldwater nomination and the Kennedy assassination, the 89th Congress of 1965–6 had an extremely large Democratic majority, by American standards, of 68 to 32 in the Senate and 295 to 140 in the House. The combined veto power of Republicans and Dixiecrats was temporarily suspended. But only partially—Wilbur Mills still chaired the Ways and Means Committee and he shaped the passage of both Medicare and Medicaid. Mills famously moved to include physician services in Medicare and to expand the KerrMills program for the poor aged to welfare recipients of all ages in the Medicaid program. He intended these incremental expansions to forestall demands for national health insurance. (Marmor, 2000, 58–60) The passage of the Affordable Care Act in 2010 also reflected an exogenous landslide election, producing a short-lived 60–40 Democratic majority in the Senate after a historic financial crisis that took place 2 months before an election and with the help of a prolonged recount in Minnesota and the criminal trial of a sitting senator in Alaska. This majority lasted for 7 months, enabling the Affordable Care Act to take the first step in a convoluted procedural journey through multiple reconciliation votes, all or much of which may be undone as of this writing depending both on the outcome of the 2012 elections and of a likely Supreme Court decision.

THE POLITICAL ECONOMY OF MEDICARE The politics of Medicare in America is the flip side of the politics of national health insurance. National health insurance always fails because our system disproportionately strengthens wellorganized minorities and local interests, and because it has granted disproportionate power to a sizable ideological faction that opposes both redistribution and strong national government. These same structural forces have distorted Medicare politics and administration, and they threaten to destroy its basic social-insurance structure. As noted above, it was only by virtue of an extraordinary landslide election that Medicare was ever enacted. Once Medicare was passed, the

Unequal by Design same old structural imperatives of American institutions took over. Medicare regularly draws the attention of the groups that are strongest in the Madisonian system: the wealthy, the geographically concentrated, and anti-government legislators in the South and West entrenched in power by seniority and the safe seats of a regional ideology. This is so for three reasons. First, Medicare is the major source of income for multiple health and health-related industries, and the exclusive source of income for others, all of which are located in somebody’s state or district (and most of whom are well represented in the District of Columbia). Second, the more than $400 billion Medicare spends annually is a large pot of government expenditure to distribute among states and congressional districts. Third, Medicare is always vulnerable as a program that transfers money from younger to older and, to a lesser extent, from high-income to low-income Americans. The recurrent interest in privatizing Medicare’s benefits and administration do not derive from any demonstrable evidence that privatization would solve Medicare’s problems. Furthermore, privatization is overwhelmingly unpopular with Medicare beneficiaries. But it draws strength from the ideological and structural forces arrayed against Medicare’s redistributive character, and from distaste for the annual legislative fracas characteristic of special-interest and distributive politics. Medicare made it past America’s political design in 1965 only because of an electoral/legislative anomaly, but America’s political structure may, in the end, undo the work of that anomalous Congress.

Special-Interest Politics The same basic elements of the Madisonian system—separation of powers, political localism, weak political parties—that combine to frustrate broad social reforms like national health insurance also work to produce a political system that revolves around the allocation and distribution of specific benefits to specific legislative districts, the enactment of generally inadequately enforced regulatory systems to respond to unavoidable public concerns, and deference to interests capable of making significant campaign contributions in a political system based on limited party loyalties and local television markets, in which candidates are eventually on their own. In the Madisonian game of factional conflict over government benefits—that is, special-interest politics—Medicare’s annual $400 billion is a major prize or, more precisely, an

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enormous aggregation of small prizes. Medicare is the largest single source of income for the nation’s hospitals, physicians, home-care agencies, clinical laboratories, durable medical equipment suppliers, drug companies, and physical and occupational therapists, among others. Each of those groups works energetically to protect and advance its interests through the political process (Levitt et al., 1998). The health care industry is so big, however, and Medicare is so complicated, that it is necessary to understand some of the subtleties of the process in order to understand the political dynamics of Medicare and the ways in which those dynamics affect broader public-policy concerns. A few examples help to illustrate that point. Medicare accounts for as much as 40% of the income of the average U.S. hospital, but the hospital community is increasingly heterogeneous and internally fractious (Levitt et al., 1998). Medicare spends so much money on hospitals—more than half of its total outlays, if all hospital-delivered services are included—that at the highest levels of aggregation, hospital politics becomes indistinguishable from macro-budgetary politics, to the disadvantage of the hospital community. But most politics around Medicare occurs at levels far lower than that of the hospital community as a whole. The Balanced Budget Act of 1997, for example, contained no fewer than half a dozen provisions increasing reimbursement for specific hospitals or, at most, for a mere handful; the Balanced Budget Refinement Act of 1999 contained a dozen more such provisions. A large part of the administrative resources of the Center for Medicare and Medicaid Services (CMS), which administers Medicare, are devoted to evaluating claims on behalf of particular hospitals, or small groups of hospitals, advanced by individual members of Congress. With every passing year, the prospective payment system (PPS), which Medicare employs to pay for acute inpatient hospitalizations, and which was touted by some of its initiators as a model of uniform, “scientific” national policy, looks less like a theoretical exercise in health economics and more like the loopholeinfested Internal Revenue Code. More broadly, PPS increasingly tilts toward particular classes of hospitals, especially teaching hospitals and those in rural communities. Teaching hospitals benefit from the American love of medical technology and the popular fascination with science, especially medical science. And while it is true that rural hospitals play an

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important role in their communities and are especially dependent on Medicare as a share of their total revenues, the basic Madisonian formula for representation in the U.S. Senate does them no harm, either. Hospitals, doctors, HMOs, and Medicare contractors (that is, the insurance companies that provide Medicare with most of the administrative services necessary to operate its fee-for-service benefits) all have a major stake in Medicare policy and act as expected in the political system. Yet there are other service providers that essentially serve only Medicare customers. Literally thousands of home-health agencies, durable medical equipment suppliers, and firms that contract for therapy services, as the most notable examples, have been formed to do business with Medicare—a veritable Medicare–Industrial Complex. Individual entrepreneurs are the large majority of suppliers in most of these industries, although large, national publicly traded firms have become more important as a buoyant stock market has made equity capital easy to raise. Nothing is more frustrating to Medicare administrators, nor more puzzling to outside observers, than the fact that the payment methods—and even levels of payment—are written into law, often at prices higher than a big buyer such as Medicare could obtain in the marketplace. Efforts to make Medicare a more “prudent purchaser” have been supported by administrations of both political parties for two decades. But Medicare suppliers occupy a political territory of classic dimensions in American political science: narrowly focused interest groups with an enormous specific stake in issues about which the rest of the body politic could really care less, seeking benefits of enormous importance to themselves that are almost invisible in the total aggregate of the federal budget. They thus have succeeded in resisting almost every effort to improve Medicare’s purchasing by enlisting key members of Congress to defend their constituents from the depredations of the “big bad federal bureaucracy.” Medicare suppliers thus have built on the earlier successes of the more visible providers, such as hospitals and doctors, in turning the program from one that provides a legal entitlement to beneficiaries to one that provides a de facto political entitlement to providers. Part of that transformation dates to the attitudes of program administrators from the early days of Medicare, when officials were concerned (astonishingly enough, in retrospect) that not enough providers would be willing

to participate in the program; part of it stems from some truly misguided decisions by the federal judiciary over the years. Even though their only purpose is to sell services to a government program, and even though the government and its beneficiaries might be better off if there were fewer, larger, more efficient, and cheaper suppliers, these providers have acquired a kind of legitimacy in the political process that turns our conventional notions of the boundary between the public and private sectors upside down. The analogy to defense contractors is not totally far-fetched. There are plenty of $400 toilet seats in the Medicare program. Medicare cannot deliver services to its beneficiaries without providers, and providers are major sources of employment, political activity, and campaign contributions in every congressional district in the nation. Although the average home-care agency is very much smaller than the average military base, efforts to close either one produce the same kinds of congressional responses.

Distributive Politics Medicare spends money in just about every city and town in the United States. With the federal government reducing almost every other form of domestic spending, the geographic distribution of Medicare dollars has become a matter of increasing attention. A dramatic example was the treatment of payment rates for capitated plans in the 1997 Balanced Budget Act. Congress sought to respond to the complaints of rural representatives that the adjusted average per-capita cost (AAPCC) formula, based as it was on actual Medicare costs in specific counties, penalized lower-cost (and therefore presumably more virtuous) rural counties as well as such low-cost metropolitan areas as the Twin Cities and Portland, Oregon. At the same time, however, Congress responded to the concerns of teaching hospitals by carving out costs associated with Medicare’s teaching hospital payments from capitated rates, in order to pay the money directly to the hospitals. Doing so by itself, however, would have produced significant rate reductions for HMOs in major urban communities on both coasts, so Congress also established a hold-harmless provision in which each county was guaranteed a rate increase of at least 2% per year. The result was, in essence, a series of simultaneous equations that could not be solved. The Balanced Budget Act of 1997 has produced the sought-after effect of substantial rate increases in rural counties. It has also produced modest rate

Unequal by Design increases in high-cost urban areas, but the Twin Cities and Portland have received almost no benefit. There is no platonically ideal formula for allocating capitated payments across communities, especially since the dynamics of individual markets vary on a number of dimensions, only one of which is price. In fact, a strong case can be made against formula-driven administered prices as a fundamentally unsound way of setting capitated rates to begin with, a position that CMS has long advanced in the face of considerable resistance from the HMO industry and Congress. But the health-policy debate increasingly consists of highsounding arguments cloaking relatively narrow, traditional regional and local issues.

Redistributive Politics The Madisonian system not only shapes Medicare’s normal politics, it also increasingly threatens Medicare’s redistributive structure. Through an insurance mechanism, Medicare provides a set of service benefits to many people who otherwise would be unable to afford or obtain adequate access to health services. It has revolutionized access to health care for the elderly and the disabled and thus has contributed to the demonstrable improvements in health status and life expectancy of older Americans over the past 30 years. Medicare also has been an extremely powerful weapon for reducing poverty among the elderly and disabled. Medicare does so at least in part by transferring income from workers to retired or disabled former workers. On average, each working-age person contributes something around $2,500 a year to provide about $9,000 in benefits to each Medicare beneficiary. (The astute observer may interject at this point that Medicare funds are not in fact actually transferred to Medicare beneficiaries but rather to providers that give them services—or as the more cynically astute observers might argue in the case of some managed-care plans and some beneficiaries, providers that do not give them services. Certainly, unlike other Social Security programs, Medicare rarely puts cash into the hands of those who are described as its beneficiaries. But they benefit nonetheless.) Although hardly anyone will say it out loud, this transfer lies not far below the surface of many of the most bitter and contentious political fights about Medicare, especially in the past 5 years. 1965 Reconsidered After roughly 30 years in which the miracle of 1965 managed to surmount it, the Madisonian

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political system has spent the last 15 years reasserting its discomfort with any governmental action that redistributes wealth from the betteroff to the less well-off. There have been repeated efforts to transform the program from a defined benefit to a defined contribution (as proposed by the Republican Paul Ryan budget in 2011, in the Breaux-Frist legislation of the early 2000s, and, before that, by Republicans and conservative Democrats on the Bipartisan Commission on the Future of Medicare); to encourage medical savings accounts (MSAs, popular with House Republican leadership and resoundingly unpopular with Medicare beneficiaries); and to impose higher premiums on low- and middle-income beneficiaries. Indeed, the insistence that Medicare and Social Security face a “crisis” because of aging baby boomers is rooted in visceral hostility to redistributive policy in all of its forms; the babyboomer crisis disappears if the possibility of increased taxes on the more affluent is allowed into the discussion. There is no question, from an economic point of view, that this society could afford to support Medicare indefinitely, indeed to support a more generous Medicare program than the one we now have. The question is whether, politically, we want to do so. That question comes down to the extent of our willingness to require the better-off to subsidize the less well-off. Nowhere is the redistributive dimension of Medicare politics more apparent than in the argument from urgency made by some proponents of radical change. They claim that it is imperative to do something soon, before a much larger share of the electorate is made up of Medicare beneficiaries or people close to eligibility age, because at that point the politics of the issue presumably would change. In fact, the voting behavior of Medicare beneficiaries and their responses to public opinion polls do not differ substantially from those of 40- or 50-year-olds regarding Medicare policies. But the concerns of Medicare’s critics in this regard mirror, almost precisely, the concerns expressed by Madison and his fellow Federalists when they were successfully campaigning for ratification of the Constitution they had drafted. Arguments for privatization of Medicare do not rest on these exaggerated threats alone. They also draw extensively on the distaste of many policy analysts for the interest-group and distributive dimensions of Medicare’s political economy described above. The tendency of politicians and

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the interests to which they respond to behave as politicians and interest groups generally do is advanced as a rationale for moving responsibility for Medicare’s management out of the public sector altogether through some form of defined-contribution plan. Detractors argue that more rational or more effective administration of Medicare is virtually impossible unless it can be disentangled from the political process. This argument, of course, is most frequently made by those parties who, the rest of the time, are most busily engaged in interest-group and distributive polities. “Stop me before I sin again” might be the practical translation of this position.

S TAT E - A D M I N I S T E R E D H E A LT H I N S U R A N C E An underappreciated aspect of the Affordable Care Act was its significant reliance on an expansion of Medicaid benefits to all adults with income of under 138% of the federal poverty level. The Medicaid Model—benefits targeted at the poor or near-poor, administered by the states, and paid for by both state and the federal governments— has dominated public health insurance in the United States for 40 years, with the obvious and important exception of Medicare (and with inroads into Medicare as well). This structure is a perennially effective legislative sell, but it also consistently falls short of its main legislative objectives. Enrollment, access to health care, or both are disappointing. (A few leading states that had often pioneered similar programs before participating in the federal equivalent are exceptions.) The states generally fail to enroll a substantial portion of the groups that are eligible under their own existing rules, and those rules themselves often exclude many who belong to the population ostensibly targeted by the authorizing federal legislation. These failures are most notable in the high proportion of the poor not eligible for or enrolled in Medicaid; the same pathology took hold in the early years of the Children’s Health Insurance Program (CHIP) for the near-poor. The early problems with CHIP should have come as no surprise, and they ought to serve as a warning regarding state implementation of Medicaid expansion in the Affordable Care Act. Under-enrollment, under-funding, and operational problems have plagued a series of statefederal health insurance programs, beginning with the Kerr-Mills program for the elderly that preceded Medicare in the early 1960s and continuing

with (most notably) the original Medicaid program, the large Medicaid expansions of the late 1980s, the “Medicare Buy-in” (QMB/SLMB) program, CHIP, and in a variety of state-initiated health-insurance programs and “drug assistance” programs aimed at helping the elderly pay for prescription drugs. The contrast with Medicare is striking. Medicare Part B (which covers physician expenses) was and is a voluntary program, yet it enrolled 93% of the nation’s senior citizens—17.7 million people—in its first year (Marmor, 2000, 87–88). Both enrollment levels and access to health care have been an overwhelming success story in Medicare; they have been perennial problems in the state–federal programs. Why the difference? Medicare differs from the Medicaid model in three relevant ways: it is administered by the federal government, its policies are part of national rather than state politics, and it covers all seniors rather than only the poor or near-poor. The problem with Medicaid and its policy cousins may arise from means-testing, from the lack of state administrative capacity, or from the lack of political incentives for states to advance these programs aggressively. The states may fall short because governors and state legislators find it politically unwise to spend taxpayer money on health insurance and especially health insurance for the poor, even when the federal government is picking up most of the tab. Or, it may be hard to enroll the working poor in a nonuniversal program, perhaps especially so for small state administrations.

State-Run and Means-Tested: A Brief History The history of state-administered, means-tested health programs is a long saga of recurring troubles. It begins in 1960 when renewed political pressure for national health insurance for the elderly had been building for 2 years (Marmor, 2000, 27–30). The Kerr-Mills bill of 1960 was a rear-guard effort by conservative Democrats and Republicans to address that pressure without substantially increasing the scope of national government. It provided medical care to the indigent elderly using what is now Medicaid’s structure: federal standards set a comprehensive package of benefits for the elderly poor (or those elderly whose medical expenses rendered them effectively poor), while the specific eligibility standards, coverage, and provider reimbursement levels were set by the states. States paid for the

Unequal by Design program with a federal match ranging from 50% to 80%, depending on state income levels. Kerr-Mills was widely regarded as a near-total disappointment. In its 5 years of existence (before it was replaced by Medicare), only five states established substantial programs, and they received almost 90% of the total funds. Eighteen states had no program in place at all. In 1965, at the same time that Medicare largely supplanted the Kerr-Mills program for the elderly, Kerr-Mills was expanded into the Medicaid program both to continue to provide non-Medicare health benefits to the indigent elderly and to provide health care coverage for two other poor populations—single-parent families and the disabled. These three populations were already eligible in principle for cash welfare payments, and Medicaid enrollment was largely a program for welfare beneficiaries until the late 1980s. The states had the option of making significant exceptions: states could enroll families poor enough for welfare but with two parents (“Ribicoff children”) and individuals with incomes above AFDC levels but with significant medical expenses that effectively brought them below the threshold (“medically needy”). Finally, a provision of the legislation required states to move towards comprehensive medical coverage of Medicaid enrollees. In short, the states were mandated to enroll their welfare population in Medicaid, although they had a substantial degree of latitude to set reimbursement rates and to expand eligibility beyond welfare. Medicaid was successful in important respects. Enrollment grew quickly, and there was immediate evidence that enrollees got more regular medical care (Davis & Schoen, 1978, 62–67; Rowland et al., 1999). But Medicaid policy in the states very quickly became dominated by cost concerns. Most states stinted on reimbursement, and many did not take up the options to enroll Ribicoff children or the medically needy despite federal money to defray most of the expense. Many Medicaid recipients continued to rely on the same charity-care facilities they had used before the program. Medicaid’s enactment coincided with a boom in enrollment in the older AFDC program, which in turn drove unanticipated increases in Medicaid enrollment. Medicaid’s rolls grew from 10 million people in 1967 to 24 million in 1976, paralleling similar growth in AFDC (Davis & Schoen, 1978, 56). Medicaid’s expenses grew even faster, from $3.5 billion to $14 billion, as a result of the enrollment boom as well as rapid cost inflation in

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hospitals and nursing homes (Davis & Schoen, 1978, 56–62; Klarman, 1974). The states reacted to this growth by cutting back on coverage, reimbursement, and enrollment. In the early 1970s, states imposed a variety of limits on coverage for hospitalizations and physician office visits, and these limits were especially draconian in the South. Levels of Medicaid reimbursement for primary care were (and continue to be) held substantially lower than prevailing rates in most states: for example, in 1997, the average state paid 43% of the amount paid by private insurers for normal childbirth (Gruber et al., 1999). The result of limited reimbursement was limited access to mainstream providers, precisely the situation Medicaid was meant to resolve. Many Medicaid patients therefore continued to utilize traditional forms of charity care—clinics and/or safety net or public hospitals rather than private doctors’ offices. And even though enrollment grew explosively, the states kept Medicaid as a program for welfare recipients only, despite the hopes of its sponsors in 1965. Medicaid did not enroll most poor children in most states, and the legislative requirement that states move towards comprehensive medical coverage for those who were enrolled was soon dropped (Davis, 1975, 48–49). While Medicaid budgets grew dramatically in the late 1960s and early 1970s, this was in large part because of dramatic increases in AFDC enrollment, as the number of poor single-parent families exploded at the same time that AFDC enrollment rates went up from 60% to 90% among those who were eligible (Davis & Schoen, 1978, 59). The dominance of cost concerns in the Medicaid program became glaring with the slow implementation of the Early and Periodic Screening, Diagnosis and Treatment program (EPSDT), passed by Congress in 1967. It provided Medicaid children coverage for well-child visits and preventive care. Both the federal government, which failed to write regulations until 1971, and the states, which took years to implement the program, sought to avoid the relatively modest costs involved. A Democratic-majority Congress continued to push the program, but it took until 1976 for even a million children to get screening out of 12 million who were eligible (Davis & Schoen, 1978, 84). The only portion of Medicaid in which all states enthusiastically participated immediately after it was passed—Medicaid assumption of Medicare Part B premiums—was a net cost reduction for the states, saving the states the costs of

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providing care themselves for the indigent elderly (Davis, 1975, 41). Just as Medicaid had boomed with AFDC enrollment in the late 1960s and early 1970s, it stagnated with the welfare rolls in the late 1970s and early 1980s, as states became increasingly stingy with both programs and as the federal government lowered eligibility requirements. Medicaid enrollment hit 22 million in 1975 and stayed at that level or below it for 12 years, until the federally mandated expansions of the late 1980s took effect, so that by 1987 only about 34% of the poor were covered by Medicaid (Morone, 1990). At the same time, Medicare’s expenses and enrollment both continued to escalate rapidly. The first substantial expansions to Medicaid eligibility began in the mid-1980s, mandating coverage of AFDC-eligible pregnant women and giving states a series of options to broaden eligibility to poor children, pregnant women, and seniors. As with optional eligibility expansions in the original 1965 legislation, most states were slow to take advantage. A series of Medicaid expansions between 1984 and 1990 followed a repeated pattern: Congress authorized a series of optional coverage expansions for poor and near-poor women and children; most states failed to take advantage of the options; Congress then made the coverage mandatory. Coverage of poor pregnant women and infants became mandatory in 1988, and mandatory Medicaid eligibility was expanded to a variety of poor or near-poor women, children, and seniors in 1989 and 1990. At this point most states did become more aggressive in their eligibility rules for pregnant women and infants, with many increasing eligibility beyond the federally mandated income maximum of 133% of poverty. And these expansions had a substantial impact: enrollment grew from 23 million in 1988 to 36 million in 1996. But the Medicaid expansions also introduced a massive new failure in the program. Millions of pregnant women and children were eligible for benefits but not enrolled. In 1996 only 58% of the uninsured children eligible for Medicaid under the expanded eligibility used it, while 77% of those children eligible for Medicaid under pre-expansion rules were enrolled (the latter figure is in line with other means-tested programs). This meant that 4.7 million children, or 40% of all uninsured children, were eligible for free health coverage but were not taking advantage of it. The problem of under-enrollment spread to Medicaid’s original welfare-enrollment base with

the abolition of the AFDC entitlement in 1997. With welfare reform causing millions of women to leave the welfare rolls that had previously provided an automatic link with Medicaid, many women lost Medicaid coverage for themselves and their children despite their continued theoretical entitlement. Welfare-related Medicaid enrollment in the 21 states with available data fell almost 40%, or 1.6 million, from June 1997 to December 1999 (Kaiser Commission, 2000). According to the Census Bureau, the number of children enrolled in Medicaid dropped about 400,000 between 1997 and 1998 (Alliance for Health Reform, 2000). A study concluded that a large majority of women and children who lost Medicaid coverage after leaving welfare remained uninsured rather than receiving private health insurance (Garrett & Holahan, 2000). Continuing the efforts to cover children that began in the mid-1980s, a bipartisan majority created the Children’s Health Insurance Program in 1997, sending money to states to cover children from families with incomes up to 200% of poverty or higher. The program sought to provide more than $40 billion in federal matching funds over 10 years (Alliance for Health Reform, 2000). As of December 1998, 40 states (including the District of Columbia) had begun enrolling children in CHIP programs. But despite the CHIP legislation and earlier Medicaid expansions, 1998 Census Bureau data showed that the number of children lacking coverage grew substantially—from 9.8 million (13.8%) lacking coverage in 1995 to 11.1 million (15.4%) in 1998. As of 2001 2 million children were eligible but not enrolled in CHIP, in addition to the 4.7 million children who were eligible for Medicaid but not enrolled (Edmunds et al., 2000). For the program’s first 6 years, most states did not draw down their full funding allotments because of severe under-enrollment problems, even though states were given 3 years to use each fiscal year’s allocation to give them time to get programs up and running. The original legislation would have required states to forfeit their unspent funds to the states that had spent their allotments, although subsequent legislation partially reduced that penalty. SCHIP did not reach its original planned enrollment of 6.5 million until 2005. The QMB/SLMB or “Medicare Savings” program seeks to reduce or eliminate out-of-pocket Medicare costs for the low-income elderly. As with the other Medicaid expansions of the mid1980s, the program began as a voluntary state

Unequal by Design option, in which states could use their Medicaid program to pay Medicare cost-sharing fees for seniors whose incomes were low but above welfare eligibility levels (which for seniors means eligibility for the Supplementary Security Income program). And as with the other Medicaid expansions, voluntary state participation was minimal— only three states participated (Merrell et al., 1997). In 1988, the Medicare Buy-In Program became mandatory in the ill-fated Medicare Catastrophic Coverage Act (MCCA). Although the new costs to states from the QMB program were supposed to be more than fully offset by savings from Medicare expansions, those savings did not materialize beyond the first year because most of MCCA was repealed in 1989 (Moon et al., 1998). Medicare Buy-In was then expanded again to give more limited financial benefits to higher-income beneficiaries with the Specified Low-Income Beneficiary (SLMB) program in 1990 and Qualified Individuals (QI) program in 1997, again with the costs shared between the states and the federal government. These programs have been sharply limited by under-enrollment problems. Nationally, approximately 85% of QMB and SLMB eligibles (3.3 to 3.9 million people) were not receiving the Medicare Buy-In benefit in 1998 (Families USA, 1998; O’Brien & Rowland, 1999) and similar levels of under-enrollment were estimated in 2007 (Fox, 2008).4 Many states do not make even minimal efforts to keep track of potential eligibles: for many years, only a minority of states bothered to subscribe to data available monthly from the federal Center for Medicare and Medicaid Services (CMS) that identifies low-income individuals newly enrolled in Medicare (Nemore, 1999). The miniscule enrollment for the modest benefits allocated to seniors in the 1997 QI program (reimbursing low-income seniors for the 1997 Balanced Budget Act’s Medicare fee increases) is a particularly breathtaking example of the under-enrollment problem: at the end of 1998, the first year of the QI program, only 1% of the money set aside for this program had been used and only 3% of potential participants had been enrolled (Nemore, 1999). By the program’s 10th birthday in 2007, QI enrollment was still mired in the low six figures nationally (Fox, 2008). As the same time, state implementation of new data-sharing opportunities with the Medicare Part D Low-Income Subsidy program has lagged in most states. As a result, anticipated gains in Medicare Support Program enrollment failed to materialize (Fox, 2008).

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As of 2011, 17 states operate programs to cover some or all of prescription-drug expenses for the poor elderly. These programs are not on the Medicaid model, because they are not federally mandated—they are in the pre-Medicaid model of voluntary state health-insurance initiatives, the kind that have been repeatedly folded into state– federal partnerships. Despite the fact that they are voluntary state initiatives, they also have long manifested both the under-enrollment and the under-funding problems of other means-tested, state-run health-coverage programs, both before and after the creation of the Medicare drug benefit in 2006. These programs all have relatively generous income ceilings—between 150% and 250% of poverty—that would in principle incorporate a substantial minority of seniors (AARP Public Policy Institute, 1999). Yet in 2002 only three of these plans had enrollment of more than 100,000, those of Pennsylvania, New Jersey, and New York. Most of the programs are tiny, whether because of state government disinterest, the stigma of meanstested benefits for moderate-income seniors, or a combination of both. New York State projected enrollment of 475,000 (out of 1.4 million eligible seniors) when it created the Elderly Pharmaceutical Insurance Coverage program in 1986 (EPIC Advisory Committee, 1996). By 1996, only about 100,000 seniors had enrolled. Following eligibility expansions in 2001, New York’s EPIC program still enrolled fewer than 20% of estimated eligible persons. Even these voluntary state initiatives, then, have either withered on the vine or barely even sprouted.

Possible Causes There are two related problems that emerge from this history of state-administered, means-tested health coverage: under-funding and under-enrollment. While the first is clearly an issue of conscious state stinginess, it is not clear that under-enrollment results from state decisions as such, intentional or not. There are several plausible reasons that states do not enroll as many of the uninsured as they seemingly could. Nor is it clear that the federal government would be any more generous or effective in administering means-tested programs. Analysts have pointed to a variety of obstacles related to means-testing that link it to the underenrollment problem. One barrier to enrolling the working poor and near-poor is welfare stigma. Participants in the labor market and retirees are described as reluctant to participate in meanstested, “welfare” programs, and skeptical of the

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quality of care they will receive on “welfare insurance” (Alliance for Health Reform, 2000; O’Brien et al., 2000; Rowland, 1999; Serafini, 2000; Shaner, 1999). Indeed many working people may not even be aware that they or their children are eligible for public coverage: one study found that 6 out of 10 parents whose children qualify for CHIP or Medicaid do not believe the program applies to them, and that 82% of these parents said they would enroll their kids if they knew they qualified (Holloway, 2000). The cumbersome enrollment process associated with income and asset verification may also limit enrollment: lengthy asset tests, the necessity to provide citizenship and income verification, and the use of Medicaid applications in the CHIP and QMB programs may be keeping eligible individuals away from means-tested programs (Alliance for Health Reform, 2000). In contrast, Medicare enrolled virtually its entire target population in its first year of operation. Analysts who blame the enrollment failures on the inherent administrative requirements and psychological barriers of means-testing can point to the advantages Medicare had on both counts: the Social Security system allowed almost automatic Medicare enrollment, with only a nominal step required for Part B participation. Medicare, moreover, is conceptualized as an earned social insurance benefit. Under-enrollment has often been a problem for means-tested programs funded exclusively by the federal government, even programs with broad political support such as Head Start and the Women and Infant Children nutrition program (WIC). Means-tested programs must either enroll both the (often isolated) nonworking poor, now increasingly cut off from cash welfare, and the skeptical working poor. But if the difficulties of means-testing were overwhelming the good intentions of the states to enroll the eligible, operational differences between the states’ programs would not make much of a difference. And there is striking evidence that states can do a much better job on enrollment. Leaving aside Massachusetts’s achievement of near-universal coverage, Vermont, a relatively poor state, has achieved near-universal coverage for children and over 90% coverage for its whole population with means-tested public health insurance and effective marketing efforts. There are enormous variations between states on both eligibility rules and outreach efforts. They seem to defy the traditional liberal concern about rural, conservative states sometimes called the “Alabama problem.” Two of the most successful early

CHIP programs were in North Carolina and Georgia. Means-testing may well make enrollment significantly harder than it is in a universal program like Medicare. But operational differences clearly do matter in making means-tested programs a success. The problem of eligible but not enrolled is therefore also an issue of either lack of policy innovation or lack of political will. States are not doing as well as they might on enrollment, and they frequently focus predominantly on costs in their administration of meanstested health coverage. If governors and state legislators felt more was politically at stake, it is hard to believe they would not do better. But there is significant evidence that governors and legislators get little scrutiny in state elections for health care policy in general, and even less for enrolling and covering low-income people. While health care routinely appears in the top two or three issues in exit polling on national elections, it almost never does in state elections.5 State elections are dominated by the issues of education, crime, and, importantly, taxes. The centrality of the tax issue helps to explain a striking disparity in national versus state elections in the country as a whole and particularly in the northeastern states. Republicans have been able to retain a majority of the nation’s governorships for almost all of the past two decades. Even northeastern Democratic bastions such as New York, New Jersey, Pennsylvania, Rhode Island, and Connecticut have had long runs of Republican governors. Republicans at the state level can run on tax cuts without raising the specter of cuts to middleclass entitlements. It is especially telling that the only health care issue to get on the radar screen of elections in most states has been coverage mandates on the insurers that cover the middle class. There is evidence that means-tested health coverage can be politically stronger at the national level than it has been in the states. The costs of Medicaid expansion and CHIP are considerably higher for the federal government than for the states, yet the legislation passed with substantial Republican support at the national level (and, in contrast, has fallen short on enrollment in a number of states with Democratic governors). It may be that virtually any health issue gets more traction on the national stage than on the state level.

The Political Allure of Devolution Nevertheless, sending administrative power to the states is almost always appealing in American

Unequal by Design national health policy, and social policy generally. Whatever the merits of specific state-based programs, there is a more fundamental aspect of American political culture that drives the decentralizing tendency: the notion that state governments are closer to the people. None of the usual American exceptionalism suspects—rugged individualism, the American aversion to politics and government in general, mistrust of the able-bodied poor—provides a clear explanation for why it is more attractive for state bureaucracies to run means-tested programs than federal bureaucracies. Why should the American preference for health policies that are “mechanistic, self-enforcing, automatic solutions which might operate without further politics or even self-conscious deliberation at the political center” (Morone, 133: 1990) de-legitimize national government and exempt state government? The connection between American resistance to political conflict and direct government action on the one hand and devolution to states on the other has to do with the way Americans and the American media think about state governments as opposed to federal government. Small governing units seem clearly to be a legitimizer in and of themselves: the smaller the government, the less intimidating and foreign it seems as an institution. Indeed, debates over devolving social policy to the states, in their emphasis on the closeness of states to the people and the evils of Washington, seem to regard state government as not really government at all. This makes a certain amount of sense culturally. If most Americans were asked to name politicians or people in the government, how far down their list would they get before they got to their governor, never mind another state or local official? National government operates in the spotlight, the center of public life; state governments operate largely ignored, at the periphery.

CONCLUSIONS As with the passage of Medicare in 1965, the passage of the Affordable Care Act reflects a breakthrough driven by an anomalous legislative majority. Heightened partisan conflict can help crystallize substantive policy change when one party has a clear upper hand, but when popular support of the major parties is closely divided, the likelihood of substantive action falls dramatically. America’s major political parties appear to be in the process of becoming more like classic political parties in the European sense. The partisan realignment of much of the South (and, though

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much less noticed and, because of the smaller populations, less significant, most of New England as well), the increased importance of corporate and individual “soft money,” and the growing sophistication and success of the national party apparatuses in fund-raising and funds distribution, all tend to reinforce ideological homogeneity and party loyalty. Certainly, the two parties in Congress have rapidly become more ideologically unified, with both “Rockefeller Republicans” and “Blue Dog Democrats” becoming less and less numerous with every Congressional election. At the same time, the heightened clarity of party conflict, to the extent it is apparent to the public at all, appears not yet to have increased public interest or participation in the electoral contest. The structural obstacle course Madison laid out for redistribution and majoritarian government remains intact. But his goal of limiting populist factionalism through America’s sheer size and diversity seems increasingly overtaken by social and political change. In other words, for all the complexities and sophistication of Madison’s design, elections still matter. In fact, they may matter more in the future than they have in the past. For those whose personal or professional agendas involve a significant commitment to the reduction in inequities in access to health care, the implications could not be more clear.

Notes 1. The classic work on this subject is Robert Dahl’s A Preface to Democratic Theory (Dahl, 1956). See Federalist 10, 48, 49–51ff. (Federalist, 1961). 2. On the importance of state sovereignty to widely differing sides of the debate over the Constitutional convention, compare Federalist Papers, Nos. 17 and 45 (Federalist, 1961) and Banning, The Sacred Fire of Liberty (Banning, 1996) to Herbert Storing, ed., The Anti-Federalist (Storing, 1985). 3. Of the many analyses of the evolution of American political parties, this is the conclusion we find most accurate. 4. Because of the way many states report QMB enrollment, statistics on QMB lump together beneficiaries who are eligible for full Medicaid with those participating in the QMB program alone, making firm estimates difficult. Nevertheless, most analyses have placed QMB under-enrollment at or above 50% and SLMB under-enrollment at 80% or higher (Fox, 2008). 5. Exit polls routinely ask voters to rank their “top issues” in deciding their vote. In national elections, either health care or Medicare ranked as one of the top three issue in 1992–96 and a major issue in 1998: health care was third in 1992 and 1994 and sixth in 1998,

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while Medicare was second in 1996. In 13 available exit polls in state elections from 1994 to 1998, health care was not listed by voters as an issue in 10. It was fifth in California in 1994 and 1998 (with the latter score for a category called “Health care/HMOs”) and was tied for sixth in Texas in 1994.

References AARP Public Policy Institute (1999). State Pharmacy Assistance Programs. Alliance for Health Reform (2000). Health Coverage Update: Children’s Health Insurance. Banning, L. (1996). The Sacred Fire of Liberty: James Madison and the Founding of the Federal Republic. Cornell University Press. Commonwealth Fund (1999). U.S. Minority Health. Dahl, R. (1956). A Preface to Democratic Theory. University of Chicago Press. Davis, K. (1975). National Health Insurance. Brookings Institution. Davis, K., & C. Schoen (1978). Health and the War on Poverty. Brookings Institution. Edmunds, M., M. Teitelbaum, & C. Gleason (2000). All Over the Map: A Progress Report on the State Children’s Health Insurance Program. Children’s Defense Fund. EPIC Advisory Committee (1996). EPIC Evaluation Report to the Governor and Legislature. State of New York. Families USA Foundation (1998). Shortchanged: Billions Withheld From Medicare Beneficiaries. Federalist Papers (1961). Mentor Books. Fox, K. (2008). Impact of Medicare Part D on Medicare Savings Program Enrollment. Robert Wood Johnson Foundation. Garrett, B., & J. Holahan (2000). Health insurance after welfare. Health Affairs 19(1):175–184. Gruber, J., et. al. (1999). Physician fees and procedure intensity. Journal of Health Economics 18:473–490. Holloway, M. (2000). Expanding Health Insurance for Children. Robert Wood Johnson Foundation. Kaiser Commission on Medicaid and the Uninsured (1999). Health Coverage for Low-Income Children. Kaiser Commission on Medicaid and the Uninsured (2000). Medicaid Enrollment in 50 States.

Kaiser Family Foundation (2000). Uninsured in America, 2nd ed. Klarman, H. (1974). Major public initiatives in health care. In E. Ginzberg & R. Solow (eds.), The Great Society. Basic Books. Levitt, K.R., et al. (1998). National health spending trends in 1996. Health Affairs 17(1):35–51. Marmor, T. (2000). The Politics of Medicare, 2nd ed. Aldine de Gruyter. Merrell, K., D.C. Colby, & C. Hogan (1997). Medicare beneficiaries covered by Medicaid buy-in agreements. Health Affairs 16(1). Moon, M., N. Brennan, & M. Segal (1998). Options for aiding low-income Medicare beneficiaries. Inquiry 35:346–356. Morone, J. (1990). American political culture and the search for lessons from abroad. Journal of Health Politics, Policy and Law 15(1):128–143. Nemore, P.B. (1999). State Medicaid Buy-In Programs: Variations in Policy and Practice. Henry J. Kaiser Family Foundation. O’Brien, E., & D. Rowland (1999). Medicare and Medicaid for the Elderly and Disabled Poor. Kaiser Family Foundation. O’Brien, M.J., et al. (2000). State Experiences with Access Issues Under Children’s Health Insurance Expansions. The Commonwealth Fund. Rowland, D., et al. (1999). The key to the door: Medicaid’s role in improving health care for women and children. Annual Review of Public Health 20:403–426. Selden, T., et al. (1998). Medicaid’s problem children: eligible but not enrolled. Health Affairs 17(3):192–200. Serafini, M.W. (2000). Prescription drugs: the state experience. National Journal, October 7. Shaner, H. (1999). Dual Eligible Outreach and Enrollment: A View from the States. Health Care Financing Administration. Storing, H. (1985). The Anti-Federalist. University of Chicago Press. World Health Organization (2000). World Health Report, 2000: World Health Systems—Improving Performance, Chapter 2.

10 Justice of and Within Health Care Finance S T E P H E N R . L AT H A M

INTRODUCTION What should a just society do for its members who get sick? The question is different now than it was in, say, 1945. Medical science has advanced dramatically since then. Antibiotics, blood banking, dialysis, ventilators, organ transplants, chemotherapy, sophisticated imaging: all of these are post-war phenomena, at least in terms of their accessibility by large populations. Technological advance, however, has come at a (literal) price. Most people simply can’t afford, on their own, to pay out of pocket for the array of impressive and effective medical treatments that can help them. This means that any society’s commitment to maintaining even roughly equal levels of access to health care for its citizens entails a commitment to financial redistribution, both across income levels (because poor people can afford less than wealthy people) and across age cohorts (because the elderly will generally incur more health care expense than the young). Among countries that can afford it, the response, worldwide, has been to provide some sort of socially guaranteed financial support for medical care, though one that falls well short of guaranteeing full equality of access. Though the particular systems in different countries vary, it is undoubtedly true to state that every country of means has made some effort to ensure that its citizens will have access to health care, even if they cannot afford it—even while it also remains true that in every country of means, wealthy citizens can access better health care than poor citizens. If the United States is (in)famous in the healthpolicy world for doing the least for its citizens, that is because the United States has by far the largest percentage of uninsured citizens of any developed country. But even the United States has a Medicare program, which covers the majority of medical needs of the elderly; the Medicaid

program, which insures the poorest; CHiPs, which insures the poorest children; the Indian Health Service, which offers free care to many native Americans; and the Veterans Health Administration, the largest nationally owned and operated health service outside the U.K., which offers free care to veterans. In addition, the federal Emergency Medical Transfer and Active Labor Act requires all hospital emergency rooms to treat all patients who are in an emergent condition or in active labor, regardless of their ability to pay; and the Bankruptcy Act relieves thousands of U.S. citizens annually of their debts to health care providers. At the local level, tax-supported hospitals and clinics provide charity care to people who lack means, and regularly write off bills to customers who cannot pay. The U.S. also heavily subsidizes, through its tax law, the provision of health insurance as an employment benefit. Most insured Americans get their insurance from their employers, thanks in large part to that subsidy. In sum, every developed country in the world seems to regard the provision of medical care to its citizens as important enough to justify significant subsidization and redistribution through taxation. These empirical facts, though, need not imply any moral necessity for the provision of health care finance. That a situation obtains in many places does not imply that it should obtain. We need to inquire, therefore, whether justice requires the kind of widespread financial subsidization of health care expenses that we in fact find throughout the developed world. This chapter will proceed as follows: it will first lay out arguments in favor of social subsidization of health care grounded in the work of the leading theorist of justice, John Rawls. It will then consider libertarian and conservative objections to the Rawlsian arguments. Next it will briefly consider other, non-Rawlsian grounds for believing that social subsidization of health care is just.

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Having considered these arguments for the justice of subsidized health care finance schemes, the chapter will turn to consideration of some contemporary debates regarding justice within such schemes. These include two debates that apply to every sort of national health-insurance scheme: the question of the treatment of illegal immigrants within national plans, and the question of the proper approach to rationing for cost-control. A final debate, which applies only to one main kind of health-insurance scheme, is the predominantly American debate about the justice of the so-called “individual mandate,” which forces citizens to purchase health insurance.

THE JUSTICE OF H E A LT H C A R E F I N A N C E : R AW L S I A N T H E M E S We may begin our inquiry by attempting to ground a social obligation to finance health care in the most prominent contemporary theory of justice, that of John Rawls (Rawls, 1999).1 The appearance, in the early 1970s, of Rawls’ A Theory of Justice gave rise to a late-20th-century renaissance in political theory and ethics, and certain of his well-known essays had considerable influence on developments within bioethics—notably the evolution, over time, of Beauchamp and Childress’s view of the origins of their famous principles of bioethics (Beauchamp & Childress, 2009). It is unsurprising, then, that some of the best (and best-known) work on justice and health care claims to be Rawlsian (e.g., Daniels, 1985; Korobkin, 1998; Pogge, 1989, 2002)—even though Rawls’s own theory did not deal directly with the justice of health care finance. Rawls’s is a “social contract” theory in the tradition of Hobbes, Locke, and Rousseau. Like those classical political theorists, Rawls asks us to imagine principles of justice being established by agreement among parties in a pre-social “state of nature,” his version of which he calls the “original position.” Rawls’s great innovation is to ask us to imagine that the parties to our formative social contract enter into their bargain from behind what he calls a “veil of ignorance.” While the parties retain general awareness that people all have different natural endowments, different values, and different conceptions of the good, they are temporarily stripped of any knowledge about themselves— that is, about the natural endowments or disadvantages they happen to possess, or about what their own conception of the good actually is.

Parties who bargain from behind the veil of ignorance are no longer capable of pure self-interested bargaining. Their focus is necessarily shifted toward the overall fairness of the outcome of the social bargain. Each of the parties wants to create social institutions whose operations will satisfy them when the veil is lifted and they find out again who they are. To put the matter concretely, the parties must agree upon rules for the basic structure of society that would be equally acceptable regardless of whether they turn out to be male or female, weak or strong, religious or irreligious, a member of an ethnic minority or of a majority. Rawls argues that, because of their radical uncertainty about their own personal endowments and commitments, persons behind the veil of ignorance will choose social rules that make the position of the least-advantaged person in society as good as possible; after all, each of them could turn out to be that very person when the veil is lifted. Rawls concludes that the parties in the original position will agree upon two principles of justice. The first—a principle of liberty— guarantees equal and adequate basic rights and liberties to all. The second places limits on social and economic inequalities. Such inequalities can be tolerated only if they satisfy two conditions: first, they must be “attached to positions and offices open to all under conditions of fair equality of opportunity”; and second, “they are to be to the greatest benefit of the least advantaged members of society.” The “fair equality of opportunity” condition rules out such institutions as hereditary monarchy, the caste system, or systems that deny jobs or offices to persons because of their gender, race, religion, and the like. The second condition (known as the “difference principle”) permits only those social and economic inequalities that benefit the least-advantaged in society. It would permit, for example, higher incomes for physicians than for day laborers, if attracting talented people to medicine and rewarding them well for their training would benefit the least-well-off; but it would, importantly, cap that income difference at the point where the inequality no longer served to improve the lives of the least-advantaged. Rawls himself did not use his two principles to establish any right to publicly financed health care. It was instead the philosopher Norman Daniels who first established a place for health care within Rawls’s framework. Perhaps surprisingly, Daniels (1985) anchored a right to health care not in the “difference principle,” which justifies inequalities

Justice of and Within Health Care Finance in terms of their benefits to the least-well-off, but in the principle of “fair equality of opportunity.” Daniels pointed out that the sickly are unable efficiently to pursue society’s various positions and offices. Health insurance is necessary in a just society because it helps secure the fair equality of opportunity. A just society’s health-insurance program should aim, first, at restoring people to what Daniels terms the “normal opportunity range.” Where that cannot be achieved, health coverage should compensate those with diminished opportunities. Daniels’s critics have worried that his view commits governments to providing an exorbitant amount of health care; some have complained that it does not address the problem of the “bottomless pit”—the person whose health problems require a tremendous investment of resources for little gain. Others have claimed that Daniels’s criteria of “normal human function” and “normal range of opportunity” could be used to ration care away from the elderly, since declining levels of function are normal in old age, and the elderly have already enjoyed their fair share of opportunity. Still others fault Daniels’s theory for failing to prioritize among scarce health resources. Daniels has responded to these criticisms (see, e.g., Daniels, Kennedy, & Kawachi, 2000; Daniels & Sabin, 2002) and in recent years has modified his own position, arguing that because much of ill health is in fact caused by the physical impact of injustice in society, the real-life instantiation of Rawlsian justice would improve population health extensively and independently of health care provision (Daniels, 2008). Another problem with Daniels’s position, though, is that its primary motive for endorsing social financing of health care costs—the desire to establish a regime with fair equality of opportunity—seems strangely removed from our ordinary experience of illness, and our ordinary fears about needing medical care we cannot afford. When we think about why we might want health insurance, we do not tend to think that it is because our ability to access health care at a reasonable cost will level the playing field and suit us for fair social competition. We want access to health care because being sick is inconvenient, uncomfortable, and sometimes scary. It interferes with our plans and makes us a burden to others. And we want social health insurance of some kind because it is frightening not to be able to afford the health care that we or our family members might need, and crushing to have to face impoverishment to pay for necessary medical care.

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Perhaps, rather than trying to fit our desire for health insurance into Rawls’s full-blown framework of principles, we can simply imagine an application of Rawls’s “veil of ignorance” methodology directly to the question whether a just society should insure its members’ health. (This is the approach taken by Korobkin.) The idea is to use the Rawlsian machinery—divorced from the rest of Rawlsian theory—to justify social health care finance directly. Would we not agree—not yet knowing who we are—that some form of social subsidy should be enacted to ensure that we could afford adequate health care, and that obtaining the health care we need would not be financially ruinous to us? Particularly when the parties behind the veil reflected that ill health can befall anyone at any time, and that ill health is almost guaranteed to befall each of us at some time, it seems difficult to imagine their not agreeing to some scheme of redistributional social health care finance.

J U S T I C E O F H E A LT H C A R E F I N A N C E : L I B E R TA R I A N A N D C O N S E RVAT I V E ARGUMENTS Against these arguments, some political theorists will contend that in a just society, government should never use its taxing power to fund the provision of health care to those who cannot afford it. Any such taxing scheme would inevitably be redistributional, even if only because some people will need more expensive care than others. Libertarians such as Robert Nozick (1974) have argued that compulsory redistributive taxation— the taking of some people’s money in order to give it to others—amounts to forced labor, and is morally impermissible. Moral arguments against tax-funded health care are often bolstered by economic arguments about the inefficiency of government service programs. First, any redistributive taxation results in a certain amount of loss to overall economic productivity; the anticipated “deadweight loss” varies with different methods and levels of taxation. Next, because they are not subject to the discipline of the competitive marketplace, government service programs are at risk of becoming lazy, bloated, and comparatively unresponsive to their users’ needs. They can also be captured by special-interest groups who use their influence to subvert the programs’ missions or to divert their funds. Finally, economists worry that government subsidization causes wasteful overuse of

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services by consumers who do not bear their full costs. There is strong support for each of these claims in the economic and health-services literature; the empirical argument is not about whether these problems exist, but about their magnitude. Those who oppose government-funded healthcare programs do not necessarily oppose the provision of health care to the sick. They insist only that health care would be better provided by the market or through charity. Market and charitable transactions are voluntary on both sides, so neither burdens property rights; the outcome of a series of voluntary transactions through which people trade or dispose of their property will be presumptively just, and in an efficient market will also be Pareto-optimal. Unlike forced governmental redistributions, market and charitable transactions increase the utility of the transacting parties. (Otherwise, they would not choose to enter into them.) In addition, competitive markets— including the market for charitable donations— are efficient in that they keep costs down, encourage innovation, and allocate scarce social resources to those within the market who value them most. Thus economic theory supports libertarian principle. The most obvious trouble with these arguments is that, given current costs of, and demand for, health care, even an efficient combination of markets and charity cannot hope to supply health care to all of those who need it. Market solutions do not provide anything for those who are too poor to enter the market. And modern health care is very, very expensive: only a relentless optimist (like Epstein, 1997) can believe that private charity could cover the costs of health care for the poor, if government did not. This leaves us facing a stark conflict of values. Either we must permit some citizens to suffer and die from treatable illnesses (or to spend themselves into poverty or bankruptcy in order to purchase treatment), or we must undermine liberty and property rights by using taxes to force a redistribution of resources toward the sick poor. Redistributive taxation need not only be justified by reference to the good the money can do once the government has its hands on it. Another argument is available to undercut the notion of individual property rights on which those who object to redistributive taxation often rely. How strong, after all, is our moral claim to our own wealth? A political tradition going back at least to John Locke holds that each of us has an absolute moral right of self-ownership, and therefore also

an absolute moral right to the fruits of our bodily labor. But, as John Rawls argued, wealth and property are never just the fruits of our own labor (Rawls, 1999). Most people’s wealth is not their own product solely, but the product of a great deal of social cooperation. Clint Eastwood, for example, is a fine actor and film-maker, talented and hard-working on both sides of the camera. But it is also true that he did not acquire his rugged good looks or his basic physical and mental capacities through merit, but through brute luck; and that his ability to earn money by exploiting his looks and talent was deeply contingent upon a large number of background societal conditions. Without television, for example, he could never have reached his early audiences. The social unrest of the 1960s contributed to the success of his Dirty Harry films; and his more recent independent films would not have brought him wealth had the old Hollywood studio system not declined, or had he not been able to partner with fine actors, producers, and technicians. In short, because our earning ability is always at least partially socially created, our wealth is never truly just our own. It is therefore not outrageous for society to make some claim upon it. Another objection to government-funded health care is tied to concerns about the government’s inability to specify the content of any uniform health plan, without offending the core beliefs of at least some of its citizens. Tristram Engelhardt has advanced this argument forcefully (Engelhardt, 1999). Because decisions about the content of a health plan implicate people’s deepest beliefs about birth, reproduction, and death, and because these beliefs differ significantly, Engelhardt argues that no government-funded health plan can adequately respect the core moral beliefs of all the citizens it purports to serve. No government can properly spend tax revenues on medical procedures—abortion, in vitro fertilization, assisted suicide, even blood transfusion— that many of its taxpayers sincerely find abhorrent. The supposed evil of redistributive taxation is here compounded by the fact that the funds are used to commit what some taxpayers regard as moral wrongs. This form of argument was quite visible in the debate accompanying the initial passage of President Obama’s health-insurance reform bill. The bill nearly died because certain of its opponents alleged that the federal scheme for subsidization of poor people’s insurance purchases would, at least indirectly, result in tax money flowing to

Justice of and Within Health Care Finance insurance companies that offer policies that cover abortions. The trouble with the Engelhardt argument is that it proves too much. Consider, for example, the undoubted fact that curricular reform implicates people’s deep moral beliefs about what children should be taught, and when; and that these beliefs differ significantly. It would seem to follow that governments cannot legitimately create public schools or universities. Consider, too, the fact that we disagree among ourselves about what sorts of products we should make and consume, and how and to whom those products should be marketed. Some of these disagreements are sharp and profound, and these are not confined to debates about guns or porn or video games, but also about the social effects of advertising imagery and the kinds of foods and music and books to which people of different ages should have access. It would seem to follow, on Engelhardt’s logic, that large multinational corporations are on shaky moral footing, since it is nearly impossible that such firms are not using the time and talents of some of their employees to promote products, or to use product-promotion techniques, of which others of their employees disapprove morally. In short, if internal moral disagreement about the conduct of a shared enterprise is enough to justify preventing that shared enterprise from proceeding, then most shared enterprises, including many very productive ones, should be shut down. In fact, human beings can cooperate without agreeing on everything; they can even cooperate while disagreeing about the things that are most important to them, like religion, culture, and morality. If a nation of immigrants with different religious and cultural beliefs can live together in peace, can they not manage to pool their resources to fund health security for all? To do so may require that they tolerate and even minimally support practices they find abhorrent; but this is a requirement—indeed, a core requirement—for membership in almost any large, modern enterprise, and particularly for citizenship in any diverse democracy. As we have seen, the pure anti-government arguments have not stood up against liberal arguments in favor of governmental redistribution. Every developed country engages in redistributive taxation to finance health care. This political reality notwithstanding, the anti- government arguments about forced redistribution, moral non-neutrality, and inefficiency still appear in

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debates about justice and health care finance. Thus we see conservatives promoting tax- preferred, individually owned medical savings accounts because these supply insurance against medical catastrophe without redistribution. We see libertarians arguing for voucher systems that would allow citizens to choose from among private health plans that could compete on price as well as on health-plan content and ideology. Both groups argue for citizens’ rights to “opt out” of the national health plan if they can afford to, and against public funding of controversial medical procedures such as abortion and artificial reproduction. Those who urge that government confine itself to regulating and managing private health-service providers rather than providing those services directly raise the specters of government inefficiency and interest-group capture.

J U S T I C E O F H E A LT H C A R E F I N A N C E : N O N - R AW L S I A N A P P ROAC H E S While Rawlsian arguments are the most prominent, theorists have offered a number of other plausible justifications for the public financing of health care. This section offers a brief account of two of the most important: first, the utilitarian approach to health care finance, and next, the “capabilities” approach pioneered by Amartya Sen and Martha Nussbaum. Utilitarians hold that morally obligatory actions are those that produce the greatest net gains in welfare for all the people they affect. “Act utilitarians” believe we should choose among individual actions by evaluating their welfare consequences, while “rule utilitarians” concentrate on the importance of our adopting those rules whose adoption will tend generally to maximize overall welfare. Utilitarians of either stripe can justify redistributive taxation whenever the loss of welfare to those who are taxed is more than offset by the welfare gains of those on whom the money is spent. Utilitarianism is the favored operational ethic for policymakers—particularly those who have to deal with fixed budgets. The idea that we are morally obliged to spend our limited resources in ways that do the most good is intuitively appealing. There are, however, some serious problems with using utilitarian theory to discuss the justice of health care finance. Because utilitarians care primarily about welfare, they have no reason to regard health care as “special,” or as marking out its own sphere for policy consideration. It is true

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that health care affects welfare, but so do myriad other things. For example, a utilitarian would have no problem with eliminating health coverage for the elderly if more welfare could be produced by spending the money on noise reduction or computer access or public art. Next, utilitarian theory is vulnerable to the notorious problem of our inability reliably to compare welfare across persons. Does spending a thousand dollars on pain relief for cancer victims generate more or less welfare than spending that amount on wheelchairs for ALS patients? Utilitarian theorists need to be able to answer such questions, but no objective answer seems possible. Finally, utilitarianism considers only the overall social welfare that flows from a particular course of action, and not the patterns in which welfare gains or losses fall upon particular persons. It may therefore justify serious harms to small groups for the sake of securing very small welfare gains to each member of a large group. A utilitarian could thus justify cutting funds for expensive life-saving emergency care for a few in favor of providing free dental floss to millions. Another rival to Rawls has achieved particular importance within the public-health debate: the “capabilities approach” to justice advanced by economist/philosopher Amartya Sen (1999, 2009) and expanded upon by the philosopher Martha Nussbaum (2000, 2006). Sen originally developed the capabilities approach as a method for evaluating development programs. His aim was to create an instrument that would allow policymakers to focus on the real human impact of development, rather than on abstract economic measures of progress such as income or productive output. Such measures may improve without any real improvement in people’s quality of life. On Sen’s view, there are various things that a person might value doing, or being. These he calls “functionings.” “Capabilities” are the various functionings that it is feasible for a person to achieve, regardless of whether that person chooses to achieve them. (One can have the capability, for example, to learn to play a musical instrument, without ever actually doing so.) A person’s “capability set” is the set of all possible functionings from among which she can realistically choose; it is therefore a measure of her freedom. Sen argues that development programs ought to expand people’s capability sets—the range of real options they have for being and doing different things, whether or not they choose to be or do them. Sen does not supply a clearly identified minimal set of capabilities that a society ought to

supply its citizens, nor does he offer an account of how different capabilities are to be traded off against each another. Instead, he asserts the necessity of a continuing process of public reasoning about such tradeoffs—a process that is sensitive to context and that will vary both over time and with the particular policy questions it is addressing. Sen finds nothing wrong, and a great deal right, with a theory of justice that results in only partial and incomplete orderings of policy preferences. In contrast, Martha Nussbaum has attempted to transform Sen’s basic approach into something more like a traditional full-blown theory of justice. She contends that there are certain universal natural capabilities that any just society should secure to its citizens. These capabilities are grounded in an Aristotelian notion of a basic and universal human nature, and constitute the prerequisites for living a life that is fully human. Nussbaum provides a provisional list of the basic capabilities (Nussbaum, 2000). Some are primarily physical (life, bodily health, bodily integrity); some are mental (ability to use the senses, to imagine, think and reason; ability to develop emotional attachments and responses to other people and things; ability to engage in practical reason); some are primarily social (“affiliation,” described as including the ability to live concernfully with others, and to have self- respect and equal dignity with others; and “play,” described as the ability to laugh and play with others, and to enjoy recreation). Her list also includes the ability to live in concernful relation with other species, plants, and the natural world; and control over one’s environment, which is defined to include both political control (rights of political participation, free speech and association), and material control (including both the ability to hold property and seek employment on an equal basis with others, and freedom from unwarranted search and seizure). The contrast between Nussbaum’s approach and Rawls’s is stark. Rawls sets out to frame the basic institutions of a just society, with particular concentration on the rules governing their distribution of societal resources. Nussbaum’s core theory says very little about the proper shape of social institutions, and begins instead with her account of the social prerequisites for a fully human life. Nussbaum says comparatively little about political and civil rights, and almost nothing about the limits of inequality or resource distribution. She is, however, deeply concerned with the effects of poverty and of unequal opportunity,

Justice of and Within Health Care Finance and concentrates on personal capacities and interpersonal ties that Rawlsian theory does not address. The capabilities approach obviously supports redistribution of social resources for the provision of health care. A just society is meant to ensure that its members can live to the natural end of a full lifespan, and secures their proper health and nutrition. The capabilities approach is quite compatible with the literature on the social determinants of health, since social capabilities like affiliation, play, and control over one’s environment are correlated with good health. The capabilities approach to justice in the health arena has been embraced by the publichealth and international-development communities. Health workers and researchers use the theory as Sen intended—to measure the progress of a wide variety of interventions undertaken by an array of institutions: departments, state and national agencies, public international organizations, private nongovernmental organizations, individual research teams. In such varied settings, the concentration of the capabilities approach on concrete and observable features of human lives is a virtue. Nussbaum has recently argued for the superiority of the capabilities approach not just on the operational level, but as a matter of theory (Nussbaum, 2006). In particular, she argues that the capabilities approach is better suited than Rawlsian social-contract theory to addressing, inter alia, the problems of justice for persons with mental disabilities and of justice across national boundaries. With regard to mental disability, Nussbaum argues that Rawls’s theory systematically excludes those with substantial mental disabilities from the sphere of justice. Those who lack the moral powers of reasonableness and rationality cannot be parties to Rawls’s social contract; they have no standing to bargain about the principles of justice. Rawls leaves the question of their treatment to be dealt with legislatively, as a matter of social benevolence, rather than as a core matter of the just structure of basic social institutions. The capabilities approach, in contrast, defines justice in terms of the capabilities delivered to every person. It can give the mentally disabled a full seat at the table of justice, because that table is not a bargaining table. The needs of the disabled are precisely on a par with others’, regardless of their inability to engage in social cooperation. But Nussbaum has little to say about who, institutionally, has the duty to meet the demands of the mentally disabled for justice, or why.

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JUSTICE WITHIN H E A LT H C A R E F I N A N C E : C O N T E M P O R A RY D E B AT E S In the developed world, there are four main institutional models used to meet the demands of justice in health care. None exist in pure form anywhere, but each appears as dominant in certain countries. First, there is the model of a national health service like that of the U.K. Under this model, the government itself is the provider of health care; it owns the hospitals and pays the physicians’ salaries. A second and more common model is that of national health insurance, where government insurance finances the purchase of health care by its citizens from private health care providers. This is the dominant model in, for example, Canada. A third, “social safety net,” model concentrates on providing health insurance to the poor, leaving wealthier citizens to insure against medical loss in private markets. Singapore’s complex health policy makes important use of this “safety net” insurance model. Finally, there is the Bismarkian model of “corporatist” insurance, under which citizens obtain insurance through corporate bodies such as their employers, their unions or professional organizations, or specially created regional organizations. This is the model used in, for instance, Germany and Japan. The United States uses all four of these approaches: the Veterans Health Administration is a genuine national health service, Medicare is non–means-tested social health insurance, Medicaid is a social safety-net program, and most Americans obtain insurance through their employers. (This pluralistic mix nonetheless leaves tens of millions of Americans uninsured.) Each of the four financing models has its difficulties, but all of them share two justice-related problems that are subject to widespread debate: the treatment of illegal immigrants under any national health care scheme, and the propriety of different schemes of rationing for the sake of costcontrol. There is currently a sharp debate both in Europe and in the United States about access by illegal immigrants to government-subsidized health care. On the one hand, illegal immigrants can be seen as free-riders: they have not contributed adequately to the tax base to deserve the benefit of socially subsidized health care finance. On the other hand, illegal immigrants serve an important, though often unacknowledged, economic role; in the U.S. and in Europe, large sectors of the

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economy in fact rely on the cheap labor of illegals. Some illegals actually pay taxes anonymously or under false names. All employed illegals contribute to the economy and to the overall tax base. For these reasons, our collective reliance on their labor may justify their participation in publicly financed health care systems. In any case, the more just solution would seem to lie with immigration reform and/or control, rather than with cutting off health care to immigrants in their time of need— and this is particularly true for children and people who were brought into the country as children. The high cost of health care, the continued development of expensive medical technology and drugs, and the aging of the population have combined to ensure that there is a continuing debate about the need for rationing in any publicly funded health care system. Most scholars agree that no society can afford to pay for all of the efficacious health care that each of its citizens might require—or at least that any country attempting to do so would find itself short of resources for many other pressing social needs, from defense to bridge-building. The question, then, is not whether, but how, rationing should proceed. Daniels and Sabin (2002) have named criteria for the legitimacy of medical rationing schemes, calling for rationing to proceed publicly and according to principles and criteria that all parties to our social enterprise would accept as relevant. Only a handful of countries, though, have actually attempted to articulate principles for rationing of care, and the cost of finding principles everyone can agree upon has generally been vagueness. Principles-first approaches have proven almost universally ineffectual (Sabik & Lie, 2008). In the few cases where principles have been translated into action, their application to particular cases has been challenged politically and judicially; this has been the experience, for example, in the U.K. (Syrett, 2007). A few countries have tried a different, less transparent, approach to rationing, namely the ad hoc creation of a limited package of covered services (Sabik & Lie, 2008). Selection into the covered package in various countries is not guided by uniform application of publicly articulated principles—but the content of the package, at least, and the fact of decision-making, are publicly known. Definedpackage approaches to rationing have proven both workable and stable in a number of countries. The same sort of defined-package approach to cost-control has also worked for private insurance firms.

A still-less-transparent alternative to principled rationing or ad hoc package definition is reliance on (what is sometimes known as) implicit rationing, in which cost-control is achieved by judicious use of economically informed clinical judgment. This is usually achieved by fixing a local budget of some sort and allowing health care providers to use their clinical judgment in order to keep their total costs within that budget. Private insurance firms practicing “managed care” commonly rely to some extent on this approach; “implicit” rationing becomes explicit when physicians are given financial incentives to use their clinical judgment to keep their costs within a fixed budget. Current reforms in the U.K. may result in widespread reliance on implicit rationing (Latham, 2011). This possibility is condemned as unjust by some, who foresee a “postcode lottery” for health care, because costcontrolling judgments will differ from one location to another, making different packages of medical care available to identically situated citizens. It is also condemned for its lack of transparency and public accountability, and on grounds that good clinicians may not be very capable financial planners. But implicit rationing also has its supporters, since it leaves the hard choices in the hands of trusted local physicians rather than resolving them with abstract rules or by the action of a distant committee. A final approach to rationing is supply-side rationing. There is considerable evidence of supply-induced demand for health care; it is only logical to think that some level of cost-control could be achieved by limiting the supply of expensive hospital beds and highly trained specialists. The challenges here are in getting the supply numbers right in the absence of good data, and, more importantly, achieving some level of fairness in the distribution of health care providers and beds. In every country now there are concentrations of specialists in attractive urban areas and shortages of high-tech medicine in outlying rural regions. These facts result in a form of rationing that is unfair, unless people live where they live as a result of voluntary and rational choice that takes account of the health care supply. The above debates about the treatment of illegal immigrants and about mechanisms for rationing are common to every form of socially underwritten health care. But there is currently raging in the United States a debate that is specific to the Bismarkian corporatist approach to the supply of social health insurance. This is the

Justice of and Within Health Care Finance debate about the “individual mandate”: the legal requirement that individuals purchase health insurance for themselves. Individual mandate is a feature of all Bismarkian systems; for example, individual mandates are in place in Germany, in Japan (whose health-insurance system was explicitly modeled on Germany’s), and elsewhere. There are both economic and moral reasons for individual mandates in such systems. The economic argument in favor of individual mandates is that they help prevent a familiar pattern of behavior that can cause insurance costs to spiral upwards. Consider an insurance policy sold, at a standard price, to a thousand people. At that price level, some of those people—say the 50 who regard themselves as healthiest—will come to think that they are not getting enough insurance-payment benefits in exchange for their premium dollars. In contrast, the sickest in the group will think the insurance is a bargain: after all, they pay the same price as everyone else, but collect more benefits because of their more extensive medical needs. At some point, the healthiest will opt out of the policy, and choose either to purchase a competing policy or to risk going without insurance altogether. This leaves only 950 people covering the group’s costs, and the group still contains all the most expensive, health care– utilizing customers. Since it is no longer collecting premiums from the 50 people who barely used their insurance policies, the insurer will have to raise its premium prices to everyone in the group in order to cover its continued costs and still stay in business. But at the new, higher price, a new group of people will decide that the policy is no longer worth the price to them, and they’ll defect, too. This will lead the insurer to raise its premiums again—and so on, until the insured group contains only the sickest people, and their premiums have become hopelessly expensive. This selfreinforcing problem of “adverse selection” in health insurance can be avoided by preventing healthy customers from defecting. That is exactly what the individual mandate achieves. Forcing even the healthiest to remain in the insurance market keeps policy prices stable. The cost of this stability, of course, is a redistribution of funds from healthy insurance-buyers to sick ones (often, from young people to seniors). But the currently healthy may one day become the unhealthy beneficiaries of the mandate’s redistributional effects. There is also a moral argument for the individual mandate. If everyone is forced to purchase

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health insurance, there will be no free-riders on the system. Without the mandate, what happens to the uninsured person who gets hit by a bus? Societies around the world are reluctant to permit those people to die in the street. Instead, they’ll be treated at the expense, ultimately, of those who are insured. An individual mandate prevents this kind of unfairness. It may also enforce or even give rise to feelings of solidarity across society. The American debate involves both general libertarian objections to any government’s forcing its citizens to consume particular products, and more specific objections rooted in the U.S. Constitution. It is not clear what the scope of the libertarian argument is supposed to be. Governments, after all, force their citizens to purchase things they don’t like all the time, through the mechanism of taxation (wars, for example, and incompetent bureaucrats). One might think that a libertarian would find it preferable to be forced by government to purchase services from a private, for-profit market—and this, after all, is what the Obama insurance reform demands. So either the libertarian’s argument is so deep as to invalidate a very large amount of generally accepted governmental behavior, or it relies on some important distinction between government’s buying products with tax money and government’s forcing citizens to buy those products directly. In the former case, the libertarian argument is serious and consistent, but a fringe argument for the reason that it seriously undervalues gains from government programs, for which there is ample evidence. The U.S. constitutional arguments about the individual mandate are fully separable from the moral and economic arguments. The core constitutional question is whether Congress has the authority, under the constitution, to force people to purchase insurance. Two possible sources for this authority are cited: first, the power to tax; and second, the power to regulate commerce among the several states. The individual mandate in the health-reform law is framed nominally as a tax, but opponents of the mandate argue that it is not really a tax, but a form of penalty. Courts have historically found that Congress has fairly broad latitude in framing tax schemes in novel ways, but the question remains whether the mandate is or is not “really” a tax. If Congress cannot enact the mandate as a tax, can it do so under its broad powers to regulate “commerce among the several states”? Here, opponents of the mandate argue that forcing people into commerce (by making

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them buy insurance policies) is not the same thing as “regulation of commerce.” Supporters of the mandate respond that it is the health-reform act as a whole that regulates interstate commerce, and that the mandate is (for the economic reasons mentioned above) an essential element of that overall regulatory scheme. American debate tends to confuse constitutionality with justice, but that is a silly parochialism. If the Obama reforms are judicially condemned on U.S. constitutional grounds, that would not in any way undermine the claims to justice of the healthinsurance schemes of Germany or Japan.

CONCLUSION Few individuals in the developed world will be able to afford the health care they will need in their lifetimes. Collectively, however, citizens of wealthy societies can at least help one another to face their most difficult health challenges, and to avoid the financial crises they might otherwise precipitate. Even at the collective level, health care needs and costs are such as to force us to consider methods of rationing, and to debate about the degree to which we will make our medical resources available to outsiders and newcomers. Such weighty deliberations surely have the potential to divide us. But they surely also have the potential to unite us, by awakening in us a shared sense of our vulnerability, and a common pride in our ability to help one another in spite of our differences. Note 1. Portions of this chapter, particularly some of the paragraphs summarizing the views of different theorists, are revisions of portions of Latham, 2007.

Bibliography Beauchamp, T.L., & J. F. Childress. (2009). Principles of Biomedical Ethics, 6th ed. Oxford: Oxford University Press. Daniels, N. (1985). Just Health Care. Cambridge: Cambridge University Press. Daniels, N. (2008). Just Health: Meeting Health Needs Fairly. Cambridge: Cambridge University Press.

Daniels, N., B. Kennedy, & I. Kawachi. (2000). Is Inequality Bad for Our Health? Boston: Beacon Press. Daniels, N., & J.E. Sabin. (2002). Setting Limits Fairly. Oxford: Oxford University Press. Engelhardt, Jr., H.T. (1999). Freedom and moral diversity: The moral failures of health care in the welfare state. In J. Arras & B. Steinbock (eds.), Ethical Issues in Modern Medicine, 5th ed. Mountain View, CA: Mayfield. Epstein, R.A. (1997). Mortal Peril: Our Inalienable Right to Healthcare? New York: Addison-Wesley. Korobkin, R. (1998). Determining health care rights from behind a veil of ignorance. University of Illinois Law Review 801–836. Latham, S.R. (2007). Justice and the financing of health care. In R. Rhodes, L.P. Francis, & A. Silvers, eds. The Blackwell Guide to Medical Ethics. Malden, MA: Blackwell Publishing. Latham, S.R. (2011). The “real-life” death panel, reformed. Hastings Center Report 41:1 (Jan/Feb). Nozick, R. (1974). Anarchy, State and Utopia. New York: Basic Books. Nussbaum, M.C. (2000). Women and Human Development: The Capabilities Approach. Cambridge: Cambridge University Press. Nussbaum, M.C. (2006). Frontiers of Justice: Disability, Nationality, Species Membership. Cambridge, MA: Harvard University Press. Pogge, T., ed. (1989). Realizing Rawls. Ithaca, NY: Cornell University Press. Pogge, T. (2002). World Poverty and Human Rights: Cosmopolitan Responsibilities and Reforms. London: Polity Press. Rawls, J.B. (1999). A Theory of Justice, revised ed. Cambridge, MA: Belknap Press of Harvard University Press. Sabik, L.M., & R.K. Lie. (2008). Priority setting in health care: Lessons from the experiences of eight countries. International Journal for Equity in Health 7:4 (21 January). Sen, A.K. (1999). Development as Freedom. New York: A. Knopf. Sen, A.K. (2009). The Idea of Justice. Cambridge, MA: Belknap Press of Harvard University Press. Syrett K. (2007). Law, Legitimacy and the Rationing of Health Care. Cambridge, Cambridge University Press.

11 Setting Priorities for a Basic Minimum of Accessible Health Care PAU L T. M E N Z E L

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n the basis of a wide range of reasonable social principles, including “conservative” ones that jealously guard the liberty of the individual and constrain the power of the state, a basic minimum of health care should be universally accessible. This requirement of universal access holds for all types of health care systems, including multi-payer systems, where the requirement is satisfied by a mandate to obtain basic insurance. (See the argument developed in Chapter 2.) In all systems, then, multi-payer ones as well as single-payer and national health service, a major challenge is to discern the basic minimum of care accessible to everyone. If there is no substance to the notion of the basic minimum and it can float down to virtually any level, universal access to basic care will be a sham. The task of this chapter is to discern credible substance for a basic minimum. Just as with the debate over universal access itself, the debate about what to include in the basic minimum can be seen as an ideological battleground between the political right, emphasizing people’s liberty to have very little insurance, and the egalitarian left, claiming that access to all health care should be equal for everyone. The egalitarian extreme—which for health care I refer to as Medical Egalitarianism—holds that for equivalent medical needs, everyone’s care should be equal regardless of income and wealth. Medical Egalitarianism will be rejected by moderate views of distributive justice such as Equal Opportunity for Welfare (well-being). In this as in other liberty-accommodating views of justice, the object of equal distribution is opportunity, not welfare itself, and it is opportunity for something as broad as welfare, which will be defined variously by different individuals. (Also see Chapter 2.) If some of the content of the basic minimum can be derived from this view of justice, the door is open to an

accommodation between liberty and justice, and the challenge of discerning a basic minimum need not be a hard struggle between left and right. In this chapter I will argue precisely that this sort of accommodation is possible. It will yield a disciplined and often relatively lean notion of the basic minimum. The principle of Equal Opportunity for Welfare will play an important role in establishing content, but two other principles will also be needed for the full argument: Presumed Prior Consent, and Personal Integrity. The former contends that under certain conditions we are allowed to presume individuals’ consent to restrictions on their care. The latter expands the timeframe of the health-related events to which consent pertains. Working together, Presumed Prior Consent and Personal Integrity permit—nay, they require—prioritizing care for efficiency and cost-effectiveness. Also playing an important role in discerning the substance of the basic minimum will be some of the moral elements that generated the argument for universal access and mandatory insurance in the first place, including the Anti-Free-Riding Principle with its limiting effect on extracting individual payments to a collective enterprise. The overall argument will necessarily engage the matter of allocating scarce resources, but it will not require a comprehensive account of competing allocation criteria.

A BASIC MINIMUM: PROLOGUE There is nothing morally substantive in the label “basic minimum” itself.1 In a multi-payer system, its content must be derived by asking what level of insurance, for what level of care, the society is justified in requiring people to purchase (subsidized for affordability as necessary). In a singlepayer or national health service system, its content must be derived by asking what care, for anyone

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with the requisite medical need, the society can justify taxpayer funding. The task of discerning a basic minimum is fundamentally the question, what care may a society use its collective coercive power to make universally accessible? The task will need to account for the perspective of citizens required to purchase insurance or pay taxes as well as the perspective of patients needing care. Excluding services from the basic minimum does not bar their use; it only means they will have to be obtained through additional, discretionary investment. Considerable progress on the content of the basic minimum can be made simply by attending to the nature of the argument for mandatory, universally accessible insurance (Chapter 2). Immediately two elements get into the basic minimum: emergency care and primary care. The de facto universal access to emergency care in the U.S. represented by the emergency care requirement on hospitals (EMTALA 1998) creates an anti-free-riding argument for mandatory, universal insurance; people know they will get the benefits of emergency care even if they do not purchase insurance and will not be able to pay extensive charges out of pocket. Further exacerbating the objectionable character of any freeriding is the inefficiency and ineffectiveness of encouraging people to use emergency rooms for primary care. While this inclusion of emergency and primary care does not tell us precisely their scope, it does establish substantial segments of the basic minimum: (a) care that is not debatable within the ordinary operation of a typical emergency room, and (b) primary care that people should be able to access outside the emergency room. By the same logic, another segment of care should also be included: (c) non-emergency acute care that hospitals wisely provide patients to avoid a revolving cycle of ER admissions. Thus we immediately have three significant segments of a basic minimum: emergency care, primary care, and post-emergency acute care. Before further refining the extent of care within a defensible basic minimum, one can infer something else about mandatory insurance for that care: it should not include lifetime benefit caps. The principle of Just Sharing of the financial burdens of illness, a secondary principle generated by the more fundamental Equal Opportunity for Welfare that plays a central role in the argument for community-rated premiums and in turn for mandating insurance, leans strongly against such caps. People with chronic and expensive illness

are in the worst situation. Just Sharing’s whole point is to equalize the financial burdens of illness. If this pertains to anything, it pertains to financial burdens on the most expensive ill.2 Another aspect of the structure of the basic insurance is patient cost-sharing (deductibles and co-payments). How much can be justified for care covered in the basic minimum? The insurance reforms adopted by the U.S. Senate in December 2009, and the full Congress in March 2010, limit the cost-sharing in a qualified insurance plan to $5,950 annually for individuals, $11,900 for families, and a maximum of 40% of the actuarial value of the plan (for a plan that paid out an average $10,000/subscriber in benefits, for instance, cost-sharing would be limited to an annual maximum of $4,000). For families in the income range of 100% to 150% of federal poverty level (FPL), cost-sharing responsibility is capped lower, at 10% of benefit costs; for those at 150% to 200% of FPL, at 20%. Moreover, the maximum deductible within whatever array of costsharing is part of a plan is capped at $2,000 individual, $4,000 family. For preventive services, cost-sharing is completely prohibited (Patient Protection and Affordable Care Act 2010). Annual cost-sharing maxima such as these, graduated with income, meet one of the first tests implied by the argument for an insurance mandate—affordability. Required insurance, to be fair, must be affordable. Deductibles and co-payments can be employed to make insurance affordable, but then overall health care expenses can easily become unaffordable, especially for the most likely ill. Such an outcome would make cost-sharing inconsistent with the logic of mandated insurance and Just Sharing. Admittedly, numerous other debates about the wisdom of cost-sharing abound. It assists in controlling costs and places some significant responsibility for cost-control in the hands of patients, the ultimate arbiters of health care’s value. The extensive RAND study of the 1970s and 1980s (RAND 2006) revealed that a 25% rate of coinsurance, used in the context of typical fee-forservice medicine, reduced costs roughly 20%, and that generally cost-sharing had no adverse effects on participant health. The same study, however, confirmed some marked defects. While cost-sharing reduced apparently unneeded and wasteful care, it also led to an equivalent reduction in effective care of specific kinds: for hypertension, for dental and vision problems, and for complications from laudable exercise and weight loss. Generally,

Setting Priorities for a Basic Minimum of Accessible Health Care cost-sharing had its most adverse effects in discouraging preventive and primary care, especially among the sickest and poorest patients. In the context of mandating insurance, these shortcomings are major. For the mandate to be fair, basic care and its insurance must be made accessible to all—rich and poor alike, ill and well alike. Because cost-sharing has its most adverse effects on the poorest and sickest patients, it must be carefully limited, and graduated with income. Because primary care, including preventive care, has privileged “first” places in the basic care for which insurance is mandatory, primary care must not be discouraged. Furthermore, policies that undermine the use of primary care also promote wasteful emergency room overuse. Cost-sharing must be carefully tailored and limited so as not to discourage effective primary and preventive care. To some extent, cost-sharing is a tradeoff with the breadth of services that insurance will cover. For those with relatively ample financial resources, cost-sharing may be an appropriate way to hold down costs and allow a broader array of treatments to be covered. For those with lower incomes, however, it is likely wiser for a plan to cover a narrower spectrum of treatments but with little or no cost-sharing, particularly for preventive and primary care. In implementing mandated insurance and universal basic care, therefore, we must be wary of the attractiveness of cost-sharing to achieve cost control. It can be highly useful but should be graduated with income and reduced or omitted for the proven measures that people are most tempted to postpone—namely, preventive and primary care.3

PRIORITIZING CARE: E F F I C I E N C Y, L I B E R T Y, A N D PERSONAL INTEGRITY Substantive prioritizing is needed to determine further what care should be included in a just and basic minimum. Prioritizing decisions may or may not constitute “rationing,” the denial of care thought to benefit patients. Some do, but others do not warrant that label. For example, when the care excluded is of such debatable benefit that virtually no one, adequately informed, would want it for herself, the decision should not be counted as rationing. Also, decisions not to cover procedures by specialists that can be offered as effectively in delivery structures of “integrated care” should not be seen as rationing. Such considerations lead me to use the more inclusive term “prioritizing.”

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Some prioritizing decisions aim at costefficiency in the form of either cost-effectiveness or costworthiness.4 Health care is cost-effective when there is no alternative measure that can produce greater health for the same investment or equal health benefit at less expense. As a goal, cost-effectiveness is comparatively uncontroversial5—who, after all, would want to waste resources on care that was less effective or more expensive than it needs to be? Costworthiness is a broader, stronger notion: care is costworthy when nothing of greater value—of any sort, not just improved health—is likely to be achieved by an alternate investment of equivalent resources (Menzel 1983, pp. 2–4 and 17). Both notions figure prominently in prioritizing health care and setting limits on its use. Cost-effectiveness functions “internally,” when the assumption is that the resources available for health care are not to be expanded. Costworthiness functions in more farreaching decisions that have the effect of expanding or shrinking the resources devoted to health care. Both concepts raise questions of liberty and justice. It is often presumed that health care reform should draw on a social philosophy on the more collectivist end of the spectrum, utilitarianism or egalitarianism. Prioritizing employed to achieve efficiency in a group is coercive because it does not leave individuals free to escape its constraints. I will argue, however, that even significantly libertarian views of justice can endorse prioritizing for cost-efficiency in collective contexts. In the right empirical circumstances these contexts may even include unitary public systems. My argument is based on four claims. First is the “insurance effect”: 1. In a context where people are insured, the preferences of currently ill patients and their providers will not produce costworthy health care. Insurance distorts patients’ and providers’ perceptions of the relationship between cost and value. Controlling the use of even very high-cost-perbenefit care becomes extremely difficult. Once patients are insured, whether in private or in public arrangements, they as well as providers have strong incentives to use care even when its statistical benefits approach zero and its cost is enormous. To respond to this problem and regain some control over insurance-supported medicine’s otherwise virtually endless draw on resources, patients and

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subscribers must see resource use from a longer temporal vantage point than simply that of the patient. Admittedly, the right perspective is not the perspective of a subscriber who does not imagine realistically what it is to be ill, but the right perspective is also not that of someone who now thinks only as a “patient.” Since cost-fueling incentives are created by insurance, it is logical to start controlling the use of care at an early point in the process, insuring. It is from the perspective of the “reflective subscriber” that we should make cost/ value decisions.6 Patients and subscribers of integrity will not shrink from this challenge. An explicit principle of Personal Integrity is needed for clarity at this point: 2. People ought to be held to the implications of their beliefs, values, and preferences as they confront later events, not only the current dimensions of their lives. People of integrity are marked by consistency: they wrestle with what one belief, value, or preference means for the other beliefs, values, and preferences they hold, and they wrestle with how to live out their beliefs and values over time. They do not just drop them when the going gets rough. This directly applies to prioritizing care. In their later situation as insured ill patients, or the loved ones of patients, the importance of controlling the resources of their larger lives tends to slip. Whether in communities or as individuals, persons of integrity will retrieve that control by referring to what, at an earlier point in time, they would thoughtfully have consented to by way of setting priorities. At this point the argument is also linked to free-riding. If better alternate use of resources is the good that persons in an insurance pool (private or public) receive by constraining the use of high-cost/low-benefit care, any person desiring to receive that benefit must pay her fair share to produce it. This share is simply abiding by justified limitations on care that emerge from prioritizing decisions made from the perspective of reflective subscribers, when those limitations are applied to one’s own later case as a patient. Not to abide by them when others do is free-riding, receiving the benefit of more efficiently directed premiums without paying one’s own share of being denied marginally beneficial services. 3. If patient-subscribers would very likely have consented to prioritizing out certain non-costworthy care, even though they

have not actually consented, then as long as consulting them explicitly beforehand is virtually impossible or prohibitively costly, they should still be denied such care. Ideally subscribers or their representatives should be involved in shaping the major priorities and guidelines for rationing services to improve efficiency. For one thing, people see intrinsic value in making their own explicit choices. But this is not the sole value of consent (Menzel 1990, pp. 30–31). Bringing decisions in line with a person’s values and beliefs is also a major aspect of consent’s moral importance. To test this out, imagine examples where the only consent possible is hypothetical and presumed. For example, you are comatose. Should we say that since your explicit participation in decisions is impossible, we will decide about keeping you alive solely based on our values, not values we can presume you had endorsed? I doubt it.7 This can be formalized in a principle of Presumed Prior Consent: A person’s prior consent to welfare-limiting or liberty-restricting policies or actions may be presumed by others to the extent that it is impossible, not feasible, or prohibitively costly to have solicited the person’s actual consent, and to the extent that others can reasonably accurately judge what the person’s prior preferences would have been. (Menzel 1990, pp. 22–36)

This makes clear that the moral legitimacy of presuming the hypothetical consent of actual persons is bolstered or weakened by circumstantial factors. The more clearly and explicitly, for example, a health care plan acknowledges concern for effective delivery of services and efficiency, the more ethical room there is for presuming a person’s consent to rationing. On the other hand, the more an insurer or provider publicly proclaims that cost is never any consideration in covering care and people rely on that proclamation in buying insurance, the less plausible it is for the insurer to claim that a particular patient would previously have consented to restrictions. If insurers cautiously constrain themselves in making claims that cost is never any consideration, and if concern for efficiency is acknowledged, claims of presumed consent to prioritizing decisions become increasingly legitimate.8

Setting Priorities for a Basic Minimum of Accessible Health Care 4. Whether overriding honest contrary preferences of particular individuals by a group’s prioritizing decisions offends individual liberty depends on numerous circumstantial factors in a health system, including “translation barriers” to consentbased efficiency. The clearest case of ethical prioritizing for costefficiency will occur when subscribers voluntarily bind themselves to a plan either by freely joining it when its prioritizing policies have been publicly disclosed or by cooperatively helping to construct its policies once they are members. That clear case is plainly dependent on a plurality of competing insurers and providers. More unitary systems, though, cannot be condemned as necessarily inconsistent with individual liberty. First, limiting care in accordance with people’s considered desires about the use of resources is not just compatible with moral respect for the dignity of individual patients; it is morally required by that respect. In cases where care is prioritized for a large group of subscribers or a whole society of citizens, it is admittedly unfortunate, and a diminution of individual liberty, that dissenters do not have their choices reflected in the final shape of their care. Yet if care is not prioritized, individuals who would prefer not to pay for coverage of some of the care that is then provided also have their choices rebuffed. While in the former case dissenters are left without care they would prefer to have covered even with higher cost, in the latter case people have their resources taken from them without reference to their cost/ value judgments. This is particularly objectionable morally when people cannot escape participating in funding the insurance for basic care, as they cannot in either a single-payer system or a multipayer system with an insurance mandate. This conflict with liberty constituted by too expansive care unlimited by any prioritizing for efficiency can be as serious as any conflict with liberty posed by excessive restrictions for efficiency. Unitary systems have an advantage as well as a disadvantage on this score. They can globally cap the aggregate resources used and thereby force providers to limit use of care; no longer can every agent keep passing the buck of responsibility for setting priorities up or down in the system, with the result that no one acts to restrain consumption. Unitary systems achieve this, admittedly, at the cost of not accommodating the desires of honest dissenters who would either rather endure

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later possible denial of care to gain the benefit of lower taxes or premiums or pay higher taxes or premiums to reduce later possible denial of care. Just where this balance finally comes out in our moral calculus may depend in large part on how difficult it is to translate the desires of subscriber-patients to conserve resources into actual restraints on care—difficulties we might call “translation barriers.” Multi-payer market system providers, for example, may strongly resist denying their patients dubiously costworthy care. Perhaps the best way to get people to think about allocating resources over their extended lives is to place them in the shoes of legislators responsible for a whole health care system.9 If, on the other hand, private providers in a multi-payer system are readily willing to create lean plans and adopt cost-restraining practice styles, there is much less for citizens to gain in adopting a more unitary, budget-capped system.10 I conclude that the libertarian sense of justice and autonomy-respecting ideal that cost-efficiency in health care should ultimately reflect the preferences of individual subscribers does not dictate the choice of health care system structure in abstraction from a host of other particular economic and political facts about the society (Menzel 1992a). In any case, we have discerned that concerns of liberty, not merely utilitarian conceptions of maximal aggregate welfare, support prioritizing care to be cost-effective and costworthy.

THE CONTENT OF A BASIC M I N I M U M : C O M PA R AT I V E EFFECTIVENES S AND COST These reflections on prioritizing for efficiency bear directly on the content of a basic minimum. In addition to its implications for several aspects of the insurance itself (no lifetime caps, careful limits on cost-sharing), the argument for mandatory universal insurance implies that the basic care the insurance covers should include primary care, emergency care, and the acute care that often follows emergency care. Basic insurance will also cover a long list of other types of care, often referred to as “essential benefits.” They initially have to be stated in large categories such as “prescription drugs,” “rehabilitative and habilitative services,” “maternity and well-child care,” “durable medical equipment,” etc. (Patient Protection and Affordable Care Act 2010, section 1302). While such categories have a useful role in specifying the content of the basic minimum, they leave undetermined the services within each

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category and the patient conditions that mandated insurance will cover. In the previous section we concluded that consent and concerns for liberty support prioritizing care for cost-efficiency. I will now argue such prioritizing can also be justified as an implication from the very argument for universal access and mandatory insurance. I will start with the easiest kind of case, comparative effectiveness of care, leaving out cost for now. If a service or treatment that is a candidate for inclusion is not as effective as other options, or certainly if it is not effective at all, people should not be required to share in its financing through mandatory minimal insurance. Insurance is a pooling mechanism in which those who end up not needing care subsidize the less fortunate who do. To require everyone to be insured is an imposition on their choice, justified both by the need to prevent unfair free-riding when society has already guaranteed access to emergency care, and by the obligation of the well to share the financial burdens of the ill. Both considerations will be turned on their heads if patients’ providers recommend, and patients choose to receive, care that has been shown to be less effective than alternatives. Put it this way, in the first person: Why should I pay the higher premiums that will result from covering relatively ineffective care? If I am made to pay for that care, I am being exploited either by providers and suppliers with an interest in delivering (i.e., selling) that care, by patients who want to indulge themselves in less effective care, or by both. The unfairness of free-riding that mandated insurance is designed to prevent will have been replaced by a different kind of exploitation. In a single-payer or national health service context, ignoring effectiveness of care will also be exploitation—of taxpayers by providers feathering their nests and patients indulging in their fancies about what is effective that isn’t. Similarly, obligations of the well do not include paying for measures that do not actually help the ill as much as more effective measures. On the surface Just Sharing focuses on sharing expenses, but the driving reason behind the sharing is the goal of assisting the ill to gain better health. Financial sharing is not justice at all if what is financed is known not to advance health.11 It is also hardly justice if we do not care to find out what is effective in improving health. A system of universal access to basic care is obligated to invest in comparative effectiveness research.

Comparative cost-effectiveness is another criterion for inclusion in basic care. Suppose that for treating a given condition, two treatments are equally effective but not equally cost-effective; the two carry different costs for a certain amount of benefit that they achieve.12 When I have been required to contribute my funds through mandated insurance, my assistance and investment is being wasted, relatively speaking, if it is devoted to care that is no more effective but costs more. Indeed, covering less cost-effective treatments for a given condition as well as the more cost-effective ones for the same prospective patients is waste. The concise way of putting this point is to say that plans and providers have a moral obligation to be efficient in their administration of insurance and in their provision of care.13 This is exactly how various parties in European health care systems that provide care as effective as that in the U.S., but at less than two-thirds the cost, put the matter. Marc Danzon, head of the WHO Regional Office for Europe, properly declares that “inefficiency is unethical” (Saltman 2009). Efficiency is not a moral luxury, it is a moral obligation. If it is not taken with such utmost seriousness, those required to finance the system by mandated premiums and/or taxation will have been exploited. Executing this obligation by including in coverage for the basic minimum only comparatively effective and cost-effective services runs into many legitimate concerns. Comparative effectiveness research (CER) may not always show which treatments are best for whom, but give rise to further questions about for whom the treatment is effective for (Gilbert 2009). Opponents of CER also fear that it will lead to rigid practice guidelines that could destroy the “art” of medicine, discouraging providers from thinking of individual patients as anything other than identical representatives of a statistical treatment/diagnosis group. An intelligent defense of CER admits its limits and dangers but insists that it can also be used to create sophisticated guidelines sensitive to the variations that the research itself has uncovered. For example, lumbar and cervical artificial disks might be covered, but only for patients under 60 and only at a single disk level, or lumbar fusion for uncomplicated degenerative disk disease could be covered, but only when multidisciplinary pain services have already been tried (Franklin & Budenholzer, 2009). The case for CER is not just defensive: CER is positively needed to assist

Setting Priorities for a Basic Minimum of Accessible Health Care providers in best serving their individual patients (Chen 2009). Without findings from CER, providers are treading on what too often turns out to be thin ice. To best serve individual patients, practitioners need more evidence about real effectiveness. Furthermore, some guidelines based on effectiveness and cost-effectiveness research should be connected to insurance coverage. If multiple studies show a treatment to be ineffective for a specific condition—arthroscopic surgery for osteoarthritis of the knee, for example (Moseley et al. 2002, Kirkley 2008, Franklin & Budenholzer 2009)— then why should a practice guideline not be fashioned to tell providers that their prescription of such care for that condition will not carry insurance coverage? What better candidate for exclusion can there be than a treatment shown to be ineffective for stipulated conditions by rigorous and multiple clinical trials? The vigorous defense of comparative costeffectiveness should not blind either the public or researchers and analysts to the mistakes and misconceptions that cost-effectiveness analysis (CEA) can involve if pursued too crudely. Whenever it is used to exclude and include treatments for different groups of patients, it will raise questions of justice and interpersonal “social value” that may be more difficult to address than the questions of individual utility within patients’ lives that arise in making decisions among different treatments for the same condition. Erik Nord and others have pointed out numerous ways in which unmodified, individual utility-maximizing CEA can run roughshod over social values in complex interpersonal contexts involving considerations of rescue, individual health potential, severity of illness, maintenance of hope, etc. (Menzel 1999, Menzel et al. 1999, Nord 1999, Nord et al. 1999). Cautions about how CEA can be morally misleading if it is not properly sensitive to such considerations is no reason, however, for rejecting all role for CEA. When the comparative study is about different treatments for the same condition and same patients, it is foolhardy to ignore costeffectiveness in coverage by mandated or singlepayer insurance. Comparative effectiveness and cost-effectiveness are general criteria for inclusion. In the next section I take up two specific conditions and some therapies that raise contentious problems in determining a basic minimum. Here again the arguments for making insurance mandatory and universal provide direction.

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THE CONTENT OF A BASIC MINIMUM: PERSISTENT V E G E TAT I V E S TAT E AND EXPENSIVE END-OF-LIFE CARE The difficulties of drawing efficiency lines for endof-life care are enormous, as such situations tap the deepest human emotions. It may be instructive to examine an instance where life-extending care, I will argue, clearly falls outside the basic minimum. That instance is life support for patients in a persistent vegetative state (PVS). People have deep differences of opinion about whether life in PVS is significantly valuable— witness the case of Terri Schiavo (Pence 2007, pp. 137–171). I would argue, however, that virtually everyone14 shares one evaluative claim about life in PVS: the loss in the value of one’s life that is incurred in falling from typical consciousness into PVS is as great as the loss incurred in dying. A simple question demonstrates this: relative to the sacrifice and effort you will make to avoid dying, what sacrifice will you make to avoid falling into PVS? If people had to confront risks of falling into PVS in the same way and frequency they confront risks of death, I wager they would express in their behavior virtually the same value for retaining conscious life as for staying alive. But then why should we not say that the remaining value that life in PVS retains is no greater than the value retained by death—that is, zero? If in fact some people, after reflection, would reject that inference, the value of PVS life will nonetheless show itself as extremely low in comparison with fully conscious life. Why, then, should we all contribute significant resources to extending the lives of PVS patients? People should be allowed to purchase add-on insurance to cover such care, but it should not be covered by mandatory insurance.15 This exclusion of life-in-PVS-extending care is not generated simply by a difference of opinion about it, as if only treatments unanimously valued justified inclusion as part of basic coverage. The reason for exclusion is that the value of the extendable life can be shown to be low even within the choices of those who profess to place high value on such life. They just are not normally presented with the question that reveals what those choices would be. The value is low from a much wider array of perspectives than just the perspective of people who explicitly object to investing in PVS life extension. Cases of extending conscious life are very different. When a devastating, likely lethal disease

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strikes when one expects to have a good quality of life yet for some time, we are inclined to diminish the significance of cost-efficiency. Take the case of glioblastoma, a very aggressive and deadly brain cancer. It was this condition that U.S. Senator Edward Kennedy learned he had in May 2008, at age 76.16 Standard treatment is radiation. Since its use began in the 1980s, survival has lengthened from a previous average of 4.5 months from discovery. Radiation and a more recently added regimen of chemotherapy are estimated to raise the average longevity to 14-plus months (almost exactly Sen. Kennedy’s survival). Within this average the survival range is narrow. Sometimes some of the tumor can be removed surgically, but no good data show that this surgery lengthens survival at all (Kennedy chose it for his relatively diffuse tumor nonetheless, along with radiation and chemotherapy). Minimal standard care (radiation only) costs in the range of $100,000; with a full complement of chemotherapy, $200,000 to $250,000; with surgery, $500,000 (Kolata & Altman 2009). Several additional drug treatments for this and other cancers have a similar profile of high expense for short life extension. Avastin, at $90,000 for a typical treatment, extends life for only an additional 1.5 months; Erbitux, at $80,000, 1.2 months (Callahan 2009, Geyman 2009). Fojo and Grady (2009) have extrapolated the costs for Erbitux: $800,000 per year of life gained. They point out that if a general-application drug like Erbitux were used by each of the 550,000 Americans who die of cancer annually, a total of $440 billion would be spent annually to add to those lives only an average one-tenth of a year, and for even the luckiest recipient, not much more than that. $440 billion would constitute more than 18% of the $2.4 trillion the U.S. spends annually on health care, and it would be 100 times the annual research budget of the National Cancer Institute. Such examples constitute classic instances of the problems created by the fact that insurance changes perceptions (the “insurance effect”). Once insured, individual patients, their families, and providers naturally want to avail themselves of treatments like Erbitux even though they add only on average 1.2 months. They do add something, and the fact that they generally have some positive effect readily generates hope for a person that for her the effect may be greater. Even surgery that has no demonstrated effect holds out hope: just

doing something—anything—seems to hold out hope. There is no question that how people value life changes as their reference point changes. A statistically average extra 2 months—and the prospect, for me, slim as it may be, of an extra 6 months—seems like a considerable gain when I have little more than a year yet to live. The problem is that when everyone who is insured makes choices from this reference point (and expects her providers to implement those choices and insurers to fund them), the cumulative cost of care grows beyond what people bargain for when they purchase insurance. If we stand back and reflect, as subscribers, before we are in the situation of needing care but realizing that we could need it someday, on what care we think insurance should cover, we can regain the capacity to see the cost/value relationship. This discussion’s context of determining the basic minimum for health care insurance provides a strong reason to regard this “reflective subscriber” perspective as morally appropriate. We are attempting to determine the scope of minimally basic care, insurance for which we require everyone to purchase. The subjects of the mandate are subscribers. They only need to be reflective in order to represent the appropriate perspective for making prioritizing decisions. Thus, a person required to purchase insurance for basic care would be making a relevant objection if she said, in reaction to having to pay hundreds or thousands of dollars more a year for coverage that included Erbitux for every cancer patient, “I’ve been there [in that kind of cancer situation, say with some of her loved ones] and I understand, but I do not regard that kind of care, with such slim benefits, as worth my extra insurance premium dollars.” She would also likely make the same objection to covering surgery to remove diffuse glioblastomas. The reflective calculations required of her undoubtedly include reckoning with the positive value of maintaining hope (Ubel & Loewenstein 1995; Menzel et al. 1999, at 11–12), but she should not inflate hope’s value into what amounts to denying our mortality. At the same time reflective subscribers may endorse coverage of radiation for glioblastoma and even perhaps chemotherapy, expensive as both those types of care are. They typically add only 6 to 10 months of life, but that more than doubles the life that would otherwise remain. This care is probably at the borderline of what reflective subscribers would include; at a $200,000 cost, it buys life at a rate of $300,000 to $400,000 per

Setting Priorities for a Basic Minimum of Accessible Health Care year, higher than the $100,000/year value around which the inferences from value-of-risk-reduction studies tend to cluster.

CONCLUSION Determining a basic minimum in practice, beyond the crude categories to which legislative and insurance policy language is limited, will involve, in area after area of care, nuanced decisions like the ones just discussed (see Menzel 2011a for numerous additional ones). Even from the relatively brief discussion just concluded, however, one can make several observations about discerning a basic minimum: (1) Cost is often relevant. (2) Contextual variables beyond the medical facts of prognosis need to be taken into account—for instance, the value of hope, and the increase in the value we see in life when reference points change. (3) Sometimes, despite contentiously different opinions on the face of a controversy, underlying common values justify excluding care from the mandated minimum. All types of health care systems, in their most defensible forms, provide universal access to a limited scope of care—the care that for that society is its basic minimum. Some elements of the required insurance for that care are implied by the very nature of the argument for a universal access: sharp limits on premium variations, no lifetime benefit limits, careful limitations on cost-sharing, and coverage for primary care, emergency care, and the acute care that follows emergencies. All further delineation of a society’s basic minimum should be through an inclusive process in which values are debated from different perspectives and a prominent role is played by the interests of subscribers who are able, vividly and accurately, to imagine their potential illness conditions. Process requirements for making such decisions are not merely “procedural.” They include a background assumption about the justification decisions must carry, what Daniels and Sabin have elucidated as public “accountability for reasonableness” (Daniels & Sabin 2002, 43–66). In addition to public accessibility of the deliberations and adequate mechanisms for revision and appeal, the rationale for decisions needs to appeal to empirical evidence, to basic reasons behind good public policy like consistency and accountability for consequences, and to moral values and principles that carry more than parochial or esoteric support. These reasons include, among many others, comparative effectiveness, cost, severity of condition treated, and maintenance of hope. In all systems,

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subscribers, taxpayers, and patients should be able to influence the content of the basic minimum and have confidence in the fairness of the prioritizing process. Neither justice nor cost-efficiency requires in a health care system a fundamentally collectivist, non-individualist social ethic. An individual liberty-oriented social philosophy that properly takes account of free-riding, presumed prior consent, personal integrity, justice as equal opportunity for welfare, and just sharing of the costs of illness can accommodate both cost-efficiency and universal access. In an insurance market system, that access will involve mandatory insurance for a disciplined and relatively lean basic minimum of care. Egalitarian social philosophies, too, can tolerate a wider range of structural types of systems than is commonly thought, and they can embrace a disciplined basic minimum of universally accessible care that is far from maximum care. Equal medical care for persons with similar medical needs regardless of income level is not required by egalitarian justice. Considerations both from views of justice such as Equal Opportunity for Welfare and from the very nature of the arguments for universal access help discipline the content of the basic minimum.

Notes 1. Many of the elements of this section and the later sections on comparative effectiveness and end-of-life care are contained in Menzel (2011a). 2. For slightly different reasons, Fleck (2010, p. 7) also sees this implication of mandating insurance for lifetime caps. 3. Of particular note is the fact that a great deal of cost-sharing is used in France, whose system may nonetheless be one of the most equitable in the world. Cost-sharing is ubiquitous in France and not particularly controversial. It is, though, consistently graduated with income. See Reid, 2009, pp. 16, 48, 59–61. 4. Except for “cost-effectiveness” the terms here are not completely standard. It is standard to contrast costeffectiveness analysis with cost-benefit analysis. The object of the former, as its term implies, is cost-effectiveness. The object of cost-benefit analysis is different. It is sometimes referred to as “cost-efficiency,” though my preferred term is “costworthiness” (Menzel, 1983, pp. 2–4 and 17). 5. Very interesting controversies of this sort are vigorously debated in health economics, the major field of study where cost-effectiveness is the central currency. See Menzel et al. (1999). 6. Dworkin (2000) calls this the perspective of the prudent insurer (subscriber). Hall (1997) similarly

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defends this perspective as the proper one from which to make cost/value decisions in health care. 7. On this larger point about the scope of the concept of liberty, see Sen (1983). 8. See here the extensive work by Mark Hall (1997). For a complex and interesting case for applying the principle of presumed prior consent, one might look at the 1991 Minnesota case of Helga Wanglie. I have argued elsewhere that even in this complex situation, a patient may be legitimately denied care on the assumption that she would not have been willing to pay the added insurance costs of covering life support for certified PVS patients (Menzel 1992b). 9. For the more general claim here about political discussions, see Sunstein (1991). On the attractions of unitary health systems for political conservatives, see Menzel and Light (2006). 10. Translation problems in the United States’ current mixed system may stem primarily not from provider resistance but from the peculiar historical fact of an inadequate incentive framework for patients and subscribers: the large and politically well-entrenched tax break that the IRS gives for health care purchased through insurance obtained through employer-paid premiums. Perhaps only without that subsidy, a subsidy that the U.S. public seems incapable of repealing, will subscribers realistically confront decisions about what portion of their lifetime available resources should be devoted to medicine. Translation barriers like this may tip the balance of argument back away from pluralistic, mixed systems toward more unitary, budget-capped ones. 11. Examples are many. A prominent procedure is arthroscopic surgery for osteoarthritis of the knee; used relatively frequently, it absorbed nearly $4b of expenditure in 2000 (Moseley et al. 2002, Franklin & Budenholzer 2009). Another apparently ineffective treatment, though at this point only shown to be so in one trial, is Merck’s cholesterol drug Zetia (Singer 2009). Interestingly, the study showing Zetia to be ineffective was regarded by investors as good news, since some had feared the study would show it to be harmful. In this case, apparently, only a showing of harm is taken as sufficient reason not to market and use a drug. A showing of ineffectiveness is still reason to market and use it, revealing how low U.S. practice can sink on the effectiveness score. 12. An example is CT colonography, which is apparently less cost-effective than colonoscopy for the same conditions, though it is just as effective (Franklin & Budenholzer 2009). 13. Fleck (2010, p. 6) states the connection between mandating insurance and an enhanced status of cost control as the fact that “virtually everyone . . . has a stake in controlling health care costs.” 14. I would argue that “virtually” is not needed here, for the view is held by everyone, I think, who is

willing to respond seriously to the question that follows. Because I have no empirical data, however, I word the claim cautiously. 15. For a discussion of the issues of discrimination against the disabled that surround PVS patients, particularly decisions to let them die, see Menzel (2005). 16. For a more extensive discussion, about a wider range of cases, see Menzel (2011b).

References Callahan, D. (2009). The fine line between waste and marginal benefits. Cost Control and Health Care Reform, Act 1 (Health Care Cost Monitor, The Hastings Center), pp. 7–8. Available: http://www. thehastingscenter.org/uploadedFiles/Publications/ Primers/2009-Health-Care-Cost-Monitor-Act-1. pdf. January 8, 2010. Chen, P.W. (2009). A tool to strengthen the doctorpatient relationship. Hastings Center Report 39(6, November-December):15–17. Daniels, N., & J.E. Sabin (2002). Setting Limits Fairly: Can We Learn to Share Medical Resources? New York: Oxford University Press. Dworkin, R. (2000). Justice and the high cost of health. In Sovereign Virtue: The Theory and Practice of Equality, pp. 307–319. Cambridge: Harvard University Press. EMTALA: The Emergency Medical Treatment and Active Labor Act (1998). Pub. L. No. 99–272, 100 Stat. 164, codified as amended at 42 U.SC 1395dd. Fleck, L.M. (2010). Sustainable health reform: are individual mandates needed and/or justified? APA Newsletter 9 (2, spring), section for Philosophy & Medicine, pp. 5–9. Fojo, T., & C. Grady (2009). How much is life worth: cetuximab, non–small cell lung cancer, and the $440 billion question. Journal of the National Cancer Institute 101(15, 29 June):1044–1048. Franklin, G.M., & B.R. Budenholzer (2009). Implementing evidence-based health policy in Washington State. New England Journal of Medicine 361(18, 29 October):1722–1725. Geyman, J. (2009). Cancer and comparative effectiveness research. Cost Control and Health Care Reform, Act 1 (Health Care Cost Monitor, The Hastings Center), pp. 11–12. Available: http://www.thehastingscenter.org/uploadedFiles/Publications/Primers/ 2009-Health-Care-Cost-Monitor-Act-1.pdf . January 8, 2010. Gilbert, S. (2009). The nesting-egg problem: why comparative effectiveness research is trickier than it looks. Hastings Center Report 39(6, NovemberDecember):11–14. Hall, M.A. (1997). Making Medical Spending Decisions: The Law, Ethics, and Economics of Rationing Mechanisms. New York: Oxford University Press.

Setting Priorities for a Basic Minimum of Accessible Health Care Kirkley, A., T.B. Birmingham, R.B. Litchfield, J.R. Giffin, K.R. Willits, C.J. Wong, B.G. Feagan, A. Donner, S.H. Griffin, L.M. D’Ascanio, J.E. Pope, & P.J. Fowler (2008). A randomized trial of arthroscopic surgery for osteoarthritis of the knee. New England Journal of Medicine 359(11, 11 September): 1097–1107. Kolata, G., & L.K. Altman (2009). Forty years’ war; weighing hope and reality in a cancer battle. New York Times, 28 August 2009. Available: http:// query.nytimes.com/gst/fullpage.html?res=9C07E5 DD103CF93BA1575BC0A96F9C8B63&sec=&spo n=&pagewanted=3. January 9, 2009. Menzel, P.T. (1983). Medical Costs, Moral Choices: A Philosophy of Health Care Economics in America. New Haven: Yale University Press. Menzel, P.T. (1990). Strong Medicine: The Ethical Rationing of Health Care. New York: Oxford University Press. Menzel, P.T. (1992a). Equality, autonomy, and efficiency: what health care system should we have? Journal of Medicine and Philosophy 17:33–58. Menzel, P.T. (1992b). Some ethical costs of rationing. Law, Medicine and Health Care 20(1–2):57–66. Menzel, P.T. (1999). How should what economists call “social values” be measured? The Journal of Ethics 3(3):249–273. Menzel, P.T. (2005). Determining the value of life: discrimination, advance directives, and the right to die with dignity. Free Inquiry 25(5, AugustSeptember):39–41. Menzel, P.T. (2011a). A cultural moral right to a basic minimum of accessible health care. Kennedy Institute of Ethics Journal 21(1, March). Menzel, P.T. (2011b). The value of life at the end of life: a critical assessment of hope and other factors. Journal of Law, Medicine and Ethics 39(2, Spring). Menzel, P.T., M. Gold, E. Nord, J.-L. Pinto-Prades, J. Richardson, & P. Ubel (1999). Toward a broader view of values in cost-effectiveness analysis of health. Hastings Center Report 29(3):7–15. Menzel, P.T., & D.W. Light. (2006). A conservative case for universal access to health care. Hastings Center Report 36(4, July-August):36–45. Moseley, J.B., K. O’Malley, N.J. Petersen, T.J. Menke, B.A. Brody, D.H. Kuykendall, J.C. Hollingsworth, C.M. Ashton, & N.P. Wray (2002). A controlled trial of arthroscopic surgery for osteoarthritis of

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the knee. New England Journal of Medicine 347(2, 11 July):81–88. Newhouse, J.P., and the Insurance Experiment Group (1993). Free for All? Lessons from the RAND Health Experiment. Cambridge, MA: Harvard U. Press. Nord, E. (1999). Cost-Value Analysis in Health Care: Making Sense of QALYs. Cambridge, UK: Cambridge University Press. Nord, E., J.-L. Pinto-Prades, J. Richardson, P. Menzel, & P. Ubel (1999). Incorporating societal concerns for fairness in numerical valuations of health programmes. Health Economics 8:25–39. Patient Protection and Affordable Care Act [PPACA] (2010). U.S. Pub. L. No. 111–148 and supplement Pub. L. No. 111–152, Health Care and Education Reconciliation Act. Available: http://www.opencongress. org/bill/111-h3590/text. June 29, 2010. Pence, G.E. (2007). The Elements of Bioethics. New York: McGraw-Hill. RAND Corporation (2006). The Health Insurance Experiment: A Classic RAND Study Speaks to the Current Health Care Reform Debate (research highlights brief). Available at: http://www.rand.org/ pubs/research_briefs/2006/RAND_RB9174.pdf. January 4, 2010. (Among the sources summarized are Joseph P. Newhouse et al., 1993.) Reid, T.R. (2009). The Healing of America: A Global Quest for Better, Cheaper, and Fairer Health Care. New York: Penguin Books. Saltman, R.B. (2009). Cost control in Europe: inefficiency is unethical. Cost Control and Health Care Reform, Act 1 (Health Care Cost Monitor, The Hastings Center), pp. 37–39. Available: http://www. thehastingscenter.org/uploadedFiles/Publications/ Primers/2009-Health-Care-Cost-Monitor-Act-1.pdf. January 8, 2010. Sen, A. (1983). Liberty and social choice. Journal of Philosophy 80:5–28. Singer, N. (2009). Investors seem unshaken after study of Merck drug. New York Times, 17 November 2009, p. B3. Sunstein, C.R. (1991). Preferences and politics. Philosophy and Public Affairs 20(1):3–34. Ubel, P., & G. Loewenstein (1995). The efficacy and equity of retransplantation: an experimental survey of public attitudes. Health Policy 34:145–151. Walzer, M. (1988). The Company of Critics: Social Criticism and Political Commitment in the Twentieth Century. New York: Basic Books.

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12 Why Justice Requires Rationing in Health Care G O PA L S R E E N I VA S A N

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he basic moral structure of a national health care system is defined by its answers to two questions, whom to treat and which medical services to offer (to those whom the system treats). At first glance, the most compelling answers to these questions are the simplest ones, namely, “everyone” and “everything.” Or, a little more precisely, “everyone, without regard to her ability to pay” and “every effective medical service that a sick person needs.” For the most part, these answers are also the ones affirmed by the many and the wise. In this chapter, I shall argue that, despite its approbation by common sense, the second answer is actually mistaken.1 Not only does morality—or, more specifically, justice—permit a national health care system to deny some sick people some effective medical services that they need, but it positively requires as much. This means that justice requires the rationing of health care, since health care “rationing” is well defined as an arrangement in which a sick person is denied some medical service from which she would truly benefit, in order to conserve resources (often, but not always, to conserve money). I shall distinguish a strong version and a weak version of this conclusion. According to the weak version, what justice requires of the health care system is better described as “readiness to ration,” whereas on the strong version it requires actual rationing. I shall devote most of my attention to the weak version, but we shall also see that this is where the bulk of the philosophical controversy (not to mention, interest) lies. Whether readiness to ration precipitates in actual rationing is largely a matter of how certain facts fall out. For the sake of simplicity, I shall assume that the national health care system under discussion is an “integrated” system, by which I mean that there is some level of health care service to which everyone “within” the system is entitled.2 While

the health care “system” in the United States does not satisfy this assumption (not even if one ignores the uninsured), it is satisfied by national systems as administratively diverse as those (for example) of Britain, Canada, and Germany.3 Our central question will be: Should the level of service to which everyone in the health care system is entitled—the “basic” level—include “every effective medical service that a sick person needs” or not?4 To examine our central question, I shall introduce and contrast two approaches to answering it, which I shall call the “reverse-engineered” approach and the “rationing” approach. In the first section, I shall argue that the reverse-engineered approach is inconsistent with justice. In the second section, I explain why it follows that justice requires readiness to ration health care. I shall also describe what other premises are required to reach the stronger conclusion that justice requires that health care actually be rationed. In the third section, I make a modest beginning on delineating what it takes for a national health care system to be ready to ration justly. I close by considering and rejecting two objections to the argument I have presented.

AGAINST REVERSE ENGINEERING To decide whether the basic level of service in the health care system should include every effective medical service that a sick person needs, it helps to distinguish two further questions. One question is what the national health care budget should be—say, as a percentage of gross domestic product (GDP)—and the other question is which health care services the national health care budget should be used to finance.5 What I propose to call the “reverse-engineered” approach and the “rationing” approach (to specifying the basic level of health care services) are distinguished by the order in which they answer these two questions.

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According to the reverse-engineered approach, we should first decide which health care services the national health care system should include, and then calculate the national health care budget derivatively, by simply reading it off the aggregate cost (in a given year) of the services we have already decided to include. By contrast, according to the rationing approach, we should first specify the percentage of GDP to be spent on health care, and only afterwards decide which health care services to finance out of that (provisionally) fixed budget. As the labels suggest, I shall argue that the reverseengineered approach answers these questions in the wrong order. Specifically, I shall argue that justice itself requires that we answer the questions in the order indicated by the rationing approach. Not surprisingly, this will entail a readiness to ration. Strictly speaking, the reverse-engineered approach is a family of approaches (as is the rationing approach, for that matter). Different members of the family are distinguished by the different specific answers they give to the question of which health care services the national health care system should include. For concreteness and convenience, I shall focus on the version that begins by claiming that the basic level of health care service should include “every effective medical service that a sick person needs,” and then adds that the national health care budget should simply be the sum of what it actually costs (i.e., whatever it costs) to provide the population “within” the system with all the medically necessary services they happen to require in a given year. Henceforth, by “the” reverse-engineered approach, I refer to this version in particular. My argument against it is a simple one. It has only two or three premises. The first premise is that health is not the only good; it is not even the only good with an important claim on social expenditure. I shall take it that this premise is selfevident. But plausible examples of other goods with comparably important claims on social expenditure include education, security (law and order, as well as defense), infrastructure, and private spending.6 It follows already that there is a limit on the amount of health spending that can be justified. That limit is set by the proper balance, whatever it might be, between health and the other goods with a comparably important claim on social expenditure. To give a very simple example: if health is one of five goods, and they each have equally important claims on social expenditure, it is not justified to spend more than a fifth of GDP on health (care).7

Of course, it is controversial what the proper balance among goods is. For the moment, however, it is enough to observe that each conception of this balance sets some limit on the resources it is justified to allocate to health (care). Since some such limit follows on each conception of the proper balance among goods, the existence of a limit on justifiable health care spending is not affected by which conception of that proper balance is correct—resolving that controversy would only affect the location of the limit. My second premise builds on the first. It says that the limit on justifiable health care spending (the one entailed by the first premise) is independent of the aggregate cost of the medically necessary services required by a given population (in a given year), at least for any strictly scientific definition of “medically necessary.”8 Since nothing in the definition of either quantity refers to the other quantity, this independence actually holds in both directions. Consider first the limit on health care spending. It is set purely by reference to the proper balance between health and the goods with which health competes for social expenditure; and this proper balance, in turn, makes no reference to the cost of the goods themselves. Thus, in my example, the limit of a fifth was based simply on the number of goods and the equality of their claims on expenditure. No reference was made to the cost of medically necessary services (or to any other cost). Now consider the aggregate cost of medically necessary services. No strictly scientific definition of which health care services are “medically necessary”—that is, of which medical services are effective and for which medical conditions— refers to their cost, still less to their affordability under a particular budget constraint. The accumulation (in a given population and time period) of the cost of the various health care services that qualify as “medically necessary” is therefore insensitive to the location of any limit on justifiable health care spending. It follows that the aggregate cost of the medically necessary services required by the population “within” the health care system may well exceed the limit on justifiable health care spending. There is no guarantee, in other words, that the aggregate cost will not exceed the justifiable limit. That is what it means for the two quantities to be independent. At a minimum, then, the reverseengineered approach exposes society to the danger that its health care budget will exceed the limit on

Why Justice Requires Rationing in Health Care justifiable health care spending, and hence will violate justice. Arguably, this is already sufficient to reject the reverse-engineered approach, for it is difficult to see how justice can both impose a limit on health care spending and also permit society to commit itself to a course of spending on health care that is unconstrained by any regard for remaining within the limit. Still, some may resist this conclusion, if the danger of exceeding the limit on justifiable health care spending seems attenuated. To foreclose this possibility, let me add a final premise. My third premise is that the rate of growth in potential spending on medically necessary health care services exceeds the rate of growth in GDP. “Potential spending” here simply means what could be spent on medically necessary services, assuming that any new health care service meeting the criterion of effectiveness (i.e., the one built into the operative strictly scientific definition of “medically necessary”) is added to the basic level of service in the health care system. Since the reverse-engineered approach commits society to including every medically necessary service in that basic level, “potential spending” so defined tracks the magnitude of the health care budget to which society is committed on the reverse-engineered approach. The case for this premise is empirical. Across the Organisation for Economic Co-operation and Development (OECD), the average share of GDP spent on health care has risen every decade since 1970 (Fig. 12.1). A rise in the share of GDP spent

on health care entails that the rate of growth in health care spending exceeded the rate of growth in GDP.9 Hence, with actual spending rather than potential spending,10 a 40-year worldwide trend supports my third premise. In effect, the third premise simply assumes that the historical trend in health care spending will continue. This assumption is entirely plausible, since the factor most likely to occasion a dropoff in the trend is failure to add some new medically necessary services to the basic level of health care service. But while such failures would restrain the growth in actual spending, they would not affect the growth in potential spending.11 With the addition of this third premise, it now follows that, sooner or later, the aggregate cost of the medically necessary health care services required by the population will exceed the limit on justifiable health care spending. In other words, the third premise entails that, given the health care budget to which the reverse-engineered approach commits society, the share of health care spending in GDP is ever-increasing.12 In that case, health care spending must eventually exceed its limit, since health care’s justifiable share of GDP is a fixed share. Whether the limit is exceeded sooner, later, or has taken place already depends on the location of the limit on health care spending, as well as on the magnitude of the differential rates of growth. But that the limit will be exceeded— and hence, that justice will be violated—depends on neither factor. It is assured.

10.0 Public expenditure

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access and rationing GDP spent on health in 2007 was 8.9%.14 From the standpoint of a typical rich nation,15 this average is a little misleading, insofar as it includes a significant outlier at the high end (the U.S., at 16%) and a number of large poorer nations at the low end (Mexico, Turkey). Still, the smallest share of GDP spent on health by a nation in the “Group of Seven” is 8.1% (Japan) and the highest share after the United States is 11% (France). So 9% remains a useful rough benchmark. Now, from the fact that 9% is the average share of GDP spent on health, it hardly follows that 9% is the right share to spend. On the other hand, there is no real evidence that spending more—let alone, a lot more—than 9% can be justified in terms of improving health outcomes. Among rich nations, there is little if any association between higher per-capita spending on health and increased average life expectancy. This can be seen, for example, by looking in Figure 12.2 at the nations that spend between $2,000 and $5,000 per capita on health (at purchasing power parity).16 Provided that a certain level of development has been reached, there is no evidence that higher per-capita spending on health leads to discernible improvements in life expectancy. In this respect, the position occupied by the United States in Figure 12.2 is certainly sobering.17 An alternative, “seat-of-the-pants” approach to specifying the national health care budget

We should therefore reject the reverseengineered approach to specifying the basic level of service in the health care system.

R E A D I N E S S T O R AT I O N The alternative is to begin by specifying what the national health care budget should be (e.g., as a percentage of GDP) and only afterwards to decide which health care services should be financed out of that (provisionally) fixed budget. In other words, the alternative is to follow the rationing approach. In principle, the national health care budget should be set to coincide with the limit on social expenditure justifiably allocated to health (care). As I have said, this limit is given by the proper balance between health and the other goods with an important claim on social expenditure. Locating it therefore requires one to resolve the controversy about which balance among goods is proper. No doubt the difficulty, to put it mildly, of achieving any such resolution at least partly explains the dearth of attempts to specify the national health care budget abstractly, along the lines of the goods-balancing approach. But then again, there has been surprisingly little constructive discussion, along any lines, about the right share of GDP to spend on health.13 It may help to have some practical points of reference. Across the OECD, the average share of

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Why Justice Requires Rationing in Health Care might therefore be to fix it at 9% of GDP (or the current share in a given nation, whichever is higher),18 while relying on the fact that any advance specification of the health care budget must be provisional. It must be provisional in order to enable a feedback mechanism, through which the budget target is fine-tuned on the basis of experience. I shall illustrate this point in the next section. But fine-tuning on the basis of (the right kind of) experience is arguably as valid a basis as any for adjusting a given normative target for the health care budget. It is important to see, however, that it does not really matter for our immediate purposes where the health care budget has been fixed or whether it can be adjusted for later budget cycles. The crucial point is simply that the health care budget is fixed for the current cycle and the justification for this point is already in hand, being part and parcel of the warrant for setting the health care budget in advance of specifying which health care services belong to the basic level of service (i.e., for rejecting the reverse-engineered approach). This is the crucial point because, given that the health care budget is fixed (even provisionally), it follows that some medically necessary health care services must be rationed. Let me spell this consequence out, using a limit of 9% of GDP for illustration (cf. note 18). If this year’s health care budget is fixed at 9% of GDP, and the aggregate cost of all the medically necessary health care services required by the “covered” population this year exceeds 9% of GDP, then some medically necessary services cannot be provided to some people “within” the health care system. Some medically necessary services, in other words, must be excluded from the basic level of health care service. They must be rationed. Of course, by itself, this tells us nothing about which medically necessary services to exclude. That remains a very substantial further question, to which I return in the next section. Nevertheless, we do thereby reach the basic conclusion that justice requires some medically necessary services— that is, some medical services from which a sick person would truly benefit—to be rationed. As I indicated at the outset, we can distinguish a strong version of this conclusion and a weak version. To articulate this distinction, let me introduce the concept of the reverse-engineering bill for a given national health care system, defined as the aggregate cost of all the medically necessary health care services required by the population “within” the system in a given budget cycle (a year,

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say). I use this label because, as may be evident, the “reverse-engineering bill” so defined represents the annual sum that the reverse-engineered approach commits society to pay in full for health care. Schematically, the magnitude of a health care system’s reverse-engineering bill depends on three facts: (1) which health care services are “medically necessary,” (2) what their unit costs are, and (3) what the incidence of disease is in the “covered” population (i.e., how many units of service they require) during the budget cycle. To restate the lesson of the previous illustration in these terms, justice requires a national health care system to ration some medically necessary services if its reverse-engineering bill exceeds 9% of GDP. In its weak version, our conclusion retains this conditional form. It is “weak” in the sense that the condition in question may not be satisfied; and if it is not satisfied (e.g., if the reverse-engineering bill is only 8.5% of GDP), then no actual rationing is required by justice. Or so it will have turned out, this year. But, of course, it might also have turned out otherwise. Even on the weak version of our conclusion, then, justice requires national health care systems to be “ready to ration.” That is to say, it charges them with rationing medically necessary services in the event that their reverse-engineering bill exceeds 9% of GDP. More generally, the weak version of our conclusion holds that justice requires national health care systems to ration medically necessary services whenever their reverse-engineering bill exceeds the true limit on justifiable health care spending, whatever that might be. The strong version holds, more simply, that justice requires some national health care system actually to ration some medically necessary services. In effect, it adds a further claim to the weak conclusion, namely, that some national health care system’s reverse-engineering bill does exceed the limit on justifiable health care spending. Whether this further claim is correct depends on what the true limit is, as well as on how the three schematic facts that determine the magnitude of a reverse-engineering bill fall out in the relevant time and place. I also claimed, to embellish somewhat, that the weak version of our conclusion is actually more interesting philosophically than the strong version. To some extent, this is because justice has no particular stake in how the schematic facts (1) to (3) fall out. Beyond this, however, it is because of two features of the weak version’s “readiness to ration” requirement. First, readiness to ration entails permission to ration. Most of the popular

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controversy, and a fair bit of the philosophical controversy, surrounding the idea of rationing health care is generated by the belief that justice forbids rationing. The weak version of our conclusion suffices to refute this belief. Second, the rationing required by justice cannot be indiscriminate. Not every health care rationing scheme is a just scheme. As we shall begin to see in the next section, what it takes for a national health care system to ration justly is a rather difficult and complicated question. Yet answering it satisfactorily is also part of being “ready to ration.” But I do not mean to suggest that the (distinctive further claim added by the) strong version of our conclusion lacks philosophical interest. After all, it presupposes an account of the right share of GDP to spend on health (care). For my own part, I have tried to avoid resting my principal contentions on any such account, in deference to the difficulty of defending one rigorously. In particular, my argument against the reverse-engineered approach dispensed with an account of the right share to spend by making its third premise very strong. My third premise said that the rate of growth in potential spending on medically necessary health care services exceeds the rate of growth in GDP—that is, perpetually exceeds it. We could now translate that as: the growth in the reverseengineering bill perpetually exceeds the growth of GDP. Since that is very strong, it is worth observing that this premise can be weakened substantially, so long as the right share of GDP to spend on health care is “somewhere in the neighborhood” of 9% (e.g., between 9% and 16%). In that case— which is very plausible, though not demonstrable—it would suffice for the third premise to claim that the growth in our nation’s reverse-engineering bill “will exceed the growth of GDP for the foreseeable future.” So interpreted, the third premise is not merely plausible, but perfectly secure. Moreover, it remains adequate to my argument, since it still follows that the growth in our reverseengineering bill will exceed the limit on justifiable health care spending. Thus, we preserve my conclusion that the reverse-engineered approach is inconsistent with justice.

R AT I O N I N G J U S T LY From the standpoint of justice, the cardinal merit of the rationing approach (to specifying the basic level of service in the health care system) is that it guarantees that health care spending will remain within the limit justice prescribes.19 The rationing

approach provides this guarantee by committing society to exclude from the basic level of health care service, if need be, a subset of medically necessary services sufficient to bring its reverse-engineering bill in line with the limit on justifiable health care spending—in other words, by committing society to being “ready to ration” some medically necessary services. Now society could obviously exclude many different subsets of medically necessary services from the basic level of health care service, each consistently with the very basic aim of the rationing approach. However, justice is far from indifferent to which subset society excludes. Suppose, for the sake of illustration, that the right share of GDP to spend on health care is (again) 9% and that our annual reverse-engineering bill is 10%. Then our very basic aim under the rationing approach will be to exclude a subset of medically necessary services that will—given their unit costs and projected annual incidence of (medically indicated) use by the “covered” population—save society 1% of GDP (cf. note 18). One particularly pig-headed, albeit effective way in which a national health care system could satisfy this very basic aim is the following: Do not exclude any medically necessary service (cover “everything”); pay the reverse-engineering bill as it comes due each month; stop when the money “runs out” (say, in late November). Under this rationing scheme, no one gets any health care in December (at least, not anyone who relies on the basic level of service). But I take it that, despite guaranteeing that health care spending remains within 9% of GDP, this scheme would itself violate justice, since the resultant deaths and aggravated burden of disease would have been eminently avoidable. Since justice is not indifferent to how national health care systems ration medically necessary services, the readiness-to-ration requirement it imposes on them should be understood as the requirement to be “ready to ration justly.” In the space that remains, I should like to register three points about what it takes for a national health care system to ration justly. Each corresponds to a substantial topic in its own right (particularly the first two), so I shall simply “register” the points here, deferring an adequate treatment to another occasion. The first point is a matter of substance, while the other two are matters of process. It may seem obvious that, in pursuit of its very basic aim (to exclude a subset of medically necessary services that will save, e.g., 1% of GDP), the

Why Justice Requires Rationing in Health Care rationing approach should exclude the subset of medically necessary services that also produces the least amount of health. In other words, it may seem obvious that society should try to maximize the health return on its fixed investment in health (e.g., on 9% of GDP).20 The standard methodology for specifying how to realize this objective is “cost-effectiveness analysis,” which compares alternative health care interventions in terms of their cost per quality-adjusted life-year (QALY).21 However, cost-effectiveness analysis has been subjected to extensive ethical criticism.22 Among other things, this includes criticisms—reminiscent of distributive justice objections to consequentialism—of its objective of maximizing “aggregate health.” My first point is that, without prejudice to the merit of the ethical criticisms, the core ambition of cost-effectiveness analysis remains not only ethically defensible, but critical to rationing justly. Its core ambition is to quantify (or, more generally, to define clearly) what we might describe more neutrally as the “medical opportunity cost” of a given medical intervention—that is, of including it in the basic level of health care service. By the medical opportunity cost of a given intervention, I mean the difference between the amount of health it will produce and the amount that could be produced through other interventions instead— including, importantly, interventions for different diseases or health conditions—by an alternative allocation of the same level of expenditure. The QALY represents one specific (and widely employed) measure of medical opportunity cost. The higher an intervention’s relative cost per QALY, the higher its medical opportunity cost. For example, if a particular chemotherapy for lung cancer costs twice as much per QALY as bypass surgery for heart disease, then spending a given sum on chemotherapy will only produce half as many QALYs as spending it on bypass surgery would produce. If we include that chemotherapy in the basic level of service instead of bypass surgery, the medical opportunity cost of our decision is the amount of health thereby forgone—the additional amount we could have produced, had we included bypass surgery instead. In this case, it is the entire amount of health produced by the chemotherapy (i.e., that number of QALYs again).23 Under cost-effectiveness analysis, this particular chemotherapy would therefore have a lower priority for inclusion than bypass surgery. If we have to exclude some medically necessary services from the basic level of health care,

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then we inevitably have to pay some medical opportunity cost. How high a cost we pay depends on which particular services we exclude. If the ethical criticisms of cost-effectiveness analysis are valid, then the QALY is not a defensible operationalization of (a unit of) “health.” Likewise, there is no requirement strictly to “minimize” the medical opportunity cost of (what we include in) the basic level of health care and we also need alternative ways to aggregate units of health. None of this, however, vitiates the basic moral relevance of medical opportunity costs to rationing decisions. Indeed, it is difficult to imagine how health care could be rationed responsibly in the absence of reliable information about the medical opportunity costs of alternative rationing decisions. Insofar as existing measures or methods are inadequate, readiness to ration justly requires that we replace them with better ones. But that is not a license to abandon the exercise. My second point relates to the conclusion that the process whereby a national health care system arrives at rationing decisions must be a “fair process” (which presumably means, inter alia, that it has to include public participation in some form). The point is not itself that conclusion, which I take for granted here, but rather a comment on it. To wit, however else we understand this conclusion, we should not regard the recourse to fair process as a substitute for a substantive account of what makes particular rationing decisions just.24 By “fair” process here, I mean procedurally fair. I also assume that concern about the fairness, both substantive and procedural, of rationing decisions arises at least partly because rationing decisions, like any major feature of the health care system (or of any major social institution), need to be politically legitimate. There are two main reasons why fair process should not be regarded as substituting for substantive justice in relation to rationing decisions made by real-world health care systems. To begin with, fair process is required anyhow—that is, required even if rationing decisions were guaranteed to be substantively just. This follows from the fact that political legitimacy is at least partly— plausibly, is even largely—a procedural notion. Even when an institutional decision is “correct,” its political legitimacy depends on how it was taken. Hence there is no need to appeal to the indeterminacy of substantive principles to show that rationing decisions require a fair process in order to be legitimate. A different reason why fair process cannot substitute for substantive justice is that it partly

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depends on substantive justice. More precisely, its anticipated effect does: procedural fairness is a necessary condition of legitimacy, but not a sufficient condition. Some minimum of substantive fairness is also necessary, since arguably rationing decisions cannot be legitimate if they are (substantively) grossly unfair, not even if they emerged from a procedurally impeccable process.25 Reliably to achieve legitimacy, that is, a rationing scheme arguably has to exclude grossly unfair outcomes. Hence, fair process needs to be supplemented (or buffered) by a substantive account of rationing justly.26 Finally, we should remember that the process whereby health care systems ration care involves more than selecting a subset of medically necessary services to exclude from basic coverage. Among other things, it has to provide some mechanism for adjusting the provisionally fixed target for the health care budget on the basis of experience. For example, once a set of health care priorities has been developed, there may turn out to be some bright line in the ordering that can be reached if and only if the budget is expanded a little. This may be the only way, for instance, to avoid drawing an arbitrary line within a class of patients with the same disease and the same capacity to benefit from a particular (effective) intervention.

OBJECTIONS AND REPLIES Let me close by considering two objections to my central argument for the justice of health care rationing, both of which intersect with popular concerns about rationing. To begin with, it will be objected that my argument fatefully ignores the extent to which national health care systems are rife with “waste.” A tempting line of thought takes its point of departure from studies of the regional variation in health care costs within a given health care system.27 Following this line, “wasteful spending” can be defined, for example, to cover the difference between the highest regional costs and the average costs in the system (or between the average and the lowest costs). In any case, the core idea behind the objection is something like this: “If only we could eliminate all of the wasteful spending on health care, we could easily afford to cover everything medically necessary for everyone in need.” Under a more popular interpretation, this objection functions to forestall the development of any of the apparatus (e.g., adequate cost-effectiveness measures) needed to implement a rationing

scheme: “So long as there is waste that could be cut instead, we don’t need [to think about] rationing.” Under a more technical interpretation, the objection aims to block any inference from data on actual health care spending to the magnitude of potential spending on medically necessary health care services (or “the reverse-engineering bill”), on the grounds that actual spending includes a lot of spending on services that are not “medically necessary” (see note 10). If such inferences are blocked, perhaps not even the United States exceeds the limit on justifiable health care spending. In reply, I shall forgo any advantage that would accrue from a closer examination of how “wasteful spending” on health care is (to be) defined.28 Even without the benefit of that important exercise, the objection can be seen to fail under either interpretation. Let me address the technical interpretation first. Of course, actual spending on health care can only serve as a proxy for a national health care system’s reverse-engineering bill. To calculate that bill more precisely, one would have not only to subtract actual spending on services that are not medically necessary, but also to add non-actual spending on medically necessary services that were required by the covered population yet not actually provided (for a myriad of reasons). Unfortunately, the objection fails anyhow because it operates in static terms, whereas the argument it targets operates in dynamic terms. However much “waste” there is in the health care system, eliminating it only provides a “one-time savings.” But the key point in my argument against the reverse-engineered approach appeals to a positive difference in two rates of growth (growth in the reverse-engineering bill, as compared to GDP).29 Reaping a one-time savings, even a large one, can therefore at best delay the point at which the reverse-engineering bill exceeds the limit on justifiable health care spending. Yet the time at which that limit is exceeded is irrelevant to the fact that exceeding it, at any time, is a violation of justice—a violation to which the reverseengineered approach commits the health care system. An alternative way to grasp the defect in the objection is to recognize that the fundamental driver in the growth of actual health care spending is technological innovation (i.e., something entirely independent of “waste”).30 Hence, even if wasteful spending on health care were eliminated entirely, growth in health care costs would

Why Justice Requires Rationing in Health Care continue unabated, carrying my argument to its conclusion all the same. This point can be reinforced by reminding ourselves that, as long as new medical “technology” is effective, failure to adopt it—and, a fortiori, regional convergence on lower adoption rates—does nothing to restrain potential spending on medically necessary health care services, and so nothing to restrain the growth of “the reverse-engineering bill,” as I have defined it. Under the popular interpretation, the waste objection fails for a simpler reason, namely, that it depends on a false dichotomy. There is no opposition between eliminating wasteful spending and readiness to ration health care. Given any limit on justifiable health care spending, eliminating wasteful health care spending serves to minimize the number of medically necessary services that have to be rationed (to remain within the limit), if any do. However, if some medically necessary services do have to be rationed, there is no responsible way to decide which particular services to ration in the absence of a developed set of health care spending priorities. Indeed, this point applies equally to decisions about which services not to ration (given that some will be rationed). A developed set of priorities is therefore needed even to make responsible decisions about where to reassign the savings from cuts to wasteful health care spending. Since this holds for the first increment of savings as much as for the last, it makes no sense to defer readiness to ration until after “all” the waste has been cut. Finally, it may be objected that my argument begs the question in favor of “social control” over health care spending. Again, this objection can be given alternatively popular or technical interpretations. Understood popularly, the complaint is: “But it is my money, so there is no limit to how much of it I may spend on health care.” Construed more technically, the objection may concede some presumption that spending on “health” should be socially controlled, but it insists that no such presumption governs spending on “private expenditure.” Yet by assigning “private spending on health” to “health” rather than to “private expenditure,” my argument seems gratuitously to exclude the possibility that private spending on health should not be socially controlled (see note 6). But if it should not be socially controlled, how can it be rationed permissibly? Let me accept, for the sake of argument, that there is no limit to (or justified social control over) how much I may spend on health care from funds that are “strictly mine.” Since this proposition

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entails the permissibility of “tiers” within a national health care system, it is actually controversial in some quarters (see note 4). But I shall not worry about that here. Let me also provide the health accountant’s category of “out-of-pocket expenditure” as an example of what counts as health care spending from funds that are “strictly mine.” For present purposes, the salient contrast is between “out-of-pocket expenditure” and “private insurance” as sources of health care spending. My argument is neutral on the system-design question of which combination of government expenditure, private insurance, and out-of-pocket expenditure represents the best arrangement for financing a national health care system (cf. note 3). But government expenditure and private insurance schemes actually have it in common that, under them, my health care is financed partly (in fact, largely) from other people’s money. Specifically, in a private insurance pool, the particular health care services I use—or even, am eligible to use—have ramifications, by definition (of “insurance pool”), for other people’s premiums. Hence, unlike out-of-pocket expenditure, when my health care is financed by private insurance, the relevant funds are not “strictly mine.” Contrary to the objection, then, I need not rely on any presumption in favor of “social control” over any health care spending, at least not in any collectivist sense. I require only the anodyne presumption that my spending of other people’s money is subject to their veto. Now it is possible that this veto will not be exercised: One could, in principle, construct a private insurance pool composed exclusively of individuals who remain committed to spending limitless amounts of their own money to finance health care for themselves and fellow members of their insurance pool. Let me call health care insurance pools of this kind libertarian co-ops. I concede that members of a libertarian co-op would be immune to my argument for rationing health care. However, for anyone with private health care insurance outside of a libertarian co-op, it follows that other members of the insurance pool accept some limit on the premiums they are willing to pay, and hence they are entitled to veto coverage decisions that (threaten to) drive their premiums over that limit. Having thereby recovered the idea of a limit on justifiable health care spending, here applied to (virtually all) private insurance in particular, my original argument can now return to the races. The brief reply to the popular version of the objection is therefore—no, it is not “your” money

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(in the relevant sense of “strictly yours”), not unless your health care is financed entirely out of pocket. The brief reply to the technical version is that private spending on health care can still be rationed permissibly when it is financed by insurance, since individuals are entitled to veto how others spend their money. In both cases, two loopholes remain open, an explicit one for health care financing that is entirely out of pocket and another one for (the complication posed by) libertarian co-ops. But neither loophole corresponds to a remotely significant fraction of privately financed health care. Accordingly, we may safely disregard the second objection.

Notes 1. I shall not discuss the first question, although there I do accept the commonsense answer that justice requires universal access to health care. 2. In a universal access system, every resident of the country counts as a person “within” the system. 3. In general, a given moral structure for the healthcare system can be implemented by means of a great variety of administrative arrangements. Arguments about the moral structure of a national health-care system are therefore neutral on many points of system design (e.g., whether a health-care system should be “single payer,” which the German system is not). 4. If the answer to this central question is “no,” a further question arises about whether it is permissible for some individuals but not others to have access to additional levels of health care (e.g., on the basis of greater ability to pay). In other words, we might then ask whether it is permissible for a national health-care system to have “tiers.” This further question I shall simply leave open. (Perhaps only Canadians are vexed about it.) 5. The second question here appears to repeat our central question. While it may therefore seem that I am indulging in a needless multiplication of questions, this appearance is deceptive. As we shall see, whether our central question is merely repeated depends on the order in which the questions in the text are answered. 6. By “social expenditure,” I mean all of GDP (i.e., all of the non-borrowed money there is for anyone to spend) and not governmental expenditure. Thus, unless one believes that the government ought to control all expenditure, one has to carve “private expenditure” out as a category within social expenditure and to leave some room for it. To avoid prejudicing various systemdesign questions about the administrative structure of the health-care system, I count private expenditure on health under “health” rather than under “private expenditure.” I consider an objection to this method of proceeding at the end of the chapter.

7. My argument proceeds under the gross simplification that all spending on health should be spent on health care. This is clearly false, since health is not the only important socially controllable determinant of health. See, e.g., Marmot, M., & R. Wilkinson, eds. (1999). Social Determinants of Health. Oxford: Oxford University Press. But relaxing this assumption would greatly complicate the argument without materially altering or improving it. After all, recognizing that spending on health has to include spending on things besides health care can only serve to lower the limit on what can justifiably be spent on health care. 8. Some definitions of “medically necessary” are arbitrary administrative definitions rather than strictly scientific ones. For example, on the definition of “medically necessary” in the Canada Health Act, it is a necessary condition of a health-care service’s being medically necessary that it be either a physician service or take place in a hospital. In that case, one and the same pharmaceutical counts as medically necessary if it is administered in the hospital and not medically necessary if it is administered in an outpatient setting. See, e.g., Detsky, A., & D. Naylor. (2003). Canada’s health-care system—reform delayed. New England Journal of Medicine 349:804–810. 9. From 1970 to 2006, the average annual growth in health-care spending was one-and-a-half times the average annual growth in GDP (3.77%, compared to 2.11%) in 20 OECD nations other than the United States. In the United States, it was double (4.14%, compared to 2.05%). Aaron, H., & P. Ginsburg. (2009). Is health spending excessive? If so, what can we do about it? Health Affairs 28, Exhibit 2. 10. There is room to object that actual spending on health care includes spending on services that are not “medically necessary.” So some actual spending should be subtracted from “potential spending,” as I have defined it. I consider (and reject) this objection at the end of the chapter. 11. What is more, these failures would themselves be straightforward cases of health-care rationing. 12. On this interpretation, the third premise is actually rather stronger than it needs to be, as we shall see at the end of the second section of the chapter. 13. One exception, after a fashion, is R. Dworkin. (2000). Sovereign Virtue. Cambridge, MA: Harvard University Press, chapter 8. See also note 17 below. 14. OECD. (2009). Health at a Glance 2009: OECD Indicators. Paris: OECD, 163. All the figures given in this paragraph come from this source. 15. One reason for focusing on rich nations is that the illusion that health-care rationing should be avoided is a luxury that only rich nations can even seem to afford. 16. For comparison, average per-capita spending on health across the OECD was $2,984 (PPP) in 2007. OECD. (2009). Health at a Glance 2009, 161.

Why Justice Requires Rationing in Health Care 17. A more common quasi-exception to the dearth of discussion about the right share of GDP to spend on health care is given by critiques of the share spent by the United States in particular. See, e.g., Aaron & Ginsburg, “Is Health Spending Excessive?,” 1273: “The case that the United States spends more than is optimal on health care is overwhelming.” 18. For continuity with the discussion of the proper balance among goods, I gloss here over the fact that any sensible target for national health (care) spending would be framed in terms of per-capita spending, rather than some percentage of GDP. Compare note 16. 19. By contrast, the fundamental defect of the reverse-engineered approach is not merely that it fails to provide any such guarantee, but furthermore that the level of spending on health care to which it commits society (the “reverse-engineering bill”) will exceed, so I have argued, the limit prescribed by justice. 20. For some discussion, see Culyer, A. (1992). The morality of efficiency in health-care—some uncomfortable implications. Health Economics 1:7–18. 21. For an introduction, see Nord, E. (1999). CostValue Analysis in Health-care: Making Sense of QALYs. Cambridge: Cambridge University Press. 22. See, e.g., Daniels, N. (1996). Rationing fairly— programmatic considerations. In Justice and Justification. Cambridge: Cambridge University Press, ch. 15; Brock, D. (2004). Ethical issues in the use of cost effectiveness analysis for the prioritisation of health-care resources. In Public Health, Ethics, and Equity, ed. S. Anand, F. Peter, & A. Sen. Oxford: Oxford University Press, ch. 10; and Ubel, P. (2000). Pricing Life. Cambridge, MA: MIT Press. 23. This assumes that the need for bypass surgery is high enough to absorb all of the expenditure that would have gone to that chemotherapy for lung cancer. 24. The impression that fair process substitutes for a substantive account of justice, at least when it comes to rationing health care, is encouraged by the influential work of Norman Daniels and James Sabin. Daniels, N., & J. Sabin. (2008). Setting Limits Fairly, 2nd ed. New York: Cambridge University Press,

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p. 30: “We must rely on fair process because acceptable general principles of justice fail to give us determinate answers about fair allocation and because we have no consensus on more fine-grained principles that do.” 25. In effect, I deny that even a procedurally impeccable process for rationing health care will instantiate pure procedural justice. For some discussion, see Rid, A. (2009). Justice and procedure: how does ‘accountability for reasonableness’ result in fair limit-setting decisions? Journal of Medical Ethics 35:12–16. 26. More controversially, I doubt in particular whether legitimate decisions could emerge from a fair procedure for rationing health care if the procedure paid no attention to medical opportunity costs. If I am right that such a procedure would be irresponsible, how could its decisions be legitimate? 27. See, e.g., Gawande, A. (June 1, 2009). The cost conundrum. The New Yorker, pp. 36–44; and Fisher, E., J. Bynum, & J. Skinner. (2009). Slowing the growth of health-care costs—lessons from regional variation. New England Journal of Medicine 360:849–852. 28. See, e.g., Aaron, H. (2008). Waste, we know you are out there. New England Journal of Medicine 359:1865–1867. It seems clear that any such examination must eventually return to the issue of costeffectiveness. 29. It pays to observe here, for example, that even the rate of growth in health-care spending for the lowest-spending region identified by Fisher, Bynum, and Skinner still exceeded the growth of GDP. In Salem, Oregon, health-care spending grew 2.3% annually from 1992 to 2006: “Slowing the growth of healthcare costs,” 850. From 1990 to 1999, GDP grew 2.04% annually and from 2000 to 2006, 1.41%: Aaron & Ginsburg, “Is health spending excessive?,” Exhibit 2. 30. See, e.g., Smith, S. J. Newhouse, & M. Freeland. (2009). Income, insurance, and technology: why does health-care spending outpace economic growth? Health Affairs 28:1276–1284. The other main drivers identified in this study (income growth and insurance changes) have nothing immediately to do with waste either.

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13 Priority to the Worse Off in Health Care Resource Prioritization D A N W. B R O C K

R

esources available to the health care system are and always will be scarce, however much many Americans would like to deny it.1 It is not possible, nor would it be rational or just, to provide all potentially beneficial care to everyone, no matter how small the benefits and great the cost. As a result, potential resource uses must be prioritized in a way that reflects the individual and social values at stake. In the face of scarce resources available for health care, many will respond that they should be used in whatever manner will maximize the overall or aggregate health benefits for the population they serve. Cost-effectiveness analysis using measures of benefits like quality-adjusted lifeyears (QALYs) is the analytic tool for comparing different health interventions and programs for their aggregate health impacts (Gold 1997, Brock 2004). However, this utilitarian or consequentialist approach suffers from the familiar problem that it looks only to the overall benefits to a population without any direct concern for how those benefits are distributed to distinct individuals. It does not matter who receives how much benefit so long as resources are used to maximize overall benefits. Distributive justice and fairness, however, concern how individuals are treated relative to other individuals—which inequalities between individuals or groups are just or unjust. Perhaps the most common feature of different theories of justice and of the thinking of ordinary persons about justice is a special concern for the worse-off members of society. This is seen in familiar popular aphorisms such as that “the justice of a society can be seen in how it treats its least fortunate members.” Many otherwise different religious traditions also share this concern for the worse off in their teachings and work on social justice. Concern for the worse off has a long

tradition in political philosophy as well and in more recent decades has been a central focus of the work of John Rawls and the many others he has influenced (Rawls 1971). Rawls’ well-known Difference Principle requires that the basic social and economic institutions of society be arranged so as to maximize the expectations of the worstoff representative group, though the absolute priority it gives to the worst off is controversial. However, this principle has a specific and qualified application in Rawls’ work and he did not apply it to health care. This paper addresses how a concern for the worse off should be reflected in health care resource prioritization. Norman Daniels has characterized this as one of several important unsolved rationing problems. (Daniels 1993). Because the United States health care system is extremely heterogeneous and complex, prioritization decisions will take different forms, and be made in different ways by different parties at different places in that system. This will continue to be true after the Obama health care reform takes effect. Moreover, since our health care system often fails clearly to assign responsibility to anyone for using available resources to meet the health needs of a population, we often lack the practical institutional and policy means for making explicit and rational resource-prioritization decisions. Too often resource priorities are de facto determined by myriad decisions made by many individuals acting under a variety of often perverse incentives; it should hardly be a surprise that the result is often both irrational and unjust. However, a rational and just health care system should be able to make explicit prioritization decisions such as these: a state department of mental health must decide whether to use limited resources to expand services to severely and chronically mentally ill

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patients, or to expand treatment programs for less severely ill patients with mild to moderate obsessive-compulsive disorder; a hospital must decide whether to use limited resources to expand its medical intensive care unit, which serves the most critically ill patients, or to expand its clinic serving teenage pregnant women and mothers; a health department must decide whether to use limited resources for a health care outreach program for homeless persons or to expand hypertension screening programs for the general population. For each of these decisions, data are of course needed on the expected benefits and costs of the different programs, but they each raise as well in different and complex ways what priority, if any, should be given to the worse off. If a cost-effectiveness standard for prioritizing health care resources in decisions such as these is rejected in part in order to give priority to the worse off (that is, in favor of a Prioritarian view), then we face three main sets of issues. First, why, for what reasons, should the worse off receive priority for health care resources? Second, who are the worse off for the purposes of health care resource prioritization? Third, how much priority should the worse off receive? These issues are complex, controversial, and unsettled in general theories of distributive justice, and so here too in theories of just or equitable health care resource prioritization and allocation; if anything, the problem is worse in the health care context because the issues have received less sustained attention there and so I believe are less well understood. This means that it will not be possible to provide anything like a precise and definitive account of what priority the worse off should receive in health care resource prioritization, but we can at least explore some of the issues that must be resolved to develop that account.

M O R A L J U S T I F I C AT I O N S O F P R I O R I T Y TO T H E WO R S E O F F Why does justice require some priority to the worse off in health care resource prioritization and allocation? Perhaps the most natural reason is a concern for equality. When disadvantages are undeserved, then the moral baseline would appear to be equality, since it eliminates those undeserved disadvantages. This view has been challenged by philosophers like Robert Nozick, who has argued that although advantages may not be morally deserved, it does not follow that individuals are not entitled to them or that others may justly take

them away (Nozick 1974). Nevertheless, many will share Larry Temkin’s egalitarian view that it is bad if some individuals are worse off than others through no choice or fault of their own (Temkin 1993). And some commitment to equality is a central feature of nearly all theories of justice, with most of the dispute being in what respects people should be equal. However, whatever the relevant respects, there are strong objections to a fundamental commitment to equality in outcomes or conditions, both in general and as the basis of a special concern for the worse off. First, the goal of equality in outcomes is different than the goal of improving the condition of the worse off, and so equality in outcomes will not always support improving the position of the worse off. For example, suppose we must choose between two public-health interventions, only one of which we can afford. The two interventions will result in the following additional months of life expectancy for the affected groups A, B, and C, each of which has the same initial life expectancy before the interventions:

Intervention 1 Intervention 2

A

B

C

10 12

12 18

13 24

Intervention 1 has the more equal outcome, whereas Intervention 2 has the better outcome for the worst off; indeed, two is Pareto superior to one because it is better for all three groups A, B, and C. One might reply, just take the additional benefits to C in Intervention 2 and redistribute them to A so that all three are at 18—this will now maximize the position of the worst off and achieve full equality; it will satisfy both the Egalitarian and Prioritarian. But that need not be possible—the only intervention that will raise A’s life-expectancy gain from 10 to 12 months may inevitably raise B and C’s life expectancy still further, as in distribution 2, thereby increasing rather than decreasing inequality. So the Egalitarian and Prioritarian views are fundamentally different. An Egalitarian view is fundamentally relational—it evaluates distributions by how equal the positions of the different parties are. A Prioritarian view gives greater priority to improving individuals’ positions the worse off they are, without regard to whether doing so makes the overall distribution more equal. Second, equality in outcomes or conditions is a problematic goal in its own right, even for egalitarians and

Priority to the Worse Off in Health Care Resource Prioritization even if achievable. The central difficulty is what Derek Parfit has called the “leveling down” objection. If it is a morally desirable, even if not always all things considered decisive, feature of states of affairs that individuals are equal in some relevant respect, then to take Parfit’s example, in a community in which half its member are blind and half are sighted it would in one way be better if we removed the eyes of the sighted, not to give them to the blind, but simply to make the sighted blind. That would be in one way better even if it was in no way better for the blind. This we may find impossible to believe… [I]t is not enough to claim it would be wrong to produce equality by leveling down… Our objection must be that, if we achieve equality by leveling down, there is nothing good about what we have done. (Parfit 1991)

Note that this objection is not just that equality is one of our moral ideals or commitments among others, as moral pluralists like Temkin acknowledge; according to Temkin, the increase in equality here is a good, but it is outweighed by our additional concern for well-being (Temkin, 2003). Most proponents of the leveling-down objection, however, do not believe it just shows that we are moral pluralists, but rather that it calls into question any non-instrumental commitment to equality in outcomes in general; if it does, then such a commitment cannot explain our special concern for the worse off in particular. Other examples that Temkin has offered make a strong case for the pluralist position, though it would take us too far afield to explore them here. An alternative egalitarian view looks not to whether outcomes are unequal, but rather to whether inequality is brought about by unjust treatment or action; Parfit calls these telic and deontic egalitarianism, respectively. However, while some of the conditions that make particular individuals or groups disadvantaged are the result of unjust treatment, such as discrimination against minority groups, other conditions are not, such as suffering from a genetically transmitted disease or from accidental injuries for which no one is at fault. This implies that deontic egalitarianism would not support giving priority to all the worse off in health care or other contexts, only to those who are worse off as a result of injustice. A more promising egalitarian appeal, especially in the health care context, might be to equality of

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opportunity. The best-developed theory of justice in health care, that of Norman Daniels, focuses on the impact disease has in limiting people’s function and in turn opportunity (Daniels 1985, 2008). Since some principle of equality of opportunity is common to most theories of justice, they could agree that health care that prevents or restores loss of function is required to protect equality of opportunity. In order to avoid the leveling-down objection, the commitment must be to bring people up to the normal opportunity range for their society, not strictly on equality of opportunity, but this is a common way of interpreting equality of opportunity principles. In general and roughly, the greater the loss of function caused by disease or illness, the further persons will be from enjoying the normal opportunity range and so in that respect the worse off they will be. How this view of equality of opportunity applies to the worse off depends on how it is interpreted. The greater the loss of function that health care can prevent or restore, the greater the increase in overall opportunity it will produce. If equality of opportunity is given a maximizing interpretation as requiring eliminating as much as possible the aggregate loss in opportunity from the normal range suffered by the members of society, then providing health care that prevents or restores a greater loss of function and opportunity should have priority over preventing or restoring a lesser loss. This is not equivalent to maximizing opportunity, as in a consequentialist view that focuses on opportunity instead of well-being, since raising people above the normal opportunity range does not have the same moral importance as bringing people up to it. But it does not give priority to the worse off when a greater loss of function and reduction of opportunity can be prevented or restored for better-off persons than can be achieved for others who are worse off. The issue of priority for the worse off, however, concerns whether and to what extent we should give priority to the needs of the worse off even when we could provide greater overall improvement in function and opportunity by directing resources to better-off groups—that is, whether and how much we should depart from a maximizing cost-effectiveness applied to bringing people up to their society’s normal opportunity range and accept a lower level of aggregate gain in health and opportunity in order to respond to the needs of worse-off groups. To support this priority for the worse off, an equality of opportunity account must be interpreted as holding that the lower a

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person’s level of opportunity is, the greater the moral importance of raising it. Most accounts of equality of opportunity are not clear on how they are to be interpreted in this regard. The general point then is that a shift in focus from well-being to opportunity, together with a commitment to equality of opportunity, will not support priority to the worse off without an independent argument for the prioritarian instead of the maximizing interpretation of equality of opportunity. Whether in the context of equality of opportunity or more generally, we need an account of why the worse off should receive priority because they are worse off, not because we can often produce greater benefits by treating their greater needs. Here is how Derek Parfit states “the priority view: benefiting people matters more the worse off these people are” (Parfit 1991). He characterizes the view as weighted beneficence: benefits have greater moral weight the worse off those who receive them are. This leaves open how much greater moral weight they have, and in particular does not commit a Prioritarian to a maximin position that gives absolute weight to improving the position of the worse off. How might one justify this Prioritarian view? The issues are very complex and cannot be at all fully explored here, but I will at least mention three potentially promising responses especially relevant to the health care context. First, the worse off that persons are, the greater the relative improvement a given-size benefit will provide them, and so the more the benefit may matter to them; “mattering” could be given either a subjective or objective interpretation in this context. To illustrate, suppose that on a scale of health-related quality of life like the Health Utilities Index, on which death equals 0 and full health equals 1, person A is very seriously disabled and at level 0.20, while person B, who is less seriously ill and impaired, is at level 0.60; if we could use a given amount of health care resources to move either of them up the HUI scale by 0.20—that is, produce the same-size health gain for each—doing so would provide A with a 100% increase in his health-related quality of life but only a 33% increase for B. (Many readers will find precise quantification of health status problematic, but I use it only for ease of explication; it is not essential to my argument.) This may be what people had in the mind in empirical studies in which they were offered choices between using limited resources for a treatment program that would serve a group like A or a group like B, and where those same resources

would produce a larger health gain for B than for A (Nord 1993). Most people preferred to treat the worse-off group A even when doing so would produce substantially less aggregate health benefits than would have been achieved by treating group B instead. The reason many offered for this preference was that they believed it would be more important to the more seriously ill to get treatment, even though they would receive less benefit from treatment; one reason that it could be more important is because the worse off ’s relative, although not absolute, health improvement would be greater. Giving priority to the greater relative improvement will give only limited, not absolute, priority to the worse off, for example if A can only be raised from 0.20 to 0.25, while B could be raised from 0.60 to 0.90. But whether or not relative improvement is the morally important consideration, few would support absolute priority to the worse off, no matter how large the health sacrifice to better-off groups. A different line of justification for the priority view focuses on the different strength claims generated by the different degrees of undeserved deprivation A and B suffer from their substantially different degrees of undeserved poor health relative to their being in full health. Because worseoff A’s undeserved deprivation is much greater, he has a greater complaint and so a stronger moral claim than B that his deprivation be reduced or eliminated. It is morally more important or urgent to reduce A’s greater deprivation than B’s just because it is the greater undeserved reduction in health-related quality of life from full health. (This line of argument of course relies on the health disadvantage being undeserved and so will not apply in cases where individuals are at fault or responsible for their own poor health. In which cases health disadvantages are not undeserved is of course controversial, but many people believe that a substantial portion of health problems result from behavior for which individuals are responsible.) Some line of reasoning of this sort is common in contractualist moral theories like that of Thomas Scanlon and in Thomas Nagel’s work on inequality (Nagel 1979, 1991; Scanlon 1998). In this view, individuals’ moral complaints and in turn claims are determined by how well off they are in comparison with other individuals, but not other aggregates of individuals; a group of individuals each with lesser claims cannot combine together to take priority over individuals each with greater complaints and claims. The idea is to minimize the complaint of those with the greatest

Priority to the Worse Off in Health Care Resource Prioritization complaint, and one interpretation (there are others) of who has the greatest complaint is those who are worst off. If we improve the position of the worst off as much as possible we minimize the complaint they have based on their disadvantage. A principle of minimizing complaints is a maximin principle that gives absolute weight to improving the position of the worst off, and so is different than weighted beneficence that allows aggregation but weights benefits to the worse off more than benefits to the better off. If minimizing complaints is given this maximin interpretation, then minimizing complaints might be balanced against other moral concerns such as beneficence in raising average or aggregate well-being. A similar view can be put in terms of needs, and it has a special resonance in the context of health care. Many people believe that the basic or most urgent needs, either general needs or health care needs in particular, of all should be met before meeting the less urgent needs or wants of any. The purpose of health care in particular should be to meet health care needs, and more urgent needs should take priority over less urgent needs. This view too requires that individual patients should confront other patients as individuals and that individuals with the most urgent needs should receive priority for treatment. This is a Prioritarian view in the context of health care, though it too may be too strong in giving absolute priority to the most urgent needs. Treating the most urgent needs first, as well as minimizing the greatest complaints, brings out the relation of the Prioritarian view to the aggregation problem—when should greater aggregate benefits to a larger number of patients receive priority over lesser aggregate, but equal or larger individual benefits to fewer patients (Daniels 1993, Kamm 1993, Hirose 2007)? Consequentialists in principle accept no limits on aggregation in seeking to maximize overall benefits, and so small benefits to many individuals may in the aggregate be greater than and so take priority over large benefits to a few individuals. However, if we must treat the most urgent needs, or meet the strongest claims, of individuals first, this will place very strong constraints on permissible aggregation— individuals with less urgent needs or weaker claims, no matter how large their number, would not be treated before anyone with a more urgent need or stronger claim. This view does not rule out all aggregation, since it would not bar preferring to treat more rather than fewer patients with equally urgent needs, for example saving more

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lives rather than fewer, but whether doing so without giving the fewer any chance to be treated is fair is problematic. Many non-consequentialists would also permit some aggregation when needs are not equally urgent, though when to do so is a very difficult and controversial matter (Kamm 1993). If always giving priority to more urgent needs or stronger claims is too strong and rules out too much aggregation, we should only give some but not absolute priority to the worse off; I return to this issue later in the chapter.

W H O A R E T H E WO R S E O F F F O R H E A LT H R E S O U R C E P R I O R I T I Z AT I O N ? Suppose that one of these or some other line of reasoning, suitably elaborated, succeeds in establishing that it is morally more important to benefit people the worse off they are, and more specifically that it is morally more important to improve people’s health the worse off they are. We then face the second main issue noted above of who is worse off for the purposes of health care resource prioritization and allocation. There are several parts to this issue. The first is whether for purposes of health care resource prioritization, the worse off should be understood as those who are sicker (i.e., those with worse health) or as those with worse overall well-being. In a general theory of distributive justice that gives some priority to the worse off, it is overall or global well-being that should be important; for example, Rawls’ statement of the general form of his principles of justice does not distinguish any particular aspect of well-being, although his Difference Principle, which requires maximization of the expectations of the worst-off representative group, applies to the basic institutions that determine the distribution of income and wealth (Rawls 1971). Thomas Nagel also argues that the “units” for distributive principles are whole human lives (Nagel 1979, 1991). We could then treat health care as one among other goods determining people’s overall wellbeing whose distribution should be arranged to give priority to improving the condition of those who are overall worse off. This fits the common idea that a disadvantage in one aspect of well-being can be compensated for by an advantage in a different area; for example, the loss of rich cultural opportunities in moving from a large city may be compensated for by new outdoor recreational opportunities in the country, or a loss of income from taking a less pressured and demanding job

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may be compensated for by increased time to spend with one’s family. One might argue, however, that health is not like these other goods in being fully substitutable with other components of well-being. To the extent that health is an allpurpose means necessary for the pursuit of nearly all of people’s aims and ends, its loss may not be fully replaceable by other goods leaving people’s overall well-being intact; this non-substitutability of health, or of specific aspects of health, seems to hold only partially at most. Applying the Prioritarian view to overall or global well-being would have what for many are highly counterintuitive implications for health care prioritization. For example, we would have to give lower priority to treating the rich than the poor, even when the rich are much sicker than the poor, if the overall well-being of the rich is higher despite their much worse health. This certainly conflicts with the clinical practice of physicians. If this is unacceptable, it indicates that we think of the distribution of health care as a separate sphere, subject to its own distributive principles, not simply as one aspect of overall well-being regulated by general principles of distributive justice (Walzer 1983, Kamm 1993, Brock 2003, Kamm 2004). Thomas Scanlon has argued explicitly that priority to the worst off does not have general application within contractualist moral theory, but that “for differences in level to affect the relative strength of people’s moral claims to help, these differences have to be in an aspect of welfare that the help in question will contribute to” (Scanlon 1998, p. 227). A separate spheres position that restricts the definition of the worse off in health care resource prioritization to those with worse health holds that there are different spheres of goods to which different distributive principles apply, and those spheres should be treated separately or independently as a matter of justice. Thus, a concern for the worse off for purposes of prioritizing educational resources should look to those who are worse off with regard to education and educational opportunities, and similarly to the extent that there are other additional separate spheres. Likewise, a concern for the worse off for purposes of prioritizing health care resources should look to those with the worse health (and perhaps as well to their capacity to benefit from treatment, but this still keeps the assessment within the health domain); this fits common clinical practice of giving the sickest patients priority for treatment (again, typically taking some account of capacity

to benefit from treatment as well) when resources are explicitly scarce; for example, who is treated first in hospital emergency rooms or who gets scarce intensive care unit beds or organs for transplantation. A separate spheres view might be justified on pragmatic policy grounds—it would be too difficult, costly, intrusive, and controversial, as well as too subject to mistake and abuse, for health professionals to evaluate people’s different levels of overall well-being; health professionals are experts in the evaluation of people’s health, not of their overall well-being. Alternatively, some have argued on principled grounds for the autonomy of different spheres of distribution—income and wealth, health care, votes, and so forth—with different moral principles applying to different spheres. For example, Frances Kamm has argued that health care is an activity or good complete unto itself and it is corrupted when other aims besides health intrude into it. Yet in many human activities we often pursue multiple aims, and it is not clear why it would be wrong to do so in the health care system as well. Kamm has also argued that there is a Kantian reason for observing separate spheres in health care resource prioritization (Kamm 1993). If we give one group of patients lower priority for treatment than a second group solely because treating the latter will, for example, produce indirect economic benefits for their employers by reducing lost work days that will not be produced by treating the former, we violate the Kantian injunction against treating people solely as means. The first group is treated solely as a means in the sense that they and their health care needs are given lower priority solely because treating them is not a means to the indirect non-health benefits from treating the second group. The arguments for separate spheres are controversial and their force may depend both on the contexts and levels of the health care system in which prioritization decisions are made, as well as on the roles and responsibilities of those making them (Brock 2004). Even if there is good reason to restrict the concern for the worse off to those with worse health in the prioritization and allocation of health care resources, additional issues remain. One is how to determine who has worse health. This may seem obvious and straightforward, even if there will be disagreement about close cases, but it is not. One question is whether the worse off are those with the worse overall health or those with the most serious medical condition now in need of treatment.

Priority to the Worse Off in Health Care Resource Prioritization For example, suppose A has a serious disability that leaves his overall health-related quality of life as measured on the HUI at 0.5, while B’s overall health is much better at 0.9; A and B each contract the same disease, but B’s case is more serious and will reduce her health-related quality of life to 0.7 without treatment, while A’s less serious case will reduce hers to 0.4 without treatment. Should a special concern or priority for the worse off favor A or B? A’s overall health is worse, and will be worse than B’s even if she and not B is treated, but B has the more serious illness now in need of treatment because her illness will have a greater adverse impact on her health-related quality of life than will A’s on hers; a natural description would be that B is the sickest now, but A’s overall health is worse. Person tradeoff studies that Erik Nord and others have done show that people give considerable weight to severity when it is understood as how bad one’s overall health is now rather than how serious the condition is now in need of treatment. It is doubtful, however, that a separate spheres argument implies that we should ignore large background differences in current health or health-related quality of life and attend only to the seriousness of the illness for which each patient now needs treatment. A separate spheres argument seeks to restrict health care resource prioritization to considerations of patients’ health, not other factors such as their economic productivity, but patients’ background health state is a health consideration. And while treating B would produce the most health benefits, it would only increase the degree to which A’s health is worse than B’s. This question has obvious importance for the priority that should be given to treatment of patients with serious long-term background or chronic illnesses or disabilities besides the current condition in need of treatment. Severity is sometimes interpreted by Nord and others as how sick a patient is now, and his and others’ research indicates that people give more weight to it than to treatment effect or benefit, so long as patients will receive a significant benefit from treatment (Nord 1993, Nord et al. 1995). Giving great weight to severity could be one explanation for the strong priority people typically give to saving life over improving others’ quality of life. Losing one’s life is typically seen as losing everything, and in quantitative scales of health-related quality of life, death is the typical zero point (this leaves aside the problem of states worse than death). This supports the idea that patients with

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life-threatening conditions are the most severely ill and should receive priority over others less severely ill. Another aspect of the question of who is worse off, again assuming the assessment is restricted to health, is whether only individuals’ present health, or instead their lifetime health, including past and expected future health, is relevant. Suppose 65-year-old A developed an infectious disease as an infant that has left one leg paralyzed, and 65-year-old patient B has also just contracted this disease, but his case is more serious and has affected an arm as well; a new treatment of the condition is developed that would restore the full use of their limbs to each patient, but we can treat only one of them, and no future treatment of the other will be possible. Who should be considered the worse off? B’s illness is more serious and results in a greater loss of function than A’s, but A has suffered his lesser loss of function for his entire life, while B has been healthy all his life and only now has suffered his more serious loss of function. A seems the worse off with regard to health because he has had the condition for so long, even though his condition now is less serious than B’s. On conventional accounts of personal identity, people’s lives extend continuously over time and our moral concern should be for the lives they lead, not simply for how good their lives are at a particular point in time, whether now or some time in the past or the future. A concern for the worse off should reflect this concern for people’s lives as a whole and so not ignore the duration of people’s poor health. Moreover, in other areas besides health we often take what a person has had or suffered in the past to be relevant in distributing scarce benefits now; if one child has had little opportunity for travel in the past in comparison with her well-traveled sibling, fairness supports giving a travel opportunity to her now that can go to only one of them, even if the well-traveled sibling might enjoy and benefit from the trip more. On a Parfitian view of personal identity, in which identity is a matter of degree, not all or nothing, the less identity holds between a person now and her past self, the less that past self ’s health should affect her priority for treatment now. Differences in the duration of expected future health impairments seem relevant as well for who is worse off; for example, if both A and B contract a disease now at age 65, but A will suffer his lesser impairment for the rest of his life, while B will suffer his greater impairment only for a few years and then will regain normal function, A appears

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to be the worse off. In this case, if both diseases are fully treatable, what makes patient A worse off also makes treating her produce the greater benefit. Who will be worse off in the future is sometimes treated as urgency, but that concept is in fact more complex. Urgency is a function at least of how great a harm a patient will suffer if not treated, how soon a patient must be treated to prevent the harm, and how soon the patient will suffer the harm without treatment; it is a major factor in selecting patients for transplantation of scarce organs, especially livers, as well as for triaging patients under emergency conditions. Frances Kamm distinguishes two senses of urgency to reflect its complexity: urgencyt, which refers to how soon the harm will be suffered, and urgencyq, which refers to how much the patient’s quality of life will be reduced without treatment (Kamm 1993). However, since there are two aspects of the temporal component of urgency—how soon it is necessary to treat the patient to prevent a harm and how soon the harm will be suffered if the patient is not treated—they may conflict. For example, it might be necessary to treat A now to prevent her suffering a harm 1 year from now and necessary to treat B in 6 months to prevent her suffering a harm at that time; B is more urgent in how soon she will suffer the harm, A in how soon she must be treated to prevent the harm. Notice that the aspect of urgency of how great a harm the patient will suffer without treatment, Kamm’s urgencyq, is in fact a measure of expected benefit from treatment; this illustrates how potential treatment benefit determines one respect in which patients are worse off. Urgency captures the aspect of who is worse off that is future-directed, but ignores how well or badly off a person has been in the past. I believe that both expected and past health states are relevant to a judgment of how badly off health-wise persons are, not just how bad a person’s health is now. An important application of priority to the worse off is in organ transplantation, where a scarcity of organs exists and many patients die on waiting lists before they receive a needed transplant. An important issue in transplantation, but also in prioritization of any life-sustaining treatment, is whether a patient’s age should be relevant to his or her priority for treatment. In one sense we are distributing organs for transplant, but in a more general sense we are distributing additional life-years—that is the good that the transplant produces. If we want to give some priority to the

worst off, they will then be those who will have had less of the good we are distributing if they are not treated. So consider a 30-year-old patient and a 65-year-old patient, each of whom is in urgent need of a heart transplant. The worse-off patient, other things equal, is the younger patient, who will have many fewer years of life if not treated than the older patient. This priority for the young in life-sustaining treatment has been formulated in terms of fairness as the “fair innings” argument (Harris 1985, Williams 1997). The idea is that everyone deserves a fair chance to live a normal lifespan, and the further one is from having reached a full lifespan, the stronger is one’s claim of fairness for additional years. Since this preference for the young is sometimes criticized as unfair age discrimination against the old, it is important that the argument favoring the young is also specifically in terms of fairness. It is also important to see that this priority to the young is not because they have a greater life expectancy and so greater expected benefit; we might give priority to the 30-year-old patient even if he would only live 10 years after the transplant over the 65-year-old patient even if he would get a bigger benefit by living to 80. Instead of looking forward to expected benefits, this application of priority to the worse looks backward at how much of the good each will have had if not treated.

H OW M U C H P R I O R I T Y S H O U L D T H E WO R S E OFF RECEIVE IN H E A LT H - R E S O U R C E P R I O R I T I Z AT I O N ? The third issue in developing a moral framework for determining what priority the worse off should receive in health care resource prioritization is how much priority they should receive. The reasoning given in support of priority to the worse off may affect the answer. Contractualist reasoning, which requires minimizing the complaint of the person with the greatest complaint, may support maximizing the position of the worst off, or giving the worst off absolute priority. However, giving the worst off absolute priority over others better off for health care resource prioritization is not plausible because it encounters what has been called the “bottomless pit” problem (Daniels 1985). If the worst off are understood, for example, as the very severely cognitively and physically disabled who have an extremely low health-related quality of life, health care interventions and other supportive services may provide them with only

Priority to the Worse Off in Health Care Resource Prioritization very small benefits but at very great cost. If improving their condition is given absolute priority, there may be almost no end to what could be done to provide them with minimal marginal gains, consuming near-limitless resources; greatly expanded medical research on their conditions, even if very unpromising and at very great cost, could also have some very small expected benefit for them. Even if some minimal threshold of significance of benefits must be met for the claim of the worst off to receive priority, great resources would be required to go to the worst off before any needs of others could be met. If we give absolute priority to the next-worse-off group, not just the worst-off group, and maximize the health-related quality of life of each next-most-worse-off group after doing everything possible for those worse off than them, few resources would remain for the important health needs of most of the population who enjoy a higher health-related quality of life. Some balance is clearly required between giving special priority or weight to the needs of the worse off and other relevant moral considerations, such as using limited resources to maximize overall health benefits and to meet the health care needs of those better off. Ideally, we want a principled basis or reason(s) for how much priority to give the worse off, but it is not clear what that principled basis would be. Rather, it seems that most people have independent moral concerns for the worse off and for aggregate health benefits that must be balanced, but no precise weight for the different concerns. John Stone has suggested a Proportional Benefit principle as a way of balancing these two concerns (Stone 2000). For example, if on a HUI a person is seriously disabled and at 0.30 and would be raised to 0.45 with treatment, his proportional benefit is 50%; he would have priority over another patient at 0.60 who would be raised to 0.80 with treatment, thereby receiving greater benefit, 0.20, but a lesser proportional benefit, 0.33. However, this may give too little weight to the worst off in some cases. For example, suppose A is severely disabled and at 0.30 on the HUI, and B is much better off at 0.60. With treatment, A can be improved to 0.40, whereas B can be raised to 0.80. The proportion gain to each is the same and so we should be indifferent between treating A or B on this view. If B can be raised to 0.90, she now gets a bigger proportionate gain than A, and so should receive priority, despite the fact that A’s endpoint with treatment is less than B’s starting point without treatment and that this only increases the

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undeserved inequality between them. But not everyone will find this result problematic, which reinforces the possibility mentioned earlier that most people may simply have two independent moral concerns—for the worst off and for aggregate population health—but with no precise or even broad weights attached to each concern. The balancing required will be more complex than the Proportional Benefit principle suggests because other moral concerns that bear on overall health care resource prioritization and allocation, but not on my focus here on the worst off, must be taken account of as well. Lacking any principled basis for how much priority to give to the worse off, we could ask people, using the person tradeoff methodology with various hypothetical choice scenarios, how much benefit to others they are prepared to sacrifice in order to ensure treatment of the worse off; empirical research of this sort by Eric Nord and others has begun, but the data are still very limited (Nord 1999, Nord et al. 1995, Ubel et al. 1996). Alternatively, we could turn to fair procedures, either political procedures or procedures within private health plans, to make these tradeoffs in real time (Daniels & Sabin 2008).

CONCLUSION I hope it is abundantly clear by now that the question of what priority the worse off should receive in health care resource prioritization raises a large agenda of normative issues that have received far too little attention to date. The full details and complexities of the three questions I have briefly discussed must be systematically explored: What is the moral justification for giving priority to the worse off for health care resource prioritization? Who are the worse off for health care resource prioritization? How much priority should the worse off receive in health care resource prioritization? Moreover, in applying a moral framework for priority to the worse off in health care resource prioritization, it will likely be necessary to distinguish different contexts in which decisions are made—for example, funding different health programs versus selecting among patients for scarce treatment—and the different roles and responsibilities of different decision-makers in those different contexts. I have raised many questions and issues without providing and defending solutions to many of them; in part this is no doubt my own failing, but I believe it reflects as well the quite undeveloped state of serious work on the issues of health care resource prioritization and allocation. Bioethicists and others of a normative bent should get to work.

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1. This paper draws on and extends material in my paper “Health resource allocation for vulnerable populations” in the forthcoming Connecting Ethics and Health Policy, eds. M. Danis & C. Clancy. New York: Oxford University Press. I am grateful to Norman Daniels and Marion Danis for helpful comments on a draft of that paper.

References Brock, D.W. (2003). Separate spheres and indirect benefits. Cost-Effectiveness and Resource Allocation 1:4. Brock, D.W. (2004). Ethical issues in the use of costeffectiveness analysis for the prioritization of health-care resources. in Ethical Foundations of Health Equity, eds. S. Anand & A. Sen. Oxford: Oxford University Press. Daniels, N. (1985), Just Health Care. Cambridge: Cambridge University Press. Daniels, N. (1993). Rationing fairly: programmatic considerations. Bioethics 7(2–3):224–233. Daniels, N. (2008). Just Health: Meeting Health Needs Fairly. Cambridge: Cambridge University Press. Daniels, N., & J. Sabin. (2008). Setting Limits Fairly: Can We Learn to Share Medical Resources? 2nd ed. Oxford: Oxford University Press. Gold, M.R., J.E. Siegel, L.B. Russell, & M.C. Weinstein. (1997). Cost-effectiveness in Health and Medicine. New York: Oxford University Press. Harris, J. (1985). The Value of Life. London: Routledge & Kegan Paul. Hirose, I. (2007). Aggregation and non-utilitarian moral theories. Journal of Moral Philosophy 4. Kamm, F.M. (1993). Morality-Mortality Volume I: Death and Whom to Save From It. Oxford: Oxford University Press. Kamm, F.M. (2004). Deciding whom to help, the principle of irrelevant good and health-adjusted life years. In Ethical Foundations of Health Equity, eds. S. Anand & A. Sen. Oxford: Oxford University Press.

Nagel, T. (1979), Equality, In Mortal Questions. Cambridge: Cambridge University Press. Nagel, T. (1991). Equality and Partiality. Oxford: Oxford University Press. Nord, E. (1993). The trade-off between severity of illness and treatment effect in cost-value analysis of health care. Health Policy 24:227–238. Nord, E. (1999) Cost-Value Analysis in Health-care Cambridge: Cambridge University Press. Nord, E., J. Richardson, A. Street, H. Kuhse, & P. Singer. (1995). Maximizing health benefits vs. egalitarianism: an Australian survey of health issues. Social Science and Medicine 41:1429–1437. Nozick, R. (1974), Anarchy, State and Utopia. New York: Basic Books. Parfit, D. (1991). Equality or Priority, the Lindley Lecture. Copyright Department of Philosophy, University of Kansas. Rawls, J. (1971). A Theory of Justice. Cambridge: Harvard University Press. Scanlon, T. (1998). What We Owe to Each Other. Cambridge: Harvard University Press. Stone, J. (2000). Disadvantage and the Allocation of Health-care Resources. Unpublished Ph.D. dissertation, Brown University. Temkin, L. (1993). Inequality. New York: Oxford University Press. Temkin, L. (2003). Equality, priority or what? Economics and Philosophy 19:61–87. Ubel, P., D. Scanlon, G. Lowenstein, & M. Kamlet. (1996). Individual utilities are inconsistent with rationing choices: a partial explanation of why Oregon’s cost-effectiveness list failed. Medical Decision Making 16:108–119. Walzer, M. (1983) Spheres of Justice. New York: Basic Books. Williams, A. (1997). Intergenerational equity: an exploration of the “fair innings” argument. Health Economics 6(2):117–132.

14 Whether to Discontinue Nonfutile Use of a Scarce Resource F. M . K A M M

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n this chapter, I consider some of the ethical problems presented by the desire to discontinue the nonfutile use of a resource because it is scarce. It might be said that doctors should not do “rationing at the bedside” with patients. Rather, rationing should result from system-wide macro policy that ties doctors’ hands and prevents them from allocating resources as they wish. But, I shall argue, there may be an in-between case: when individuals are involved in trials for use of drugs, treatment to them might be discontinued because they do not do well enough, if and only if treating those who do better makes it possible to treat more candidates who are equally worthy. The drug clozapine, uniquely useful for treating schizophrenia, is taken as an example of such a resource made scarce because of its costliness. I begin by considering relevant available medical data (A), and review current treatment policy involving the drug. Then I isolate three major issues that arise in the morality of discontinuing aid: regression, doctors’ commitments to patients, and the temporal gap between denying aid to one person and providing better aid to someone else. Then I deal with whether differential outcome should affect who gets helped. To examine this topic, I present, in outline, some general principles for the distribution of scarce resources.1 After that I begin to make clear what these principles might imply for the case of differential outcomes with clozapine. In the following sections I consider the role of differential numbers of people who might be helped and the significance of urgency relative to outcome. I attempt to provide a morally justified principle that tells us how to relate the outcome we expect in treating patients to the urgency of patients’ condition and the number of potential recipients of treatment. In conclusion, I consider the fate of those who are only moderately ill and suggest a possible change in policy

that might be of benefit in achieving just distribution to them.

BACKGROUND Suppose that clozapine is the most effective treatment for schizophrenia, helping people who would not otherwise be helped, helping people more than alternative treatments, and causing fewer side effects. However, suppose it is more expensive than other treatments, at least in the short run. Whether or not it is overall more expensive than other treatments depends upon the outcomes it produces. In some people clozapine treatment essentially results in a return to normality. These people can leave hospitals, so hospital beds could be eliminated. Such patients must continue to take medication, costing about $5,500 per year. But they can become self-supporting, returning to work and family. This implies they could themselves fund their medication. In this population, clozapine is overall less expensive than other treatments. Other people show only moderate improvement, both in the sense that the difference between their condition with clozapine and without it is not great and in the sense that they do not return to normality. These people must continue the drug in order to get benefits that only this drug can provide to them, but they cannot live independently. They may move to outpatient facilities, supported by both state and federal funds, or they may have to remain in state-run hospitals. In this population, clozapine use is overall more expensive than other treatments. In a third group, clozapine produces no differential benefits over other drugs. However, the possibility that it produces fewer side effects, even if it is no more effective than other treatments, raises the question of whether its use is nonetheless indicated.

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Suppose that there is no way to tell before treatment into which of these three groups a person will fall. For example, there is an equal distribution of big successes (normality) in severe and non-severe patients. However, once someone is on treatment, one can tell within 6 months whether that person will respond, and to what degree. Assume that when clozapine must be provided at public expense, it is a scarce resource in virtue of its costliness. A significant ethical problem that arises is whether to continue treating those who cannot pay for their own treatment and who make only moderate gains that do not lift them to normality. This is one of the most expensive groups to treat, and discontinuing their treatment would allow us to help more people become normal. In other words, should the maintenance of someone on the scarce resource depend on the outcome it produces? At present, it is said, the publicly funded treatment policy being followed is essentially twofold: (1) Keep on treating all those who achieve normality on the drug. (Indeed, this is taken for granted.) (2) Give medication in accordance with the severity of the illness and keep on treating even those who improve only to a subnormal level. This means that others who, at the start, are not so severely ill but who might achieve normality are not treated. For prongs (1) and (2) of this policy to be consistent, it must be assumed that most of the normals who are continued on treatment would be severely ill without treatment, even if not all the severely ill who are treated attain normality.

I S S U E S S P E C I F I C TO DISCONTINUING T R E AT M E N T The decision to stop treatment of those who are achieving a moderate level of well-being—the rejection of prong (2)—in order to try to increase the number who can achieve normality raises several ethical questions. The first is whether there is a moral difference between (a) not beginning treatment that would help someone achieve only a moderate level of well-being in order to help others more, and (b) terminating such treatment once it has begun in order to help others more. All the issues (for example, concerning action vs. omission) that are familiar from the discussion of discontinuing life-sustaining treatment might be thought to arise here. It could be said, however, that not giving yet another dose of a drug is not the same as terminating (by action) a life-support

system. At most, it is like a case involving a lifesupport machine that needs to be reset every day. Then the issue is also whether it is permissible to omit resetting it. Whatever the philosophically best way to treat the termination-versus-not-beginning issue may be, psychological studies suggest that if people form expectations about future treatment on the basis of past treatment, this will set a baseline from which non-continuation of treatment, even by failure to give another dose, will be perceived as a loss. For those who have not yet received treatment and have not formed expectations about getting treatment, not being treated will be perceived as a no-gain. Losses tend to be rated more negatively than no-gains, even when they both leave the patient at the same absolute level of well-being. Is this a reason not to terminate drug use, even when we may refuse to begin it? It is possible that one could prevent the development of expectations concerning further treatment by explicitly warning people that beginning treatment does not guarantee that treatment will continue. Then the expectation of treatment would not be a reason to continue, since there would be no expectation. Furthermore, ceasing treatment should then be seen as a no-gain rather than as a loss. Deliberately characterizing the first 6 months of use of the drug as a trial may succeed in stemming expectations. But, of course, there might be other reasons not to stop treatment. For example, if we are clear about what terminating treatment with clozapine causes in a patient, we may see another ground for objecting to it. Theoretically, there are two possibilities for the trial: (a) treatment must be continued for up to 6 months in order for us to know (by some sign) if someone will become normal, and there is no change in the patient’s condition during that time period; (b) treatment must be continued for up to 6 months in order for us to know if someone will become normal, and there is an improvement in the patient’s condition during that time period. It may be (b) rather than (a) that raises a moral problem. In (b), terminating treatment does not merely stop a patient from achieving further progress (as it may in (a)); it allows the patient to regress, to fall back down to the level from which he was already lifted. It is not stopping treatment per se, even when we know this will prevent some future improvement, that seems morally significant relative to not starting treatment. What seems morally significant is stopping an improvement in the patient’s condition that has

Whether to Discontinue Nonfutile Use of a Scarce Resource already occurred by stopping what was already being done to achieve it. The latter condition is important. For suppose a regress would occur unless we increase the dosage already given. I do not think refusing to prevent the regress in order to help others instead would raise the same concern. It is not the regress per se but its occurrence as a result of not continuing to do what was done before that may be problematic. (Call this regression*.) This concern with regression* assumes that improvement to a point below normality is still better than being in a much worse condition. Some may challenge this assumption. They might point out that some who are severely mentally ill live in a world of pleasant delusions. When they recover partially, they become aware of their problems and for the first time experience misery. Several points can be made in response to this challenge. First, if severely ill schizophrenics are already very miserable, the challenge does not apply to them. Second, the challenge depends on a completely experiential conception of the good life: What you do not experience as bad is not bad for you and there are no non-experiential goods that compensate for experiential harms. If this were a correct conception of the good life, it would imply that a good life could be had by taking drugs that give one pleasant experiences and the illusion of living a productive life. It also denies that pain experienced in coming into contact with reality can be compensated by the mere fact that one is in contact with reality. There is much to be said against the experiential conception of the good life. A doctor who omits further similar treatment may think of herself as fully responsible for the decline in a patient and think that “producing” this decline is worse than not aiding the patient to start with. Yet a philosopher might reasonably argue that it is as permissible (or impermissible) not to continue aid one has been providing as it is not to start aid even if the patient declines, so long as she declines to a state that is no worse than she would have been in if aid had not begun and there is no independent commitment to continue aid once started. But is one worse off if one improves for a few months and then declines than if one has never improved at all? I do not believe so, for if all we could ever do for any patient was improve him for a few months before a decline, doing so would be better for him than not. Admittedly, a doctor has a duty to aid (unlike an ordinary bystander), but even with this duty, a doctor may refuse to start helping one patient in

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order to help a greater number of other patients. Why then may she not stop the aid once started, in order to help others more, if the patient will be no worse off overall and being in the trial gave him a chance? Must the fact that the patient gets worse again through failure to continue what has already been done be definitive? It is inappropriate to apply the Hippocratic doctor’s concern with not harming above all to the patient’s decline. First of all, the doctor would refuse to continue aiding. This is not, strictly, harming. Furthermore, looking only at what happens if we do not continue aid relative to the patient’s improved condition considers too narrow a time slice; it fails to consider the overall period from before the doctor intervened. The doctor produced the improvement and would not have been duty-bound to do so if he could alternatively have helped more people. Not helping someone retain an improvement and instead helping others may be aesthetically less pleasing than not helping to start with—declines to a level may be less pleasing than maintenance of a status quo at the same level—but it is not clear that it is morally different. This brings us to another objection to terminating treatment based on the idea that a doctor might simply become committed to a specific patient once treatment starts. I do not believe that this gives rise to an obligation to continue aid in all cases. Commitments may be overridden, for example, by the attempt to help greater numbers of people, especially if these are also one’s patients. In addition, commitments might be undertaken by doctors in an explicitly conditional form, for example: “You will be provided with a drug, on condition no one else needs it more.” It may be part of the responsibility of patients to accept that their useful treatment may be stopped for morally legitimate reasons. Most importantly, the idea of a commitment to a patient suggests that a doctor would be wrong to stop treatment that had not yet had any effect on the patient when he knows that continuing treatment will lead to some improvement in the future. But I do not think the doctor would be wrong to drop treatment for such a patient in order to offer it to others who can reach normality. All this suggests that it is regression* that is problematic, not failure of commitment or simple termination of treatment. It is true, however, that playing down doctors’ commitment to individual patients makes the establishment of special bonds (comparable to the ones we form with friends or family members) impossible. These bonds are thought to impede

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meeting even the more pressing needs of other people. Should we exchange the possibility of a committed relation between doctor and patient for fairer treatment? The suggestion is that we could morally afford to do so by having trials that can be ended. Finally, there are particular facts of the clozapine case that further complicate the decision not to continue aid to someone in order to help others more. Terminating aid in order to definitely help others more is different from terminating aid to go searching for others who will do better. In the latter case, we cannot be sure that we will be helping the next person more than we are helping the person already being treated, and it will take up to 6 months to find out. The person on whom we try our drug next may do no better, and possibly worse, than the person we dropped. If he does worse, this means that we could have been doing more good by having continued treatment for the first patient. What if he and subsequent trial subjects do only as well as the person dropped? It might be argued that this is still a better outcome, since there is a fairer distribution of moderate improvements. For example, instead of n months of moderate improvement going to one patient, m patients each get months of moderate improvement. If we had to distribute the good of moderate improvement to begin with, we might well divide it over several people rather than concentrate its duration in one person, so long as what we distribute is still a significant good. (Notice that this is not the same as saying that we would deny normality to someone by dividing a normalityproducing dose so as to produce only moderate well-being in many.) Regression*, of course, might be a countervailing consideration to such a fairer distribution of moderate improvement. Further, there is at least a chance that the drug will prove very successful in the next person, and this is no longer true of the person we would drop. The probability of finding people who do better is an empirical question, and we may be reluctant to stop helping one person unless there is a sufficiently high probability of helping others more in the near future. This last point makes salient the time gap that can exist between stopping aid to one person and finding another person whom we can help reach normality. At worst, it is possible that by the time we find someone who does better and help him, we may no longer be helping someone who was suffering at the same time as the person we originally dropped. If this is so, we will have put off

helping someone now with the consequence that we help others more who will suffer in the future. This raises the question of whether we should adopt an attitude of temporal neutrality, not distinguishing between people who need help now and those who will come with need later. (I shall return to a related issue below.)

S E V E R I T Y, O U T C O M E , A N D A G E N E R A L T H E O RY O F DISTRIBUTION Here is another ethical question raised by the decision to not continue treatment of those who are achieving moderate well-being in order to increase the number who can achieve normality: Should the attempt to achieve normality for some lead us to deprive others of their chance for moderate improvement, even if these others are more severely ill than those who would be substituted for them in drug trials? This question arises independently of the possible moral problem of stopping treatment, for theoretically it could also arise in cases where we just do not start to aid someone. This question has two subparts: (a) Should better outcomes dominate equal chances for help? (b) Should better outcomes dominate greater severity? In this section, I shall deal with (a). It will be useful to first present some general principles for distributing scarce resources. I have elsewhere attempted to describe a distribution procedure that takes account of four factors: need (N), urgency (U), outcome (O), and waiting time (WT).2 Factors besides these four may be relevant, but, I believe, one should not start by over-cluttering the picture. In general, the method is to begin with two factors, holding others constant in the background, and see what the relation is between these two factors—for example, which takes precedence over the other. Then we introduce a third factor and see whether it makes a difference to the relationship between the first two factors as well as how the third relates to each of the two others. If we follow this procedure patiently, adding additional factors in an orderly way, we have some hope of making progress. Let me first describe three of the four factors, N, U, and O. A patient’s urgency (U), as I use the term, is a measure of how bad his future prospects are if he is not treated; it is a function of how bad his future will be and the likelihood it will come about. (This is not quite the ordinary notion of urgency, which also focuses on how soon treatment is needed. Someone could face very bad prospects but not need treatment to avoid them as

Whether to Discontinue Nonfutile Use of a Scarce Resource

Now consider conflicts when the individuals are not equally needy. Figure 14.1 represents a choice between saving A on the one hand, and on the other, saving B and curing C’s sore throat with leftover medicine. The overall outcomes will be different depending on whom we save, since more good, spread over two people, will occur if we save B and C. My claim is that we should treat the difference in outcome as morally irrelevant. The reasoning behind this is as follows: From an impartial view, we should not favor A over B per se (given that they are assumed alike in themselves in all morally relevant respects). If they were alone (independent of C), we should give them equal chances. From the impartial perspective, we also see that A and B each has his own partial point of view; A prefers his own survival to that of B, and vice versa. It is important to each, therefore, that he retain his equal chance to survive. The fact that we could save C from a sore throat is a matter of minor importance to him, he is not very needy or urgent, and, in addition, the difference in outcome achieved by helping him is small. These three points lead to the conclusion that we should not deprive A of his 50% chance of survival merely to also help C. Hence, C’s cure should be a morally irrelevant good in choosing between these people. (This contrasts with the view that we should aggregate the gain to B and C and help them because we produce a benefit that is larger than the benefit possible to A alone. Notice that the grounds for ignoring the small extra good is not simply that we should not think of such matters in life and death situations. Because it would not be wrong to choose between two decision procedures that give A and B an equal 50% chance on the grounds that using one procedure will magically also cure a sore throat.)

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soon as someone else, in which case the ordinary notion says his need is not as urgent.) Need for treatment (N), as I use the term, connotes how badly someone’s life will have gone overall if that person is not treated. Unlike urgency, need is not merely a forward-looking concept; it takes someone’s whole life into consideration. Person A could be more urgent than B, in that A will die in a month if he is not treated now and B will die in a year if he is not treated now, and yet B could be more in need (of life-giving treatment) because he would die at age 20 whereas A would die at age 60. This assumes that one will have had a worse life overall if one dies at 20 than if one dies at 80 (other things equal). Since need takes into account someone’s past, about which one can no longer do anything, it implies that how we treat someone in the future could at least compensate someone for the past, and that such compensation could be as morally important as preventions of harm in the future. (This may be a contentious assumption.) Outcome (O) refers to the expected difference that treatment will make. In cases where life and death are at issue, I believe that the relevant measure of outcome is additional time alive independent of quality, so long as the patient would find the quality of life acceptable. This means that in life-and-death cases, we should not use QALYs (quality-adjusted life-years) in evaluating different possible outcomes. In cases where life and death are not at issue, outcome is appropriately measured in terms of (some types of) quality-of-life differences, such as relative freedom from the symptoms of schizophrenia. What are some of the things we can say about the relative weights of N, O, and U? First, let us consider distribution of a scarce, life-saving resource between A and B, holding N, U, and O (as well as any other factor) constant. Fairness requires giving each an equal chance. It is important to understand that giving equal chances is not a symptom of the desire not to be responsible for making a choice. It is, rather, the fair way to choose when there is no morally relevant difference between potential recipients. Now add a third person, C, whose N, U, and O are the same (and who can also be saved only if we save B). What I call the Balancing Argument (I) claims that in such a case, justice demands that each person on one side should have her interests balanced against those of one person on the opposing side; those who are not balanced out in the larger group help determine that the larger group should be saved. Hence, the number of people saved counts morally.

169

v.

A Life

+

B Life

FIGURE 14.1: The Sore Throat Case.

C Sore throat

This form of reasoning gives equal consideration to each individual’s partial point of view from an impartial point of view, so it combines subjective and objective perspectives. Hence, I call it Sobjectivity. It implies that certain extra goods (like the throat cure) can be morally irrelevant; I call this the Principle of Irrelevant Goods. Whether a good is irrelevant is context-dependent. Curing a sore throat is morally irrelevant when others’ lives are at stake, but not when others’ earaches are. The Sore Throat Case shows that we must refine the claim that what we owe each person is to balance her interests against the equal interests of an opposing person and let the remainder help determine the outcome. If small increases in good to a person are sometimes morally irrelevant, this can help provide one reason why someone who has a big and even irreplaceable effect on society in aggregate should not necessarily be favored in the distribution of a scarce life-saving resource over someone else. If the big effect amounts to only small effects on the lives of many people, then these effects should not, I believe, be aggregated so as to help outweigh the claim of someone else to have 50% chance to have his life saved. Aggregating small benefits to many people, none of whom is very needy or urgent, to outweigh the grave need of a single person can be even more problematic than aggregating saving a life and providing such small benefits in order to outweigh someone else’s equal chance to live. Such a problematic procedure would be exemplified by public policies that, for example, provide marriage counseling to the great number of people who will need it rather than provide care for a far fewer number of the severely schizophrenic. Suppose (as in Fig. 14.2) that if we save B, we can also save C’s arm. This is the prevention of a large loss to C. I believe that when the loss to C becomes so significant, it is no longer an irrelevant good, given that we can only save one life no matter what we do. This is true even though C does not stand to lose as much as A or B and so is not as needy or urgent as each of them. Explaining why this moral shift occurs when the good to another person is large is not easy, and I shall not attempt it here. This shift would mean either that we should give the treatment outright to B and C or at least that we should give them a greater proportional chance of getting the treatment. What if the extra good is concentrated in the person whose life would be saved? For example, suppose we could save A’s or B’s life, but, if we

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access and rationing

v.

+

A Life

B Life

C Arm

FIGURE 14.2: The Extra Arm Case.

save B, we could also save him from having a sore throat, which A will suffer if she is saved. Here the need and urgency of A and B are the same, but the outcome each presents is different. My claim is that the sore throat is an irrelevant difference in a decision of life and death, and we should not deprive A of her chance to live because of it, even though no more than one person can be saved. Suppose we could save A or B, but, if we save B, we will also prevent his arm from falling off, whereas A’s arm would fall off anyway. Is the saving of an arm here a morally relevant good that should incline us to save B rather than A? (See Fig. 14.3.) I believe that B’s arm is morally irrelevant. Further, I think, this is consistent with my conclusion earlier that C’s arm is relevant in Figure 14.2. When the improvement in quality of life would occur in the very same person for whom the primary good at stake is life itself—that is, when the good is concentrated rather than distributed—I believe the additional good we can do him should

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170

v.

A Life without arm

B Life with arm

FIGURE 14.3: The Life-with-an Extra-Arm Case.

not necessarily lead us to deprive A of her chance at a life that she finds acceptable. Two principles underlie this conclusion. First, we are more concerned with helping someone avoid a very bad condition than with providing the very same person whom we help in that way with an additional improvement. Second, each person wants to be the one who avoids the very bad condition and come close to being normal. (The fact that A might be willing to run a risk of death [in surgery] to be saved with an arm rather than without one does not imply that he would run a greater risk of death so that B can have a greater chance at being saved with an arm.)3 Finally, suppose we have a choice between helping one person, A, who will be very badly off and much benefited by our aid, or helping a couple of people, B and C, each of whom will be as badly off as A but not benefited as much by our aid. So long as the lesser benefit is significant, it is morally more important, I think, to distribute our efforts over more people, each of whom would be as badly off as the single person, rather than provide a bigger benefit concentrated in one person (other things equal). One way to analyze this situation employs what I shall call Balancing Argument (II): Find the part of the potential large gain to A (part I) that is balanced by the smaller gain to B. Now we must decide how to break that tie between them. If we care about giving priority those who are worst off, we will care more about benefiting the next person in the group, C, rather than giving an additional benefit (part II) to A, who, having received part I, would already have more than C. This means that instead of breaking the tie between A-with-part-I and B by giving A a greater benefit, we break the tie by helping two people, each to a lesser degree.

CLOZAPINE AND DIFFERENCES IN OUTCOME IN A T WO - P E R S O N C H O I C E In the case of clozapine, we are considering whose quality of life to improve, not whose life to save. Again, let us assume at this point that need and urgency are great and constant between people, but that outcomes will be different. Also let us assume for the time being that the only two people affected by our choices are A and B, and they can both be improved only by clozapine (see Fig. 14.4). Assume B will be improved slightly beyond A, to the point of normality. The view most clearly implied by my previous discussion is that in this

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171

Normality v.

A

B

FIGURE 14.4: Two Person Choices: The Normal Person Cases.

case we should not deprive A of his equal chance to make what is a more critical change from a very bad condition to being close to normal, just in order to bring B first close to normal and then make the further, less critical move slightly beyond to normality. The principles that underlie this conclusion are (1) we are more concerned with helping someone avoid a very bad condition than with providing him with an additional improvement, and (2) each person wants to be the one who avoids the very bad condition. Here is an alternative view: Normal mental health (which need not mean perfect mental health) is a unique kind of good. It is closely associated with the characteristics that are commonly thought to account for the moral importance of being a person at all: rationality, self-control, capacity for responsible action, etc. The difference between normality and its absence is not just a matter of degree like the difference between perfect pain relief and some degree of pain. Improvement to a moderate level of mental health is a good for the person who is ill, as is improvement to normality. But normality is also more than a good for the person; it helps account for the importance of the person. Being in normal physical condition does not have a comparable role. We might, therefore, see achieving it as an especially important goal that represents more than just an additional benefit to someone who already will have achieved the most important part of what is good for him. Call this the Mental-Special View. Here is a possible implication of it: Avoiding a truly horrifying mental condition could be so important that we should not deprive A of his equal chance to avoid it and improve to a substantial degree just so that B can also achieve normality. But if A and B are moderately ill, the good of B’s becoming normal could override A’s chance. This comes

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close to a guarantee that we will focus on rescuing someone from a very bad fate if we can bring him up to a minimum level. Having done that, we will maximize outcome (i.e., produce normality where we can). Here is another implication: Suppose we could improve many moderately ill people a significant amount but not to normality by dividing a dose that would produce normality if given to one person. We should not divide the dose. (Here is an analogy with another domain. We can improve the artistic abilities of many people who are already moderately good at art to another level or we can invest in producing one great artist. We should do the latter, but not necessarily because we do a great deal of good for the person who becomes the great artist, but just because we produce a great artist.) But now suppose that with clozapine we can improve B’s condition greatly and improve A not very much. We might imagine two different variations: (1) B is still not normal, and (2) B is normal. For present purposes, we need not worry about this distinction. I shall not consider the possibility that we could make someone superior to normal. (See Fig. 14.5.) Even someone who rejects the Mental-Special View could believe that when the difference in mental condition that we can produce becomes quite great in this way, it may be morally appropriate to favor the person in whom we can produce more good, given that need and urgency are equal in both. This means that the principle that we are more concerned with helping someone avoid a very bad fate than with providing additional improvement does not imply that avoiding the worst fate is all we are concerned about. At least when we are also helping someone avoid the same very bad fate, our greater concern is

v.

A

B

FIGURE 14.5: Two Person Choices: The Below Normal case.

combined with a lesser concern to produce additional significant improvement, and this may override concern for equal chances to avoid the very bad fate. However, the worse A’s and B’s conditions are in absolute terms without the drug, the harder it is for extra good in B to overcome the claim A has to an equal chance for significant improvement. The fact that the better A’s and B’s conditions are in absolute terms, the easier it is to override equal chances by a great good, makes this position close to a position requiring a guaranteed minimum beyond which we can maximize. (Notice that we can favor the person in whom we can produce much greater quality of life in non–life-and-death cases, even if the same sort of quality-of-life distinction does not count in life-and-death cases.) Let us change one of our assumptions and imagine that candidate B, but not A, is susceptible to moderate improvement with a drug other than clozapine—call it “mozapine”—that is not scarce. B will not improve on mozapine as much as on clozapine, but he will improve as much as A would improve on clozapine. Suppose one of our principles is that we are more concerned with helping someone avoid a very bad fate than with providing additional improvement. Does this imply that we should make B ineligible to receive clozapine, for we can then treat both A and B, moving each away from a very bad fate? Not necessarily, since if we treat B with clozapine and he attains normality and self-sufficiency, he will be able to pay for his own maintenance on clozapine. We (i.e., public institutions) will then have money with which to treat A with clozapine as well. The trouble is that we may have to wait at least 6 months before we can treat A in this way, whereas if we keep B on mozapine, we can treat A right away. The question is whether some extra months of suffering on A’s part are worth the goal of producing normality in B. The answer may vary depending on how bad A’s condition is.

HELPING MORE PEOPLE Now, we turn to the additional crucial factor in the clozapine case that we have so far deliberately ignored: more people can be helped if some rather than others are helped. Suppose that if and only if B is treated rather than A will money be freed up from his care so that someone else can be treated as well. This is because only B achieves normality. Suppose that all those who might be treated have the same need and urgency, and these are great. Then only if we treat B can we treat another

Whether to Discontinue Nonfutile Use of a Scarce Resource

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person, C, who is as needy and urgent as A is (by hypothesis). This is a determinative reason for treating B rather than A, at least if the improvement in C is significant. But now suppose we had to choose whether to help (1) B and C or (2) B and D, when C will improve to a moderate level but D will achieve normality. If money is freed up only if we help someone who becomes normal, and E (with the same need and urgency as A and a possibility for a significant outcome) is also waiting, then we should treat B and D rather than B and C (or A), since we can then treat E as well (see Fig. 14.6). The principle that accounts for these judgments is that when need and urgency are constant, we ought to treat whomever allows us to treat as many people as possible, at least when the greater number of people will be helped significantly. Above, I argued that we should not choose B over A when only these two people are in great need of help just because B will do better. Hence, if we should help B when other people’s welfare is at stake, this implies we are treating B as a means, though not as a mere means. Several objections may be raised to this analysis. The first objection is connected to the last point: The problem, it may be said, is not that we choose to help one person in part because he allows us to help others. The problem is that the person who is not helped is treated merely as a means. Consider the following example: If we face a choice between saving a doctor and a teacher, the fact that the doctor will be irreplaceable in saving lives should not mean that all the lives he will save (an indirect effect of the resource he gets) are counted on his side against the teacher. It might be suggested that this is true because the person who would not be selected for aid would be inappropriately evaluated from too instrumental a point of view, and not sufficiently as an endin-himself. That is, because he is not useful in saving others, he is rejected for treatment. Is this not, it may be said, how the person who improves

Normality

A v. B + D + E v. B + C

FIGURE 14.6: The Case of Multiple Persons Choices.

173

only moderately on clozapine is treated? But consider the following case (B): We have a scarce resource to distribute, and if we give it to A, he can then also carry it to another person, C, who needs our resource. B cannot do this. In this case, it is permissible, I think, to select A over B, excluding B since he cannot be instrumentally useful. Doing this helps us to better serve those who directly need our resource. Hence (surprisingly), it seems it is not essentially distinguishing persons on the basis of their instrumental role that determines if our behavior is objectionable, but whether we are using our resource for its best direct effects. Similarly, in the clozapine case, we select someone who will allow for the best direct use of our supply of clozapine.4 Second, it may be said, there is a difference between (a) denying someone treatment (either by not starting it or terminating a trial) in order to treat a greater number of other people here and now, and (b) denying someone treatment in order to treat a greater number of people later. Suppose we should give preference to the here and now. But, by hypothesis, we cannot treat B, D, and E simultaneously, since we must wait for B to recover in order for money to be freed up to treat D, and for the same reason we must wait for D to recover before we treat E. Theoretically, it could be a year before we get to helping E, if it takes 6 months each for B and D. Hence, here and now, it is a choice between A and B, and so, it might be said, we should toss a coin between them. However, even if we accept the correctness of giving preference to the here and now, we can answer this objection by noting that D and E do here and now need to be treated. Therefore, even if we cannot treat them until later, their case is different from the case of persons (statistical or even identifiable) whom we predict will need care in the future. However, a third objection is waiting. We have assumed that we know that B and D will achieve normality, but in reality, the problem is that we do not know who will achieve normality. So, at the time we must choose between A and B, we have no reason to believe B will do better. However, suppose we have already treated A for 6 months and he improves only moderately. Then there is at least a chance that B will achieve normality but none that A will. If we drop A, we would do so in order to go searching for someone who will achieve normality so that we may help a greater number of people. Therefore, even if numbers of those we can help matters morally, we must decide whether it matters more than (a) dropping someone after we

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have started treatment, in order to (b) only possibly help someone else more, in order to (c) only eventually help a greater number. I suggest that when there is as yet no change in the patient’s condition, the moral appropriateness of doing this depends on how long it will take to find someone who will achieve normality and whether we are doing as much good in the interval as we would have done with the person dropped. Suppose that instead of 6 months, it took only 1 day to find out who would be normal (1-Day Case). I suggest that objections arising from (a), (b), and (c) would then not be weighty, and we could morally afford to go searching for those who will allow us to treat the greater number. This suggests that what is problematic in the real case, where we must wait 6 months before we know if someone will be normal, is not (a), (b), and (c). Rather it is the possibility of a lengthy time during which no one is being helped who will increase the numbers helped as much as or more than A can. But notice that what happens in 1 day in the 1-Day Case could be our knowing that someone will achieve normality, without his achieving it for 6 months. So we may still have to wait 6 months before treating someone else. When the payoff of treating more people is not achieved quickly, do factors (a), (b), and (c) loom larger again? I suggest not. This implies that it is morally more important, at least when the person dropped has not yet improved, how long the gap is between dropping him and beginning treatment for someone else who will achieve normality, rather than how long the gap is between dropping him and treating a greater number of people. What if A has already improved before we contemplate dropping him? Does the speed with which we can identify and begin treatment of someone who can become normal affect the permissibility of dropping A? If one thinks that doing what leads to a patient’s regression* is impermissible, the speed with which we find others to treat more successfully will not affect the impermissibility of dropping A. If regression* is not a barrier to helping a greater number of other people, the speed with which we can identify a candidate who will be normal and producing sufficient good should increase the permissibility of dropping someone.

CONFLICTS OF URGENCY AND OUTCOME IN A T WO - P E R S O N C H O I C E We have been assuming that all candidates for clozapine have the same need and urgency, and

just varying outcomes. Now we come to deal with whether outcome dominates difference in severity. But degree of need and degree of urgency may themselves differ in the candidates. For example, there may be unequal need (as I have defined it) but equal urgency: Suppose A is 20 years old, has had 10 years of severe mental illness, and faces a bad future. B is 20 years old, has experienced moderate mental illness for the past year, and faces as bad a future as A. There is unequal need here, since A’s life will have gone worse overall if he is not treated than B’s life will have gone if he is not treated. The type of case I wish to deal with in detail involves holding pasts equal, but varying urgency. How do we deal with differences in outcomes when some will be worse off than others if not treated (i.e., they are more urgent)? Let us start with two-person cases. An easy case of this type is represented in Figure 14.7, where U stands for urgency and O for outcome, and the numbers indicate the degree of each. Here A is both more urgent and promises a better outcome (normality) if treated. Here there is no conflict between taking care of the person who would be worse off and treating the one who will produce the best outcome, at least if the difference in urgency is significant. But, of course, in another case, a conflict could arise between helping the person who would be worse off if not treated and producing the best outcome (normality). For example, see Figure 14.8. If U10 is a very bad prospect and O5 is a significant outcome that lowers A’s urgency to the level at which B is already, then it might be argued that we should first improve the condition of the worst-off person, A, before producing a bigger benefit that goes to someone who is already better off. This follows from maximin, which is based

U5

U10 v.

O20

A

O10

B

FIGURE 14.7: The Case of Greater Urgency and Outcome Coinciding.

175

Whether to Discontinue Nonfutile Use of a Scarce Resource

U5

U10 v.

O5

A

O20

B

FIGURE 14.8: The Case of Urgency and Outcome Not Coinciding.

both on a principle of fairness between people and the idea that we produce a morally more valuable outcome if we give even a smaller outcome to a worst-off person. It even follows from a nonmaximin principle, such as trying to bring those very badly off in an absolute sense to a minimal level, even if not always favoring the worst off. An alternative position argues that we need not always favor the worst off, even when they are very badly off and we could make a significant improvement up to a minimal level, if we can produce a much greater benefit in the life of someone else. We should show that helping the worst off counts for more than mere good outcome by assigning a factor with which we can multiply the outcome score of the worst off, in accord with the absolute (and relative) badness of her condition. This means that we give the worst off an edge, but someone less badly off and with a better outcome could always win out. (Presumably, it would take a bigger outcome in the less urgent to override urgency than the outcome it takes in someone equally urgent to override equal chances.) All these policies on how to deal with conflicts between urgency and outcome conflict with certain claims made about current clozapine policy (A). For example, it is said that treating in accord with urgency and jeopardizing better outcomes is “against intuition.” Policies I have described favoring the worst off claim that it is not against intuition to do so. (Of course, given that urgency is no indication that clozapine will not lead to normality, sometimes there will be no conflict between favoring the urgent and producing the best outcome.) It is also said that “no one argues against treatment where there is a dramatic response”—that is, marked reduction of symptoms and restoration of normality. If this means that no one could reasonably argue against treating the most urgent who

become normal, that should be true. But if it means that no one could reasonably argue against treating those who would not be the worst off without treatment but who can achieve normality, that is not true, at least in the two-person case.

HELPING MORE PEOPLE AND HELPING MORE URGENT PEOPLE Let us expand our conclusions about conflicts between urgency and outcome to deal with the additional crucial factor in the clozapine case, namely that the number of people we can help may depend upon whom we help. Suppose A is more urgent than B but only B can achieve normality. (This assumes, hypothetically, that we could know before treatment who will become normal.) Suppose C is as urgent as A is and will produce as good an outcome. We free up money to help C only if we help B. So, should we help B and then C rather than A? (See Fig. 14.9.) That option seems peculiar. For if C is already in need now, why would we not choose to help him immediately? That is, why isn’t it just a contest between A and C? The only answer available is that if we treat A or C first, we will never get to treat B, since A or C will not free up money for another patient. Here, we are asked to consider letting a more severe patient suffer for some months while we treat a less severe patient simply because this allows us to treat both. Suppose we can help B and C or B and D but not both sets. D is as urgent as C (and A), but D and not C will achieve a normal outcome. Suppose E, who is as urgent as C but cannot achieve normality, is waiting to be treated. Only if we help D can we also help B and E, and so we should do this rather than helping B and C. We can then help

U10

U10

U5 v.

+

O5

O20

O5

A

B

C

FIGURE 14.9: The Case of Helping More People.

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two people who are as urgent as A instead of one. (See Fig. 14.10.) One way of interpreting the general principle at play here is as follows: Pay attention to better outcomes when these conflict with urgency only if this makes it possible to significantly help more of those who are as urgent as those we might otherwise have helped. We do not favor those who give better outcomes per se; we favor them only when it helps us treat more who are urgent. Realistically, however, there will be no reason to think, at the time we make a choice, that someone as urgent as A will not have as good a chance of reaching normality as B and, hence, freeing up resources. It is also more important to treat the most urgent. So, it seems unlikely that it ever makes sense to treat the moderately ill B instead of someone more urgent. This means we should look for those who can produce normal outcomes among the urgent people only. (For one radical alternative to this, see below.) Also, realistically, we cannot know that A will not produce a normal outcome until we treat for 6 months. On the basis of our previous discussion, we can see that two issues then arise. First, may we stop treating A to test another urgent person for restored normality, or does regression* matter morally? Second, does it matter how long it is expected to take to find someone who will respond better than A and how much good we produce in the interval? On the assumption that there are now always additional urgent cases who could reach normality, and that it is not always wrong to stop or not start treating the most urgent who confront us, we should drop those who are urgent but have only moderate outcomes after 6 months of treatment, in order to search for those who are now urgent and who will achieve normality (so long as the probability of finding these is sufficiently high and sufficient good is done in the interval of the search).

U10

U5 v.

This policy, however, gives lexical priority to helping as many of the worst off as we can. As noted above, an alternative is to give only somewhat greater weight to claims of the worst off or focus on them only if they are below a minimal state. Then we would not ignore better outcomes in the less urgent or do whatever is necessary to maximize the number of most urgent people who get treated. This might mean taking care of moderately ill people who will achieve normality in order to increase the number of moderately ill who achieve normality.

T H E M O D E R AT E LY I L L Most importantly, if there were no more urgents to treat who could achieve normality, a maximin policy says that those urgents who could achieve only moderate outcomes should be favored over other patients who were already only moderately ill regardless of the outcomes they would produce. Here is where the concern for treating the worst off comes into real conflict with the desire to produce good outcomes and with the desire to treat as many patients as possible. For if we treated moderates rather than those urgents whom we know cannot achieve normality, we might achieve more cases of normality (albeit in those only moderately ill). Of course, if a policy of treating moderates who become normal freed up enough money to bring more urgents up to the level of moderate well-being in a reasonable time, we would get the benefits to moderates without too great sacrifice to urgents. A radical alternative that opens up more possibility for treating the moderately ill suggests itself. If we continue treating only those urgents who will become normal, they will wind up better off than those who were moderately ill to begin with. Out of fairness, we might stop fully treating the urgents at the point where they become moderately well—assuming we could maintain them

U10 +

U10 +

U10 v.

O5

O20

O20

O5

O5

A

B

D

E

C

FIGURE 14.10: The Case of Producing More Normal People.

Whether to Discontinue Nonfutile Use of a Scarce Resource at that degree of moderate well-being if full treatment did not continue—and then decide whether to bring them or those who were already moderately ill (independent of clozapine) up to normality. This proposal may strike many doctors as morally problematic: it would have them stop treatment although more good for a patient could be achieved. However, it is not problematic in the way regression* is, and I have already argued that commitment to one patient is not necessarily a strong enough consideration to override concern for other patients. Of course, in this situation, it is just a concern for fairness rather than greater outcome that is driving the proposal, since either patient (it is being hypothesized) could become normal. A problem with this proposal is that we lose cost-effectiveness, for we will use some of our clozapine resources to keep some people who would be urgent at the level of only moderate well-being. Those who survive at a moderate level without clozapine are costly because they require institutionalization, but they are not as costly as those who require institutionalization and also require clozapine treatment to achieve moderate wellbeing. Furthermore, when we partially treat a patient who could become normal to search for a moderate who could also be normal, we give up on a sure bet for many possible failures followed by a random choice.

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Notes 1. These are principles I have (for the most part) discussed in detail in (B) and (C). 2. See (B) and (C). 3. For reasons I will not go into here, I do not think an ex ante perspective on this issue yields a different result. 4. I believe there is a striking similarity—indicating that the same underlying principle is at work—between what distinguishes these cases and what (I have elsewhere argued) distinguishes cases in which it is impermissible to favor using scarce resources on a disabled candidate rather than a disabled one from cases in which doing so is permissible. There, once again (I surmise) it turns out that we may favor a candidate whose makeup allows us to use our resources to do a better job but not favor a candidate who yields a better outcome simply in virtue of characteristics he brings to the situation. For more on this, see (D).

References A. Hastings Center document, Mental health services: ethics of resource utilization. B. Morality, Mortality, Vol. 1. New York: Oxford University Press, 1993. C. Nonconsequentialism. In Blackwell’s Guide to Ethical Theory, ed. H. LaFollette. Blackwell’s, 2000. D. Disability, discrimination, and irrelevant goods. In Disability and Disadvantage, eds. K. Brownlee and A. Cureton (New York: Oxford University Press, 2009).

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15 Responsibility for Health Status1 LANCE K. STELL

Each is the proper guardian of his own health, whether bodily, or mental or spiritual. Mankind are greater gainers by suffering each other to live as seems good themselves, than by compelling each to live as seems good to the rest.2 The principle of mutual love admonishes men constantly to come nearer to each other; that of the respect which they owe each other, to keep themselves at a distance from one another.3 Fortune is the arbiter of half the things we do, leaving the other half or so to be controlled by ourselves.4

INTRODUCTION The appellate court’s frustration was obvious. “Occasionally, a case will challenge the ability of the law and society, to cope effectively and sensitively with fundamental problems of human existence. This is such a case.” After the birth of her twins, Brenda Payton’s5 kidneys failed. She received a transplant but lost it, due to rejection. To survive, she needed regular hemodialysis, a type of medical treatment sponsored by the federal government’s end-stage renal disease program. Brenda proved to be a remarkably difficult patient to take care of. She often missed her appointments or showed up late, drunk. She abused illicit drugs. She regularly failed to keep her weight within the range prescribed by her doctor. She gained as much as 30 pounds between treatments, increasing her risk of heart failure and sudden death. Her missing appointments for outpatient dialysis resulted in her receiving emergently necessary dialysis 30 times in 11 months, under California’s statute that prohibited hospitals from turning her away.6 Brenda picked fights with other patients in the dialysis center, exposed her genitals to them, cursed them. She would interrupt her dialysis by demanding that the dialysis machine be turned off or by pulling the needles from the shunt in her arm, causing blood to spew. Her repeated outbursts jeopardized the care of other patients. Brenda and they were dialyzed simultaneously by the same machine.

If the machine were turned off, they would not receive needed treatment. Brenda demanded so much attention from the nurses that other patients’ dialysis-associated complications might not be noticed promptly. Even thought Brenda’s misconduct disrupted care in the dialysis center, it did not cause acrimony with her nephrologist. To her, “Dr. Weaver is and was and still is the man between me and death . . . other than God, I don’t think of nobody higher than I do Dr. Weaver.” After more than 3 years of such behavior, his (and his staff ’s) budget of tolerance exhausted, Dr. Weaver notified Brenda that he would no longer treat her as an outpatient at his dialysis center.7 He provided her with the names and phone numbers of other nephrologists in town to facilitate her finding another doctor. Unfortunately for her, Brenda had made herself notorious in the dialysis community. No other kidney doctor would accept her as an outpatient. So, Dr. Weaver’s severing his relationship with her meant that Brenda would lack a regular nephrologist. She would have to rely on hospital emergency departments for her treatments. Brenda went to court asking it to order Dr. Weaver to continue treating her. Since no other kidney doctor would accept her as an outpatient, Dr. Weaver’s discontinuing her from his practice put her at risk of death. Brenda’s lawyer even asked the court to impose on her an involuntary conservatorship on grounds that she was

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“gravely disabled as a result of mental disorder or impairment by chronic alcoholism.”8 However, the court refused to find that Brenda’s selfacknowledged alcoholism had rendered her “gravely disabled.” After some back-and-forth between the parties, the trial court issued a stipulated order providing that Dr. Weaver would continue to take care of Brenda on the conditions that she would follow his medical instructions, regularly attend an addiction counseling program, and cease her disruptive behavior at the dialysis center. Brenda promptly broke the agreement in every respect, whereupon the court fatefully found that her noncompliance was “knowing and intentional.” This determination put Brenda in a legal box. She was not “gravely impaired,” and her equitable remedy had failed because of her “knowing and intentional” non-adherence to the agreement she’d made. This set the stage for the court’s ruling that Dr. Weaver had discharged fully his obligations to Brenda. There was no basis in law or equity to saddle him with the taking care of her. Brenda appealed, but the court of appeals could find no factual or legal error. It sustained, agreeing that Brenda’s behavior was of such a nature as to justify Dr. Weaver’s refusal of dialysis treatment. It opined, “Whatever collective responsibility may exist [on the part of all the dialysis centers in the community to share the burden of treating her], it is not absolute, or independent of the patient’s own responsibility.” A petition to the state’s supreme court was denied. The legal arguments having been disposed of, the court felt compelled to address “what alternatives exist for assuring that Brenda does not die as a result of her non-cooperative and disruptive behavior.” It sympathized with the counsel’s desperate, oxymoronic motion that Brenda be ordered to submit to a voluntary conservatorship—the court lacked power to order any such thing. Besides, Brenda previously had rejected the option. Even were she to reconsider and accept it, by law, she would retain authority to revoke it, simply by giving notice of her decision. Six months after these proceedings, Brenda Payton was struck by a bus and killed.

Respect v. Beneficence It is axiomatic in law and ethics that an adult of mature years and sound mind has a fundamental right to determine what shall be done to her body.9 How a person exercises her right of bodily autonomy in determining what, when, and how

much she eats, drinks, or injects; with whom she associates; how regularly she visits her dialysis center or exercises; and whom she permits to touch her and in what manner tends to have at least as much effect as anything else on her health status.10 The autonomy-regarding principle of respect requires that others keep an appropriate distance for her making such determinations. Ordinarily, consent (express or implied) regulates others’ further closing that distance.11 Respect for that rights-circumscribed, decision-making space enables a competent adult to assume the risks she voluntarily and knowingly finds worth taking. Should those risks materialize, she has no right to complain that others failed to prevent the harm, unless they had a special duty to do so. Her status as an autonomous adult means that no one has authority to supervise her. In the last analysis, she is responsible for and must look after herself. According to law and common morality, a person has a duty to take reasonable precautions against suffering harm, and to take reasonable steps to mitigate the extent of any resulting harm, even if another’s fault caused it. For example, a hemorrhaging Jehovah’s Witness who, having been repeatedly warned of the mortal risk of refusing medical rescue by blood transfusion, expressly assumes that risk when she refuses. Her husband may not recover in full for damages in a wrongful death action when 75% of the resulting harm (her death) materialized from the risk she took voluntarily and knowingly.12 The free exercise of religion and the right to bodily autonomy will trump the argument that a reasonable person would have accepted transfusion rescue in the circumstances. But it will not privilege escaping the duty to mitigate one’s harm on grounds that the reasonableness of refusing to do should be measured against the refusal of a reasonable Jehovah’s Witness. That would amount to the impermissible establishment of religion.13 The distancing principle of respect, its fundamental importance in explaining why the consent and refusal of competent adults are authoritative in law and morals notwithstanding, is not the whole of morals nor of law. On the contrary. Kant characterizes the duty of respect as “a negative one . . . analogous to the juridical duty of not encroaching on another’s possessions.” Its force must be counterbalanced by an opposing moral force, the welfare-regarding duty of beneficence. Beneficence requires that we consider each other as “fellow-men—that is, rational beings with needs, united by nature in one dwelling place for

Responsibility for Health Status the purpose of helping one another.”14 Thus, the moral life, as Kant understands it, presents a continual problem for practical reason—how properly to ration motivation between the moral law’s requirements of respect and of beneficence.15 Kant insists that respect and beneficence each ground valid moral imperatives. Each summons motivation to determine an agent’s rationally directed will, but each pulls in an opposite direction. Yet, if either principle fails to recruit its proper share of motivation, moral disaster results. Excessive respect results in over-distancing, callous indifference to distress. Excessive beneficence accelerates a slide from weak paternalism, which mildly discounts self-determination, to strong paternalism, which obliterates it altogether.16 Mencius captured the moral dynamics succinctly: “To feed a man without showing him love is to treat him like a pig; to love him without showing him respect is to keep him like a domestic animal.”17 So the moral agent must, somehow, do justice by balancing respect against beneficence, while taking account of the anthropological fact that human sympathy for others’ woe tends to run out before their woefulness. The tension between principles becomes practically acute in the clinic. Accommodating disruptive behavior such as Brenda displayed not only fails to deter it, but also enables, even encourages more of the same. Denouncing and shaming her reassures other patients that there are limits to tolerable misconduct, limits to how much their adherence to clinic discipline shall subsidize her heedless outbursts. But stigmatizing her also makes her notorious in the dialysis community, virtually eliminating the chances for her being rehabilitated into it as a member in good standing.18 At some unpredictable point, however, the costs of having a patient like Brenda in one’s practice become too great. She chronically took and willfully continued to take so much more than her share from others that further accommodating her as an outpatient was unjust.

THE JUST DISTRIBUTION OF RESPONSIBILITY The moral agent’s problem of counterbalancing respect with beneficence recurs for a theory of justice. The Kantian seeks an institutional arrangement consistent with the concept of a self-governing society composed of rational, free, and responsible individuals living under the rule of law. Its rules must not obliterate the responsibility presupposed by respect for autonomy. But its

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rules must be such that a community composed of rational, free, and responsible individuals would be willing to live under them. This eliminates from consideration the beneficence-obliterating maxim, “let each one be as happy as heaven wills or as he can make himself.” It could not be chosen, because every rational person knows that “instances can often arise in which [one] would need the love and sympathy of others,”… [implying that no one would choose to rob himself of what he might need]. The just arrangement for a particular community would be the one it actually chooses under its rules for making such choices. Which eligible option would be chosen can’t be predicted in the abstract. But we can be confident that Kantian thinking would oppose allowing a patient like Brenda Payton to reduce her physician to a mere prop for her irresponsible behavior. Nor would it allow her self-indulgence to hijack so much more than her share of health care resources that she compromises the care others have a right to expect. Rather than managing the moral dynamics of opposing moral forces, Mill works with only one principle, namely the “greatest good for the greatest number.” He claims that utilitarian considerations favor a social rule assigning guardianship responsibility for health status to each (competent) individual, an arrangement that beats a rule requiring social oversight and approval for each health-influencing decision. Too, by distinguishing physical health from mental and spiritual health, Mill is alert to the tradeoffs that must be made between them. The liberty rule allows a “fitness nut” to maximize his physical health at the expense of his mental and spiritual health. It allows a religious fanatic to mortify his body as he promotes his spiritual health. Yet another may strike a moderate balance between his physical, mental, and spiritual life but fall short of remarkable achievement. Since these decisions concern the individual primarily, he must be free to reap the resulting benefits or suffer the decrements. Society must not interfere except to prevent harm to nonconsenting others. It may, however, hold individuals liable when their intemperance results in their defaulting on their “distinct and assignable obligations”—for the default, not for the intemperance. Thus it seems that Kantian and utilitarian considerations converge in assigning primary responsibility for health status to competent adults. Let’s assume that a plausible conception of justice institutionalizes respect by recognizing a right

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to bodily integrity. As a result it allows Brenda to skip her dialysis appointments but catches up her foolishness when she visits the emergency room, volume overloaded, short of breath. She will receive emergency dialysis. Even when her imprudence becomes chronic, it respects Brenda’s opposition to involuntarily subordinating herself to the supervision of a benevolent guardian. But society’s decision to pay for treating patients with kidney failure should not subsidize chronic system abuse, nor should it indulge her contempt for other dialysis patients with the same treatment rights that she has. At a minimum, shouldn’t Brenda avoid recklessly making her health unreasonably worse? If she repeatedly makes herself a “medical emergency” by knowing and intentional noncompliance with the stipulated agreement to which she consented, isn’t it justified to infer that she has de facto refused the reasonable terms for her obtaining regular dialysis on an outpatient basis? If so, we should consider that Dr. Weaver didn’t fire Brenda; by her conduct, she fired him. If no other dialysis center will accept her, she assumed that risk by building such a bad reputation. Morality and law are right to stigmatize her conduct. She retains a rescue right to “emergency dialysis only.”

Personal Responsibility for Health? The idea of personal responsibility for health status is ancient and has become well entrenched in law and in morals. Robert Veatch disagrees. He claims that the ancients thought a person’s health status was determined by fate or divine caprice, not by his own conduct. He alleges that holding individuals responsible for their health status is a new theme.19 This is demonstrably wrong. The ancients were unaware of the physiological mechanisms by which personal choices affected health status, but they clearly believed that one’s health status was subject to a degree of intentional control, by training, by self-doctoring, and by judicious use of science. For examples, Plato criticized Herodicus who, by training and self-doctoring, overcame his mortal disease and in the process invented something worse, a lingering death, “and so dying hard, by the help of science he struggled on to old age.”20 Marcus Aurelius says of his father: “He took reasonable care of his body’s health, not as one who was greatly attached to life, nor out of regard to personal appearance, nor yet in a careless way, but so that, through his own attention, he very seldom stood in need of the physician’s art or of medicine or external applications.”21 Nor did the ancients

need a knowledge of blood chemistry to appreciate that, by the order of natural justice, reckless or immoderate living tended to upset vitally balanced forces with resulting loss of function and felt distress. It was well known that an evening’s heavy drinking could render a person unconscious and afflict him with vomiting and a fuzzy head when he awoke. Leaping ahead to the mid-19th century, the AMA’s first Code (1847) provided, “The obedience of a patient to the prescriptions of his physician should be prompt and implicit . . . A failure in one particular may render an otherwise judicious treatment dangerous, even fatal.” Victims of personal injury have a legal duty to mitigate their damages. Failure to do so lessens the defendant’s duty of compensation. And currently, at least one state holds that individuals who are ill or injured bear a responsibility to facilitate, or at least not to frustrate, their own recovery. For example, New Mexico law provides that “If any patient shall persist in any injurious practice which imperils, retards or impairs his recovery or increases his injury or refuses to submit to such medical or surgical treatment as is reasonably essential to promote his recovery, the court may in its discretion reduce or suspend his medical care and related benefits until the injurious practice is discontinued.”22 Its workers’ compensation statute similarly provides that a worker who suffers job-related injuries must avoid “injurious practices” that tend to imperil, retard, or impair his recovery or increase his disability.23

ILLNES S AND THE M E D I C A L I Z AT I O N O F DISTRES S Plato may have been the first to notice the positive supply function between lawyers and litigation.24 More lawyers, more lawsuits, more causes of action, more courts of law to air legal complaints. The net result: social time and other resources are redistributed—to lawyers and away from alternative (and by Plato’s lights) more worthy uses. Worse, it produced a nonproductive, disrespectable social class—the perpetually aggrieved. Plato saw a similar positive supply function between physicians and diseases.25 More physicians (and schools or “families” of medical discipline) increases the number of ailments requiring a healer’s attention, resulting in a greater number of people under supervision of the healing class. Selfdetermination takes a double hit via subordination

Responsibility for Health Status to illness and to physicians. Plato’s conjecture is apparently verified by the modern-day proliferation of somatic syndromes. Publicizing the symptoms associated with the somatic syndromes fibromyalgia, irritable bowel syndrome, and chronic fatigue syndrome induces and sustains these conditions in susceptible persons.26 Becoming valetudinarian elevates disease management to “job one” in one’s life. Whether valetudinarianism is heteronomy depends on whether one moralizes the theory of autonomy with a proviso that real autonomy rules out the indignity of allowing an illness to become the ruling concern in one’s life. Plato may have been wrong in thinking that perpetually seeking a diagnosis for one’s distress reduces freedom, by virtue of time diversion, and by subordination to quacks who specialize in naming and offering cures for an endless array of somatic syndromes. At least in some cases, receiving a diagnosis (naming one’s distress) may give a patient a subjective sense of control over his illness, resulting in resolve to address it constructively or resignedly.

BLAMING THE SICK FOR BEING SICK? Why not hold a person responsible for causing serious decrements in her health status? Perhaps because holding her accountable for herself, amounts to “blaming the victim,” encouraging observer cold-heartedness.27 Too, holding the self-destructive patient accountable for the harm she self-inflicts, especially when she likely suffers from focal incompetence secondary to her various substance-addictions, tends to obscure important social and economic determinants of health,28 thereby diverting attention away from social responsibility. For example, Mill claimed, “If society lets any considerable number of its members grow up . . . incapable of being acted on by rational consideration of distant motives, society has itself to blame for the consequences.” It may be argued that socially inflicted harms were so flagrant in Brenda Payton’s case that her own defaults are comparatively insignificant. The Volstead Act proved that prohibiting production and commerce of a health-harmful addictive substance is within the national government’s power. Public health data from the period of Prohibition reveal a substantial decline in alcohol consumption and in alcohol-related mortality and morbidity.29 Prohibition’s repeal further illustrates society’s control as the popularity of Victorian temperance (abstinence) gave way to hedonism

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(among other reasons). It is now society’s chosen policy to “allow” alcohol production and consumption. Society defaulted on its associated responsibility to tax alcohol sufficiently to provide adequate care for the predictable casualties of legalization.30 Native American communities in particular have been devastated by the legalization of alcohol, but without adequate socially compensatory programs for the foreseeable casualties of liberalization. On the other hand, despite being no more dangerous to health than alcohol, society criminalizes the production, sale, or possession of cocaine and heroin. This policy perversely makes consumption of these drugs comparatively more risky (medically and legally) than alcohol consumption but has not made them sufficiently pricey to deter their use. Even society’s poorest citizens can afford cocaine. Law enforcement has been unable to increase street prices. Society’s declaration of “war” on (people who use) drugs creates a social responsibility to allocate adequate resources to care for the war’s reasonably foreseeable civilian casualties. Inner-city minority communities have been decimated by this war.31 Building prisons to house drug-law violators consumes resources that would be better spent on addressing educational and health care needs of the addicted poor. Hemodialysis was once a home-care medical treatment. Government policy decisions have made it advantageous for kidney doctors to herd patients into centers for treatment, with decidedly disadvantageous consequences for patients like Brenda. Too, society has followed a aggressive “de-institutionalization” policy for 40 years. By over-emphasizing the principle of “liberty-respect” at the cost of “beneficence-care” for a mentally disabled population, society’s moral vision has turned from jaundiced to blind. The foregoing is indeed arguable. But the consequence of releasing a Brenda Payton from responsibility and regarding her defaults “as comparatively insignificant” reduces her to “domestic animal” status. Animal husbandry at its best is compassionate. Extending its dominion to human persons subordinates the moral empire to the rule of beneficence and compassion—precisely the ethical disaster Kant warned about. To avoid this result, our institutions must recognize that endlessly accommodating a patient’s knowing and intentional noncompliance undermines respect for her, encourages her not to take seriously that she is responsible for herself, and encourages her

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to treat others with similar health care needs contemptuously discounting their welfare as sharply as she apparently discounts her own. Society’s first obligation is to establish and uphold just institutions. These strike a proper balance between respect and beneficence by leaning toward responsibility and upholding it on principle.32

RESPONSIBILITY AND CONTROL “Responsibility” is etymologically linked with having to answer for what one has made to happen or what one has allowed to happen, including what one has let others do. To be responsible presupposes having the ability to be responsive—to recognize when one has been challenged to produce an accounting for one’s acts or omissions, and to respond to the challenge by providing an accounting of the appropriate sort to whoever is in a position to demand answers.33 In other words, holding someone responsible for his acts/omissions presupposes his competence to respond with an appropriate accounting. One is not responsible for everything one makes happen or fails to prevent. We are responsible for things over which we have (or had) some degree of control, or things over which we should have had control. A theory of agent responsibility may implicate more or less of what the agent made to happen, more or less of what the agent let (or allowed) to happen. Agents typically exercise control by coordinating “make happen” with “letting happen.” This applies, even at the most basic level of action—namely, to coordinated physical movements. For example, when one reaches for and grasps a cup of coffee, both flexors and extensors come into play. Some muscles must relax (let arm motion occur) and some must contract (make arm motion occur) in the right way for the right amount of time to reach (but not overreach) for and grasp a cup successfully. We do not hold responsible a person who suffers from Parkinsonism for the mess he makes by spilling his coffee. He lacks sufficient control over the “making-letting system” to enable a high success rate at the task: “reaching and grasping without spilling.” On the other hand, if he could have avoided making a mess by requesting and securing help and if he had control over whether to make the request and was reasonably assured of assistance upon request, the issue of his responsibility for the mess recurs. “Why didn’t you ask someone to help you?” It is not uncommon to hold people responsible for attempting alone

what they should have secured help for. It is also common to hold responsible potential helpers who neglected to make help apparently available.

HOLDING RESPONSIBLE A N D TA K I N G RESPONSIBILITY Holding a person responsible for her health status presupposes that she had (and still has) the ability to take responsibility for herself and to give an accounting for her health-influencing choices. This means that (1) she had (and/or has) the ability to exercise control over factors with healthstatus-modifying effects; and (2) she has the cognitive capacity to believe and understand that this is so, the evaluative capacity sufficient to make her control matter to her and to give coherence to her preferences, and the volitional capacity sufficient to choose an option on a timely basis and then to follow through in light of her understanding and evaluations. That a person is able to take responsibility for herself does not preclude that she mistakenly takes more or less responsibility for her health status than she should. One can be faulted for avoiding responsibility for what one has caused. Taking (appropriate) responsibility for the way things are presupposes neither that one is or is not responsible for having caused things to be as they are. One may act commendably by taking responsibility to care for what one did not cause; the Good Samaritan is an example. GLOBAL COMPETENCE, D E C I S I O N - R E L AT I V E COMPETENCE, FOCAL INCOMPETENCE Incompetent persons should not be held to account for decisions about which they lack sufficient comprehension and judgment. Their insufficiency precludes it. In Brenda Payton’s case, the court found that she suffered from significant, chronic decisional impairments secondary to her addictions. However, she functioned effectively much of the time. She was able to give a remarkably good account of herself in court. Yes, she was argumentative and occasionally offensive. She chronically neglected to observe the discipline required to manage her kidney failure in a manner that would keep her out of the hospital. But she presented no imminent danger to others, nor was she suicidal. Her multiple medical, behavioral, and substance-abuse problems

Responsibility for Health Status notwithstanding, she was not “gravely disabled,” all things considered. Perhaps the court erred in its thinking about competence. Instead of thinking about competence “globally,” it should have thought about it “focally.” Thus it might be argued that the court failed to appreciate that substance addiction may impair decisional capacity focally. It may even “gravely disable” a person, rendering her “focally incompetent,” specifically with respect to the decision whether to stop abusing drugs, to seek treatment for substance abuse, to remain in treatment, or to accept voluntarily the supervision of a conservator. This is not overly subtle. Courts regularly adjudicate persons incompetent with respect to their financial decisions. The inquiry is “focal,” not “global.” The remedy is, too. A limited guardianship authorizes a trustee to make financial decisions on the (financially incompetent) person’s behalf. His authority does not extend thereby to guardianship of the person. Similarly, a person may be adjudicated (focally) incompetent to drive an automobile, or to drive at night. Again, the inquiry and resulting determination of incompetence and the restriction of privilege is focal, and task-relative. How should we understand this, theoretically?

The Elements of Competence: Cognitive and Evaluative Ability Buchanan and Brock offer a theoretical framework for analyzing this problem.34 Their theory makes competence a decision-relative concept. They argue that making a decision is similar to performing a task or solving a problem. Some problems are harder than others. Having the ability to solve some problems of a particular kind does not imply having the ability to solve all problems of that kind. One may have the ability to solve a problem at a particular time and under some circumstances but not at other times and under other circumstances. Injury, illness, fatigue, fear, hunger, pain, and chemicals can impair and even render ineffective otherwise effective problem-solving skills. Even so, a resulting incompetence is presumptively “focal,” not “global.” For example, alcohol intoxication, of some degree, will render a person focally incompetent to drive a car, or to give a valid consent to elective surgery. But a degree of intoxication sufficient to render one focally incompetent to perform those tasks does not necessarily make one incompetent to give valid consent to sexual relations or to form

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the intent necessary for many criminal offenses. Buchanan and Brock make the concept “focal incompetence” theoretically coherent. According to Buchanan and Brock, the capacities needed for competent decision-making are primarily cognitive and evaluative, namely the ability to understand, reason, and deliberate, and the ability to apply one’s values to eligible options and to communicate a resulting choice. Whether one is competent to make a specific decision will depend one’s possessing the abilities to understand, to reason, and to evaluate to a sufficient degree. When discussing mental illness, they observe that it “often attacks the same thought processes that are necessary for competent decisions about hospitalization.”35 If addiction were a species of mental illness, then addiction may cause focal incompetence in the same manner as mental illness, namely when it sufficiently impairs one or more decision-making abilities. Addiction-related craving may increase impulsiveness, impairing the ability to reason or to deliberate. When a specific decision requires deliberative ability but addiction-related craving impairs it, resulting in an impulsive, snap decision, one’s addiction may have impaired a relevant ability sufficiently to render one focally incompetent to make that decision. Impulsivity does not always have a foundation in addiction, however. An impulsive temperament may well have its basis in the neurobiology of dopamine.36 Indeed, thrillseeking may be a brain-management strategy common among individuals with comparatively low levels of this neurotransmitter.37

A Lesion of the Will?38 Buchanan and Brock’s theory of competence lacks an adequately robust volitional component. In particular, “volitional follow-through” is an ability that should bear on a competency assessment of addicts to make certain decisions. Tacitly, Buchanan and Brock recognize the importance of self-control, before apparent choice. For example, if one lacks ability to suppress distractions in order to focus sufficiently, if one lacks ability to control one’s emotions sufficiently to attend to the information that bears on evaluating one’s options, then one will lack ability to understand, reason, deliberate, apply his values to the available options, and make a choice. However, for it to be true that one has chosen, the ability to control oneself to an appropriate degree remains important for determining whether one has in fact chosen. Sufficiently large

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deficits in self-control after apparent choice will count against one’s having chosen. And if selfcontrol deficits after apparent choice may make it false that “you chose x,” while not altering the truth of “you reported that x was your choice,” they should also count in an inventory of abilities relevant to assessing competence to make decision x. For example, a competency assessment directed at “volitional follow-through” would have been directly relevant to determining whether Brenda was competent to consent to the stipulated agreement with Dr. Weaver concerning her dialysis treatment. We ought to distinguish between making a decision, only to change one’s mind quickly; making a decision only to forget that one has decided; reporting one’s decision (deceptively) when one knows that one has not decided (similar to crossing one’s fingers when promising); and reporting that one has decided despite lacking the volitional followthrough ability to have decided. Behavior patterns provide the evidence for discriminating. It will never be unambiguous. Ordinarily, we may prefer characterizing the phenomenon as “choice, but rapid change of mind” or “strategic non-choice, but dishonest report of choice.” It is possible that decisions of a certain kind may overtax one’s decision-making abilities (to follow through) and where the evidence implicating impaired self-control (rather than dishonesty) will emerge from a pattern of behavior after apparent choice. If so, focal incompetence secondary to substance addiction requires recognition of an additional element in the assessment of competence, namely volitional follow-through, strength of will. But in any case, it would seem that a finding that a person suffers from focal incompetence to make a certain kind of decision should result in her receiving limited supervision, not supervision of her person as a whole.

Volitional and Evaluative Impairment Evaluative impairment may manifest as difficulty or inability to construct a preference ordering or an inability appropriately to care about what one prefers. People who suffer from depression (a.k.a. “affective disorder”) seem to have an impaired evaluative ability to arrive at a preference and/or impaired volitional ability to make preferences matter as they should. Blazer et al. estimate that approximately 18 million Americans suffer from affective disorder each year. People diagnosed with affective disorder are eight times more likely to commit suicide

than members of the general population.39 Somatic complaints are strongly associated with affective disorder. Compared with patients who do not complain of pain, those who complain of medically unexplained pain at two body sites are five times more likely to have a diagnosis of major depression. Those with medically unexplained pain at three or more sites are eight times more likely to bear that diagnosis.40 Affective disorder often has associated comorbidities, and some of them also may be associated with reduced life expectancy.41 Although a diagnosis of affective disorder increases one’s relative risk of suicide eight-fold, the incidence of suicide in the general population must be kept in mind. The annual incidence of suicide in the United States is approximately 30,000, or 10.5/100,000. This means that 99.99% of the population does not commit suicide each year. Suppose we assume that a psychiatric autopsy of suicides would show that 50% of suicides would satisfy the criteria for affective disorder; then approximately 15,000 of the completed suicides suffer from affective disorder. But even with an eight-fold increase in relative risk, 99.92% of persons with affective disorder do not commit suicide in any given year. If so, it seems dubious to adjust downward a person’s health status on account of a diagnosis of affective disorder. The challenge for therapists is to recognize which depressed patients are an imminent danger to themselves, presenting a risk sufficiently high to justify involuntarily confining them for their own good.42 A diagnosis of affective disorder may predict use of health care services at a higher rate than persons who lack this diagnosis. If so, depression screening, if cost-effective, would be of obvious interest to health insurers, whether public or private. A 1995 review of nine tests widely used for depression screening reported an average sensitivity of 84% (range, 67% to 99%) and average specificity of 72% (range, 40% to 95%). Taken as a whole, the use of these tests for screening purposes gives an average false-negative rate of 16% and an average false-positive rate of 28%. It was estimated that annual screening for depression in primary-care patients would cost society $192,444 per quality-adjusted life-year (QALY).43 If screening were conducted every 5 years rather than annually, the cost to society rises to $310,909 per QALY.44 If we use the completely arbitrary but widely used benchmark of $50,000 per QALY gained to determine when an intervention should

Responsibility for Health Status be recommended for implementation from a social point of view, screening for depression in primary care cannot be justified. For comparison, 70% of immunization programs have a costutility ratio of less than $25,000 per QALY. Depression runs in families. It almost certainly has a genetic component. Indeed, depression seems to implicate impaired functioning of the brain’s serotonin and norepinephrine systems. Genetic screening for susceptibility to depression in childhood may be cost-effective compared with depression screening. If individuals identified at high risk were placed on antidepressants in childhood, much teen suicide and teen alcoholism might be prevented. If so, genetic screening for susceptibility to depression might be justified on a cost-utility basis.

Prevention, Social Responsibility, and Public Health The principal index of a nation’s health status is its age/sex-specific mortality rate. This index calculates deaths per age cohort, with controls for sex and cause of death. For example, a nation with a very large number of elderly persons will have a comparatively high median age and a comparatively high mortality rate as a result. Elderly persons have reduced life expectancy compared with young persons. Therefore, age/sex-specific mortality will be an imperfect basis for making comparative judgments regarding national health status. Immunization against childhood diseases, antibiotics, anti-diarrhea medicine, water purification, and effective waste disposal reduce substantially population mortality from infectious causes. But gains in national health status correlate more closely with income, diet, and education than with medical advances.45 Reducing mortality from infectious diseases will tend to increase life expectancy, but for logical reasons, mortality risks from other causes must increase. Each person’s expectable mortality is 100%. Everybody dies from something. Even the most effective public policies against disease do not prevent death, they postpone it. Reducing the incidence of infant mortality means that more children will survive to reach adolescence and young adulthood. Teenagers and young adults die at comparatively high rates in motor vehicle accidents (MVAs). The MVA death rate for persons ages 0 to 24 is 33.8/100,000; for persons 25 to 44, it drops to 15.8.46 Reduced MVA risks in late middle age are matched with an increased

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incidence of type 2 diabetes, heart disease, and cancer. The MVA risks increase again for the elderly. The risk of Alzheimer’s disease rises sharply for persons older than 75. “Disease prevention” suggests the possibility that emphasizing preventive care over “sick care” will reduce health care expenditures and make the population healthier to boot—a charming fantasy. Disease prevention does not mean preventing illness per se; it means marginally reducing the incidence of preventable illnesses. Doing so will tend to increase the incidence of comparatively less preventable illnesses, and the latter may be more costly and cause more suffering than comparatively more preventable illnesses. No study has shown that reducing morbidity and mortality from comparatively preventable causes reduces the social costs of morbidity and mortality. Cost-effectiveness studies estimate the net expectable benefits of interventions. Net costs include all services required to secure the hopedfor health care benefit. These include such things as screening tests, false-positive findings, and follow-up care, minus the savings from marginal reductions in the incidence of a specific illness. Not uncommonly, carefully done cost-effectiveness studies show that preventive care increases medical expenditures.47 Effective death-postponing medical treatment increase morbidity associated with imperfect rescues. Postponing death from one cause may result in dying a worse death from another cause later. Not all patients rescued from comparatively preventable causes of death enjoy a full functional recovery. For example, neurologically devastated survival in the persistent vegetative state (PVS) is a morbidity associated with improved death-postponing medical treatments, namely CPR, tube feeding, and mechanical respiratory support. Nor does access to modern medical interventions and the services of professionally trained service providers explain differences in the health status of national populations. Countries that guarantee reimbursement for care provided irrespective of ability to pay have persistent healthstatus inequalities associated with gender (women tend to live longer than men but utilize health care services at higher rates than men) and social class (richer citizens tend to live longer and get sick less often than poorer citizens). In the United States, for example, Mormons are healthier than the general population irrespective of their access to professional health care services. Is the Mormon community’s allocation of responsibility better

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than that of other communities? If non-Mormon communities fail to implement policies whereby their members might enjoy health status similar to that of Mormons, aren’t those communities negligent?

Addiction and Freedom Addict and addiction are old, quasi-legal terms. According to the OED, to addict a person is to deliver him over formally (e.g., by sentence of a judge) to the service of another by restraint or obligation. To addict another presupposes one’s having authority to impose restraints or obligations on him. In the first-person reflexive case, to addict oneself is to use one’s own power of choice to attach or bind oneself to another’s service, to a social cause, or to a habit. A theory of addiction will naturally address the following questions: How and by whom may addictions be (validly) imposed or abolished? What sorts of “service” may be imposed and for how long? Is total subordination of the one addicted permissible? When, if ever, is an addiction of indefinite duration permissible? May an addiction be total and indefinite? Etymology links addiction with a loss of freedom—“by restraint or obligation.” This is exemplified clearly when a judge, using his sentencing authority, addicts (binds over) another to the service of a third party. “Sentences” presuppose authority to “pronounce” and impose them. Sentences imposed typically presuppose a finding of wrongdoing. They commonly involve imposition of involuntary servitude—for example, “5 years of hard labor,” “10 to 15 years making license plates in the penitentiary.” Sentences do not involve total subordination of the one addicted, but only so much as necessary to carry out the sentence. Obviously, the judge’s addicting of the convict is “knowing and intentional.” A political society exercises its addictive power when, by law, it requires its young men to register for the draft at age 18. Since the resulting liberty loss (liability to be drafted, in case of draft reauthorization) is sexspecific and not predicated on wrongdoing, the exercise of this legislative authority has been challenged on 13th and 14th Amendment grounds.48 First-person reflexive (addicting oneself) cases involve “self-binding.” The most obvious example of formal self-binding is legal contract, where the self-binding is knowing and intentional. Indentured servitude is an (archaic) example of a time-limited, personal services agreement resulting in “bondage” and enforceable by “specific

performance.” Informal self-binding may or may not be knowing and intentional. It may be inadvertent. It may not result in “bondage,” as when one commits oneself to a social cause, or when one sets about to ingrain a (good) habit. But the self-binding also may be unintentional. One may find oneself “bound” and “in bondage” despite the absence of any intent to do so. One may find oneself bound more tightly that one intended or in a manner different than one expected. “Falling in love” bears the characteristics of addiction. One may intentionally put oneself at risk for falling in love. One may notice that it is happening. One may put up mild/strong resistance or decide to let it happen. Falling in love obviously involves a loss of freedom. One finds his thoughts and feelings “taken over” as he becomes progressively “enthralled.” Thoughts of his beloved pop into his mind forcefully and unbidden at inopportune moments, distracting him, making him “lovesick,” etc. A person may find falling in love rapturously pleasant or decidedly unpleasant, or one may be ambivalent towards both “falling in love” and towards “being in love.” Recall the disciplined, jealous-of-his-independence Professor Higgins’ response to recognizing that he was not merely “fond” of Eliza but that had fallen in love with her—“Damn! Damn! Damn! I’ve grown accustomed to her face!” Although addiction implies loss of freedom, addictions are not thereby bad. Self-acquired addictions may advance one’s interests; they may be self-expressive commitments. For example, the OED gives examples where self-addiction and “devotion” are synonyms. Thus a person may be addicted (devoted) to her work. Devotion to one’s work suggests an attachment stronger than merely liking one’s work or enjoying it. Medicalized, it’s called “monomania.”49 Activities to which one is devoted (addicted) are not subject to casual selftermination. Casual self-termination of an activity rules out one’s devotion to it. A workaholic may be convinced that she should spend more time with her family, decide to spend more time “at home,” but yet have great difficulty reducing the amount of time she devotes to her work, despite the fact that she spends less time “at work.” People who prize their independence above all else will tend to avoid devoting themselves to anyone or anything. (Monomaniacs to independence? Was Dostoevsky’s underground man addicted to independence, “the most advantageous advantage”?) When coupled with selfcontrol, their valuing independence so highly

Responsibility for Health Status may result in their living shallow lives, albeit freer ones. Willingness to make commitments, to be devoted, increases one’s susceptibility to loss of freedom. It may also put one at increased risk for the adverse health effects associated with “monomania.” Addiction logically implies a loss of freedom; a theory of addiction implicates a theory of freedom. We are blessed with a surfeit of theories. Adequately discussing them here is impossible. According to desire-regarding theories, a person is made unfree only if she is rendered unable to satisfy her desires, especially those that matter most to her. Her freedom is reduced only if her desire-satisfying abilities or opportunities are impaired or diminished. On a desire account, a desire for cocaine counts as addictive only if it disables her, impairs formerly effective desiresatisfaction abilities, or otherwise reduces her opportunities for desire satisfaction overall. Many theories of addiction make it a defining condition (of addiction) that there be an inability to cease consumption despite a strong desire to do so. Non-desire-regarding theories hold that a person may be rendered unfree irrespective of any loss of desire-satisfying ability or opportunity. Freedom losses can result from internal psychological disorder, conflict of desires, or unreasoned, impulsive, debased choices, however voluntary, that express servility rather than human dignity. A desire for cocaine would count as addictive (and freedom-reducing) only if the desire were servile, expressive of insufficient selfrespect.50 The servile person may act voluntarily, but yet unfreely because the desires on which she acts are unworthy, perhaps acquired in an unjust socialization. Yet other theories of freedom claim that a person’s acts are rendered unfree only if she identifies the etiology of those acts as alien—for instance, as prompted by oppressive, distracting cravings— and that satisfying them requires her to act “out of character.” It follows that for a person who fully identifies with her desire for cocaine and finds nothing out of character associated with what she does to get and consume it, then cocaine use will be self-expressive for her, not an addiction.

Addiction and Personal Identity A theory of freedom further implicates a theory of the self or of authenticity. We distinguish between: (1) when a person speaks assertively with his own voice, (2) when anger gets the better of him and takes over his voice, and (3) when his

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addictive craving for a substance is doing the talking. The latter two imply increasingly severe losses of self-control. This is puzzling. How do we distinguish “his” (authentic) voice, from his (less authentic) anger’s voice, from his addiction’s (alien-possession) voice? Each speaks from the same mouth! First- and third-person characterizations may diverge. “I won’t take that comment seriously, I recognize when your addiction’s talking.” “That wasn’t ‘my addiction’ talking, that was me!” “No, that’s not you, I know you, and that wasn’t you!” Ainslie analyzes the dynamic this way: “The ‘mind’ or ‘self ’ is a population of reward-seeking operations that survive insofar as they actually obtain reward. The mental operations selected for by a particular reward or class of rewards constitute the person’s interest in that reward; interests within the person are very like interests within a community.”51 Becker similarly models the person as a “community,” namely a family. Donald Davidson invokes dual agency to explain selfdeception. Compound models of the self are at least as old as Plato’s tripartite soul. None of these is particularly helpful in providing a causal explanation of self-formation, dissolution, reformation. What are the truth conditions for “Now you’re hearing ‘the real me’ talking, at last.” And, “Yesterday, when I said you were hearing me speak with my own voice for the first time . . . well, that wasn’t true.” “Don’t worry, I didn’t believe you yesterday. Nor do I believe you today.” If the self is identified with rationality, rational acts will be free and irrational acts unfree. Irrational acts, in virtue of their etiology in the self ’s “periphery,” will be comparatively unfree irrespective of their apparent voluntariness. If emotions, for theoretical reasons, are made peripheral to the self,52 acts with an emotional etiology will be less free or even unfree. “His anger got the better of him.” “She’s so emotional, just not at all herself today.” Acts not expressive of the self ’s “core” will tend to be regarded as less free than acts motivated centrally. None of these metaphors illuminates very far. Nor can I do more than raise the problem. Any theory of addiction that fails properly to incorporate ability/disability/opportunity into its analysis of freedom/unfreedom and personal identity courts paradox, namely the phenomenon of a person’s doing regularly what (the theory says) he is unfree to do. The preceding complexities aside, we can summarize. Addictions are person-relative. What addicts

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one person may not addict another, or addict him to the same degree. Addiction is linked by logic to a loss of freedom. Causal theories of action address the mechanism whereby the loss results. Some addictions are associated with greater freedom losses than others. Some addictions are harder to break than others. “Loss of control” is commonly associated with addiction. Loss of control is comparative between times and is a matter of degree. Some people have more trouble breaking an addiction than other people do. Addiction is not inherently bad. Some addictions may be advantageous or laudable (e.g., devotion to a worthwhile cause). Some may be risky, self-destructive, or even horrifying.

Theories of Addiction Economists Gary Becker and Kevin Murphy note that “People get addicted not only to alcohol, cocaine, and cigarettes but also to work, eating, music, television, their standard of living, other people, religion, and many other activities.”53 Indeed, Ainslie has further catalogued addictive behaviors in association with “… gambling, caffeine, sugar, chocolate, romantic relationships, emotional dependence, promiscuity, masturbation, haste, shoplifting, self-mutilation, spending money, and competitiveness.”54 Becker and Murphy propose an analysis of addiction that does not beg the question of harmfulness. They leave it open that some addictions may be beneficial. They note that people vary in their susceptibility to addiction. Addictions vary in strength: breaking addiction is harder for some than for others. They note that many American soldiers who fought in Vietnam became addicted to drugs while serving in Southeast Asia. Many broke their addictions when they returned home, but many didn’t. Having a good reason to stop is key, otherwise one’s reason has nothing to work with. Becker and Murphy propose a general model of rational choice according to which addictions involve future directed, satisfaction-maximzing of stable preferences. They define addiction as a habit with the characteristic “that greater consumption earlier stimulates greater, not lesser consumption later. Harmful addictions are marked by tolerance, which means that higher past consumption lowers the present utility of the same level of consumption” (681–2). Beneficial addictions do not have this feature. Two considerations, one theoretical and one empirical, support including addictive behavior within the scope of a general theory of rational

choice. First, a great deal of behavior would escape explanation if health-harmful addictions were excluded arbitrarily from a general theory of rational choice. Second, empirical research on alcohol consumption has found that even small changes in excise taxes on alcohol have a large effect on death rates from cirrhosis of the liver (a reliable surrogate measure of heavy alcohol consumption). Too, when compelling evidence of the health-harmful, long-term effects of tobacco smoking gained wide and sustained publicity for the first time in the 1964 Surgeon General’s Report, the smoking rate for teenagers declined by one third, despite their notorious impulsivity. These results are inexplicable if a theory of addiction stipulates that the alcoholic’s demand for drink is inelastic or that makes it axiomatic that teenagers are unable to give decisional weight to delayed health consequences. By contrast, both results are predictable by a theory of rational choice. Becker and Murphy do not claim that their theory can explain all the idiosyncratic behavior associated with specific addictions, but they do claim that their model better explains addictive behavior (beneficial and harmful) than rival theories. I cannot do justice here to the nuances of Becker and Murphy’s theory, but it should not be dismissed for silly reasons. For example, their using a utility-maximizing model of rational choice to explain addiction does not commit them to the absurd conclusion that people addicted to health-harmful substances are “happy.” On the contrary, many people acquire their health-harmful addictions because of the stressful, unpleasant circumstances in which they find themselves. Their prior misery is part of the explanation why they got addicted. Nor does it follow that addicts find happiness in their addictions. However, it does follow from the model that addicts, however miserable their addictive lives may be, would be even more miserable were they are denied access to the substances they crave. Many addicts terminate their addictions voluntarily. Becker and Murphy’s model predicts that a rational addict will end his addiction if circumstances change sufficiently to lower his demand, or if his stock of consumption capital is reduced sufficiently, or if prices rise sufficiently. Their model entails the surprising result that, the stronger an addict’s addiction, the more likely his stopping will be successful if he stops “cold turkey.” Critics of Becker and Murphy claim that addicts violate the “stable preference” criterion of rational choice. They allege that addicts display

Responsibility for Health Status remarkable ambivalence about their consumption of addictive substances or that they time-discount “hyperbolically.”55 If so, addiction to health-harmful substances is not rational. An addict’s continuing consumption of a health-harmful substance despite apparently sincere testimony that he strongly desires to quit is consistent with the preference-inversion hypothesis. However, the preference revealed by his continued consumption may be a better guide to his true preferences than his testimony. If so, his real preferences may not violate the stability requirement. Rational addiction theory has a desirable ethical consequence. By underwriting the duty to respect the addict’s still-intact rationality, it constrains too-easy recourse to strong paternalism. Beneficently directed attention should focus on the contingencies affecting the addict’s consumption choices. Getting her to stop must involve her having sufficiently good reasons and her perceiving them as such as she makes choices. Such reasons may include increasing substantially the price she pays for consumption, increasing the positive consequences associated with non-consumption, and increasing the negative consequences associated with consumption. Becoming employed and becoming employed in a fulfilling occupation will tend to help; becoming employed in an unsatisfying or overly demanding job won’t.

ADDICTION AS M E N TA L I L L N E S S Disease models focuses on health-harmful addictions—primarily those to nicotine, alcohol, opiates, cocaine, and amphetamines. Adherents of disease theories tend to regard “health-harmful addiction” as a redundancy and “beneficial addiction” as paradoxical or oxymoronic. A crude disease model claims that addicts fail to limit their consumption of harmful substances because the dynamics of addiction renders them totally unable to control their consumption, despite their evident desire to do so. Alcoholics Anonymous claims, “Alcoholism is a disease which manifests itself chiefly by the uncontrollable drinking of the victim, who is known as an alcoholic.” The key premises in the crude disease model claim that substance addiction destroys completely the addict’s self-control and that the addict’s professing a desire to quit entails that he has a strong desire to quit. Alleging that the alcoholic loses self-control completely must be hyperbole. Otherwise it becomes mysterious that the alcoholic notices

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when his glass is empty, that he refills it from a liquor bottle rather than from the kitchen tap, or that he remembers to travel to the toilet to drain his bladder. Of course, when sufficiently intoxicated, loss of control become complete—the drunk falls insensate from his chair and may besmirch himself where he lays. Without some degree of self-control, no amount of therapy can help the addict—there would be nothing for the therapist to work with.56 Sophisticated disease models claim, more modestly, that addictive substances reduce or diminish the addict’s ability to control her consumption. Loss of ability is a matter of degree— sometimes greater, sometimes lesser. Co-factors such as stress, environmental cues, or one’s associates may exert greater or lesser causal influence. It is unclear whether disease models make “addiction” a threshold concept (is addicted) or whether addictions may vary more or less continuously in their strength, parallel with variability in “control loss.” Might an addiction be stronger on some days, or some times during the day, than on others? Might it exert lesser influence during some times of year than in others? Disease models tend to be substance-specific. For example, alcohol is mood-altering and tends to be constantly present in the alcoholic’s thoughts; his craving for it chronically elevates it to psychological predominance, eclipsing his concern for all else. This characterization fits well with addictive consumption of cocaine, opiates, barbiturates, and amphetamines. Nicotine, however, ill fits this characterization.57 It is not mood-altering. Even when craved, nicotine does not swamp the smoker’s concern for all else (he is commonly able to transport himself to a “smoking allowed” area) and despite nicotine’s classification among the “stimulants” (along with cocaine and amphetamines), many smokers report (paradoxically) that smoking helps them to relax, a psychological state associated with the depressants (alcohol, barbiturates, and opiates). There is little question that cigarette smoking has health-harmful effects for many smokers. The Surgeon General first reported on the harmful effects of cigarette smoking in 1964, and 26 subsequent Surgeon General reports have warned of the increased risk of mortality and morbidity associated with tobacco use of any kind. The Centers for Disease Control and Prevention (CDC) reports that each year, more than 430,000 deaths in the United States result from tobacco use, making

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tobacco use the leading preventable cause of death and disease in the country. The CDC further reports that the 3,000 young people join the ranks of tobacco users each day. The social costs attributed to smoking exceed $50 billion annually. Lost earnings and lost productivity, ordinarily classified as personal costs, total an additional $47 billion. Lost tax revenues secondary to lost personal earnings and productivity increase the social costs of smoking. The Department of Health and Human Services claims that preventing tobacco use is one of the nation’s most important health challenges. On August 9, 2000, the Surgeon General released “Reducing Tobacco Use.” Claiming that a 50% reduction in smoking rates could be achieved over the next decade, the report proposed widespread use of programs that had proven effective in substantially reducing the number of people who are addicted to nicotine.58 Many smokers die from diseases linked to smoking—principally, heart disease, emphysema, and lung cancer. Yet, not all smokers die earlier than average, nor do they all die from smokingrelated illnesses. It is tempting to assume that smokers would tend to live longer, healthier lives if they refrained from smoking, but this is not necessarily true. If smokers are addiction-prone, then nicotine almost certainly plays an important role in their brain management, even though its effects on the cardiovascular system are bad. Stopping smoking (or never starting) presumably would lead an addiction-prone person to search for alternative brain-management strategies. These may be less health-harmful, but may not. The neurobiology of chemical addiction has been studied, largely in animal models. It has been found that animals can be made to selfadminister all the chemicals to which humans are addicted. Craving can be “cue-elicited” in animals, but only humans can prevent triggering of the cue by crossing the street to avoid passing a tavern where they formerly drank. However, no animal models have been developed for gambling addiction, or emotional dependence addiction, or workaholism.

VA C C I N E S F O R C H E M I C A L S U B S TA N C E A D D I C T I O N ? Recent research holds promise for enhanced success in extinguishing specific, health-harmful chemical addictions, especially for addicts who would welcome medical assistance in quitting. The British company Cantab Pharmaceuticals

has developed TA-CD, a vaccine for cocaine. It has completed successfully stage I clinical trials where it proved safe, well tolerated, and immunogenic.59 Composed of a cocaine derivative coupled with a carrier protein, together formulated with the adjuvant aluminum hydroxide, TA-CD is a molecule sufficiently large to recruit an immune response in all tested subjects, conferring “active immunity.” When “real cocaine” enters the immunized subject’s bloodstream, his antibodies bind to it, making the resulting chemical compound too large to cross the blood–brain barrier. The antibody-producing effects persisted as long as 84 days in some subjects. Cantab has also developed a vaccine for nicotine, based on the same technology. Vaccines based on other technologies have also been developed.60 These consist of synthesized antibodies produced in the laboratory. They are powerful but comparatively short-lived. Since they do not activate the immune system, they provide “passive immunity.” If vaccinated voluntarily with good informed consent, the addict knowingly renders himself unable to experience the psychotropic effects of the health-harmful substance. If vaccinated involuntarily, someone besides the addict renders him unable to experience the substance’s psychotropic effects. The revaccination decision raises further questions. Does being vaccinated enable the addict’s true self freely to address the revaccination decision? Would an addict’s refusal of revaccination be an informed but unfree choice, unduly influenced by memories of past pleasures? Or, having turned over a new leaf, has he made a wellcalculated risk assessment that the vaccine adjuvant is no longer necessary to saying clean?

ADDICTION AND THE P U B L I C H E AT H ? Not everyone who consumes alcohol becomes an alcoholic. Not everyone who smokes or snorts cocaine gets addicted to it. Nor is every cocaine addict addicted to the same degree. Some kick the habit easier than others. Individual brains vary. Sedative and stimulant chemicals don’t play the same role in each individual’s brain management. Genetic profiling will enable a fuller neurobiological understanding of why addictive behavior varies so much between individuals and why some individuals are more addiction-susceptible to specific chemicals than others. It will also enable identification of individuals at substantially increased risk for addiction to stimulant and sedating chemicals. It will facilitate design of

Responsibility for Health Status individualized psychotropic treatment and immunization plans. Some harmful addictions are associated with high social costs. These include recurrent hospital admissions for which the individual does not pay, transmission of infective/infectious diseases associated with injection drug use, participation in a violent, illegal market of untaxed transactions, etc. The “social cost” in each case refers to social resource consumption resulting from addictive behavior for which the individual does not pay and that might have gone to socially better uses. Public-health professionals are preventionists, dedicated to reducing the social costs of unhealthful behavior. They can be reasonably expected to make a “social responsibility” argument for using the state’s police power to make “throffers” (threatoffers) to proven cocaine addicts—accept vaccination (“offer”) to treat your addiction or go to jail (“threat”). It is also reasonably expectable that public-health professionals will appeal to parens patriae to justify population-wide screening to facilitate early identification of addiction-susceptible individuals. Identified individuals could then be enrolled in a program of regular vaccinations to prevent addiction to specific stimulant or sedative chemicals. Preventing chemical addiction with a vaccine seems cost-effective compared with mitigating the harmful medical and criminal consequences of addictive behavior. From an anti-utilitarian perspective, John Rawls has argued that an adequate theory of justice must nullify the effects of the natural lottery and the contingencies of social circumstances.61 If addiction susceptibility has a genetic component and environmental exposure to addictive chemicals adversely affects prospects for a successful life of the genetically susceptible, then preventing addiction by vaccination would be presumptively required by justice.62 Indeed, fair equality of opportunity would give prima facie support to social screening programs and childhood vaccination. The equality-of-opportunity principle would trump parental discretion to decide whether to screen their children for addiction susceptibility. Substantial ethical concerns arise, however. Would testing occur at birth? What degree of increased addiction susceptibility would trigger vaccination? Would it be mandatory to vaccinate infants identified at (low/moderate/high) risk for addiction to stimulants or sedatives? Would respect for a child’s “right to an open future”

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make it mandatory for parents to vaccinate their addiction-susceptible children? Would it count as child neglect if they fail? How would access to test results be regulated? Would employers have access to results? Schools? Genetic screening for addiction susceptibility might underwrite some frank, exclusionary discrimination: Individuals with profile x need not apply for positions a, b, c. It might be used in rationalizing soft discrimination. An employer committed to a drug-free workplace might hire individuals susceptible to addiction for healthharmful substances provided that they keep their vaccination records up to date. It might be argued that doing so reasonably accommodates an (ADA) disability, not unlike an employer who will hire visually impaired individuals but insists that they wear the corrective aids that enable jobeffective functioning. Depending on one’s theory of freedom, mandatory vaccination may or may not count as a loss of freedom. Some theories of freedom find no paradox in “forcing to be free,” just as some theories will underwrite “forcing to be sane.”63 Too, extinguishing one harmful addiction (whether or not by vaccine) does not preclude substitution of another addiction equally harmful or more harmful. Even if a vaccine deprives cocaine of its psychotropic effects, it will not necessarily block its cardiogenic/cardiotoxic effects. Some vaccinated cocaine addicts may continue consuming cocaine for its cardiogenic effects. Preventing harmful addictions by vaccination will almost certainly have unintended consequences; it may inhibit commitment and devotion, for example.

MANAGING THE PROBLEM OF ADDICTIVE DESIRE: U LY S S E S In the Odyssey, Homer described a provocative solution to the problem of addiction-related loss of self-control. In the episode involving Ulysses and the Sirens,64 a enchantress, Circe, tells Ulysses that his journey unavoidably will take him within earshot of an island inhabited by the Sirens. She warns him that the Sirens present a fatal attraction to seafarers. Their song is beautiful, addictive, and ultimately irresistible. Auditors, initially attracted from afar by the song’s faint beauty, desire to hear it more clearly. As they draw nearer, their desire to listen grows stronger and stronger as the singing grows louder and louder. Ultimately, auditors, in thrall to an irresistible desire to listen, are “warbled to death.”

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Circe instructs Ulysses how to pass by the Sirens safely. To eliminate the threat to his men, he must stop up their ears with wax. However, Circe well-knows Ulysses’ character—remarkably bold and curious. She anticipates that he will desire to hear the Sirens for himself, so she further advises him how to satisfy both his first-order desire to listen to the Sirens and his second-order desire that he be spared the fatal consequences that typically result from listening to them.65 Prior to stopping up his crews’ ears with wax, Ulysses must (1) order his crew to lash him securely to the ship’s mast; (2) order that they disregard as invalid any directives he might seem to give them while he is restrained; and (3) order them to untie him when the danger has passed and he has regained himself, restoring him fully to command. Ulysses fears that Circe’s scheme may not work. He also thinks that it would not be right to put his men at risk without their knowledge, so he discloses the whole plan to them “so that whether we live or die we may do so with our eyes open.” It turns out that the plan works as advertised.

A N A LY Z I N G T H E H O M E R I C S O L U T I O N TO A D D I C T I V E DESIRE Homer describes Circe as “a great and cunning goddess.” She has remarkable insight into Ulysses’ character and is benevolently dedicated to preparing him to face his ultimate challenge, still years away. She has supernaturally accurate prognostic ability. Yet she knows she cannot disclose to him completely his curriculum, all at once. She must ration his lessons progressively. His vices (fearlessness and prideful overestimation of his power) superficially resembled real virtues (bravery, audacity, self-confidence). Circe’s individualized curriculum teaches by experience (“test first, lesson later”). For example, Ulysses’ fearlessness makes him reckless and unmindful of his limitations. He could not become brave until he felt and overcame fear in the face of real danger. Ulysses was not easily frightened. So Circe sent him into hell—literally, where he was scared to death. Having been terrified in hell, Ulysses was no longer fearless. His pride had taken a blow. He was ready for his next lesson in self-knowledge—to experience loss of self-control to an addictive desire. Circe knows that Ulysses’ willpower, however imposing under many circumstances, is no match for the Sirens’ challenge to it. In other words, she knows with certainty that Ulysses will become acutely self-destructive when exposed to the

pleasure of their addictive song. To learn a characterbuilding lesson, Ulysses’ insatiable curiosity must acquaint him with the power of a (lethal) irresistible desire. Were Circe’s prescription for Ulysses solely survival-regarding, then she would have prescribed the wax prophylactic for him as well as for his men. But he would have learned nothing from “just say no.” Circe’s plan enables Ulysses to feel the motivating power of that most dangerous of irresistible desires—for divine knowledge and foresight—and to survive the experience. Ulysses’ response to Circe’s plan is mindful, not prideful.66 He does not take offense at her implying that his willpower cannot save him from the force of his own desires, yet he is not completely confident in her plan. Everything is at stake, the risk is high for him and his men, so he discloses everything to them beforehand so that all shall proceed “with their eyes open.” Obviously, Ulysses trusts his men to do their part. They prove worthy of it: they do not exploit his vulnerability in any way and they accurately recognize when Ulysses has regained his capacity for self-command and restore him to his position of command over them.

T H E U LY S S E S C O N T R A C T : A S O L U T I O N TO CHRONIC LO S SES OF SELF-CONTROL? Since at least the early 1980s commentators have discussed whether the law should recognize as valid and enforceable some version of the Homeric solution to predictable losses of self-control due to mental illness.67 The proposals vary in detail but all recommend an institutional arrangement whereby a competent person would authorize strangers (albeit professionally certified) to disregard his future demands for personal liberty in order that his mental illness should receive full and adequate treatment. For example, a Norwegian law of psychic health protection recognizes and enforces an individual’s voluntarily making an irreversible decision to admit himself to a mental hospital.68 Whether time-indefinite or time-limited, the so-called Ulysses contract would require a revision in American moral and legal rules that currently recognize that the liberty to refuse treatment (or to withdraw from research at any time) trumps benevolently directed professional care. Epistemic and ethical disanalogies between myth and reality show why institutionalizing the Homeric solution to addictive desire would

Responsibility for Health Status be unwise. In the Homeric myth, the trust between Ulysses and Circe is personal and merit-based, not status-based. Not all members of Circe’s “profession” are trustworthy; some are malicious or capricious. The trust Ulysses places in Circe is not transferable on the basis of professional status. That Circe was available when Ulysses needed her was just lucky. Nor did Ulysses have a “pickup” crew: he trusted his men completely because they had proven their reliability in shared peril. Not only is there variable trustworthiness among human professionals (some are incompetent, many are venal, many are overworked), none can claim goddess-like analytical insight into the individualized dynamics of self-development. None can claim near-perfect prognostic foresight. On the contrary, even the best human professional therapists (whether psychiatrists or psychologists) see best retrospectively. Prospectively, they see “through a glass darkly.” Their diagnostic categories are imprecise. The reality of those categories is based on majority vote of human practitioners, not consultation with “a great and cunning goddess.” In short, human institutions must manage uncertainty, establish standards of proof, and distribute the burden of carrying it to minimize rights violations and harm associated with human professional arrogance, venality, incompetence, and plain mistake. Mill provided an excellent (Kantian) reason against recognizing legally such self-binding: “The principle of freedom cannot require that he should be free not to be free.”69

RESPONSIBILITY AND T H E I N D I V I D UA L M A N D AT E T O H AV E H E A LT H C A R E INSURANCE Outpatient treatment for Brenda Payton’s kidney failure (her failed transplant and her hemodialysis) was paid for by the end-stage renal disease program under Medicare. She also frequently relied on California’s codification of the rule of rescue for treatment made necessary by her noncompliance at Dr. Weaver’s clinic. A federal law (the Emergency Medical Treatment and Active Labor Act, 1986) that was subsequently enacted prohibits “covered providers” (parties to the Medicare/Medicaid agreements) who operate dedicated emergency departments to deny a medical screening exam and stabilizing treatment to any individual seeking care who is found to have a statute-defined “emergency medical condition” or is in active labor. If the required stabilizing

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treatment is within the capability of the institution, service must not be withheld unless the individual makes an informed refusal. This federal law incorporates a beneficence-regarding “rule of rescue.” Arguably, even individuals with health care coverage and those who are able and willing to pay would approve of this rule. It assures that they will not suffer harmful delay while their sponsorship, ability to pay or legal residency status is verified. Yet the laws prohibiting hospitals from performing an ex ante wallet biopsy not only shift to those who purchased health care coverage the costs of serving others who, ex post, lack coverage, they also create an incentive to skip having health coverage at the margin. This cost-externalizing incentive to irresponsible conduct, created by a legal rule, can be called “moral hazard.” To reduce moral hazard and to better promote individual responsibility, it is argued that an excise tax or penalty should be imposed on anyone who fails to obtain continuous health care coverage for himself and those for whose care he or she is responsible. Those who lack financial means for avoiding the tax or penalty should receive a government subsidy toward purchase of appropriate insurance. Insurance companies should be compelled to issue insurance to all eligible individuals who apply and may not exclude anyone on the basis of preexisting health conditions. In rough outline, these features were incorporated into the Patient Protection and Affordable Care Act (H.R. 3590, PL 111–148) signed into law by President Obama on March 23, 2010. This scheme gives high-risk and already sick individuals a small but probably unnecessary incentive to enter the insurance market right away. The incentives for healthy, young individuals to purchase coverage are less robust. Here’s why. The tax penalty does not become effective until 2015, when a flat dollar penalty of $325 applies. It increases to $695 after that. The alternative percentage-of-income penalty is 2.5%, but it applies only to income above the filing threshold (currently $12,050 for an individual and $18,700 for a couple). Individuals with a household income below the filing limit would be exempted from the penalty. The Congressional Budget Office estimates that coverage for an individual will be priced at $5,000 in 2015. With the predicted price of insurance so much in excess of the penalty, there will be an abiding but only slightly declining incentive to pay the fine. In other words, the law’s incentive is to delay purchasing insurance until

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costly care looms clearly in prospect and to dispense with coverage otherwise. If so, healthy, young, low-risk individuals, perhaps as many as 12 to 13 million of them, have an incentive to avoid the insurance market and wait until they actually get sick to buy insurance. Since the law says no one may be denied insurance based on health status or prior health condition, why commit to paying ahead of time on a monthly basis? Requiring insurance companies to sell coverage to anyone who wants it, at a price that takes no account of their health status, must then drive up the cost of health insurance to all those who purchase it.Constitutional challenges have been raised to the law’s mandate that covered individuals must enter into business with private companies. Ambiguity has emerged whether the mandate is a tax or a penalty, an important question to resolve because different provision of the Constitution apply depending on how this question is disambiguated. One circuit court (the 11th) has struck the Affordable Care Act. Two others (the 6th and the DC Circuit) have upheld. Further difficulties loom because the law exempts certain individuals from the insurance mandate on the basis they belong to religious health ministries, a potential violation of the anti-establishment clause of the First Amendment. The Supreme Court has scheduled 3 days of oral argument to hear constitutional challenges to the Affordable Care Act. A decision is expected in June, 2012.

CONCLUSION In 1993, The Lancet reported that British surgeons at two separate medical centers refused to schedule for non-urgent coronary bypass surgery patients who refused to stop smoking. The editorial pointed out that if this principle of “selfinflicted rationing” were extended to other medical cases, the potential savings that would accrue to the National Health Service would be “unlimited.”70 Alcoholics in need of a liver transplant, HIV patients who acquired their infection through injection drug use or promiscuous sex, obese heart patients, trauma victims who wrecked while under the influence, all sports injuries, smokers with lung cancer (and, needless to say, noncompliant hemodialysis patients), all might be plausibly denied access to care underwritten by the National Health Service on the grounds that they had brought trouble on themselves. Isn’t this an irony? Employees of the National Health Service, a system best rationalized under a principle of social beneficence and community

risk sharing, invoke individual irresponsibility to justify ignoring medical need in the name of social responsibility! But the irony disappears when we recall that insurance in the context of controllable risk creates moral hazard. Especially at the margin, individuals tend to be less prudent and take fewer precautions to prevent insurance-covered losses. When risks are controllable, expanding insurance coverage creates greater moral hazard. As the moral hazard grows, the pressure to ration care on some basis or other becomes irresistible. Personal irresponsibility for worsening one’s health status justifies rationing of social resources on grounds that it’s self-inflicted. Predictably, the British surgeons were criticized on grounds that appointment to the National Health Service requires providers to care for the sick without regard to the patient’s role in causing his trouble; that doctors shouldn’t withhold health care services on punitive grounds; etc. But if physicians may never use personal irresponsibility, no matter how egregious, to deny access to health care resources, then what? Should we expect courts of law or legislators to do better using other criteria? The law of unintended consequences is not repealed by bignoring it. In 1944, F.A. Hayek claimed that “Where, as in the case of sickness and accident, neither the desire to avoid such calamities nor the efforts to overcome their consequences are as a rule weakened by the provision of assistance—where, in short, we deal with genuinely insurable risks—the case for the state’s helping to organize a comprehensive system of social insurance is very strong.”71 But where assistance is provided without regard to an individual’s ability to mitigate her health-harmful behavior, it should not be surprising when she fails to take steps to do so. Perhaps in the name of beneficence, the disease version of addiction theory denies the addict’s ability to control her behavior. But it does so at a heavy moral price—reducing her to a domestic animal. My analysis of individual and social responsibility for health status is predicated on Kant’s claim that the respect/benevolence tension must be managed, not resolved. Resolving the tension, whether in favor of respect or in favor of benevolence, is not moral progress; on the contrary, it’s moral disaster. And the problem recurs for a theory of justice: how to institutionalize an appropriate balance between respect for autonomy and rights and beneficent regard for people’s welfare interests. Libertarians favor massive weighting on

Responsibility for Health Status the respect side because of the oppressive consequences of state paternalism and moral hazard. Libertarians prefer that social impositions not reduce people to domestic animal status. Welfare liberals, on the other hand, favor shifting the balance toward the beneficence side. They think that the libertarians overemphasize respect, with a result that is practically indistinguishable from an uncaring, inhumane social order. In political morality, the tension between respect and beneficence will be managed by difficult tradeoffs at the institutional level. Autonomy and respect for it must, in the end, win the hat tip. But if Kant was right, as I’ve assumed he is, politics must be both important and inherently frustrating. No one can claim justification for knowing the precisely correct balance. Yet there should be more than a little comfort in recognizing that Mencius, writing much earlier than Kant and in a markedly different culture, appreciated the same basic dynamics in ethics.

Notes 1. The author gratefully acknowledges that comments from the following persons improved this chapter: Carl Cohen, Stephen Wear, Michael Corrado, Rosamond Rhodes, and Steve Miles. 2. Mill, J.S. (1956) On Liberty. C.V. Shields (ed.). New York: Bobbs-Merrill, p. 17. 3. Kant, I. (1964). The Doctrine of Virtue: Part II of The Metaphysics of Morals. M.J. Gregor (trans.). Philadelphia: University of Pennsylvania Press, p. 116. Kant claims that the principles of mutual love and of respect are among the “laws of duty” that function in the moral world analogously to the laws of attraction and repulsion in the natural world. He goes on to say, “And should one of these great moral forces fail, then nothingness (immorality), with gaping throat, would drink the whole kingdom of (moral) beings like a drop of water.” 4. Machiavelli, N. (1981). The Prince (G. Bull, trans.) New York: Penguin Classics, p. 130. 5. Payton v. Weaver, 131 Cal.App.3d 38, 181 Cal. Rptr. 225 (1982). 6. California’s Health and Safety Code section 1317 provided in pertinent part: “Emergency services and care shall be provided to any person requesting such services or care, or for whom such services or care is requested, for any condition in which the person is in danger of loss of life, or serious injury or illness, at any health facility licensed under this chapter that maintains and operates an emergency department to provide emergency services to the public when such health facility has appropriate facilities and qualified personnel available to provide such services or care.” This law

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institutionalized “the rule of rescue” in California. It was, in effect, Brenda’s insurance for missing regular outpatient dialysis. Like all insurance, it created moral hazard—an incentive to irresponsible risk-taking. 7. The physician–patient relationship is modeled on contract (“offer and acceptance”). Since the relationship is voluntary, either party may break it. However, while the patient may terminate the relationship at any time and for any reason, the physician must formally notify the patient that he intends to cease providing care and must allow the patient a reasonable opportunity to secure the services of another physician. Despite having the power to discontinue a relationship with a patient, the physician must not “abandon” the patient. Abandonment is an ethical and civil wrong that consists of harming one’s patient by negligently failing to attend to her medical needs when she is in need of care. 8. California’s Lanterman-Petris Act, section 5350 (since renumbered) provided that a conservator may be appointed for a person who is “gravely disabled as a result of mental disorder or impairment by chronic alcoholism.” 9. Schloendorff v. Society of New York Hospital, 211 NY 125; 105 N.E. 92 (1914). The right to determine what shall be done with one’s own body is one of the oldest personal rights recognized at common law. Its recognition is found in the writ system under the category of actionable wrongs called “trespass,” which covered all wrongful uses of force. An assault (and battery) is a species of trespass, namely wrongful use of force against the body (of a living person). 10. Although tobacco use/abuse and excessive alcohol consumption have gained prominent attention for their connection to decrements in health status, a recent Rand Corporation study found that obesity is associated with higher rates of chronic medical conditions and with worse physical health-related quality of life than are lifetime smoking, problem drinking, and poverty. The study found that three of five Americans are overweight (36%) or obese (23%). Rand, news release, June 7, 2001. 11. See Morreim, E.H. (1991). Balancing Act: The New Medical Ethics of Medicine’s New Economics. Dordrecht: Kluwer Academic Publishers, especially Morreim’s discussion of autonomy as responsibility, pp. 136–140. 12. Shorter v. Drury, 103 Wn.2d 645; 695 P.2d 116 (1985). 13. Williams v. Bright, 230 A.D.2d 548, 658 N.Y.S.2d 910 (1997). 14. Kant, ibid., at 121. 15. For complex metaphysical and epistemological reasons, Kant thought we must conduct our lives absent assurance that practical reason actually performed according to morality’s presuppositions— namely, that reason alone could direct the will.

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16. “Weak paternalism” justifies disrespect of another’s choices by invoking the principle that one should minimize self-inflicted harm. “Strong paternalism” justifies disrespect of another’s choices by invoking the principle that one should promote others’ welfare. 17. Mencius. (1983). D.C. Lau (trans.). New York: Penguin Books, p. 190. 18. Satel, S.L. (2007). In praise of stigma. In: Addiction Treatment: Science and Policy for the Twenty-first Century. J.E. Henningfeld, P.B. Santora, & W.K. Bickel (eds.). Baltimore: Johns Hopkins University Press, pp. 147–151. 19. Veatch, R.M. (1980). Voluntary risks to health: the ethical issues. JAMA 243:50–55. 20. Plato, The Republic, Book III, 406. (B. Jowett, trans.) The Dialogues of Plato in Five Volumes. Oxford: Clarendon Press, 1875. 21. Oates, W.J. (1940). The Stoic and Epicurean Philosophers. New York: The Modern Library, p. 494. 22. N.M.Stat.Ann. Sec 41–5-10 (2000). 23. See Martinez v. Zia Company, 99 N.M 80; 653 P.2d 1226; 1982 NM App. LEXIS 968. 24. Plato, The Republic, Book III, 405 ff. 25. See Plato, The Republic, Bk. III, 405ff. 26. Ross, S.E. (1999). “Memes” as infectious agents in psychosomatic illness. Annals of Internal Medicine 131:867–871, 867. 27. Wikler, D. (1987). Who should be blamed for being sick? Health Education Quarterly, 14(1):11–25. 28. It is well established for every known culture that health status declines with advancing age, that wealthier persons have greater life expectancy than poorer persons of the same age, and that women outlive men. A recent study of Oscar winners claims that life expectancy is significantly associated with winning the award: actors and actresses who win Oscars tend to live nearly 4 years longer than their peers who don’t win. The Oscar effect is independent of income and education. How winning an Oscar confers a survival advantage over those who don’t win is unclear. Sex also confers an independent survival advantage: actresses tend to outlive actors (77.9 years vs. 75.4 years). Whether winning an Oscar for actors offsets the survival advantage enjoyed by actresses is unclear from the study. 29. Waal, H. (1999). To legalize or not to legalize: is that the question? In Getting Hooked, J. Elster & O.J. Skog (eds.). Cambridge: Cambridge University Press, pp. 137–172, 158. 30. Manning, W.G., E.B. Keeler, J.P. Newhouse, E.M. Sloss, & J. Wasserman. (1991). The Cost of Poor Health Habits. Cambridge, MA: Harvard University Press. The authors document that real taxes on alcohol have declined over the past 50 years. They argue persuasively that the external costs resulting from excessive

drinking vastly exceed current excise taxes on alcohol. Taxes on cigarettes, by contrast, approximately offset the external costs of smoking. 31. Schmoke, K. (May 5, 1994). Side effects. Rolling Stone, pp. 38–39. 32. Epstein, R. (1995). Simple Rules for a Complex World. Cambridge, MA: Harvard University Press, p. 22. 33. Lucas, J.R. (1995). Responsibility. Oxford: Oxford University Press, Ch. 1. 34. Buchanan, A.E., & D.W. Brock. (1989). Deciding for Others: The Ethics of Surrogate Decision Making. New York: Cambridge University Press, Ch. 1. 35. Ibid., at 319. 36. See Hamer, D., & P. Copeland. (1998). Living With Our Genes. New York: Doubleday, and Kagan, J. (1994). Galen’s Prophecy: Temperament in Human Nature. New York: Basic Books. 37. Ridley, M. (1999). Genome. New York: Harper Collins, p. 163. 38. Beginning in the late 1700s, British courts of law began allowing medical psychologists to offer an expert opinion regarding the competency of individuals accused of having committed a felony. Such courtroom specialists were known to diagnose defendants as suffering from “monomania” or a “lesion of the will.” Eigen, J.P. (1995). Witnessing Insanity: Madness and Mad-Doctors in the English Court. New Haven: Yale University Press, p. 59. 39. Blazer, D.G., R.C. Kessler, K.A. McGonagle, & M.S. Swartz. (1994). The prevalence and distribution of major depression in a national community sample: The National Comorbidity Study. American Journal of Psychiatry 151:979–986. Also see Jacobs, J.G. (ed.) (1999). The Harvard Medical School Guide to Suicide Assessment and Intervention. San Francisco, CA: Jossey-Bass Inc. 40. Barsky, A.J., & J.F. Borus. (1999). Functional somatic syndromes. Annals of Internal Medicine 130:910–921, 917. 41. Petrie, K. (1989). Psychological well-being and psychiatric disturbances in dialysis and renal transplant patients. British Journal of Medical Psychology 62:91–96. 42. Jacobs, p. 7. 43. Valenstein, M., et al. (2001). The cost-utility of screening for depression in primary care. Annals of Internal Medicine 134:345–360. 44. Valenstein, p. 353. 45. Rhodes, R.P. (1992). Health Care: Politics, Policy and Distributive Justice: The Ironic Triumph. Albany: State University of New York Press, p. 13. 46. See http://www.nsc.org/Documents/NOV10 T2b.pdf. 47. See, for example, Weinstein, M.C., & W.B. Stason. (1976). Hypertension: A Policy Perspective. Cambridge, MA: Harvard University Press.

Responsibility for Health Status 48. Cf. Rosker v. Goldberg, 453 U.S. 57 (1981), holding that Congress did not violate the due process clause of the 5th Amendment when it required registration of men and not women, and Selective Draft Law Cases, 245 U.S. 366 (1918), holding that enforced military duty by Congress does not offend the 13th Amendment prohibition of involuntary servitude except as a punishment for crime. 49. “Monomanie” was apparently coined in 1817 by a French forensic physician to refine the ancient name for partial insanity, melancholia. See Eigen, J.P. (1995). Witnessing Insanity. New Haven: Yale University Press, p. 73. 50. Hill, T.E. Jr. (1991). Autonomy and Self-Respect. New York: Cambridge University Press, p. 12. 51. Ainslie, G. (1999). The dangers of willpower. In Getting Hooked. J. Elster & O.J. Skog (eds.) Cambridge: Cambridge University Press, p. 67. 52. But see Damasio, A. (1994). Descartes’ Error: Emotion, Reason and the Human Brain. New York: Avon Books, pp. 10–14. 53. Becker, G.S., & K.M. Murphy. (1988). A theory of rational addiction. Journal of Political Economy 96(4):675–700. 54. Ainslie, G. (1992). Picoeconomics. Cambridge: Cambridge University Press, pp. 3–4. The claim that addicts are ambivalent is based on what addicts say about themselves. Strictly, behavior isn’t ambivalent. 55. Ainslie, G. (1999). The dangers of willpower. In Getting Hooked. Elster J & Skog OJ (eds.). Cambridge: Cambridge University Press, pp. 65–92. 56. Satel, S.L., & F.K. Goodwin. (1998). Is Drug Addiction a Brain Disease? Washington, DC: Ethics and Public Policy Center. 57. Elster, J., & O.J. Skog (eds.) (1999). Getting Hooked. Cambridge: Cambridge University Press, p. 5. 58. On November 10, 2010, The U.S. Department of Health and Human Services released “Ending The Tobacco Epidemic.” It claimed.... See http://www.hhs. gov/ash/initiatives/tobacco/tobaccostrategicplan 2010.pdf 59. Visit Cantab’s website for information: http:// www2.prnewswire.co.uk/cgi/news/release?id=19568. More recently, the vaccine was tested in a phase 2b, randomized, double-blind, placebo-controlled trial with efficacy assessed to 24 weeks. Subjects who obtained high IgG antibody levels significantly reduced their cocaine use. However, they achieved only 2 months of adequate cocaine blockade. See Martell, B.A., et al. (2009). Cocaine vaccine for the treatment of cocaine dependence in methadone-maintained patients. Archives of General Psychiatry 66(10):1043. 60. See Kaebnick, G.E. (2000). Vaccines against bad habits. Hastings Center Report 30(5):48. 61. Rawls, J. (1971). A Theory of Justice. Cambridge, MA: Harvard University Press, p. 15.

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62. Rawls says, “the parties want to insure for their descendants the best genetic endowment (assuming their own to be fixed). The pursuit of reasonable policies in their regard is something earlier generations owe to later ones, this being a question that arises between generations” (p. 108). 63. See Washington v. Harper, 494 U.S. 210 (1990), holding that a mentally ill prisoner may be subjected to involuntary treatment with psychotropic medication when medication will assist him in organizing his thought processes and in regaining a rational state of mind and he is gravely disabled or poses a likelihood of serious harm to himself or others. 64. See Hamilton, E. (1963). Mythology: Timeless Tales of Gods and Heroes. New York: Mentor Books, p. 214. The Odyssey is available online at http://classics. mit.edu/Homer/odyssey.12.xii.html. The relevant passages from Book 12, including Circe’s instructions followed by Ulysses’ account of their execution, read as follows: First you will come to the Sirens who enchant all who come near them. If any one unwarily draws in too close and hears the singing of the Sirens, his wife and children will never welcome him home again, for they sit in a green field and warble him to death with the sweetness of their song. There is a great heap of dead men’s bones lying all around, with the flesh still rotting off them. Therefore pass these Sirens by, and stop your men’s ears with wax that none of them may hear; but if you like you can listen yourself, for you may get the men to bind you as you stand upright on a crosspiece half way up the mast, and they must lash the rope’s ends to the mast itself, that you may have the pleasure of listening. If you beg and pray the men to unloose you, then they must bind you faster. . . “Then, being much troubled in mind, I said to my men, `My friends, it is not right that one or two of us alone should know the prophecies that Circe has made me, I will therefore tell you about them, so that whether we live or die we may do so with our eyes open. First she said we were to keep clear of the Sirens, who sit and sing most beautifully in a field of flowers; but she said I might hear them myself so long as no one else did. Therefore, take me and bind me to the crosspiece half way up the mast; bind me as I stand upright, with a bond so fast that I cannot possibly break away, and lash the rope’s ends to the mast itself. If I beg and pray you to set me free, then bind me more tightly still.’ “I had hardly finished telling everything to the men before we reached the island of the two Sirens, for the wind had been very favourable. Then all of a sudden it fell dead calm; there was not a breath of wind nor a ripple upon the water, so the men furled the sails and stowed them; then taking to their oars they whitened the water with the foam they raised in rowing. Meanwhile I look a large wheel of wax and cut it up small with my sword. Then I kneaded the wax in my strong hands till it became soft, which it soon did between the kneading and the rays

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of the sun-god son of Hyperion. Then I stopped the ears of all my men, and they bound me hands and feet to the mast as I stood upright on the crosspiece; but they went on rowing themselves. When we had got within earshot of the land, and the ship was going at a good rate, the Sirens saw that we were getting in shore and began with their singing. `Come here,’ they sang, ‘renowned Ulysses, honour to the Achaean name, and listen to our two voices. No one ever sailed past us without staying to hear the enchanting sweetness of our song—and he who listens will go on his way not only charmed, but wiser, for we know all the ills that the gods laid upon the Argives and Trojans before Troy, and can tell you everything that is going to happen over the whole world.’ “They sang these words most musically, and as I longed to hear them further, I made by frowning to my men that they should set me free; but they quickened their stroke, and Eurylochus and Perimedes bound me with still stronger bonds till we had got out of hearing of the Sirens’ voices. Then my men took the wax from their ears and unbound me.”

65. See, e.g., Frankfurt, H. (1971). Freedom of the will and the concept of a person. Journal of Philosophy 68:5–20. 66. I rely on Adam Smith’s perspicuous analysis of “excessive self-estimation.” See his Theory of Moral Sentiments, Raphael and Macfie (eds.). Indianapolis: Liberty Fund, 1984, pp. 254 ff.

67. Can a subject consent to a “Ulysses contract”? Hastings Center Report August 1982 at 26. Howell, T., et al. (1982). Is there a case for voluntary commitment? In Contemporary Issues in Bioethics, 2nd ed., T.L. Beauchamp & L. Walters (eds.), p. 163; Dresser, R.S. (1984). Bound to treatment: the Ulysses contract. Hastings Center Report, June, p. 13; Dresser, R.S. (1982). Ulysses and the psychiatrists: a legal and policy analysis of the voluntary commitment contract. 16 Harvard Civil Rights-Civil Liberties Law Review 777; Cuca, R. (1993). Ulysses in Minnesota: first steps toward a self-binding psychiatric advance directive statute. 78 Cornell Law Review 1152; Winick, B.J. (1996). Advance directive instruments for those with mental illness. 51 University of Miami Law Review 57; Stavis, P.F. (1999). The nexum: a modest proposal for self-guardianship by contract, a system of advance directives and surrogate committees-at-large for the intermittently mentally ill. 16 Journal of Contemporary Health Law & Policy 1. 68. Elster, J. (1979). Ulysses and the Sirens: Studies in Rationality and Irrationality. Cambridge: Cambridge University Press, p. 38. 69. On Liberty, 101. 70. Dean, M. (1993). Self-inflicted rationing. The Lancet 341:1525. 71. Hayek, F.A. (1944). The Road to Serfdom. Chicago: University of Chicago Press, 121.

16 Health Care Justice and Political Agency 2011 PAT R I C I A S . M A N N

In evaluating any utterance or action, one must take into account not just the moral qualities of what is actually done or said, but also the identity of the agent or speaker, the addressee, the occasion, the means, and the motive. aristotle , poetics , quoted by justice stevens, dissenting in citizens united v. federal election commission 

Our Nation’s speech dynamic is changing, and informative voices should not have to circumvent onerous restrictions to exercise their First Amendment rights . . . On certain topics corporations may possess valuable expertise . . . the Government may not suppress political speech on the basis of the speaker’s corporate identity.” justice kennedy, citizens united v. federal election commission 

H E A LT H C A R E J U S T I C E A DECADE AGO Ten years ago, when Rosamond Rhodes, Margaret Battin, and Anita Silver proposed their first edition of this volume, America was in a very different place. We were in the final years of the Clinton administration, and U.S. global dominance, secured with the fall of the Soviet Union in 1989, remained unquestioned. Our country was running a budget surplus, and the events of 9/11 were still in the future. Yes, 44 million Americans lacked health care coverage. U.S. failure to provide basic health care coverage for a growing number of its citizens appeared in 2000, however, to be anomalous, one of those startling public facts— along with our huge prison population, and our continued use of capital punishment—leading international commentators to shake their heads and puzzle over an American barbarian streak. A decade ago, America’s failure to provide universal health care coverage was an aberrant phenomenon within a confident nation whose proud tradition of global leadership in many areas of social justice, from universal education to women’s rights in employment and sports, was unquestioned. In my article for the first edition of this volume, I pointed to the fact that for many contemporary

philosophers, including John Rawls, Ronald Dworkin, and Amartya Sen, it was a simple matter to show that distributive justice required universal health care coverage in a society with the material and technological resources of the U.S., particularly insofar as all other affluent democracies provided such coverage.3 I attempted to answer the obvious questions: How did America find itself with this oddly compromising problem of social injustice? Why was there no policy debate over nationalized health care coverage on the political agenda in 2000? The lack of a political will to address this problem was perplexing, and demonstrated a gap between ideals of distributive justice and an apparent national choice of looking the other way when it came to health care. I noted that while a Marxist theorist, such as Rodney Pfeffer, might explain this gap between political ideals of distributive justice and our current health care policies as straightforwardly a function of our capitalist political economy, that explanation fails insofar as Canada and many European nations have national health care in the context of economies that must be generally described as capitalist.4 More to the point, Dworkin had recently written a book, Sovereign Virtue (2000), in which he argued that there was a basic “real world” problem for any theory of

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distributive justice today, namely that we live in a society in which the majority of people accept a high degree of inequality, and indeed, seem to prefer it over policies that would address this inequality. Dworkin viewed the problem of the millions of uninsured Americans in terms of liberal individualism in contemporary America, and he proffered a theory of “ethical individualism,” committed to persuading liberal individuals that it was necessary to ameliorate distributive injustices in the U.S. today.5 I had written a book a few years before, Micro-Politics: Agency in a Postfeminist Era (1994), arguing that such theories of liberal individualism, and in particular theories about the “agency,” or meaningful actions of liberal individuals, needed to be complicated somewhat. I argued that individual agency, or meaningful individual actions, must be, could only be, understood as occurring within particular social relationships, and in the context of particular overarching social institutions. Moreover, within such a context, individual actions typically involve multiple dimensions of motivation. While Dworkin and others writing within our modern, Western tradition of liberal individualism typically emphasize the self-referential, self-interested dimension of individual action, I argued that individuals rarely act without a sense of their responsibilities to themselves and others in a particular context, and they are also typically aware of positive or negative forms of recognition they are likely to elicit with their behavior within a particular context.6 Because health insurance in this country has been organized and distributed through an employment-based system for more than 50 years, our American sense of individual agency regarding health care has been very much influenced by its association with the workplace. Unlike European countries and Canada, where health care since World War II had been conceived as a component of social and economic rights guaranteed by the government to all citizens from the moment of birth, health care in America was understood by everyone as a function of individual employment. Just as each adult individual was responsible for securing a job to feed, clothe, and house him- or herself and family, so each individual was responsible for securing health care insurance by means of such employment, or alternatively, was responsible for paying for doctors’ visits, treatments, and drugs as market-based commodities like food or housing. A multidimensional social analysis of individual

health care agency a decade ago reflected health care’s employment-based location in people’s lives in the U.S. As I explained in my book, Micro-Politics, the model of one-dimensional liberal individual agency assumed by Dworkin and other philosophers in our tradition had its origins at the end of feudalism in the early modern industrial period, where men first began contracting individually for their labor in the emerging modern workplace. No longer were these men defined in terms of an historical, family-based relationship to the land as in agrarian feudal relationships. Instead, the rational, autonomous, desiring agency of these new urban factory workers was emphasized by 17th- and 18th-century thinkers such as René Descartes, Thomas Hobbes, and Adam Smith, providing the enduring foundation for our conception of liberal individualism. Of course, as Marx emphasized somewhat later, in the 19th century, the “desiring autonomy” of these workers was greatly overrated, insofar as they chose and competed to work in often abysmal factory conditions based on the fact that they and their families would die of starvation if they did not have such a job. Moreover, my multidimensional social analysis revealed that such individuals were hardly autonomous insofar as they were typically the heads of “incorporated family selves.” As heads of family these “autonomous” male individuals were motivated by a sense of responsibility to wives and children who would not eat if they did not provide for them, and as fathers and husbands they were only able to work the long hours they did insofar as they could return at night to food, a home, and children maintained for them by a devoted, hardworking wife. Nevertheless, this idealized vision of autonomous liberal individual agency remains the foundation stone for contemporary philosophers within our Western tradition, from John Rawls to Ronald Dworkin. In my article 10 years ago, I discussed the similarly enduring strength of this narrative of autonomous individual agency within the U.S. political sphere, offering the analysis of historian Joyce Appleby in her book, Inheriting the Revolution: The First Generation of Americans (2000). Appleby anchored what she saw as this “peculiar national identity of autonomous and enterprising individuals that has come to characterize Americans” in the challenging demands and rich opportunities for individual initiative and commercial enterprise in 18th-century America.7 According to this

Health Care Justice and Political Agency 2011 familiar narrative, each American has the opportunity to succeed if he or she really makes the effort, and each of us is responsible for making this effort. A veneration for individual economic success as measured in a large income, and accumulating personal wealth was part of this tradition. While De Tocqueville was shocked by this crass American focus on moneymaking, it enabled radical democratizing forms of individual ambition and class mobility. A political corollary of this ideal of autonomous economic individualism is that it is unjust to tax the property of those who are enterprising and successful in order to support those who do not make a sufficient effort to become economically independent. So long as individual workplace autonomy remained a dominant, idealized feature of our American national identity, redistributive social policies on behalf of universal health care coverage were likely to be represented as unjust. Americans would remain inured against Dworkin’s appeals to a more ethical form of individualism; my multidimensional analysis of their agency tells us that their sense of autonomy was already defined in the context of their responsibilities towards themselves and others in the workplace, as well as within their families and community. Only a breakdown in our American institutional commitment to ideals of employment-based autonomy and employment-based health care would open the way for a different conception of individual agency relations. The 44 million Americans without health care coverage in 2000 certainly reflected the beginnings of a breakdown in our employment-based model of individually provided health care. Notably, ever since the 1960s, America had relied upon alternative systems of universal, government-provided health care for the elderly, the very poor, as well as for military veterans. The systems of Medicare and Medicaid were first instituted under President Lyndon Baines Johnson with the Social Security Act of 1965 as part of his Great Society program. Within this alternative institutional context, health care was distributed by the U.S. government to the very poor, as well as to all those over 65 years of age as a matter of social and economic right, much as it was distributed by European nations to all citizens as a matter of social and economic right. However, a decade ago, these alternative systems of government-provided health care remained exceptional within the U.S. system; a presumption of individual responsibility for employment-based health care remained dominant.

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I concluded my article 10 years ago by emphasizing that a multidimensional analysis shows individual agency as highly dynamic, influenced by changes in overarching institutions and responsive to changing relationships between individual agents. In Micro-Politics, I had discussed the fact that our gendered sense of individual agency was dramatically transformed as a combination of social events led women to be perceived for the first time as economic and political agents capable of taking an equal role in the workplace and public sphere alongside men. In response to the 1964 Civil Rights Act, the availability of convenient and effective contraception, and the Second Wave of the Women’s Movement, women’s economic and political agency expanded radically in the 1960s and 1970s. Women came to be seen as desiring economic agents alongside men in the workplace, responsible for the economic maintenance of themselves and their families, and their expectations for career success and various forms of political and economic recognition became at least formally equal to those of men. At the same time, men’s sense of familial agency expanded, such that they were perceived as having greater desires and “natural” abilities for nurturing their children, as well as greater responsibilities for children and other domestic duties. In a later article, “Meanings of Death,” I examined the ways in which our cultural expectations with respect to death were likely to be transformed by the legalization of assisted suicide. Based on dynamic multidimensional agency relations, I forecast the ways in which patients, doctors, and families would all be likely to adjust to assisted suicide as a legal end-of-life option. I sought to show the qualitative complexity of individual choices, as well as the dynamic social process by which both cultural values and individual choices were likely to evolve if we legalized assisted suicide. My analysis did not indicate whether assisted suicide was a desirable social option at that time, but it did indicate that if it became a legal option, new agency relationships would rapidly evolve between patients and their families, friends, and medical caregivers such that assisted suicide might well become a ubiquitous form of death quite rapidly.8 Similarly, in my article on health care justice a decade ago, I argued that our American sense of health care agency had the capacity for evolving rapidly should a new system of nationalized health care be instituted. Despite the dominant commitment to autonomous individual agency regarding

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health care in 2000, if our privatized, employment-based system were replaced with a nationalized universal program, I was confident that agency relations would readily evolve such that our sense of autonomous economic agency would be enhanced rather than undermined by our participation in a more just and efficient nationalized health care system. Michael Moore’s film, Sicko, released in 2007, illustrated precisely that phenomenon as he focused his camera on the lives and agency relations of individuals seeking medical treatment within nationalized health care programs in France, Britain, Cuba, and other countries.

H E A LT H C A R E A N D POLITICAL AGENCY IN 2011 Ten years later, as this second edition of the Medicine and Social Justice volume is compiled, we are in a very different place. It is not just that America has had a year-long debate over health care reform, culminating with the passage of health care reform legislation in March 2010. More significantly, the America within which the health care debate occurred in 2009–10 is a very different place than it was in 2000. America’s unquestioned global dominance, replete with visions of a unipolar world we grandly bestrode, was shattered by the attacks of 9/11. Our subsequent invasions of Afghanistan and Iraq, our long, violent military occupations of these countries, as well as huge tax cuts by the Bush Administration, turned our budget surplus into record-level budget deficits. Deregulation of banking operations and speculative securitization by financial institutions with multinational capital flows generated a global financial crisis in 2008. Unemployment levels in the U.S. rose to unprecedented levels and have remained at these levels even as government bailouts enabled the multinational financial institutions to recover very rapidly. As large and small companies struggled not to fail, many cut back on employee health care coverage, and others simply laid off workers, thus putting an end to their health care coverage. The numbers of individuals without health care coverage rose above 50 million, and millions more continue to fear the possible loss of a job, and with it their access to health care. It was in this context that the year-long health care reform debate took place. While lack of health care coverage and rising costs of such coverage are much larger problems today than a decade ago, they no longer stand out

as anomalous problems. Long-term unemployment of many who had never before been unemployed, loss of millions of homes through foreclosure, loss of individual pensions from companies and municipalities declaring bankruptcy, loss of a middle-class lifestyle taken for granted as the justly warranted achievement of individuals who had played by the rules of liberal individual economic agency: these provided the background of the 2009–10 health care debate. In this context, Michael Moore’s film, Sicko, offered an empowering vision of waking up one day to a system of universal health care like that in France or Britain—or in a United States that had extended Medicare to all age groups—where anxieties over losing a job were not compounded by anxieties over losing one’s access to health care.

POPULAR SUPPORT FOR M E D I C A R E E X PA N S I O N A N D I T S S U R P R I S I N G FA I L U R E T O AFFECT THE 2009–10 H E A LT H C A R E D E B AT E Medicare has become a very popular program in the past decade, and during the year-long public debate over health care reform, polls repeatedly showed that a healthy two-thirds majority, and more, of Americans supported extending Medicare to cover younger age groups as a means of resolving the health care crisis caused by millions of people currently lacking any sort of coverage and rising costs for those with coverage. Despite health care industry efforts to label any form of Medicare extension or universal coverage as “socialist,” Americans were staunch and unyielding in their commitment to this successful program.9 Moreover, highly respected economists such as New York Times columnist and Nobel Prize winner, Paul Krugman, and many health care experts such as Marcia Angell, former editor of the New England Journal of Medicine, also supported such a restructuring of our health care system as the necessary basis for solving our everworsening problems of rising costs and falling coverage. Such experts explained in no uncertain terms why medical services are not efficiently distributed as free-market commodities, and why government-run systems like Medicare, as well as the Veterans Administration for military veterans, are able to provide medical services with greater efficiency, enabling a more just and fair distribution of health care to all who need it.10 While Senator Ted Kennedy, who had long supported an

Health Care Justice and Political Agency 2011 extension of Medicare, was no longer there to promote it in the Senate, Congressmen Dennis Kucinich and John Conyers sponsored a bill, HR 676, in support of a Medicare-for-all, single-payer system, with the support of approximately 90 members of Congress.11 Nevertheless, despite a seemingly overwhelming democratic mandate, backed by the analysis of health care experts and professionals, proposals for an extension of Medicare, and other singlepayer alternatives, were not allowed to become part of the ongoing policy “debate.” Advocates and supporters of single-payer programs, respected medical doctors and other health care professionals, were not invited to participate in the various high-level roundtable discussions scheduled by the president and his advisors, and were not allowed to testify at Congressional hearings devoted to this topic.12 President Obama had affirmed the hypothetical wisdom of a singlepayer solution several years prior to becoming president. However, having proposed health care reform as a major policy goal in 2009, President Obama immediately labeled proposals for extending Medicare and other single-payer options as “politically impossible.” Few doubted that this change in position reflected the lobbying power of the highly profitable health care industry. President Clinton had been similarly influenced by the health care industry against proposing a single-payer national insurance plan in 1993, contrary to the advice of health care experts, who even then promoted the greater efficiency of a single-payer system. The difference 17 years later was that health care costs had risen astronomically, as had the numbers of Americans without access to more costly medical services, while popular support for Medicare and its expansion were also much greater. As our health care problems intensified over the past decades, economists and health care experts frequently compared the U.S. system with those of other advanced nations offering public insurance programs, explaining why a single-payer solution offered the only possibility for achieving both efficiency and justice, staving off ever-increasing health care costs while extending coverage to everyone. They pointed to the fact that we already had such efficient systems in place, with Medicare, Medicaid, and the Veterans Administration, systems that could be expanded readily. When President Obama announced that a single-payer solution was politically “impossible,” some of these experts reluctantly accepted his declaration and supported proposals for amending

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and extending our current system, still advocating for a “public option” as a component of the new reform package.13 In fact, the influence of the for-profit health care industry was such that even a very modest “public option” was written out of the final health care reform legislation as passed in March 2010.

A MICRO-POLITICAL A N A LY S I S O F T H E P O P U L A R M A N D AT E F O R M E D I C A R E E X PA N S I O N I was initially amazed to see the results of polls showing that 65% to 75% of Americans supported an extension of Medicare as a solution to our current health care problems.14 This constituted a dramatic change in attitudes from just a decade before. But I should not have been surprised. A micro-political analysis of agency relations makes this rapid transformation of attitudes readily comprehensible. Gendered notions of agency were rapidly transformed in the 1970s as women were newly seen as having both the rights and the responsibilities of economic agency in the public sphere. Almost overnight, it became normal for women to throw aside previous assumptions of a domestic career as wife and mother, and to have public career aspirations like those of men, whether as lawyers, doctors, bankers on Wall Street, or as electricians and plumbers. Similarly today, the global economic crisis that began in 2007 has brought with it dramatic changes in the overarching economic institutions framing the American workplace, providing an opening for dramatic changes in economic agency relations, and correspondingly health care agency. When America’s largest and most established financial institutions were threatened with economic collapse in 2008, these powerful financial institutions were deemed “too large to fail,” and Congress approved a huge, trillion-dollar government bailout that saved them. Today these corporations are healthy, or at least profitable again for the individuals who run them. But idealized American visions of our society as based upon a competitive marketplace, free of government “interference,” within which autonomous and enterprising individuals and corporations succeed or fail as a result of their own efforts, have been severely undermined. Moreover, with the bursting of the housing bubble, all those companies that were not bailed out, basically the rest of the American economy, fell into a period of crisis and transformation that

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continues today, resulting in an official unemployment rate hovering close to 10%. According to many reliable economic indicators the true unemployment figure is much worse; more like one out of six Americans who would like a job are unemployed, with many others “under-employed,” waiting out the “Great Recession” in part-time, low-paying jobs. Among those who remain employed, anxieties about being laid off continue. Wages, salary levels, and health care coverage have declined as employers outsource labor, expanding production overseas and offering domestic wage and benefit cuts as an explicit or implicit alternative to job loss. American businesses must compete with businesses in other countries where employers do not have to provide health care benefits insofar as they are provided by government-run public insurance programs, Disillusioned Main Street employers and employees, alike, wonder why only the most powerful corporate Wall Street economic agents were bailed out. The limits of individual economic autonomy in this period of unstable retrenchment have become clear. A decade ago, our American commitment to ideals of economic autonomy and employmentbased health care appeared very firm. However, today, a breakdown in the economic institutions that supported what Joyce Appleby found to be our uniquely American faith in individual economic autonomy, and with it employmentbased health care, has provided the basis for a major shift in attitudes. The economic agency of corporate leaders seems to have been enhanced rather than diminished by government bailouts. The government has not similarly bailed out Main Street, and individuals have lost their houses to foreclosure, and their businesses and jobs and health care to an enduring economic slowdown. Many individuals are faced with objectively diminished economic and health care agency, despite their best efforts to find and maintain employment. It is no longer difficult to comprehend a universal program of Medicare as a form of government bailout that would enhance our sense of individual agency. Insofar as many today are unemployed and under-employed despite their best efforts as desiring and responsible economic agents, an extended Medicare program enabling individuals of all ages to seek medical care and treatment when faced with medical problems is no longer viewed as unfairly benefiting those who have not made a sufficient effort to obtain employment.

EXCLUSION OF MEDICARE E X PA N S I O N F R O M T H E D E B AT E An expansion of Medicare, as an efficient, proven single-payer system capable of addressing and resolving our health care problems of coverage and cost-control, makes objective sense, as health care experts have assured us, and international comparisons demonstrate. I argued 10 years ago that a large change in social attitudes would be necessary in order to create a popular mandate for such an expansion. A micro-political agency analysis currently reveals that the devastating economic downturn that has gripped Middle America since 2007 has provided a sufficiently powerful ground for such a change in social attitudes, resulting in the popular mandate that has now formed in support of an expansion of Medicare to provide universal coverage. However, despite unquestioned popular as well as expert support for the expansion of Medicare as a solution to the problems of coverage and cost-control, this option never became a serious part of the year-long health care “debate.” Given the popular mandate for such an extension, failure to include robust discussion of Medicare extension and related nationalized health care programs such as HR 676, proposed by Congressman Dennis Kucinich, within the year-long debate constitutes a failure in democracy, a democracy deficit. But this is to name the problem rather than to analyze it. A micro-political analysis can provide us with some relevant insights, but no sufficient explanation. One part of the answer is evident. While the institutional context for action, and agency relations, changed dramatically for Middle Americans struggling through this period of economic dislocation and loss on Main Streets throughout America, the context for action and agency has not changed so dramatically for elite members of society, whether corporate leaders on Wall Street or congressional and executive leaders. Obviously, the health care industry—the health-insurance companies, the pharmaceutical companies, the profit-driven health care providers—did not want there to be any serious discussion of an expansion of Medicare, or any other single-payer system run by the government that would eliminate much of their profit-making capacities. The power and influence of these corporations within our democracy is a large part of why there was no debate. But an analysis of corporate power and influence takes us beyond

Health Care Justice and Political Agency 2011 any traditional micro-political framework, and will be discussed below. Micro-political factors did arguably affect the individual agency of one pivotal player in the 2009–10 healthcare debate, President Barack Obama. Why did President Obama not insist on including a full discussion and evaluation of an extension of Medicare in the policy debate, out of respect for our democratic process? This presidential candidate, elected by a cross-section of Americans of all ages and races, on a huge wave of hope for new and more responsive and responsible leadership, did not fulfill this basic democratic responsibility. Elected on a platform promising change, and a repudiation of the old corrupt ways within the Washington Beltway, why did this president not create the space for a robust discussion of the single-payer option in response to the explicit democratic mandate for having such a discussion? A micro-political analysis of President Obama’s actions notes that his agency relations are affected by the fact that he is the first black president. Blacks in the U.S., like women, were not considered full economic and political agents until very recently. For 100 years after the Civil War, black men and women were legally and politically subordinated, and it was only after the civil rights movement and the 1964 Civil Rights Act that black men and women attained formal legal equality with white men and women, with the same rights and responsibilities as economic and political agents and the same formal expectations of recognition and reward. The drama of the competition between Barack Obama and Hillary Clinton in the Democratic Party primary was created by the fact that depending on which candidate won, we would be electing our first female president or our first black president, a momentous political achievement in either case. Prior to the election, a micro-political agency analysis could predict certain common features of the presidential agency of either candidate. To put it bluntly, each would arrive in power with a “recognition deficit” based upon the historically subordinated status of women and blacks in our society. As the first black or female president, each would have to manage conflicting desires for, and responsibilities to the many constituencies that had elected them. Any president might share such conflicting desires and responsibilities, insofar as presidents rule on behalf of a diverse American populace. But the first black or female president would be distinguished from a traditional white

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male president in terms of the agency dimension of recognition, and the micro-political dynamics generated by a black or female recognition deficit. Formal legal and political equality achieved in the 1960s does not immediately translate into concretely equal agency relations. Even women and blacks who have reached the highest levels of achievement operate with a “recognition deficit” insofar as white men affirmatively recognize and approve of the actions of other white men more readily. Women and blacks may succeed despite this deficit, primarily by rigorously conforming to the expectations of the white men they interact with so as to overcome their racial or sexual recognition deficit. Anyone elected as U.S. president today will be indebted to groups of financially powerful white men. However, the responsibility dimension of agency in women and blacks is overdeveloped, insofar as the agency of women and blacks as subordinates was defined by their responsibility to address the needs and expectations of the dominant white male husband or owner or employer. And the first black or female president will have achieved the presidency only by conforming very closely to the expectations of the financially powerful white men who backed them. The first black or female president will continue to adhere closely to the expectations of the financially powerful white men he or she owes his or her presidency to, more concerned finally with failing to satisfy the expectations of these white power-brokers than with offending and disappointing the expectations and hopes of their black or female supporters. The bottom line will be that a first black or female president will be unlikely to take leadership in creating or even supporting policies that risk alienating the financially powerful men they have relied upon for gaining the presidency. By contrast, FDR’s New Deal and LBJ’s Great Society were created by individuals who were finally able and willing to alienate these power-brokers, confident in risking their support while seeking support from a larger popular constituency. A micro-political analysis points to the fact that FDR was born into an elite family and could assume a surplus of social recognition, from a variety of social sources, however his behavior deviated from the norm. Lyndon Baines Johnson was not born into an elite family, but after decades of leadership in the Senate, he too could confidently count on sufficient recognition from his congressional peers, as well as from popular sources as he promoted the Civil Rights Act of

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1964 and the Social Security Act of 1965. Indeed, LBJ chose not to run for an additional term when he perceived his levels of recognition/approval to have diminished too greatly in 1968. But his progressive social legacy was firmly in place. As evident in the year-long 2009–10 health care debate, the first black president did not ascend to this position of executive power with the sense of political agency that enabled FDR and LBJ to risk promoting the New Deal and the Great Society with its War on Poverty. There have been many contemporary references to FDR and the New Deal legislation he offered in response to the Great Depression of the 1930s, as part of the commentary since the financial crisis beginning in 2007. Because the 2008 decision to bail out the Wall Street banks is said to have avoided a second Great Depression, the presumed corollary has been that our Great Recession could be handled quite well without any of FDR’s New Deal programs for bailing out/creating jobs for the unemployed of Main Street. At the same time, there have been almost no references to LBJ’s Great Society programs, with his various War on Poverty initiatives, including the 1965 Social Security Act creating Medicare, despite the fact that the 1965 Social Security Act is an obvious historical reference point for any contemporary effort to create health care reform. The very relevance of the 1965 Social Security Act, and the Great Society and War on Poverty goals of LBJ and the Democratic Party in proposing this legislation, meant that the health care industry, with all its financial might, would discourage such references as part of the “democratic” debate in 2009–10.

NEW MACRO-POLITICAL DY NA M I C S O F T H E 2 0 0 9 – 1 0 H E A LT H C A R E D E B AT E A micro-political analysis of the dynamic agency relations on Main Street, or Middle America, confronted with an extended period of high unemployment, housing foreclosures, and economic uncertainty, could readily explain Middle America’s embrace of the efficiency and justice of Medicare as a potentially universalized form of public health insurance. A micro-political analysis can also provide insight into why President Obama did not use the presidency as a bully pulpit for ensuring that an extension of Medicare became part of the health care reform debate. However, presidential leadership should not have been necessary to ensure that this new democratic mandate for an extension of Medicare was

included as a significant policy alternative within the year-long “debate” over health care reform in America. In fact, a macro-political analysis of shifting power relationships between several categories of political agency within our American system provides a stronger basis for understanding this disturbing phenomenon. The perplexing, mystifying disappearance of Middle America’s support for Medicare extension in the 2009–10 health care debates can only be explained by a macro-political analysis of the diminution of Middle America’s political agency relative to the increasing political agency of Corporate America. The everyday facts supporting this analysis are plentiful and diverse, and many are taken for granted by all of us today. However, the significance of these diverse facts has been difficult to perceive due to historically embedded presumptions about political agency in the U.S. While corporate lobbying power and influence is readily acknowledged today, we are not accustomed to thinking of corporations as having political agency. Only individual citizens have political agency within our micro-political, electoral politics framework of democratic agency. However, I will suggest that there are good reasons for adopting a macro-political perspective and recognizing shifting power dynamics insofar as corporations have been legally empowered to wield traditional forms of micro-political agency. The tremendous lobbying power of health care corporations evident in the 2009–10 health care non-debate has been ratified, if not created, by Supreme Court attribution of legal personhood and First Amendment speech rights to corporations. The recent furor over the January 2010 Supreme Court decision, Citizens United v. Federal Election Commission, and the majority’s ruling that corporate “personhood” and rights to freedom of speech should not be distinguished from those of natural individuals for regulatory purposes, signaled a growing recognition of the significance of these issues. Perhaps it was not entirely coincidental that the intense public reaction to the Citizens United decision occurred just as the year-long non-debate over health care reform was winding down.15 Accordingly, it is appropriate to identify and respond to this challenge to our democratic polis due to heightened corporate political agency. This dramatic transformation in our political culture is, of course, not limited to the health care sector.,16 But it was particularly evident in the recent

Health Care Justice and Political Agency 2011 health care debate. And it will continue to be evident, if we are prepared to see it, in challenges to the March 2010 health care reform legislation, as well as in future struggles over implementing that legislation.17 My book, Micro-Politics, was actually inspired by a macro-political change, the heightened legal and political agency of women as a social group, what I called the “social enfranchisement of women,” in the 1960s and 1970s. Along with many others, I saw this heightened agency of women as a matter of justice, after centuries of wrongful subordination of women to men, and chose to emphasize the inclusion of women within the community of full legal and political agents as an enrichment of the economic, legal, and political community, rather than a challenge to established gendered power relationships, which of course it also was. Moreover, modern philosophers typically focus on individual actors, and true to that tradition, my concern was with the changes this social enfranchisement of women would create within micro-political relationships between individual women and men, within families within the public sphere of employment, and within political relations. However, classical political philosophers like Aristotle, as well as America’s Founding Fathers, were quite accustomed to considering macropolitical relationships, whether between citizens and noncitizens, or property holders and those without property. The dramatic partiality of the 2009–10 health care debate suggests that we need to again focus on macro-political actors and the shifting dynamics of agency relations between several large social groups. The exclusion of any serious consideration of an extension of Medicare as a means of solving U.S. medical coverage and cost-control problems in the 2009–10 health care debate was a demonstration of the macro-political power of health care corporations wielding their considerable micro-political speech/expenditure rights as fictive legal persons within the American democratic polis. Many accepted that the size and influence of the health care industry—of health-insurance companies, pharmaceutical companies, and forprofit health care providers—forced President Obama to proclaim any nationalized health program or any single-payer solution to our current health care problems to be “politically impossible.” However, it is one thing to conclude that a particular solution to a policy debate is not possible for various reasons; it is a very different thing

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to conclude that a particular sort of solution, one supported by a majority of the democratic polis and many health care experts, is not worthy of inclusion in the policy debate leading up to that conclusion. There has been little discussion of the exclusion of the majoritarian voice of Middle America supporting a Medicare extension from the year-long debate over health care reform.18 Yet Middle America’s voice, along with the voices of various health care experts recommending that only a Medicare extension or another single-payer solution could resolve America’s problems of declining coverage and rising health care costs were excluded from the debate, very overtly in some cases. One of the most memorable incidents in the year-long health care debate occurred in the spring of 2009, setting the tone and establishing the narrowed parameters for acceptable participants in the following year of policy discussion. After President Obama had announced his plans to push for legislation reforming our ailing health care system, the Senate Finance Committee, chaired by Senator Max Baucus, convened a hearing on the issue on May 5, 2009, with 15 experts invited to testify. Despite the many respected health care experts supporting an extension of Medicare or some variety of single-payer system, none were invited to this hearing or to any of the other roundtables convened by the President. In this case, eight medical doctors and other experts supporting Medicare extension decided to attend the hearing, with the simple goal of requesting an opportunity to testify before the committee about the issue. However, Senator Baucus deemed their presence an act of disruption and called the Capitol police, who readily responded by appearing in the Finance Committee room to handcuff, arrest, and remove these citizens and health care advocates from the Senate hearing.19 This incident demonstrated quite literally the lengths to which our political leaders would go to ensure that the voices of the democratic majority and supporting experts on behalf of a single-payer solution to our health care crisis would be excluded from the official debate. Traditional individualized micro-political categories of political agency emphasizing electoral politics make it difficult to properly analyze this incident, however. Even our categories of freedom of speech are inadequate. Within a traditional micro-political analysis, the “Baucus Eight” could be seen only as committed political activists

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engaging in a moment of civil disobedience. Insofar as they were not invited to speak at the Senate hearing, they had no right to be there, and their attempts to speak fell into no conceivable category of protected speech. They were not invited contributors, but rather uninvited disruptors of the Finance Committee’s deliberations, and were properly removed, receiving the momentary media attention they deserved for their disruptive efforts to speak. Nevertheless, this incident is more troubling when we consider the bigger political context in which it occurred. This was arguably the closest health care professionals supporting an extension of Medicare came to testifying at a Senate hearing during the year-long public “debate” over health care reform. Insofar as a majority of Americans repeatedly expressed their support for an extension of Medicare, this civilly disobedient attempt at participatory inclusion and speech before the Finance Committee graphically represents the degree to which the political agency of Middle America, of our democratic polis, was marginalized. The individual voices of Medicare experts and the majoritarian voice of Middle American supporters of Medicare expansion were sidelined by the political agency of health care corporations invested, as will be discussed below, with First Amendment rights to spend money as fictive legal persons on behalf of their “corporate views” within and without the halls of Congress. A second dramatic incident in the President’s year-long health care reform initiative occurred in the Fall of 2009 and illustrated in a very different manner the new macro-political parameters of our health care debate. On September 9, 2009, during a nationally televised speech by President Obama to a joint session of Congress, Joe Wilson, a Republican Congressman from the 2d District of South Carolina, shouted out, “You lie,” in response to a statement by President Obama that Democratic health care proposals would not cover “illegal” immigrants. It was the most talked-about moment of the President’s 47-minute speech, but most of the ensuing discussion of the incident focused on the fact that this hostile, inappropriate remark had been made. It was compared and contrasted with previous occasions when presidents had experienced heckling. Congressman Wilson apologized for his lack of civility within an hour, and the House formally rebuked the Congressman for his outburst a week later, on September 15, 2009.20

A more interesting question was ignored by the media: Why was Republican Congressman Wilson so incensed by President Obama’s statement of Democratic intentions not to cover illegal immigrants in a comprehensive health care plan? Presumably he and other Republicans fully agreed with such an exclusion of undocumented immigrants from health care coverage. Perhaps Congressman Wilson doubted that President Obama would follow through on this stated intention. Or perhaps Congressman Wilson was simply indignant to find a Democratic president appropriating what he had assumed was a Republican position, the denial of humanitarian welfare rights to a large group of individuals living and working, albeit without proper documentation, amongst us. Many liberal and progressive members of the Democratic Party were indignant about President Obama’s statement of exclusion for similar reasons. A traditional Democratic Party commitment to eradicate economic injustices and to provide for the poor and the weak in our society was responsible for FDR’s New Deal, as well as for the creation of Medicare and Medicaid under President Johnson in 1965 as part of his War on Poverty and Great Society programs. Undocumented immigrants are currently part of a global migration of families and individuals, driven by an inability to earn a minimal livelihood in their countries of origin, arriving in the U.S. with idealized visions of an earlier America welcoming the tired, the poor, and the industrious aspiring to make a new life for themselves. Desperate to earn money to support their families here and in their home countries, working very hard at whatever employment is available, these immigrants are productive, contributing members of American society, despite their lack of documentation. President Obama’s confident, upbeat assertion that a health care reform bill would exclude approximately 12 million such immigrants from coverage reflected a dramatic withdrawal of moral personhood and agency from a group of individuals whose economic contributions cannot be denied. Among those millions of citizens who have unexpectedly found themselves members of the long-term unemployed as a result of the recent Great Recession, President Obama’s words may have resonated, as well. Which groups of lessworthy Americans might next be excluded from coverage under the new health care legislation? Our huge deficit has created great pressures to reduce social spending immediately, and Medicaid

Health Care Justice and Political Agency 2011 is currently a primary target.21 With 29 million people projected to remain without health care coverage as of 2019, after the full implementation of the new health care reform package, further categories of exclusion are quite likely. When corporations can obtain legal personhood, invested with constitutional rights by means of a legal fiction as emphatically asserted by the Citizens United majority, presumably it becomes easier to withdraw the status of legal personhood from those who have simply assumed it as a natural attribute. The willingness by both major parties to designate categories of natural persons as undeserving of medical coverage within a new “universal” health care plan is another indication of harsh new macro-political dynamics at work.

C O R P O R AT E F R E E D O M O F SPEECH: A CONFUSING NEW HYBRID OF MICRO- AND MACRO-POLITICAL AGENCY American political philosophers such as John Rawls and Ronald Dworkin still assume a political geography of representative democracy with individual political actors expressing their political agency primarily through their capacity to cast their votes in public elections, although additionally capable of other expressions of political speech. Progressive political theorists focus on the ability of individuals to organize in workplaces and other public spaces to attempt to effect change “from below,” influencing legislators through strikes, demonstrations, and various grassroots means of expression. In a traditional democratic political analysis the ultimate political sovereignty rests with the People expressing themselves as individual voters in our democratic polis and electing legislators to represent their interests within a government, which is a government “of, by, and for the people.” Recognizing the tremendous influence of corporate lobbying in recent decades, political analysts have emphasized the indirect power of corporations upon our legislators. The critique of corporate lobbying power has been framed as criticism of the distortions of democratic power relations caused by undue influence of corporate money upon our political representatives through corporate lobbying power. We, the sovereign people, elect our political representatives to reflect and represent our needs and interests. Corporate power over these legislators has been seen as a distortion of our sovereignty, not as a challenge to

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it by an unfamiliar form of political agency, or a new form of political actor. This analysis has relied upon a seemingly obvious assumption that “we, the people” have political sovereignty based upon our unique legal and political personhood, while no matter how great the financial powers wielded by corporations, they do not have personhood, and hence could not directly undermine the political sovereignty of “we, the people.” Certainly, the Founding Fathers could not have imagined that our Constitution would be interpreted so as to enable corporations to acquire political agency allowing a challenge to the sovereignty of natural citizens. America was born of a revolution against not only the British Crown, but also against the chartered corporations used by the Crown to maintain control over our colonial economy. For the chartered corporations of Britain, the U.S. was a profitable source of raw materials, and the colonists were forbidden to produce their own woolen goods or iron goods, required to ship the raw materials to Britain for manufacture. With our successful revolution, we freed ourselves from the control of the chartered corporations and American entrepreneurs gained the right to control the entire chain of production.22 When they drew up our Constitution, the Framers were wary of the potentially despotic power of corporations, and our Constitution accorded political sovereignty to natural persons as citizens, and did not provide corporations with any status as political actors. In 18th- and 19thcentury America, state governments maintained the sovereign right to withdraw the charter of any corporation that failed to serve the public interest.23 However, as the economic power of domestic corporations developed in 19th-century America, corporations challenged state powers to regulate and tax them, when possible controlling state legislatures and rewriting the laws governing their creation, administration, and legal operations.24 After the Civil War, corporations began to argue for treatment as legal persons, with rights to equal treatment and due process under the new 14th Amendment of the Constitution. Eventually, in 1886, in Santa Clara County v. Southern Pacific Railroad, the Supreme Court held that “the provision in the Fourteenth Amendment to the Constitution which forbids a State to deny any person within its jurisdiction the equal protection of the law, applies to corporations.”25 It was only a matter of time before the Supreme Court extended

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this analysis, finding corporations entitled to an array of rights as legal persons under the equal protection and due process clauses of the 14th Amendment. The rights that were most readily attributed to corporations based on the fiction of their legal personhood were rights of property, rights not to be deprived of corporate property without due process, and rights not to have corporate property searched or seized under the Fourth Amendment.26 Various other constitutional rights, to personal liberty, as well as to various “purely personal” guarantees such as the privilege against selfincrimination, were deemed unavailable to corporations because the “historic function” of the particular guarantee had been limited to the protection of individuals.27 The First Amendment right to freedom of speech might seem to be a right of the latter sort, deemed unavailable to corporations because the historic function of this particular guarantee was limited to the protection of individual speech. Freedom of speech, like liberty of action, would in any literal sense be limited to natural persons. A corporation has property, but does not have, qua fictive legal person, the ability to “act” or “speak” in any way similar to a natural person.28 However, in 1936, the Supreme Court held that the American Press Company had the right under the 14th Amendment to challenge a state licensing tax, insofar as the tax could restrict circulation and thereby abridge freedom of speech, precisely the concern of the Founders in creating the First Amendment.29 Over the next 40 years several motion picture companies were allowed to assert their rights under the 14th Amendment to challenge state efforts to restrict distribution of their films.30 But it was only in 1978, a century after legal personhood of corporations had first been posited by the Supreme Court, that a more general right to corporate freedom of speech was asserted by the Supreme Court. In First National Bank of Boston v. Bellotti, Justice Powell’s majority opinion held that a Massachusetts bank had a First Amendment right, contrary to Massachusetts state law, to spend money to influence the vote on a referendum that did not “materially affect its business, property, or assets.”31 Justice Powell emphasized that the question was not whether corporations had First Amendment rights coextensive with natural persons, but whether the Massachusetts law “abridges expression that the First Amendment was meant to protect. We hold that it does.”32

Of course, corporations had not suddenly gained the ability of natural persons to speak, but the Bellotti Court confidently equated corporate ability to expend funds on behalf of various causes and candidates with an ability to inform and educate the public, speech that it found worthy of protection.33 This radical and far-reaching identification of corporate spending with freedom of expression was based upon a Supreme Court decision just 2 years before, Buckley v. Valeo, holding that expenditures were equivalent to speech.34 While corporations do not have the ability to speak, they have the ability to spend a great deal of money on a great many significant social policy questions. As the Bellotti Dissent of Justices White, Brennan, and Marshall warned, the Majority was not only invalidating a longstanding Massachusetts law but casting doubt on legislation in 31 states restricting corporate political activity, as well as the Federal Corrupt Practices Act, 2 USC S 441b(1976). The Dissent charged that the Majority failed to recognize state regulatory interests which themselves might derive from First Amendment grounds. As the Dissent emphasized, corporations are artificial entities created by law for the sole purpose of furthering economic goals. Primary First Amendment goals of communication as a means of self-expression, self-realization, and self-fulfillment, as well as freedom of choice, are not furthered by corporate speech. States have given corporations special privileges and attributes to increase their economic viability, and “this special status of corporations has placed them in a position to control vast amounts of economic power which may, if not regulated, dominate not only the economy but also the very heart of our democracy, the electoral process.”35 Over the next 30 years, the Supreme Court upheld various specific state and federal limitations on corporate campaign spending.36 Nevertheless, the Buckley and Bellotti rulings elevating corporate spending on campaigns and causes to protected free speech were seminal in articulating and ratifying an increasingly ubiquitous exercise of ever larger corporate lobbying coffers to promote their corporate interests in particular causes and candidates. Corporations of all sizes and sorts exercise their freedom of “speech” to legally support an array of causes, as well as political candidates and members of Congress who are systemically motivated to do their bidding. The election and re-election of legislators depends upon their financial resources. Corporations have a variety of legal ways of

Health Care Justice and Political Agency 2011 contributing money to legislators who will predictably respond to their corporate contributors by sponsoring legislation, refusing to support legislation, and voting generally in accord with the desires of corporations whose contributions they rely upon for election.37 Because of how the 2009–10 “debate” over health care reform played out, because of the mysterious disappearance of the majoritarian voice supporting Medicare expansion from that debate, it provides a compelling and powerful opportunity to demonstrate some countervailing First Amendment issues first suggested by the Bellotti Dissent. As Justice Powell had warned, the special status of corporations “has placed them in a position to control vast amounts of economic power which may, if not regulated, dominate not only the economy but also the very heart of our democracy, the electoral process.”38 Of course, contrary to the assumption of the Bellotti Dissent, and many later Supreme Court decisions concerned with protecting our democratic rights within the electoral process, it became very evident in the health care non-debate in 2009–10 that the well-being of our democracy is not just about elections, or about limiting the undue influence of corporations in the period immediately before an election. Given the huge amounts of corporate money legally expended by health care lobbyists, for example, on members of both major parties, elections matter much less today, insofar as we are not capable of electing representatives who will not be influenced very powerfully by health care and other lobbyists. The lobbying power of health care corporations that mattered most for the health care debate of 2009–10 was done on a daily basis after the election of 2008 and prior to the midterm elections of 2010. The lobbying power of health care corporations that effectively denied the American people the right to a robust debate about health care alternatives, including the expansion of Medicare and other single-payer alternatives supported by a democratic majority and many knowledgeable experts, was part of the fabric of everyday politics in 21stcentury America. The political agency wielded by corporations based upon their First Amendment freedom to expend huge amounts of money-as-speech in support of causes and candidates has made voting less relevant as a means of influencing government policy. In a development surely not forecast by the 1978 Bellotti and 1976 Buckley Supreme Court majorities, the micro-political agency of

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corporations invested with free-speech spending rights has enabled these fictive corporate persons, with their large financial resources, to exercise a new hybrid form of economic and political power and influence. Health care and other categories of corporations wield this new hybrid form of economic and political agency, undermining our basic model of political sovereignty as anchored in a democratic process of voting and a public sphere of political dialogue in which the individual voices of a democratic majority have counted on being recognized and accorded weight. The 2010 Supreme Court decision, Citizens United, represents a rhetorical high point in a long legal trajectory of cases attributing legal personhood to corporations, although the statutory provision it invalidated is almost beside the point.39 In Citizens United, Justice Kennedy, writing for a five-person majority, ruled very broadly that “the Government may not suppress political speech on the basis of the speaker’s corporate identity.”40 As Justice Kennedy candidly explained, “Corporate executives and employees counsel Members of Congress and Presidential Administrations on many issues, as a matter of routine and often in private . . . lobbying and corporate communications with elected officials occur on a regular basis.”41 Dismissing traditional criticisms of corporate lobbying, Justice Kennedy asserted, “The fact that [such corporate] speakers may have influence or access to elected officials does not mean that these officials are corrupt; favoritism and influence are not . . . avoidable in representative politics . . . Democracy is premised on responsiveness . . . The fact that a corporation, or any other speaker, is willing to spend money to try to persuade voters presupposes that the people have the ultimate influence over elected officials.”42 Indeed, Justice Kennedy was extremely critical of federal statutes like the one the court was overruling, which attempted to place limits on corporate campaign spending. He complained that “the censorship we now confront is vast . . . [and] by suppressing the speech of manifold corporations . . . the Government has muffled the voices that best represent the most significant segments of the economy.”43 In his impassioned critique of the majority opinion, dissenting Justice Stevens maintained that the Citizens United majority opinion signals a paradigm shift in the legal and political conception of corporations by the Supreme Court. “The fact that corporations are different from human beings might seem to need no elaboration, except

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that the majority opinion almost completely elides it,” he states.44 Declaring that the Citizens United Majority “rejects a century of history when it treats the distinction between corporate and individual campaign spending as an invidious novelty,” Justice Stevens discusses at some length the 18th-century attitudes of the Framers towards corporations, citing various legal historians explaining that “Corporations were created, supervised, and conceptualized as quasi-public entities, designed to serve a social function for the state.” Insofar as the Framers “conceptualized speech in individualistic terms . . . the very notion of ‘corporate speech’ was inconceivable.”45 Of course, Justice Stevens recognizes as well as those in the Citizens United majority the huge transformation of our culture in the two centuries since the Framers enacted the Constitution, and specifically the tremendous economic and political powers legally exercised by corporations in 21stcentury society. In that context, he is well aware of the rather limited powers of regulation that are even at issue in this case, stating, “Consider the statutory provision we are ostensibly evaluating in this case, BCRA § 203. It has no application to genuine issue advertising—a category of corporate speech Congress found to be far more substantial than election related advertising—or to Internet, telephone, or print advocacy.”46 As Justice Stevens discusses the Framers’ explicit desires to forestall all forms of private influence over legislators, and the Supreme Court’s longstanding concern with undue corporate influence and its support for various anticorruption regulations, we can begin to understand the symbolic significance of the whole trajectory of Supreme Court decisions regarding the speech rights of corporations.47 There is a very fine line between the legitimate authority ceded to corporations on behalf of the public good they may promote in our culture and the dangers of their despotic influence. The existence of such a very fine line is evident when Justice Stevens states, “Business corporations have been effectively delegated responsibility for ensuring society’s economic welfare; they inescapably structure the life of every citizen. The resources in the treasury of a business corporation, furthermore, are not an indication of popular support for the corporation’s political ideas . . . The availability of these resources may make a corporation a formidable political presence, even though the power of the corporation may be no reflection of the power of its ideas.”48

In fact, the narrowed parameters of the 2009– 10 health care debate, and specifically the disappearance of the voice of the democratic majority supporting an extension of Medicare, suggest that the new paradigm of the Citizens United majority that angers Justice Stevens is simply a ratification of the effective power and political agency that corporations exercise in our contemporary society, despite the refusal of previous Supreme Court decisions to symbolically cede that authority to them. According to the Citizens United majority, the corporate entity, the fictional, artificial corporate individual exercising its freedom of speech by wielding its money on behalf of whatever issues it “believes in,” should no longer be seen as distorting our democracy or as capable of exercising “undue influence” over it. Quite the opposite.This corporate person is now accorded the respect and recognition of a super economic and political agent. This corporate economic and political agent wields the political influence that its economic achievements and expertise befits it to wield, according to the Citizens United majority. As discussed above, corporate economic power and political agency, legitimate or not, was particularly evident in the severely limited health care “debate” of 2009–10. There was no obvious suppression of individual freedom of speech, but despite the majoritarian interest in a robust debate over an extension of Medicare, no such debate occurred. The disappearance of the voice of the democratic majority on behalf of Medicare extension, and the dominance of the “voices” of health care corporations committed to extending the current system of private insurance, would seem to contradict Justice Kennedy’s belief that corporate freedom of speech enriches the public realm of discourse. It may be wise to acknowledge that the Citizens United majority is ratifying a cultural shift that has evolved beyond, and to some degree outside any purely juridical context, however. The Supreme Court’s decisions equating the expenditure of corporate money with freedom of speech, and specifically allowing corporate expenditures as freedom of speech in many political contexts, may appear to have paved the way for current deficiencies in our mechanisms of democratic debate. Yet it is important to notice that when the Bellotti Court declared corporations persons with rights to freedom of speech, it was invalidating a Massachusetts law denying corporations the right to spend money to influence the vote on a referendum that did not “materially affect its business,

Health Care Justice and Political Agency 2011 property, or assets.”49 There was no comparable law limiting the rights of a corporation to spend money to influence the vote on issues that did “materially affect its business, property, or assets.” Corporations in Massachusetts and presumably elsewhere have long had wide-ranging freedom in their business-related lobbying expenditures. Health care corporations did not necessarily need Bellotti and its progeny explicitly investing them with First Amendment freedoms of speech insofar as they did not need to challenge state or federal laws limiting their business-related lobbying expenditures. When the Bellotti Court declared that corporations had the right to freedom of speech, it was implicitly acknowledging this vast array of daily lobbying activities already occurring. Optimistically read, Bellotti and its progeny provide us with a suggestive, if politically problematic new narrative structure involving competing notions of personhood and speech rights. Equipped with this new narrative of natural persons and corporate persons, each exercising different qualities of speech rights, we may begin to critically respond to the evolving macro-political dynamics and challenges to our democratic political agency that Justices Kennedy and Stevens both articulate in Citizens United. Because constitutional protections of individual freedom of speech were framed as rights of individual citizens and micro-political agents, they were not capable of protecting the rights of the democratic majority, as a macro-political entity, to have a significant voice in the 2009–10 public debate over health care policy. Insofar as corporations have acquired the legal status of micro-political agents free to speak with their macro-political corporatefunded voices in many political contexts, these First Amendment-guaranteed speech rights enabled health care corporations to have a dominant voice in the 2009–10 health care policy formulation.50 While the people as a whole are presumed to be sovereign, the Founding Fathers did not empower the People to act as macro-political agents or with any form of macro-political speech agency, such as that expressively wielded by corporate speech expenditures currently. In articulating the micro-political speech rights of corporations as legal persons, the Supreme Court has thus enabled us to identify a problematic hybrid entity, a new form of legal person whose artificially construed micro-political rights to freedom of speech have provided it with the

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economic and political clout of a macro-political agent. Our democratic sovereignty is challenged if not threatened thereby. Perhaps in initiating a health care debate that was so clearly not a proper debate on issues of such great concern to the democratic majority, President Obama offered the American people a democratic moment that could only be deferred.51

Notes 1. Aristotle, Poetics, 43–44 (M. Heath, transl. 1996); quoted by Justice Stevens, Dissenting Opinion, Citizens United v. Federal Election Commission, 130 S.Ct. 876, 946, footnote 47 (2010). 2. Justice Kennedy, Citizens United v. Federal Election Commission, 130 S.Ct. 876, 912–913 (2010). 3. John Rawls, The Law of Peoples (Cambridge, MA: Harvard University Press, 1999); Amartya Sen, Development as Freedom (New York: Anchor Books, 2000); Ronald Dworkin, Sovereign Virtue: The Theory and Practice of Equality (Cambridge: Harvard University Press, 2000). 4. Rodney Peffer, Marxism, Morality, and Social Justice (Princeton: Princeton University Press, 1990), p.14. 5. Ronald Dworkin, Sovereign Virtue: The Theory and Practice of Equality (Cambridge: Harvard University Press, 2000), pp. 186–190, 232. 6. Patricia S. Mann, Micro-Politics: Agency in a Postfeminist Era (Minneapolis, MN: University of Minnesota Press, 1994). 7. Joyce Appleby, Inheriting the Revolution: The First Generation of Americans (Cambridge: Harvard University Press, 2000), quoted in Gordon S. Wood, “Early American Get-Up-And-Go,” New York Review of Books, June 29, 2000. Appleby documents the highly self-conscious formation of this national consciousness, emphasizing the risks and failures as well as the rewards of this new entrepreneurial mode of life. “In embracing the virtues of personal autonomy and individual responsibility, they rallied around qualities with wide appeal across the spectrum of classes, faiths, families, and even races. The range of human potentialities engaged by this model of excellence was narrow, but widely shared” (259). 8. Patricia S. Mann, “Meanings of Death,” in Physician Assisted Suicide: Expanding the Debate, eds. Margaret P. Battin, Rosamond Rhodes, and Anita Silvers (New York: Routledge, 1998) for my analysis of how the debate over assisted suicide would be transformed by an explicitly social framework of analysis, and specifically by a three-dimensional theory of agency. 9. An AP/Yahoo poll conducted Dec. 14–20, 2007, found that 65% supported a universal health-insurance

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program in which everyone was covered under a program like Medicare, run by the government and financed by taxpayers. Most polls since have not asked the question. However, it was constantly noted by commentators during the year-long debate that among elderly citizens, across the political spectrum, a commitment to Medicare was ubiquitous, even at “Tea Party” events, where citizens passionately defended their right to Medicare, despite sometime confusion as to how it functioned, carrying signs proclaiming, “Keep Government Hands Off My Medicare.” Even more interesting was a Harvard School of Public Health/Harris Interactive poll of Feb. 14, 2008, in which 45% of those polled answered that they believed that “the health-care system would be better” “if we had socialized medicine in this country.” 10. See Paul Krugman, “A Healthy New Year,” New York Times, Jan. 1, 2007, for a very brief explanation of why a government-run single-payer, public insurance program like Medicare, and like those in other advanced industrial countries, is necessary to cure the huge inefficiencies of our own fragmented system of primarily private insurance. For a more extended analysis of this issue, see “The Health-care Crisis and What To Do About It,” by Paul Krugman and Robin Wells, New York Review of Books, March 23, 2006, explaining that the cost advantage of public health insurance primarily rests on two main sources: lower administrative costs in public insurance systems, and the ability to bargain with suppliers, especially drug companies. See also Marcia Angell, “Patients’ Rights Bills and Other Futile Gestures,” New England Journal of Medicine vol. 342, no. 22 (June 1, 2000). As the outgoing editor, Angell critically reviews proposals for reforming the current system and dismisses them. She explains the structural problems with a system in which employers and investor-owned managed-care companies presume to represent the interests of workers and doctors. She repeats a call she made in a 1993 for a universal single-payer system, basically an extension of Medicare to everyone, emphasizing its greater efficiency and equity. Marcia Angell’s The Truth About the Drug Companies (New York: Random House, 2005) exhaustively explores the role of pharmaceutical companies in contributing to rising health-care costs, and the potential savings from a public insurance system in which the government would have the ability to bargain more effectively with suppliers. See also Physicians for a National Health Program website: David Himmelstein & Steffie Woolhandler, “Why the U.S. Needs a Single Payer Health System.” 11. PNHP.org List of H.R. Co-Sponsors as of Sept. 1, 2010. 12. James Rainey, “Media needs to deepen coverage of healthcare reform,” Los Angeles Times, July 29, 2009; Gregg Blesch, Left out of the discussion: Single-payer

advocates still trying to be heard, Modern Healthcare, June 8, 2009; Alicia C. Shepard, “Is NPR Ignoring the Single-Payer Health-care Proposal?” Posted July 21, 2009; “NYT Slams Single-Payer: Fails to include advocates among ‘diverse’ experts,” Fairness & Accuracy in Reporting, 9/22/09, Action Alert. John Nichols, The Missing Voices at the Healthcare Summit, The Nation Blogs: The Beat, 2/25/2010 13. Paul Krugman, “The Swiss Menace,” New York Times, August 16, 2009; Paul Krugman, “Simulating Single-Payer, New York Times blog, December 23, 2009. 14. An excellent chart identifying and explaining the results of numerous polls, from November 2010 back through 2003, is posted by the Western PA Coalition for Single-Payer Healthcare. It makes clear the continuing support for a national single payer plan like Medicare. See http://www.wpasinglepayer.org/ PollResults.html 15. Citizens United v. Federal Election Commission, supra. See, for example, “Resolution Calling to Amend the Constitution Banning Corporate Personhood Introduced in Vermont,” Christopher Ketcham, http:// www.alternet.org/story/149620/ 16. Issues of gun control and military spending spring most readily to mind, as areas of popular concern where commentators regularly contrast popular support for major changes with the impossibility of legislating such changes, due to the NRA and the military–industrial complex. But the President has not initiated an extended period of supposed democratic debate on either of these topics, as he did regarding health care. 17. Vermont’s Sen. Bernie Sanders introduced legislation on Jan. 25, 2011, to enable individual states to use the new national health-care law to enact a singlepayer system. Sen. Patrick Leahy is a co-sponsor of the Senate bill, and Rep. Peter Welch introduced companion legislation in the House. Meanwhile, Vermont Gov. Peter Shumlin presented a health-care proposal to Vermont lawmakers to move the state toward a singlepayer health-care system. See http://sanders.senate.gov. 18. Ralph Nader, “Now Make Me Do It,” CommonDreams.org. August 15, 2009; Julie Hollar and Isabel MacDonald, “Media Quarantine of SinglePayer Continues,” June 2009, FAIR.org. 19. John Nichols, “Baucus Healthcare Plan: Arrest Doctors, Nurses,” The Nation, May 13, 2009; Donna Smith, “Doctors, Single-Payer Activists Arrested, Make History at Senate Finance Round-Table,” May 5, 2009, Health Care Now. Video footage: Sen. Max Baucus (D-MT) reacts to protesters, http://www.youtube.com/ watch?v=XKP05AyfRsI; Russell Mokhiber, Single Payer Action, speaks at hearing, http://www.youtube.com/ watch?v=G5vhTtxad30; Margaret Flowers, MD, & Katie Robbins, Healthcare-NOW, http://www.youtube.com/

Health Care Justice and Political Agency 2011 watch?v=1zOShsL4UJo; Carol Paris, MD, PNHP, http:// www.youtube.com/watch?v=RdIUcrVxGwA; Mark Dudzic, Labor Campaign for Single-Payer Healthcare, http://www.youtube.com/watch?v=r1nl32aAh7M ; Adam Schneider, http://www.youtube.com/watch?v= I26EkvnjZuQ; Pat Salomon, MD, & Kevin Zeese, http:// www.youtube.com/watch?v=iDHJH7W-ZEo. For a recent report on this incident as part of an ongoing narrative of corporate influence, see Rose Aguilar, “Corporate Media Push Wrong Story on Obama’s Relationship With Business,” Truthout, Feb 7, 2011; http://www.truth-out.org/corporate-media-pushwrong-story-obamas-relationship-with-business67543 20. Carl Hulse, “The Republican Response To Obama’s Address,” New York Times, Sept. 9, 2009. 21. See Robert Pear, “Governors Get Advice for Saving on Medicaid,” New York Times, Feb. 4, 2011, and Kevin Sack, “For Governors of Both Parties, Medicaid Looks Ripe to Slash,” New York Times, Jan. 29, 2011. 22. David Korten, When Corporations Rule the World (Bloomfield, CT: Kumarian Press, Inc., & San Francisco: Berrett-Koehler Publishers, 2001), pp. 62–63. 23. Early in our history, Mr. Chief Justice Marshall described the status of a corporation in the eyes of federal law: “A corporation is an artificial being, invisible, intangible, and existing only in contemplation of law. Being the mere creature of law, it possesses only those properties which the charter of creation confers upon it, either expressly, or as incidental to its very existence. These are such as are supposed best calculated to effect the object for which it was created.” Dartmouth College v. Woodward, 4 Wheat. 518, 636 (1819); quoted by Mr. Chief Justice Rehnquist, Dissenting in First National Bank of Boston v. Bellotti, 435 U.S.765, 823 (1978). 24. David Korten, supra, p. 65. 25. Santa Clara County v. Southern Pacific Railroad, 118 U.S. 394 (1986): In this case, as in many court challenges during this period, the issue was a disputed tax. The Southern Pacific Railroad Company wanted to challenge a particular application of a California state tax, and the court declared that it had the right under the 14th Amendment equal-protection clause to challenge it, finding in this case for the corporation. See also Covington & Lexington Turnpike R.Co. v. Sandford, 164 U.S. 578 (1896). 26. It soon became accepted that the property of a corporation was protected under the Due Process Clause of the 14th Amendment. See, e.g., Smyth v. Ames, 169 U.S. 466,522 (1898). And Fourth Amendment rights were readily attributed to corporations: Hale v. Henkel, 201 U.S. 43, 75–76 (1906); Silverthorne Lumber Co. v. United States, 251 U.S. 385 (1920); Go-Bart Co. v. United States, 282 U.S. 344 (1931); Oklahoma Press Pub. Co. v. Walling, 327 U.S. 186, 205–206 (1946); G.M. Leasing Corp v. United States, 429 U.S.338,353 (1977)

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Fifth Amendment double-jeopardy rights were also readily attributed to corporations: United States v. Martin Linen Supply Col, 430 U.S. 564(1977) (After a deadlocked jury was discharged when unable to agree upon a verdict at the criminal contempt trial of respondent corporations, the District Judge properly granted respondents’ timely motions for judgments of acquittal under Fed. Rule Crim. Proc. 29(c)). 27. Various other fundamental rights were found to be limited to natural persons: Northwestern Nat. Life Ins. Co v. Riggs, 203 U.S. 243,255(1906) (State could regulate activities of insurance companies because the liberty protected by the 14th Amendment was “the liberty of natural, not artificial persons.”). Wilson v. United States, 221 U.S. 361,382–86(1911) (Corporation is a “creature of the state,” “presumed to be incorporated for the public benefit . . . has no right to refuse to submit its books and papers for an examination at the suit of the State.” By contrast, “The individual may stand upon his constitutional rights as a citizen. He is entitled to carry on his private business in his own way. His power to contract is unlimited. He owes no duty to the State or to his neighbors to divulge his business, or to open his doors to an investigation, so far as it may tend to criminate him.” United States v. White, 322 U.S. 694,698– 701(1944) (Certain “purely personal” guarantees, such as the privilege against compulsory self-incrimination, are unavailable to corporations and other organizations because the “historic function” of the particular guarantee has been limited to the protection of individuals.) Whether or not a particular guarantee is “purely personal” or is unavailable to corporations for some other reason depends on the nature, history, and purpose of the particular constitutional provision. See Bellotti, Footnote 14 of majority decision “A corporation, we have held, is not a “citizen” within the meaning of the privileges and immunities clause.” Paul v. Virginia, 8 Wall. 168. See Grosjean v. American Press Co., 1936. 28. See Citizens United, supra, at 950, footnote 55. Stevens dissent. Justice Stevens first cites Bezanson, “Institutional Speech,” 80 IA L.Rev.735,775 (1995), “In the intellectual heritage of the eighteenth century, the idea that free speech was individual and personal was deeply rooted and clearly manifest in the writings of Locke, Milton, and others on whom the framers of the Constitution and the Bill of Rights drew.” Justice Stevens then continues, “Given that corporations were conceived of as artificial entities and do not have the technical capacity to ‘speak,’ the burden of establishing that the Framers and ratifiers understood `the freedom of speech’ to encompass corporate speech is, I believe, far heavier than the majority acknowledges.” 29. Grosjean v. American Press Company, 297 U.S. 233,244(1936).

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30. Joseph Burstyn, Inc. v. Wilson, 343 U.S.495 (1952) (Under the First and Fourteenth Amendments, a state may not place a prior restraint on the showing of a motion picture film on the basis of a censor’s conclusion that it is “sacrilegious.”); Kinsgsley Int’l Pictures Corp v. Regents of Univ of NY, 360 U.S.684 (1959). 31. First National Bank of Boston v. Bellotti, 435 U.S. 765 (1978). 32. Ibid., 776. 33. “If the speakers here were not corporations, no one would suggest that the State could silence their proposed speech. It is the type of speech indispensable to decisionmaking in a democracy, and this is no less true because the speech comes from a corporation rather than an individual. The inherent worth of the speech in terms of its capacity for informing the public does not depend upon the identity of its source, whether corporation, association, union, or individual.” Ibid., 777. 34. Buckley v. Valeo, 424 U.S. 1, 16 (1976). Specifically, the Buckley court denied claims that “the dependence of a communication on the expenditure of money itself operates to introduce a non-speech element or to reduce the exacting scrutiny required by the First Amendment.” 35. First National Bank of Boston v. Bellotti, Justice White’s dissenting opinion, 435 U.S. at 803–5, 809. In a separate Bellotti dissent, Justice Rehnquist concluded that “the free flow of information is in no way diminished by the Commonwealth’s decision to permit the operation of business corporations with limited rights of political expression. All natural persons . . . remain as free as before to engage in political activity.” Ibid., at 828. 36. See Austin v. Michigan State Chamber of Commerce, 494 U.S. 652,662–3 (1990) 37. Corporate lobbying power is evident in numerous policy contexts beyond that of health care. As becomes evident when incidents like the shooting of Congresswoman Giffords occurred in Arizona, calls for greater regulation of gun ownership are immediately dismissed as futile. The lobbying power of the NRA and the gun industry are capable of overriding even a huge swell of popular demand for heightened levels of federal or state gun control. 38. First National Bank of Boston v. Bellotti, Justice White’s dissenting opinion, 435 U.S. at 803–5, 809. 39. Citizens United v. Federal Election Commission, 130 S. Ct. 876 (2010). In Citizens United, Justice Kennedy, writing for a five-person majority, ruled that a provision of a 2002 law, the Bipartisan Campaign Reform Act of 2002 (BCRA), 2 U.S.C.S. § 441b,

prohibiting corporations and labor unions from campaign advertisements in the 30 days immediately prior to a primary election or 60 days before a general election, was unconstitutional. 40. Citizens United v. Federal Election Commission, 130 S.Ct, at 913. 41. Ibid., at 907. 42. Ibid., at 910. 43. Ibid., at 907. 44. Citizens United, dissent by Justice Stevens, at 971. 45. Citizens United, dissent, at 930, 949, citing Handlin & Handlin, “Origin of the American Business Corporation,” 5 J. Econ. Hist. 1,22 (1945). See also Citizens United, at 951. 46. Citizens United, dissent, at 943. See McConnell v. FEC, 540 U.S. 93, 207 (2003). 47. Citizens United, dissent, at 948–61. 48. Citizens United, dissent, at 971. See Austin v. Michigan Chamber of Commerce, 494 U.S. 652, 658–9 (1990). 49. First National Bank of Boston v. Bellotti, 435 U.S. 765 (1978). 50. See Rose Aguilar, “Corporate Media Push Wrong Story on Obama’s Relationship With Business,” Truthout, Feb 7, 2011; http://www.truth-out.org/ corporate-media-push-wrong-story-obamas-relationship-with-business67543 51. Vermont’s Sen. Bernie Sanders introduced legislation on Jan. 25, 2011 to enable individual states to use the new national health-care law to enact a single-payer system. Sen. Patrick Leahy is a co-sponsor of the Senate bill, and Rep. Peter Welch introduced companion legislation in the House. Under the national bill, states would be able to seek waivers from the U.S. Health and Human Services Department 3 years sooner than allowed under the new federal health-care law. States could qualify for waivers only for plans that are at least as comprehensive and affordable as the federal model and cover at least as many people. States could not offer lower-quality or less-affordable coverage. Meanwhile, Vermont Gov. Peter Shumlin presented a health-care proposal to Vermont lawmakers to move the state toward a single-payer health-care system. “I applaud the governor for presenting his healthcare proposal to the Legislature and I look forward to working with him. With 50 million Americans uninsured and the cost of health care soaring, Vermont can be a model for the nation as we move toward a Medicare-for-all, single-payer health-care system,” Sanders said. See http://sanders.senate.gov.

17 Allocating Health Care Resources in the UK Putting Principles into Practice MARK SHEEHAN AND TONY HOPE

T H E I M P O R TA N C E A N D T H E U N AVO I D A B I L I T Y O F R AT I O N I N G The British National Health Service (NHS) is one of the world’s four largest direct employers: half the size of the Chinese People’s Army but on a par with Wal-Mart and the Indian National Railways.1 It has around 1.7 million employees. Just under half of the NHS workforce are clinicians, including about 400,000 nurses, 120,000 hospital doctors, 40,000 primary care doctors, and 25,000 ambulance personnel. Three quarters of the British population visit their primary care doctor at least once each year. Five million consultations between patients and doctors take place within the NHS each week. The NHS, in short, is the largest provider of health care in the world. The NHS has an annual budget of £100 billion: about £2,000 per person. Around 20% of the budget is spent on medicines and supplies. The funding comes from general taxation. The purpose of the NHS is to provide health care, free at the point of delivery, to the entire UK population. The NHS therefore has a rather pure problem of resource allocation: how should the funds collected through taxation be best distributed? Until 20 years ago this question was difficult to ask because no government would admit that the resources were insufficient to provide the very best health care for everyone. A few brave people used the “R-word”—rationing—but not in political circles. This changed around the mid-1990s. The government’s desire to keep public spending under control highlighted the fact that there were expensive new treatments with some benefits and that not all could be afforded all of the time. Rationing, or to use its softer soubriquet resource allocation, had to be tackled explicitly within the NHS.

Rationing has to be faced by all health systems whether private, public, or mixed. Medical advances mean that no health system can afford the very best management for all patients all of the time. A purely libertarian system based on patients bearing the entire cost of private treatment might avoid explicit discussion of rationing but only at the expense of excluding large parts of the population from the ability to afford much of the care. Rationing in such a system is on the basis of socioeconomic status. An insurance system has to ration because no contract can foresee the medical advances. Insurers, like the NHS, are faced with a budget that cannot provide the very best care for all their clients all of the time. In the US there has been interest in the process of rationing decisions precisely because it is recognized that rationing has to take place (Daniels & Sabin 1997, Daniels 2000, Daniels & Sabin 2002). The NHS experience should be of interest to anyone concerned with how rationing should be tackled in practice. Whatever its weaknesses, the NHS is an enormous health care provider that has grasped the nettle of rationing and has made serious attempts to develop proper processes and principles within the practical and political constraints that health care providers have to face. How health care resources are distributed makes an enormous difference to people’s health and affects who will live and who will die. It is therefore one of the most important issues in bioethics. In this chapter we examine the way in which resource-allocation decisions are made in the NHS. We sketch the processes, principles, and decisions that are made. First, we articulate a range of principles and assumptions that are generally in play in the context of UK resourceallocation decision-making. To some extent these are aspirational—not all decisions are grounded

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in these principles alone, and in some cases they are not explicitly adopted. Then we examine the decision-making processes at both national and local levels. The focus at the national level is on the operation of the National Institute for Health and Clinical Excellence (NICE). The focus at the local level is primarily on the working of local or regional Priorities Forums and Individual Funding Request (IFR) panels.

ETHICAL PRINCIPLES In this section we articulate the main ethical principles that inform the processes of decision-making in the NHS. These principles, we believe, need to be considered in any context of health care resources allocation. In part, they define the ethical and distributive justice problems. We use the term principle very broadly to capture a range of considerations that are normatively involved in the decisions in question. We understand “principle” not to mean a prescriptive precept or rule but a prima facie consideration that partly proscribes the spectrum of relevant ethical issues. The section is divided into three parts, each of which deals with a specific set of issues and their constitutive principles. Background Conditions Background conditions are constraints on any system of fair distribution of resources with a given budget. They are conditions that either contribute to defining the problem or are features of the situation that any account must acknowledge. At root, a problem in distributive justice arises when the size of the “cake” of resources is less than the potential demand. If we can add pieces to the cake whenever needed, the distribution problem goes away (Broome 1988, 1990). In practice there are a number of levels at which the cake analogy might operate within a health care system. It might be that the cake represents the health care budget, or it might represent a higher-level resource decision, say between government departments such as education, roads, transport, and military. In cases where the given budget is dependent on levels of taxation, the distribution problem might be mediated by questions about taxation levels—so the tradeoff might be between reasons for keeping taxes lower and the value in increasing the size of a given budget. These variations in how we understand the nature of the cake shift the scope and context of the problem without solving it. For our purposes the fixed budget in question is the health care budget given to the

NHS. The problem of distributive justice is how to allocate these resources justly. The first background condition is cost: the cost of an individual treatment matters. If cost is ignored this is tantamount to adopting a strategy for distribution that privileges temporal order— that is, resources are distributed on a first-come, first-served basis. Those demands on resources that arise earlier in the financial year are funded at the expense of those that arise later. This is an unjust strategy because there is nothing morally distinctive about being diagnosed (for example) earlier in the financial year rather than later. In a libertarian system cost affects distribution because it affects the ability of individuals to pay. The second background condition is the idea of opportunity costs. At its most general the idea is that if money is spent on this, it is not available to be spent on something else. The opportunity costs are those opportunities for spending that are lost as a result of using the money for this. Opportunity costs are particularly salient in the setting of a fixed budget. Perhaps the most straightforward way to understand the ethical force of opportunity costs is as a requirement that resource-allocation decisions be made in the context of a budget where the relative value of various courses of action can be effectively compared. Any justification for funding treatment A must take into account the fact that funding A will mean not funding B, C, or D, just as the justification for funding B must take into account what will not be funded as a result. The third background condition is effectiveness. A system of health care resource allocation should take into consideration the extent, probability, and duration of the effect of any of the treatments. This is because the central aim of a health system is to affect the health of those it cares for. One implication of this is that resources should not be used to fund treatments that do not work.

Equality of Outcome How do we distribute the available health care resources justly? Aristotle’s thought that we should treat equals equally and unequals unequally is often taken to give us a formal answer to this question and to provide an important link between the idea of a just distribution and equality. That is, it suggests that distributing resources justly requires deciding the respects in which people are equal and unequal. So, for example, insofar as X and Y are citizens of a country they ought to be treated equally with regard to citizenship issues.

Allocating Health Care Resources in the UK However, insofar as X and Y are different with respect to health (X being healthy and Y not), they should be treated differently with respect to health. What is missing from Aristotle’s dictum is any account of the various relevant respects in which we are equal and unequal. For our purposes there are two general approaches: equality of outcome and equality of persons. An approach that focuses on equality of outcome places value in the outcomes. Equal treatment is determined with reference to those outcomes. Two treatments that have the same outcome ought to be resourced to the same extent. If treatment A has a better outcome than treatment B, then (other things being equal) A should be prioritized over B. The central way in which equality of outcome is usually fleshed out is in terms of cost-effectiveness. That is, the overriding principle of justice is one that maximizes the outcome per resource unit—“value for money.” This counts as a principle of justice because it takes it that it is fair for everyone if the resources available are used to bring the most overall benefit to the relevant population. Moreover, by focusing on overall value for money, a cost-effectiveness strategy is well placed to be impartial between people and between types of condition. There are various ways of measuring costeffectiveness in the context of health care. The measure that has received the most attention and use in the UK is cost per quality-adjusted life-year (QALY). The essence of a QALY is that it takes a year of healthy life expectancy to be worth 1, but regards a year of unhealthy life expectancy as worth less than 1. Its precise value is lower the worse the quality of life of the unhealthy person (which is what the quality-adjusted bit is all about) (Williams 1988). The general idea behind the QALY approach is that a beneficial health care activity is one that generates a positive number of QALYs, and that an efficient health care activity is one where the cost per QALY is as low as it can be. A high-priority health care activity is one where the cost per QALY is low, and a low-priority activity is one where the cost per QALY is high.

Equality of Persons An alternative approach to justice focuses on the equality of persons rather than the equality of outcome. Attempts to articulate this approach often involve reference to some kind of moral rights. Part of the idea involved in attributing rights to people is that it is with respect to those rights that we are considered equal. On this view, it is the

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person, or a morally significant property of the person, who should be treated equally with others. Each individual person is to be treated as being distinct and of value. The value here lies intrinsically with the person rather than extrinsically with the person as a bearer of “good outcomes.” In the context of resource allocation in the UK the claim that the equality of persons is an important aspect of justice is often referred to as a claim about the importance of equity. The three principles below represent different ways in which a conception of justice based on equality of persons might be developed.

Fair Process One important way of treating persons equally is by giving them a chance to a fair hearing or a decision procedure that enables the full and equal consideration of the range of reasons that each stakeholder might see as relevant. This approach takes distributive justice to rest on the idea, familiar in legal contexts, of a fair process. To a large extent the resource-allocation decision-making system in the NHS is shaped around the idea of a fair process, with striking resonances with Daniels and Sabin’s “accountability for reasonableness” model (Daniels & Sabin 1997). In this respect the system strives to be accountable not just in the decisions that it makes but, crucially, in the reasons for making those decisions. One important element of this idea is that although it is based on an account of justice that privileges equality of persons, it does give significant hearing to the kinds of cost-effectiveness measures that make up the equality-of-outcome approach. In this way considerations of cost-effectiveness are able to be important determinants in decisions alongside other ethical considerations. Indeed, arguably when economic constraints are more severe the system is able to adjust by allowing, in an appropriate way, for cost-effectiveness to be a more pressing concern. As a “principle” the idea of a fair process functions in a different way from the others. The operation of this principle governs the way in which decisions are made rather than guiding the content of those decisions. In practice it means that part of the attention of the decision-makers should be directed to the functioning of the process of decision-making in addition to the decisions themselves. On its own, fair process is insufficient because it tells us little about what reasons are relevant, and gives no decision-making guidance to those involved in the process.

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Need Ethical discussions of resource allocation often highlight the importance of need. The idea is that those who are in a worse state should be given higher priority for an intervention: people should get what they need and resources should be distributed so that needs are met. This principle falls under the heading of equality of persons primarily because the respect in which people are judged to be equal is based on a morally relevant feature of the person (the extent to which she is in need) rather than on the outcome of particular interventions. The three major problems associated with taking needs as the only principle of allocation are: (1) how to define and rank needs, (2) what do we do when needs outrun resources, and (3) a very large proportion of the resources is likely to be spent on marginally effective interventions for the most needy. With regard to the first issue a patient with end-stage renal failure, for example, needs dialysis, whereas patients with a fully healed but extensive burns scar many not need cosmetic surgery, or at least not to the same extent (Scanlon 1975, Lockwood 1988). This is not to deny that there may be benefits associated with the latter— not all things that are of benefit are needed. The main problem here involves the specification of the goal that the fulfilled need makes possible. That is, needs are for something—we need F in order to G. The problem is how to characterize G in such a way as to be able to rank needs, and distinguish needs from “mere” desires. One suggestion is that the lack of what we need compromises our capacity to flourish as a human being (Wiggins 1998). This may well be the right account, but until we have an account of what it is to flourish as a human being and what it means for that capacity to be compromised, we are not much closer to a practical solution. The second difficulty involves the concern that the resources required to satisfy all needs will outrun the resources available. Arguably the resource-allocation problem in the NHS is precisely to decide between needs rather than between needs and mere desires—by and large, coronary artery bypass grafting is a more pressing need than knee reconstruction surgery. Accordingly, we might allocate more resources to the former than to the latter. The problem is that by the time all of the most pressing needs have been fully dealt with, those with “lesser” needs are likely to miss out. If we have a satisfactory way of ranking needs it may look as though we have gone a good way

towards satisfying the ethical claim of needs. Thus it may be right not to fund knee surgery if we do not have sufficient resources to save all lives. But there are further difficulties associated with the third major problem. For example, how would we rank a very expensive intervention with a low, but non-zero, probability of extending life by a short period, against a knee operation? It would seem that cost and effectiveness must also be taken into account alongside need. A metric that does just that has been proposed (Hope et al. 2009).

Rescue Although it might be seen as a particular example of giving priority to need, the rule of rescue merits separate discussion as it has taken on a life of its own in discussions of resource allocation. Broadly speaking, the rule of rescue involves spending large amounts of resources “rescuing” identifiable individuals who are in imminent danger (Jonsen 1986). This “rule” was invoked in Ontario to overturn a decision not to fund treatment for Gaucher’s disease, and it has also been used to justify resource decisions in Israel concerning the same condition (Gross 2002). It seems reasonable to understand the rule of rescue as a general empirical tendency—that is, as an empirical fact of human psychology perhaps more aptly named the “Identifiable Victim Effect” (Jenni & Loewenstein 1997). It does seem true that we are prepared to spend significant resources rescuing seriously endangered identifiable individuals. But if the rule of rescue is taken to be an empirical fact, there remains a serious question about how it should feature in decisions about the distribution of resources. Is it morally right, or is it a psychological tendency that should be resisted on moral grounds? It might be suggested that people’s willingness to go to great lengths to save a few is indicative of an agent-relative obligation. Agent-relative obligations are obligations that we have because of a particular relationship or set of circumstances. They are to be contrasted with agent-neutral obligations—obligations that apply to all, independent of a particular circumstance or relationship. On this suggestion, we have agent-relative obligations to someone with whom we have a relationship, or to someone who is identifiable, or to someone in serious need of help who is nearby. Do those involved in health care policy and resource allocation have such agent-relative obligations to individual patients? The answer depends on how we see their role. We might suggest that

Allocating Health Care Resources in the UK health care is not simply a business. On one view those making policy decisions in health care can be taken to have obligations both to the population as a whole and to particular patients—they have agent-neutral and agent-relative obligations. This is not to say that one always trumps the other; nor is it to say that the decision between them is always straightforward. But it is to claim that an account of policymaking in health care that omits agent-relative obligations is an impoverished one (Sheehan 2007). One practical approach to the problem of whether the rule of rescue should be used in prioritization is to specify policy (i.e., in agent-neutral terms) but to have an additional process for examining individual cases that are considered exceptional (see below). The process for examining individual cases asks the question: how do we handle those whom we think should be “rescued” by a health care system but who are overlooked by the earlier decisions?

T H E S T RU C T U R E O F N H S R E S O U R C E - A L L O C AT I O N DECISIONS Having given a brief overview of the principles of resource allocation we now consider its practice as exemplified by the NHS. As the US attempts to provide more universal health care coverage of the population it will need to grapple with many of the same issues. To understand allocation decisions, some knowledge of the structure of the NHS is required. Very broadly, commissioning decisions (resource-allocation decisions about what to fund) are made at three levels across the NHS: national, regional, and local. In spite of this the central focus of the decision-making comes at the local level, with the higher-level processes representing an attempt to cover issues that are difficult for the lower levels or that are particularly politically sensitive. The system is thus driven from the bottom level up. Primary Care Trusts (PCTs) are the main local budgetary units at the time of writing, although there are plans to make primary care practices the main local unit. There are 151 PCTs (and over 8,000 primary care practices) in England. PCTs are grouped together into 10 regions as Strategic Health Authorities (SHAs). So, for example, Oxfordshire PCT is a part of South Central SHA. In terms of commissioning the SHA organizes and commissions treatments, as “specialised services,” that are more efficiently provided at the regional level. Although a small

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amount of commissioning is carried out at the national level, the principal body at this level that affects resource allocation is the National Institute for Health and Clinical Excellence (NICE). In the next section we will explain how NICE works and give examples of the issues it has considered and the ways it has tackled them. In the section after that we will focus on regional and local levels.

PRINCIPLES IN PRACTICE: NICE The Nature of NICE NICE was created in 1999 in part to solve a political embarrassment. Since NHS budgets are devolved to local areas, and since there are drug treatments that provide only slight extra benefit for great extra cost, it was not surprising that in one area a patient might receive, for example, an expensive cancer drug free under the NHS whereas in another area the decision had been made not to fund that particular drug and to use the money saved for other types of health care. The result was that a patient in one part of the country might be denied a treatment, under the NHS, that another patient in an identical clinical state, but who lives in a different part of the country, obtains free of charge. In a national health service that is unfair, and the unfairness is easy to see. No wonder the media worked hard to identify such inequities: they made good copy. “Post-code rationing,” as it is called, became a national scandal. NICE was set up by the Secretary of State for Health as an independent body to provide national advice on promoting good health and preventing and treating ill health. It aimed to offer NHS professionals advice on how to provide their patients with the highest available standards of care. The Secretary of State directed NICE that in appraising health care interventions it should consider “the broad balance of clinical benefits and costs.” Although NICE formally provides advice only, if NICE recommends that a particular drug should be provided on the NHS it is a brave local decision-maker who will go against the advice: both politically and legally this could be problematic. Conversely, if NICE advises that a particular drug is too expensive, given its small benefits, to be provided under the NHS, the local decisionmaker is likely to sigh with relief: there will be more money available for meeting some of the other demands on the limited NHS purse. At one stroke NICE removed two causes of headache

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for politicians. First, it could eliminate any postcode rationing that was proving politically problematic. NICE could be directed to report on whether the relevant intervention should or should not be available within the NHS and all local funders would then step into line. Second, it distanced government from decisions to limit treatment availability. NICE effectively makes resource-allocation decisions affecting an enormous budget and in the full glare of media scrutiny. It tackles real issues that arise in modern health care and it cannot equivocate. It uses a careful process that must be seen to be defensible in a modern democracy and it has to justify its decisions in terms of reasons. Over its 10 years NICE has built up a considerable body of work and its decisions form a kind of case law for its future decisions. NICE explicitly recognizes that its decisions involve a combination of scientific and ethical judgments, which NICE calls “social value judgements” (SVJ). These social values as well as all its reports are readily available on the website and provide an almost unique example of practical decision-making.2

The Values of NICE In 2002 NICE set up a Citizens Council to advise the NICE board on the public’s views about some of the difficult issues which it faced. This Council consists of 30 people at any one time chosen to be representative of ordinary people across the UK. This Council produces reports about these issues, and in addition its views are taken into account by the board in producing its SVJ, in effect its ethical framework, now in its second edition (NICE 2008). This framework is also informed by the law (for example by the Human Rights Act), government policies, consultations, and the experience of advisory board members. According to the board these ethical principles must be taken into account by the various advisory committees in giving their advice. Philosophers may be disappointed, however, by how thin the ethical discussion is that is contained in most of the reports compared with the thoroughness of the scientific and economic analyses. The explicit values of NICE are a combination of procedural values and substantive values. The procedural values highlight that decisions should be made on the basis of rigorous scientific analyses, that they should be transparent, and that reasons for the decisions should be explicit. The decisions are reviewed internally and there is an appeals procedure.

With regard to the substantive values the approach is pluralistic and pragmatic. NICE tries to make sure that its decisions can be carried out in practice by the NHS and it aims to take into account the specific circumstances of each case as they impinge on the NHS, and of the perspectives of the various groups affected by the decision. The SVJ considers explicitly most of the principles adumbrated above. We will consider these under similar headings but also reflecting the discussion in the SVJ.

Cost-effectiveness Central to the working of NICE is what is technically called the incremental cost-effectiveness ratio (ICER). Consider a new drug, let’s say for cancer, that gives a slightly better survival rate than the drug currently used (and funded under the NHS). The new drug is considerably more expensive. For the sake of exposition, suppose that this new drug gives a 2% better chance of cure—that is of normal lifespan—than the current drug and that the current drug gives a 50% better chance of cure than no treatment. The total cost of the course of this drug treatment, let us say, is £10,000 more than the current treatment. On these figures, if we pay for the new drug rather than continue with the current treatment then we will pay £10,000 times 50 (because there is an increase in cure rate of 1/50), which is £500,000 per life saved. If the average life expectancy (if cured) of patients in the relevant group is 20 years, then the cost per life-year saved of using the new drug, compared with using the old drug, is £25,000. The incremental cost-effectiveness ratio for this new drug is therefore £25,000 per life-year saved. We say it is incremental because it is the cost-effectiveness of our increasing the treatment option compared with current, or best alternative, treatment (not compared with no treatment). Effectively this is cost per QALY interpreted in the setting of evolving treatments. In this example we have considered only the effect on life-years. A quality adjustment can be added as described above. The SVJ states, in essence, that there would need to be good reasons to fund an intervention that has an ICER above £30,000 per QALY, and good reasons not to fund an intervention with an ICER below £20,000. There can be good reasons, such as considerations of equity and need (see below), and NICE has recommended treatments that cost more than £30,000 per QALY. But the cost-effectiveness is generally the starting point in

Allocating Health Care Resources in the UK considering whether to fund an intervention. These figures are based on experience and are thought to represent what the NHS on average can afford. The experience of NICE is that even if costeffectiveness is accepted as a key consideration in allocating resources, there are a number of further issues that raise ethical questions and that need to be tackled. Three issues in particular have been highlighted, each raised in our discussion of principles above.

Equity Equity is at the heart of the NHS, and concern about inequity—post-code rationing—was a key reason for establishing NICE. The SVJ has a number of things to say about equity: “The NHS aims to provide free, necessary and appropriate treatment to the whole UK population. Legislation on human rights, discrimination and equality requires that patients are not denied access, or have different or restricted access, to NHS care because of their race, disability, age, sex/gender, sexual orientation, religion, beliefs, or socioeconomic or other status. The board of NICE expects everyone working for or with NICE to be particularly vigilant in avoiding discrimination and promoting equality” (NICE 2008, 23). With regard to situations relating to disability the SVJ states: “NICE should take special account of the needs of disabled people, which includes considering whether there are obstacles that might prevent them from benefiting from NICE guidance. Where necessary and appropriate it should take positive steps to take account of these needs” (NICE 2008, 23). The Citizens Council was asked to consider whether NICE should focus its work on improving health for the whole population even at the risk of widening the gap between socioeconomic groups, or should concentrate on trying to improve the health of the most disadvantaged members of society. The Citizens Council response was that “under most circumstances the process of allocating resources should be first and foremost by the identification of a health condition worth tackling; only then should we consider who suffers from it, and whether resources need to be targeted disproportionately to particular sections of the community. If those individuals happen to belong to a particular ethnic or socio-economic group—so be it. Target them. By contrast, to launch a process with the primary and expressed aim of helping out this or that ethnic or economic

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group will, we suspect, invite complaints of unfair discrimination, and generate avoidable controversy” (NICE 2006b, 15). It is noteworthy that the reasoning in the final part of this statement relates more to political expediency than to ethical principle.

Need The SVJ says very little about need. What it does say appears to reject using need as an additional consideration once cost-effectiveness and equity have been taken into account (NICE 2008, 20–21). Considerations of need, however, do seem to have been taken into account in NICE’s decision about riluzole (NICE 2001). At the time of the assessment riluzole was the only licensed drug available for the treatment of motor neurone disease (amyotrophic lateral sclerosis). Riluzole could delay the time when the patient needed ventilation (needed because the muscle weakness eventually makes unassisted breathing impossible). The data showed that the cost-effectiveness (ICER) was around £38,000, which is above the normal threshold for NICE to recommend treatment. NICE, however, approved riluzole for treatment under the NHS because the committee took account of the severity and relatively short lifespan of people with the condition. In essence it looks as though NICE considered that people with the condition were so badly off that it was justified to pay more than the usual cost-effectiveness threshold. Rescue The NICE Citizens Council Report on the Rule of Rescue states that “a majority [of the Citizens panel] (21 out of 27) said that it [the rule of rescue] should not be rejected completely and it should be applied in certain exceptional cases” (NICE 2006a, 6). Indeed, the Citizens Council preferred to use the term “exceptional case” in preference to “rule of rescue.” The second edition of SVJ is more definitive: “NICE considers that the principles provided in this document are appropriate to resolve the tension between the needs of an individual patient and the needs of present and future users of the NHS. The Institute has not therefore adopted an additional ‘rule of rescue’” (NICE 2008, 20–21). Comment on NICE The value of NICE to those interested in resource allocation in the real world is that it provides

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publicly available documents not only about its stated values but also about how it has tackled specific issues. We will pick out some of these specific issues for comment.

Effectiveness NICE generally uses a standardized, self-completion questionnaire of health outcomes, the EQ-5D, to assess the quality adjustment needed to estimate QALYs (Shaw et al. 2005). This measure, however, is not appropriate for all types of intervention because it does not adequately measure some kinds of outcomes, such as hearing loss. One example, therefore, where NICE had to use a different measure of health outcome to generate QALYs was when considering cochlear implants to enable people with profound hearing impairment to hear better. NICE used the Health Utilities Index version 3, which includes hearing, in order to calculate cost-effectiveness (Feeny et al. 2002). This enables interventions for hearing impairment to be compared, but its use raises the problem of how one can compare QALYs calculated using different measures for quality of life. A second problem that NICE has had to confront is how benefits that are not health benefits should be taken into account. This arose in the assessment of parent training, and other educational programs, in the management of children with conduct disorders (NICE 2006c). Effective treatment is likely not only to improve a child’s health but also his educational achievement and employment, and reduce the chance of his committing crime. The question arises as to whether, in considering the cost-effectiveness of the intervention, the non-health benefits should be put into the equation. NICE decided to take the effects on education into account. Costs It is not only the measurement of the effectiveness that can be problematic, but also what is included in the costs. This issue arose in the context of drugs for Alzheimer’s disease. To the extent that such drugs might delay the need for nursing or residential care, they can reduce costs both for informal caregivers and for the public purse because in many cases part of the cost of such care is borne by the state. NICE decided that the reduction in costs for the public purse should be taken into account in the overall cost of treatment, even though most of this reduction benefited the social services budget rather than the health budget, but that the costs to family and caregivers should not be taken into account (NICE 2009).

Opportunity Costs NICE effectively makes resource-allocation decisions but it does not have responsibility for a budget. The NHS budgets are devolved locally. It is these local bodies, principally the PCTs, that have the responsibility to see that the NHS budget is used wisely for the health of its local population. The scientific evidence, including cost-effectiveness analyses, collected and summarized by NICE can be very helpful to the PCTs in managing their resources. But NICE goes further: NICE tells the PCTs that they must use their limited resources in certain ways, but NICE does not have to face the opportunity costs. In other words, NICE has neither the responsibility for nor knowledge of the health care that cannot be carried out because resources are being spent on what NICE decides must be carried out. This is power without the relevant responsibility (McMillan et al. 2006). Locally managed funding is seen as crucial so that each locality can best address the health needs of its population, recognizing that different populations are different. But if each locality is to make its own decisions, then it is inevitable that different decisions will be made. PRINCIPLES IN PRACTICE: LOCAL DECISION-MAKING The Process of Local Decision-Making Oxfordshire PCT receives a budget from the government—as part of the NHS—and has the responsibility of using this money to purchase the health care for the population it serves (roughly the 600,000 inhabitants of Oxfordshire). The PCT pays for all the primary care, and most of the hospital care, that is provided on the NHS. The government also provides some money directly to SHAs to pay for highly specialized regional services. PCTs are under statutory duties both to promote the health of the local community and not to exceed their annual financial allocation. The Oxfordshire Priorities Forum is a body established to advise the PCT’s Clinical Executive (which has ultimate responsibility for decisions) on particular resource priorities for health care interventions to be provided to the Trust’s population. The Forum provides advice on which interventions and treatments are to be considered a “low priority” for funding and are therefore not normally commissioned by the Oxfordshire PCT. The Forum publishes its advice as policy statements.3 These statements occasionally outline eligibility criteria for treatment.

Allocating Health Care Resources in the UK In addition to the Priorities Forum, the Trust also has in place a mechanism for considering the claims of individual patients who, with the support of their clinician, feel that their situation warrants special attention. This mechanism involves the IFR panel and is the route through which the PCT considers exceptions to its adopted funding policies. The IFR process does not make policy on behalf of the PCT but begins with the policy position and examines exceptionality from there. The key part of the PCT’s policy for considering exceptional circumstances is as follows: Central to our consideration of individual requests for funding, is the question: “Why should this treatment be provided for this patient when the treatment in question is not normally funded?” . . . If funding is to be agreed, there must be some unusual or unique factor about the patient’s clinical circumstances, which suggests that: • The presentation/effect of the condition in the patient differs significantly from that found in the general population of patients with the condition And • The patient is likely to gain significantly more benefit from the proposed treatment than might be expected from the average patient with the condition.” (NHS Oxfordshire 2010, 22)

Principles In Oxfordshire, the South Central Ethical Framework (NHS Oxfordshire 2008) is the key document governing the way in which the principles are applied. This framework helps to ensure that the relevant considerations are raised in the discussions about priority-setting decisions in the region. The ethical framework presents the range of prima facie principles to be considered in making the judgement about the funding of a treatment—they do not have prescriptive weight or a particular ranking. It also provides the basis of reasons for decisions reached through the priority-setting process. There are seven principles that make up the Ethical Framework: 1. 2. 3. 4. 5.

Evidence of clinical and cost-effectiveness Equity Health care need and capacity to benefit Cost of treatment and opportunity costs Needs of the community

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6. Policy drivers 7. Exceptional need With the exception of numbers 5 and 6 these are straightforward instances of the principles previously discussed. In principle 3, “need” is included alongside the concept of capacity to benefit. That is, it is not enough that a group of patients has a certain health need; the health care intervention in question, to address this need, should be one from which that group of patients can benefit. As such, “capacity to benefit” combines an element of effectiveness with patient’s needs and in doing so moderates the way in which the need is addressed. Principle 7 picks up the issue of rescue—this principle functions as a marker for the idea of fair process and should not explicitly feature in the deliberations of the Priorities Forum. Instead, it is instantiated in the IFR process. Principles 5 and 6 register the importance of the policymaking context of the PCT. On the one hand it is required to take into consideration initiatives, policy, and guidance that are made at the regional and national level. These include “National Service Frameworks, NICE technology appraisal guidance, Secretary of State Directions to the NHS and performance and planning guidance” (NHS Oxfordshire 2008, 4). Principle 5 is primarily directed at the local level, registering the importance for the PCT of serving the local community through preventive medicine and addressing the specific range of needs of that community.

Comment on Local Decision-making As in the previous section, the local decision-making structures and their application of the ethical principles outlined above throw up a number of interesting ethical issues that are worthy of discussion. Effectiveness Several questions arise about the status of the evidence of effectiveness. A significant amount of research is done in gathering the relevant evidence of effectiveness of the interventions that are considered by the Priorities Forum. If there is good evidence, this tends to mean that the intervention is funded. Importantly, “good evidence” here is often understood to be evidence from large-scale controlled clinical trials (or the systematic analysis of a range of such trials). Oxfordshire PCT has explicitly ranked the various kinds of evidence and associated them with likely funding outcomes

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(NHS Oxfordshire, 2010). This means that research funding is very important for the kind of treatments that will be funded down the line: if there is a significant amount of funding for a particular stream of research, it is likely that the quality of the evidence produced by that research will be better. There are a number of difficulties with this approach to what counts as “good evidence.” First, we might be skeptical that evidence should be ranked in the way that it tends to be: it might be that evidence from randomized controlled trials is not the “gold standard” for some treatments in some clinical contexts. Controlled trials are designed to answer certain, often narrow, questions that are not always relevant to the patient and the care pathway in which the intervention is used. Second, privileging certain kinds of evidence disadvantages interventions for which that kind of evidence is unobtainable. Many of the interventions considered by the Priorities Forum are brought to the committee precisely because evidence is difficult to obtain for various reasons: the conditions treated might be very rare, the intervention might be difficult to test in a controlled way (this can be true of non-pharmaceutical interventions like wheelchairs or hearing aids for children), or there might be ethical reasons why a controlled trial cannot be conducted. In each of these cases a lack of particular kind of evidence of effect does not mean a lack of effect, nor should it mean lack of funding.

Opportunity Cost The Priorities Forum suffers from a similar “opportunity cost” problem as that faced by NICE. Opportunity costs arise in this context because the policies are one-off decisions rather than inbudget tradeoffs. Like NICE the Priorities Forum does not have a budget and makes policy recommendations outside the context of a budget (albeit a little closer to the decision-makers). In some Trusts a Director of Finance sits on the Priorities Forum and can provide more of a budgetary context for the policies. It remains the case, however, that the Forum advises about, rather than decides, priorities. Any guidance it offers, because it is outside of a specific budget, runs the risk of underestimating the costs of failing to fund an alternative intervention. The real prioritizing (and genuine appreciation of the opportunity costs) happens when it is clear what will not be funded as a result of funding a particular treatment. This can happen

only in the context of decisions about a full budgetary allocation. One solution here is for the Priorities Forum to produce more nuanced guidance that will be of more assistance (than “low priority”) in ranking and trading off between treatments. This would mean that the Forum could operate more effectively as an advisor to the Clinical Executive.

Rescue The existence of IFR panels connects importantly to the considerations about rescue and, in our view, is the best way to understand the proper operation of the moral claims lying behind the rule of rescue. It seems clear that there is some obligation to “rescue” those who are unfairly overlooked by the policymaking process, but this does not preclude there being a robust policy for considering and indeed appropriately limiting such circumstances. The big question for IFR panels is what is to count as exceptional. Exceptions arise where there is a case to be made by an individual that his or her situation is relevantly different from the circumstances considered in the formation of the policy and captured in the decision that led to the policy. Given this, what counts as exceptional looks to be either indefinable or very nearly so. Any definition, given in advance, would need to capture all the ways in which an individual might unjustly fall outside of the policy. Some of the difficulties here involve whether social or cultural considerations should play a role in assessing the patient’s ability to benefit or whether the special nature and welfare of caregivers should be included in such considerations (Newdick 2006). Overall, the importance of the policy stage of priority-setting is very important for IFR panels: the better specified the policy is, the more closely circumscribed the conditions of exceptionality. If the policy has the appropriate nuance and desiderata, then cohorts of patients will form part of the original decision and the policy will reflect the state of knowledge of effectiveness, cost-effectiveness, and need (etc.) of the condition and its management. In this way the IFR panel as well as the patient and his or her clinician can better understand the reasoning behind the decisions and the ways in which an individual might be exceptional. On this account, IFR panels should not make policy, nor should they consider cases about which there is no policy.

Allocating Health Care Resources in the UK CONCLUSION This chapter has provided a general outline of the processes by which resource-allocation decisions are made in the NHS, with particular attention to the ethical principles governing those decisions. These processes should be of interest to anyone concerned with how rationing should be tackled in practice. Although there are many unresolved issues, the NHS has made serious attempts to develop proper processes and principles within the practical and political constraints that health care providers have to face. The importance of the NHS as a national icon will mean that the processes of decision-making within it will continue to receive significant attention and will continue to develop, being shaped, as always, by the broader political and economic climate. As the capacity of medicine improves and broadens, costs and expectations will continue to rise—new technologies will mean more can be done to prevent and treat illness and disease, and more can be done in health terms to affect people’s overall welfare. It is likely that the importance of these decision-making processes will only increase. As things stand, more conceptual work is needed in articulating and clarifying the practical issues that arise in resource-allocation decisionmaking at the various levels, so that the process can be made as consistent and robust as it should be. Concepts such as need, equity, effectiveness, and exceptionality need to be better understood in the practical resource-allocation context. In a similar vein, our reflections on the UK system point to the importance of building the cohesion of the policy- and decision-making structure. This will help the process to be flexible enough to handle future trends and constraints and to deliver decisions that are just. AC K N OW L E D G M E N T S M.S. is grateful for the support of the Oxford NIHR Biomedical Research Centre. T.H. is grateful to the Uehiro Foundation and the Brocher Foundation for support while working on this chapter. Notes 1. National Health Service. About the NHS: Overview. [Online] Rev. Dec. 4, 2009. Available: http://www.nhs. uk/NHSEngland/thenhs/about/Pages/overview.aspx. [June 18, 2010]. 2. National Institute for Health and Clinical Excellence. Welcome to the National Institute for Health and Clinical

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Excellence. [Online] Available: http://www.nice.org.uk/. [June 18, 2010]. 3. Oxfordshire NHS. Priority Setting—Lavender Statements. [Online] Rev. May 2010. Available: http:// www.oxfordshire.nhs.uk/lavender.asp. [June 20, 2010].

References Bell, J.M., & S. Mendus, eds. (1988). Philosophy and Medical Welfare. Cambridge: Cambridge University Press. Broome, J. (1988). Good, fairness and QALYs. In Philosophy and Medical Welfare, ed. J.M. Bell & S. Mendus, pp. 57–74. Cambridge: Cambridge University Press. Broome, J. (1990). Fairness. Proceedings of the Aristotelian Society 91:87–102. Daniels, N. (2000). Accountability for reasonableness in private and public health insurance. In The Global Challenge of Health Care Rationing, ed. A. Coulter & C. Ham, pp. 89–106. Buckingham: Open University Press. Daniels, N., & J. Sabin. (1997). Limits to health care: fair procedures, democratic deliberation and the legitimacy problem for insurers. Philosophy and Public Affairs 26:303–350. Daniels, N., & J. Sabin. (2002). Setting Limits Fairly. New York: Oxford University Press. Feeny, D., W. Furlong, G. Torrance, C. Goldsmith, Z. Zhu, S. DePauw, M. Denton, & M. Boyle. (2002). Multiattribute and single-attribute utility functions for the Health Utilities Index Mark 3. Medical Care 40:113–128. Gross, M.L. (2002). Ethics, policy, and rare genetic disorders: the case of Gaucher disease in Israel. Theoretical Medicine 23:151–170. Hope, T., L.P. Østerdal, & A. Hasman. (2009). An inquiry into the principles of needs-based allocation of health care. Bioethics. Published online, June 8, 2009. Jenni, K., & G. Loewenstein. (1997). Explaining the “identifiable victim effect.” Journal of Risk and Uncertainty 14:235–257. Jonsen, A.R. (1986). Bentham in a box: Technology assessment and health care allocation. Law, Medicine and Health Care 14:172–174. Lockwood, M. (1988). Quality of life and resource allocation. In Philosophy and Medical Welfare, ed. J.M. Bell & S. Mendus, pp. 33–56. Cambridge: Cambridge University Press. McMillan, J.R., M. Sheehan, D. Austin, & J. Howell. (2006). Ethics and opportunity costs: have NICE grasped the ethics of priority setting? Journal of Medical Ethics 32:127–128. NHS Oxfordshire. (2008). South Central Ethical Framework. Available at: http://www.oxfordshire.

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nhs.uk/documents/SOUTHCENTRALETHICAL FRAMEWORK.pdf (Accessed June 24, 2010). NHS Oxfordshire. (2010). Policy for Funding of Treatments Outside Commissioned Services: Individual Patient Requests (IPR) Process. Available at: http://www. oxfordshirepct.nhs.uk/about-us/how-the-pct-works/ documents/IPRPolicyupdated.pdf (Accessed June 24, 2010). National Institute for Health and Clinical Excellence. (2001). NICE Technology Appraisal Guidance 20: Guidance on the Use of Riluzole (Rilutek) for the Treatment of Motor Neurone Disease, January 2001. Available at: http://guidance.nice.org.uk/TA20/ Guidance/pdf/English (Accessed June 18, 2010). National Institute for Health and Clinical Excellence. (2006a). Report of the Citizens Council: Rule of Rescue, January 2006. Available: www.nice.org.uk/ niceMedia/pdf/Rule_of_rescue_report_ final_0606.pdf (Accessed June 23, 2010). National Institute for Health and Clinical Excellence. (2006b). Report of the Citizens Council: Inequalities in Health, June 2006. Available at: www.nice.org. uk/niceMedia/pdf/CCreportonHealthInequalities. pdf (Accessed June 23, 2010). National Institute for Health and Clinical Excellence. (2006c). NICE Technology Appraisal Guidance 102: Parent-Training/Education Programmes in the Management of Children with Conduct Disorders, July 2006. Available at: http://guidance.nice.org. uk/TA102 (Accessed June 18, 2010). National Institute for Health and Clinical Excellence. (2008). Social Value Judgements: Principles for the

Development of NICE Guidance (2nd ed.), July 2008. Available at: http://www.nice.org.uk/media/ C18/30/SVJ2PUBLICATION2008.pdf (Accessed June 23, 2010). National Institute for Health and Clinical Excellence. (2009). NICE technology appraisal guidance 111 (amended): Donepezil, Galantamine, Rivastigmine (Review) and Memantine for the Treatment of Alzheimer’s Disease, November 2006 (amended September 2007, August 2009). Available at: http:// guidance.nice.org.uk/TA111 (Accessed June 22, 2010). Newdick, C. (2006). “Exceptional circumstances”— access to low-priority treatments after the Herceptin case. Clinical Ethics 1:205–208. Scanlon, T.M. (1975). Preference & urgency. Journal of Philosophy 72:655–669. Shaw, J.W., J.A. Johnson, & S. Coons. (2005). US valuation of the EQ-5D Health States: development and testing of the D1 valuation model. Medical Care 43:203–220. Sheehan, M. (2007). Resources and the rule of rescue. Journal of Applied Philosophy 24:352–366. Wiggins, D. (1998). Needs, Values, Truth. 3rd ed. Oxford: Clarendon Press. Williams, A. (1988). Ethics and efficiency in the provision of health care. In Philosophy and Medical Welfare, ed. J.M. Bell & S. Mendus, pp. 111–126. Cambridge: Cambridge University Press.

18 Global Health, Human Rights, and Distributive Justice J O H N W. L A N G O

Nearly 80% of childhood cancers occur in low income countries, where the cure rate is well under 20% due to late diagnosis and inadequate treatment options. programme of action for cancer therapy (pact) of the international atomic energy agency (iaea) (iaea  , p. )

I think that if one person has access, all people should have access to at least a basic level of [cancer] treatment. That’s why cancer should be part of the global health agenda, because there are many inequities in the access to cancer treatment. juan antonio casas-zamora, director, latin american division, iaea department of technical cooperation (iaea  , p. )

I

n general, there are many inequities in the access that the people of the world have to medical treatments of all kinds. What would be a fair distribution of health benefits worldwide? In this chapter, this question of the just distribution of health benefits to the people of the world is viewed through the lens of a moral theory of human rights. I answer the question by examining a moral concept of a human right to health. Within a framework of presuppositions about human rights and distributive justice, my purpose is to explore moral issues that are particular to the subject of global health. The chapter is divided into three parts. In the first part, which is introductory, key provisions of some international treaties and declarations are quoted. My aim in commenting on these key provisions is to introduce some of the chapter’s main themes. The second part discusses the question of the just distribution of global health benefits. Antedating the Universal Declaration of Human Rights (1948), the Preamble to the Constitution (1946) of the World Health Organization declares the following principle: “The enjoyment of the

highest attainable standard of health is one of the fundamental rights of every human being” (WHO 1946, p. 2). In substantial agreement with this principle, I support the following moral concept of a human right to health. It is the human right to maximum necessary health assistance (briefly, the health right). The term “necessary” means medically necessary. Instead of the term “health care,” the broader term “health assistance” is used, so as to encompass health issues of all sorts—for instance, environmental health hazards. Since this health right is equally every human being’s right, maximum necessary health assistance ought to be provided equally to everyone everywhere in the world. Correlative to the health right, there is the human duty to provide maximum necessary health assistance (briefly, the health duty). Is this health duty impossibly demanding? In the third part, I suggest how this question should be answered. Indeed, there is a problem of realization that limits the temporal process of fulfilling the health duty. To elucidate this realization problem, I compare the health right with a human right to development.

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THE HUMAN RIGHT T O H E A LT H I N I N T E R N AT I O N A L T R E AT I E S A N D D E C L A R AT I O N S In this first part of the chapter, I comment on key provisions in international treaties and declarations, with the aim of introducing some main themes. Charter of the United Nations The UN Charter is an international treaty. By signing and ratifying it, the United States and the other 192 member states of the United Nations have committed themselves to comply with it. The various aims of the UN Charter are declared in the opening lines of the Preamble. Of particular relevance here is the following aim: “to reaffirm faith in fundamental human rights.” According to James Nickel, human rights “exist as legal norms” (2007, p. 10). Indeed, insofar as human rights are embodied in international treaties and declarations, they exist as legal norms. Nonetheless, the words “to reaffirm faith” suggest that human rights have a prior existence as moral norms. In viewing the question of the just distribution of global health benefits through the lens of a moral theory of human rights, I am primarily concerned with human rights as moral rights. While drawing upon political philosophy, I approach the topic of human rights from the standpoint of moral philosophy. By means of moral philosophy, we should think critically about whether a moral human right is correctly or adequately embodied in a legal document as a legal human right. Constitution of the World Health Organization In his highly influential and important book Basic Rights, Henry Shue held that the basic human right to health care is a “subsistence” right; specifically, it is the right to “minimal preventive public health care” (1996, p. 23). In opposition to Shue, Nickel claimed that the human right to health care is “broader” than a subsistence right (2007, p. 140), but it is still only a right to “basic health care” (2007, p. 102). Consider, then, the following thesis. There is a basic human right to basic health care. The two occurrences of the word “basic” in this thesis have different meanings. From the basicness of the human right, it does not follow (logically or conceptually) that the health care must be basic. By contrast, I am supporting the human right to maximum necessary health assistance. As I have already noted, approximately this health right is

embodied in the Constitution of the World Health Organization (WHO). The WHO Constitution is an international treaty. In particular, the following two principles are declared in the Preamble (WHO 1946, p. 2): [The first WHO principle] Health is a state of complete physical, mental and social wellbeing and not merely the absence of disease or infirmity. [The second WHO principle] The enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, religion, political belief, economic or social condition.

Especially because of the ideal of health expressed by the first WHO principle, the right to health expressed by the second WHO principle is very highly demanding. Critics contend that it is impossibly demanding. Similarly, an objection to the health right that I am supporting is that it is impossibly demanding. In the third part of this chapter, I reply to this objection.

Universal Declaration of Human Rights According to the UN Charter, the General Assembly is empowered to “make recommendations for the purpose of [. . .] the realization of human rights” (Article 13 (1)). On Dec. 10, 1948, the General Assembly approved Resolution 217A (III), the Universal Declaration of Human Rights (UDHR). Among the many human rights declared in the UDHR, there is a human right to health care. It is noteworthy that the UDHR right to health care is quite different than the WHO right to health. Rather than in an article of its own, the idea of health is included in an article in the UDHR that declares rights about living standards and social security: Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control. (Article 25 (1))

When is a standard of living adequate? Following Shue, a minimalist answer is that a living standard

Global Health, Human Rights, and Distributive Justice is adequate when it is at or above the level of “minimal economic security, or subsistence” (Shue 1996, p. 23). “By minimal economic security, or subsistence,” Shue wrote, “I mean unpolluted air, unpolluted water, adequate food, adequate clothing, adequate shelter, and minimal preventive public health care” (1996, p. 23). Shue’s words echo the UDHR. The UDHR includes rights to food, clothing, housing, and medical care under the rubric of an adequate standard of living. Similarly, Shue included rights to food, clothing, shelter, and health care under the rubric of a life of “at least” subsistence (1996, p. 23). The UDHR has been enormously influential. As Nickel observed, the UDHR’s “list of human rights is, broadly speaking, the list that is still in use today” (2007, p. 1). Unfortunately, however, the UDHR has apparently influenced some proponents of human rights to interpret the idea of a health care right by analogy with the ideas of rights to food, clothing, and housing. Indeed, it might be sensible to construe a basic human right to food as a right to basic food. There is no human right to dine in fine restaurants. By contrast, my view is that the human right to health is not a right to basic (or minimum or subsistence) health care. Comparisons with food, clothing, and housing can be misleading.

International Covenant on Economic, Social and Cultural Rights With the aim of fortifying the economic, social, and cultural rights in the UDHR as binding legal norms, an international treaty containing such rights was adopted by the General Assembly (1966) and ratified sufficiently (1976)—namely, the International Covenant on Economic, Social and Cultural Rights (ICESCR). Because the ICESCR has been ratified by 160 states, “it can be seen as a treaty that reflects global consensus on the universal human rights standards that apply to the economic, social and cultural fields” (ESCRNET 2011). Sadly, although signed by the administration of President Jimmy Carter (Oct. 5, 1977), the ICESCR remains among the many essential international treaties (e.g., the Comprehensive Test Ban Treaty and the Rome Statute of the International Criminal Court) that the United States has failed to ratify. Remarkably, the ICESCR separates a right to health from rights to food, clothing, and housing. Concerning the latter three rights, the ICESCR retains the language of the UDHR, including the word “adequate”: “The States Parties to the

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present Covenant recognize the right of everyone to an adequate standard of living for himself and his family, including adequate food, clothing and housing, and to the continuous improvement of living conditions” (Article 11 (1)). Significantly, however, the ICESCR states a right to health in the language of the WHO Constitution: “The States Parties to the present Covenant recognize the right of everyone to the enjoyment of the highest attainable standard of physical and mental health” (Article 12 (1)). The essence of the second WHO principle is included in the ICESCR. The ICESCR right to health is not the right merely to adequate health care; instead, it is the right to the highest attainable standard of health.

General Comment No. 14 by the Committee on Economic, Social and Cultural Rights Famously, Shue held that human rights are basic “only if enjoyment of them is essential to enjoyment of all other rights” (1996, p. 19). Should the ICESCR right to health be construed as basic in Shue’s sense? According to the UN Charter, the Economic and Social Council is empowered to “make recommendations for the purpose of promoting respect for, and observance of, human rights” (Article 62 (2)). To encourage observance of the provisions of the ICESCR by its States Parties, the Council eventually established (1986) the Committee on Economic, Social and Cultural Rights (CESCR). Subsequently, this Committee released a series of “General Comments” about various ICESCR provisions, including General Comment No. 14 (2000): “The right to the highest attainable standard of health (article 12 of the International Covenant on Economic, Social and Cultural Rights).” Paul Hunt, the first UN Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, appraised this document as “groundbreaking” (2007, p. 370). In General Comment No. 14, the ICESCR right to health is interpreted as a fundamental human right in something like Shue’s sense of the term “basic”: “Health is a fundamental human right indispensable for the exercise of other human rights” (CESCR 2000, para. 1). More explicitly, because General Comment No. 14 endorses the ICESCR right to health, it is the fundamental right of everyone to the enjoyment of the highest attainable standard of physical and mental health that is

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indispensable for the exercise of other human rights. In summary, I have discussed the affirmation of human rights in the UN Charter, the WHO Constitution’s fundamental human right to the enjoyment of the highest attainable standard of health, the quite different human right to health care in the Universal Declaration of Human Rights, an international treaty containing approximately the WHO Constitution’s right to health (ICESCR), and General Comment No. 14 on the ICESCR right to health. In substantial agreement with the ICESCR right to health, I defend in the next part of this chapter the human right to maximum necessary health assistance.

THE JUST DISTRIBUTION O F G L O B A L H E A LT H BENEFITS Correlative to this health right, there is a health duty. A core thesis is that the question of the just distribution of the benefits of global health assistance (briefly, the benefits distribution question) can be answered by examining the nature of this duty to provide maximum necessary health assistance. Before determining how health benefits are to be justly distributed worldwide, we human beings need to ascertain what the health benefits are that we have the human duty to provide. Human Rights and Correlative Human Duties In this section and the next section, I approach the topic of human rights from the standpoint of moral philosophy. For lack of space, I am not able to discuss this topic fully. Instead, I make some remarks about human rights that are especially pertinent to my project in this chapter. Human rights entail correlative human duties. In the words of the ICESCR Preamble, we human beings have duties “to promote universal respect for, and observance of, human rights.” So that people can realize their human rights effectively, there are duties to effect their realization that must be satisfied. However, there is a standard objection to my claim that the health right entails the correlative health duty: Positive duties are duties to perform actions that are helpful, whereas negative duties are duties to refrain from performing actions that are harmful. Evidently, political and civil rights entail negative duties. For instance, the human right not to be “subjected to torture” (UDHR, Article 5) entails the negative duty not to subject

anyone to torture. But there are no economic, social, or cultural rights that entail positive duties. For example, the “right to work” (UDHR, Article 23, para. 1) does not entail the positive duty to provide work. Therefore, there is no right to health that entails a positive duty to provide health assistance. Quite influentially, Shue contested this standard objection by advocating a “tripartite typology of duties”—namely, duties to “avoid depriving,” duties to “protect from deprivation,” and duties to “aid the deprived” (1996, p. 52). Indeed, economic, social, and cultural rights entail duties to aid, but so do political and civil rights. Let me illustrate the influence of Shue’s duties to avoid, protect, and aid (Glasius 2009, p. 150). According to General Comment No. 14, the ICESCR health right “imposes three types or levels of obligations on States parties: the obligations to respect, protect, and fulfil” (CESCR 2000, para. 33). For example, among the political and civil rights in the UDHR, there are these human rights: “Everyone has the right to life, liberty and security of person” (Article 3). Consider, in particular, the human right to life. Correlative to this right, there is a tripartite typology of duties: the duty not to take lives (or allow deaths), the duty to protect people from threats to their lives, and the duty to aid people in preserving their lives. The bipartite typology of duties not to harm and duties to help is firmly rooted in the history of ethics. For instance, among the pluralism of duties in the ethical theory of W. D. Ross, there are duties of nonmaleficence and duties of beneficence (Ross 1988). By reflecting on the notion of beneficence, duties to do or promote good can be distinguished from duties to prevent or remove harm. Regard, for example, William Frankena’s quadripartite typology of moral obligations: in addition to the obligation “not to inflict harm or evil” and the obligation “to do or promote good,” there is the obligation “to prevent evil or harm” and the obligation “to remove evil” (1973, p. 47). Tom Beauchamp and James Childress espoused principles of nonmaleficence and beneficence in Principles of Biomedical Ethics.1 In particular, they distinguished “four norms” of nonmaleficence and beneficence that are closely similar to Frankena’s “four general obligations” (Beauchamp & Childress 2009, pp. 150–51). Specialists in biomedical ethics might understand Shue’s three types of duties as “specifications” of Beauchamp and Childress’s principles.2 In short, Shue’s tripartite typology of duties might be obtained from a tripartite typology of

Global Health, Human Rights, and Distributive Justice principles of nonmaleficence and beneficence— namely (and briefly), do no harm, obviate harm, and do good. Another historical example is Kant’s duty of beneficence: “To be beneficent, that is, to promote according to one’s means the happiness of others in need, without hoping for something in return, is every man’s duty” (1991, p. 247).3 Frequently, the task of promoting the happiness of others in need can be very demanding, and so Kant qualified the duty with the phrase “according to one’s means.” The health duty that I am supporting should be understood as comparably qualified: human beings have the duty to provide according to their means maximum necessary health assistance. I discuss this means qualification further in the last section of this part.

Indispensability Arguments Having commented on the notion of a tripartite typology of duties, I comment now on the idea of indispensability. Paraphrasing Shue, it might be claimed that a human right is basic only if enjoyment of it is indispensable for (or essential to) enjoyment of all other rights (1996, p. 19). However, if such a criterion of basicness were presupposed, it is doubtful whether any human right could be shown to be basic (Green 2004). Fortunately, I have no need to establish here that the health right is basic in this sense. But I do want to make a more limited claim of indispensability—namely, that sometimes enjoyment of some human rights is indispensable for enjoyment of other human rights. For example, sometimes enjoyment of the right to food is indispensable for enjoyment of the right to life. Using this example for concreteness, this relationship of indispensability between human rights can also be expressed as follows. Under some circumstances, the right to life is enjoyed only if the right to food is enjoyed. There is a correlative relationship of indispensability between human duties. Sometimes fulfillment of some duties is indispensable for fulfillment of other duties. Using the preceding example for concreteness, the indispensability relationships between duties correlative to the two rights are as follows. Under some circumstances, the duty to aid people in preserving their lives is fulfilled only if the duty to aid them by providing them with food is fulfilled. Under some circumstances, the duty to protect people from threats to their lives is fulfilled only if the duty to protect

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them from food deprivation is fulfilled. Under some circumstances, the duty not to take lives (or allow deaths) is fulfilled only if the duty not to deprive people of food is fulfilled. Continuing the example for concreteness, a sort of argument that relates human rights to human duties is exemplified as follows. Under some circumstances, the right to life is enjoyed only if the right to food is enjoyed. In other words, sometimes enjoyment of the right to food is indispensable for enjoyment of the right to life. This indispensability relationship between the right to food and the right to life is isomorphic with the following indispensability relationship between correlative duties. Therefore, sometimes fulfillment of the duty to aid people by providing them with food is indispensable for fulfillment of the duty to aid them in preserving their lives. In other words, under some circumstances, the duty to aid people in preserving their lives is fulfilled only if the duty to aid them by providing them with food is fulfilled. I call an argument of this sort an indispensability argument.

The Indispensability of the Human Right to Maximum Necessary Health Assistance Additional to my presuppositions about human rights and duties in the preceding sections, I presuppose that there is some sort of human right to health. I refer to it in this section as the right to health. Correlative to the right to health, there is a tripartite typology of health duties: the duty to avoid depriving people of means necessary to their health, the duty to protect people from threats to their health, and the duty to aid people in obtaining health assistance. My aim here is to answer the question of whether the right to health is a human right to maximum necessary health assistance. That is, the question is whether (what I am calling in this section) the right to health is (what I called in preceding sections) the health right. (To avoid confusing the two terms, the term “the health right” is not used again in this section.) In answer to this question, I state some indispensability arguments. In so doing, I utilize some of the human rights in the UDHR. My purpose in stating these arguments is not to establish that the right to health is a basic right. Instead, my purpose is to show how the right to health is indeed a right to maximum necessary health assistance. To begin with, I state an indispensability argument that relates the human right to life to the

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human duty to aid people in obtaining health assistance. Under some circumstances, the right to life is enjoyed only if the right to health is enjoyed. In other words, sometimes enjoyment of the right to health is indispensable for enjoyment of the right to life. This indispensability relationship between the right to health and the right to life is isomorphic with the following indispensability relationship between correlative duties. Therefore, sometimes fulfillment of the duty to aid people in obtaining health assistance is indispensable for fulfillment of the duty to aid them in preserving their lives. In other words, under some circumstances, the duty to aid people in preserving their lives is fulfilled only if the duty to aid them in obtaining health assistance is fulfilled. Purposely, this statement of an indispensability argument about the right to health parallels the statement in the preceding section of an indispensability argument about the right to food. Some comparisons of health and food are revealing. Arguably, the right to food is a subsistence right, for life can be (barely) preserved by minimum (or basic) food. The purpose of the indispensability arguments stated in this section is to show how the right to health is different. Indeed, under some circumstances, life can be preserved by minimum (or basic) health care. For example, because of measles immunizations worldwide, “measles deaths dropped by an astonishing 74 per cent” from 2000 to 2007 (MDGR 2009, p. 25). However, under other circumstances, life can be preserved only by health care that is far from minimum (or basic). Shue asserted that a “right to subsistence would not mean [. . . ] that every baby born with a need for open-heart surgery has a right to have it” (1996, p. 23). To the contrary, the stated indispensability argument implies that any baby born anywhere in the world with a need for heart surgery has the right to have it, if it is medically necessary to preserve her life. Similarly, there is an indispensability argument that relates the human right to life to the duty to protect people from threats to their health, and there is an indispensability argument that relates the human right to life to the duty to avoid depriving people of means necessary to their health. For brevity, I assume that it is clear how these arguments can be stated. Under some circumstances, the duty to protect people from threats to their lives is fulfilled only if the duty to protect them from threats to their health is fulfilled. Under some circumstances, the duty not to take their lives (or allow their deaths) is fulfilled

only if the duty to avoid depriving them of means necessary to their health is fulfilled. These indispensability arguments are general, in that the various means of health assistance are not specified. A main point is that there are specific indispensability arguments that relate the human right to life to specific duties about health assistance. Consider, for instance, the following specific indispensability argument involving the right to heart surgery. Under some circumstances, the right to life is enjoyed only if the right to heart surgery is enjoyed. In other words, sometimes enjoyment of the right to heart surgery is indispensable for enjoyment of the right to life. This indispensability relationship between the right to heart surgery and the right to life is isomorphic with the following indispensability relationship between correlative duties. Therefore, sometimes fulfillment of the duty to aid a human being in obtaining heart surgery is indispensable for fulfillment of the duty to aid her in preserving her life. In other words, under some circumstances, the duty to aid a human being in preserving her life is fulfilled only if the duty to aid her in obtaining heart surgery is fulfilled. To provide confirmation for the thesis that the right to health is a human right to maximum necessary health assistance, many and various specific indispensability arguments should be stated. There are circumstances under which enjoyments of rights to many and various forms of non-minimum (or non-basic) health assistance— for instance, radiation treatment for cancer—are indispensable for enjoyment of the right to life. Under some circumstances, the duty to aid a human being in preserving her life is fulfilled only if the duty to aid her in obtaining radiation treatment for cancer is fulfilled. Under some circumstances, the duty not to allow a human being to die is fulfilled only if the duty not to overprice a life-saving drug is fulfilled (Pogge 2005). And so forth. Having discussed indispensability arguments involving the human right to life, I want to discuss indispensability arguments involving another human right: a human right not to be subjected unduly to severe pain or suffering. Among the political and civil rights in the UDHR, there are the following rights: “No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment” (Article 5). Consider the human right not to be subjected to torture. According to the Convention against Torture, an act of torture is (among other things) an “act by

Global Health, Human Rights, and Distributive Justice which severe pain or suffering, whether physical or mental, is intentionally inflicted on a person” (Article 1). Underlying the UDHR human right not to be subjected to torture is the unexpressed human right not to be subjected unduly to severe (physical or mental) pain or suffering. This right pertains not only to severe pain or suffering intentionally, knowingly, recklessly, or negligently inflicted by human beings but also to severe pain or suffering inflicted by natural causes—for instance, serious diseases and other serious health problems. There are both general and specific indispensability arguments that relate the right not to be subjected unduly to severe pain or suffering to duties correlative to the right to health. Again, I assume that it is clear how such arguments can be stated. Under some circumstances, the duty to protect people from undue severe pain or suffering is fulfilled only if the duty to protect them from threats to their health is fulfilled. Under some circumstances, the duty to aid a human being in avoiding undue severe pain or suffering is fulfilled only if the duty to aid her in obtaining prosthetics is fulfilled. Under some circumstances, the duty to aid a human being in avoiding undue severe (physical or mental) pain or suffering is fulfilled only if the duty to aid her in obtaining psychotherapy is fulfilled. And so forth. Enjoyment of the right to health is indispensable for enjoyments of other human rights, but there is no space to discuss additional indispensability arguments. For example: “Everyone has the right to freedom of movement and residence within the borders of each State” (UDHR, Article 13). Underlying this specific human right is an unexpressed general human right to freedom of movement. Under some circumstances, enjoyments of specific rights to non-minimum (or non-basic) health assistance—for instance, wheelchairs and physical therapy—are indispensable for enjoyment of the human right to freedom of movement. In summary, I have discussed some indispensability arguments about the right to health. With the aim of confirming the thesis that the right to health is a human right to maximum necessary health assistance, many and various general and specific indispensability arguments should be stated. I have discussed general indispensability arguments involving the right to life and the right not to be subjected unduly to severe pain or suffering, but there are also such arguments involving other human rights. In addition to discussing

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a specific indispensability argument for heart surgery, I have mentioned specific indispensability arguments for radiation treatment for cancer, affordable drugs, prosthetics, psychotherapy, wheelchairs, and physical therapy, but there are also such arguments for colonoscopy, dental work, nursing care, and so forth. For lack of space, I cannot state more indispensability arguments, and so henceforth I assume that the thesis that there is a human right to maximum necessary health assistance is confirmed. Can the goal of providing such comprehensive worldwide health assistance be realized? Before suggesting how this realization problem should be solved in the third part of the chapter, I answer the benefits distribution question in the next section.

Maximum Necessary Health Assistance Is Equally Every Human Being’s Right The Preamble of the UDHR recognizes “the equal and inalienable rights of all members of the human family.” What is meant by the word “equal”? This question should be answered by means of a moral principle of equality. Each human right is equally the right of every human being everywhere in the world. Thus the human right to maximum necessary health assistance (i.e., the health right) is equally the right of every human being everywhere in the world. Correlative to the equality of human rights recognized in the Preamble of the UDHR, the equality of human duties to realize human rights is proclaimed there: “every individual [. . . ] shall strive [. . . ] to secure their universal and effective recognition and observance.” Each duty correlative to a human right is equally the duty of every human being everywhere in the world. Correlative to the health right, there is the human duty to provide maximum necessary health assistance (i.e., the health duty). Thus the health duty is equally the duty of every human being everywhere in the world. Correlative to the equal right to maximum necessary health assistance, there is the equal duty of providing maximum necessary health assistance. It is crucial to understand how this health duty is qualified. Human beings have the duty to provide according to their means maximum necessary health assistance. In the next part of this chapter, I discuss how this means qualification pertains to the realization problem. Having qualified his duty of beneficence with the phrase “according to one’s means,” Kant raised a “casuistical” question

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about it: “How far should a man expend his means in practicing beneficence?” (1991, p. 248). This is a question about burdens. How far should human beings expend their means in shouldering the burdens of the health duty? This too is a question about burdens. At present, however, I am concerned with the question of the just distribution of health benefits worldwide. A core thesis is, to repeat, that this question can be answered by examining the nature of the health duty. Because the human right to maximum necessary health assistance is the right of all human beings equally, the correlative human duty is the duty to provide maximum necessary health assistance to all human beings equally. The equality of the right entails equality in the distribution of benefits. All human beings have the duty (according to their means) to distribute maximum necessary health benefits equally to all human beings. In short, my answer to the benefits distribution question is that the just distribution is an equal distribution. Notice that, if the human right to health were merely a right to minimum (or basic or subsistence) health assistance, the following question of distributive justice would remain: Does a moral requirement of fairness hold of the distribution of non-minimum (but necessary) health benefits? However, since the human right to health is a right to maximum necessary health assistance, there is no such question to answer.

THE PROBLEM OF R E A L I Z AT I O N Progressive Realization of the Health Right Is the duty to provide such comprehensive worldwide health benefits impossibly demanding? Indeed, it is impossibly demanding to provide all people with maximum necessary health assistance at present. Admittedly, it might always prove impossibly demanding to provide all people with maximum necessary health assistance in future. However, integral to the health duty is a means qualification. Human beings have the duty to provide according to their means maximum necessary health assistance for every human being everywhere in the world. At present and in future, it is not impossibly demanding to do this. To elucidate this means qualification, I need to make some remarks about the moral relevance of the distinction between performing an action and attempting to perform it. When you have the

obligation to perform an action, you also have the obligation to attempt as much as possible to perform it. Consider a standard example of an obligation to rescue. You are obligated to rescue someone who is drowning, but you are not an expert swimmer, and before you are able to reach him he drowns. Even though it proved impossible for you to rescue him—even though rescuing him was beyond your means—you were obligated to attempt as much as possible to rescue him. Even though you failed to rescue him, you did not fail to fulfill your obligation to rescue him. For integral to that obligation is a means qualification. By fulfilling your obligation to attempt as much as possible to rescue him, you fulfilled your (qualified) obligation to rescue him (according to your means). The means qualification of the health duty involves this notion of attempting as much as possible. Because human beings have the duty to provide maximum necessary health assistance worldwide, they have the duty to attempt as much as possible to provide it. Even if it is impossible for them to provide it—even if providing it is beyond their means—they still have the duty to attempt as much as possible to provide it. They still have the duty to provide it according to their means. By fulfilling their duty to attempt as much as possible to provide it, they fulfill their (qualified) duty to provide it (according to their means). The ICESCR right to health is the right to the enjoyment of the highest attainable standard of health. Significantly, the ICESCR acknowledges the need to achieve “progressively the full realization” of this right to health (Article 2). Noting the ICESCR provision for “progressive realization” of human rights (CESCR 2000, para. 30), General Comment No. 14 recognizes that “for millions of people throughout the world, the full enjoyment of the right to health still remains a distant goal” (CESCR 2000, para. 5). There is a related right the full enjoyment of which still remains a distant goal for millions of people throughout the world: the right to development. The ICESCR right to health is not impossibly demanding, when its progressive realization is interrelated sufficiently with the progressive realization of the right to development. Similarly, my view is that the health right needs to be progressively realized. Even though full enjoyment of the health right is a distant (and perhaps unrealizable) goal, human beings still have the duty to attempt as much as possible to achieve progressively the full enjoyment of it.

Global Health, Human Rights, and Distributive Justice The concept of enjoyment of a right is a scalar concept, and the notion of attempt is a temporal notion. With the passage of time, various attempts to achieve various enjoyments of various ingredients of the health right could be more and more successful. The burdens of fulfilling the health duty are not impossibly demanding, when they are distributed over sufficient periods of time.4 The realization of global health may be compared with the realization of the abolition of slavery. In the UDHR, there is a human right that has been progressively realized since the advent of the abolitionist movement in the 18th century: “No one shall be held in slavery or servitude; slavery and the slave trade shall be prohibited in all their forms” (Article 4). And it still needs to be progressively realized today. As Ethan Kapstein reported in “The New Global Slave Trade,” there are still about “12 million” human beings who are at present “living in some form of forced servitude” (2006, p. 105). Even if this human right can never be fully enjoyed in future, human beings still have the duty to attempt as much as possible to abolish slavery.

The Implementation of the Health Right More specifically, how should the health right be implemented? In this section, I suggest how this question should be answered, by relating the health right to the right to development. In the UN Declaration on the Right to Development, it is proclaimed that The right to development is an inalienable human right by virtue of which every human person and all peoples are entitled to participate in, contribute to, and enjoy economic, social, cultural and political development, in which all human rights and fundamental freedoms can be fully realized. (DRD 1986, Article 1 (1))

Although absent from the UDHR, such a human right is implicit there. As the wording suggests, enjoyment of the right to development can be essential to enjoyment of human rights in the UDHR. Noting the phrase “fully realized,” a main point is that the progressive realization of the health right is intrinsic to the progressive realization of this right to development. Correlative to the human right to development, human beings have the duty to provide (according to their means) development assistance. A principal claim of this section is that the

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maximum goals of the health duty are not impossibly demanding, when their progressive realization is interrelated sufficiently with the progressive realization of the long-term goals of economic, social, cultural, and political development. Arguably, the primary agents responsible for implementing human rights are states. According to Allen Buchanan and Matthew DeCamp, “states are the primary agents” responsible for global health (2006, p. 101). My view is that, even if the politically primary agents are states, the morally primary agents are individual human beings (Buchanan & DeCamp 2006, p. 98). Because human rights entail human duties, every human being has duties of health assistance. In the ICESCR, the agents who “recognize” the right to health—and thus the primary agents responsible for implementing it—are “States Parties” (that is, the states ratifying the ICESCR) (Article 11 (1)). Of course, each State Party is particularly responsible for implementing the right to health in its own national legislation and national health policy. Additionally, as General Comment No. 14 emphasizes, “States parties should recognize the essential role of international cooperation and comply with their commitment to take joint and separate action to achieve the full realization of the right to health” (CESCR 2000, para. 38). Furthermore, “all members of society [. . . ] have responsibilities regarding the realization of the right to health” (CESCR 2000, para. 42). For the sake of illustration, I consider a wellknown case of such international cooperation, the eight Millennium Development Goals (MDGs). “One of the most striking features” of these goals of development assistance “is the prominence they give to health” (Hunt 2004, p. 4). But the MDGs are minimum goals. Realization of the MDGs would only implement “core” (or minimum) health obligations expressed in General Comment No. 14 (CESCR 2000, paras. 43–44). The progressive realization of these minimum MDGs is proving to be very demanding, but not impossibly so (MDGR 2009). For instance, I have mentioned how worldwide measles immunizations are helping to meet MDG 4, the goal of reducing child mortality. Moreover, according to a recent report in The Lancet, “Substantial, albeit varied, progress has been made towards MDG 5,” the goal of improving maternal health (Hogan et al. 2010, p. 1069). Even if states are primarily responsible for realizing the MDGs, individual human beings are also responsible. Consider, for instance, MDG 6,

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the goal of combating diseases such as malaria. To furnish mosquito nets to children at risk of malaria, individual human beings can make individual contributions to the United Nations Foundation’s Nothing But Nets campaign at http:// www.nothingbutnets.net/ Also, individual human beings can aid in realizing MDG 1, the healthrelated goal of eradicating extreme poverty and hunger. In particular, citizens of developed states can strive to elect leaders who champion MDG 1, they can support anti-poverty legislation and policies, and they can willingly accept the consequent taxes. Attempts by developed states to further the MDGs can be hampered by inadequate moral and political support by their citizens. The MDGs are not enough. Even if all of the MDGs were fully realized, the many and various health goals implicit in the health right would remain largely unrealized. MDG 7 and MDG 8 are concerned respectively with environmental sustainability and (mainly) economic assistance for development, but they apparently involve health goals that are minimum (e.g., “safe drinking water”) (MDGR 2009, p. 45). Even if extreme poverty and hunger were fully eradicated, and the health goals of the other MDGs were fully realized, it is very likely that hundreds of millions of human beings would still receive only subsistence health assistance. Communicable diseases are prioritized in the MDGs, but people in developing states suffer also from noncommunicable diseases (NCDs). According to a 2008 WHO global “Action Plan” for preventing and controlling NCDs, “four types of noncommunicable diseases—cardiovascular diseases, cancers, chronic respiratory diseases and diabetes—make the largest contribution to mortality in the majority of low- and middle-income countries and require concerted, coordinated action” (WHO 2008, p. 3). Included in this WHO action plan is the proposal that global efforts about NCDs should be “an integral part of work on global development” (WHO 2008, p. 7). For example, as a recent article in The Lancet attests, “the world faces a huge and largely unperceived cost of inaction around cancer in developing regions, which merits an immediate and largescale global response” (Farmer et al. 2010, p. 1186). On Sept. 19–20, 2011, the UN General Assembly held a high-level meeting on the prevention and control of NCDs. In a 2004 report, Paul Hunt (as UN Special Rapporteur on the right to health) featured the health-related MDGs, and stressed the importance

of “reinforcing” MDG 8, the goal of a “global partnership” for development (Hunt 2004, paras. 32–35). Later, in a 2008 report featuring health systems, he maintained that the “vertical (or selective) health interventions” of the MDGs are not enough; additionally, to implement the human right to health more fully, there must be the progressive realization of “the long-term goal of an effective health system” (Hunt 2008, para. 56). In broad agreement, my view is that, in order to progressively realize the health right, it is essential to progressively realize robust health systems that provide equality of access to all forms of nonminimum necessary health assistance. Even such health systems are not enough. According to a 2009 report commissioned by the U.S. Institute of Medicine (IOM), The U.S. Commitment to Global Health, global health is interrelated with “global economic and human development” (IOM 2009, p. 2). While making recommendations about the MDGs, the IOM report also makes recommendations about health systems (IOM 2009, pp. 62–68). Additionally, there are recommendations about health practitioners (e.g., education and training) and institutions (e.g., teaching hospitals and universities) (IOM 2009, p. 115).5 Nevertheless, the IOM report is primarily concerned with “the basic health needs of poor countries” (IOM 2009, p. 131). The goals of the IOM report need to be supplemented, so as to encompass health needs that are not basic. To progressively realize the health right, it is essential to provide aid for the education and training of the various sorts of health practitioners that are required for all of the forms of non-minimum necessary health assistance. And it is essential to provide aid for the building (or rebuilding) of hospitals and universities in which the skills of practicing all of the forms of non-minimum necessary health assistance can be taught. In addition to top-down aid for such projects provided by states and intergovernmental organizations (e.g., the World Bank), individual human beings should provide aid (according to their means)—for instance, by making microcontributions to fund scholarships. In light of these comments about the MDGs, the WHO action plan for NCDs, and the three health reports, I want to make the following claims. The subject of global health is interrelated with the subject of global economic, social, cultural, and political development. Enjoyment of the right to economic, social, cultural, and political development is essential to enjoyment of the

Global Health, Human Rights, and Distributive Justice health right. The progressive fulfillment of the health duty is intrinsically interrelated with the progressive fulfillment of the duty of economic, social, cultural, and political development assistance.

Questions about the Just Distribution of Burdens How should the burdens of fulfilling this duty of development assistance be justly distributed? In the philosophical literature, there are competing principles of distributive justice (Beauchamp & Childress 2009, pp. 242–43). In Justice Beyond Borders, Simon Caney discussed “four particular cosmopolitan principles of distributive justice” (2005, p. 102). Indeed, my approach in this chapter is cosmopolitan, but I refrain from endorsing any of those principles. Instead, it is sufficient for my purposes to presuppose that there is a suitable just distribution principle, by means of which the stated question can be answered. How, then, should the burdens of fulfilling the health duty be justly distributed? To answer this general question completely, I would have to answer a variety of specific questions. For example, what percentage of their gross domestic product should richer states provide to poorer states? One answer is that they should give at least “5 percent of their income to reduce global poverty” (Singer 2009, p. 152). How much should “financially comfortable” human beings contribute? One answer is that they should contribute at least 1% (Sreenivasan 2002, p. 83). How extensively should richer states satisfy the health needs of their own citizens before providing health assistance to citizens of poorer states? For lack of space, I cannot attempt to answer these and other specific questions here. Many interesting questions of fairness about health are discussed by Norman Daniels (2008a, 2008b). To facilitate an answer to the general question, I have related the health duty to the duty of development assistance. My suggestion is that a just distribution principle that is suitable for answering questions about justly distributing the burdens of global development assistance is also suitable for answering questions about justly distributing the burdens of global health assistance. Conclusions My purpose in this chapter was to explore moral issues that are particular to the subject of global health, within a framework of presuppositions about human rights and distributive justice. Arguably, the human rights to food, clothing, and

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housing are rights to minimum (or basic or subsistence) food, clothing, and housing. By contrast, what is especially distinctive about the human right to health is that it is a right to maximum necessary health assistance. The equality of this health right entails equality in the distribution of global health benefits. Consequently, what is especially distinctive about the correlative human duty is that it is the duty to provide such comprehensive worldwide health benefits. Nevertheless, the burdens of fulfilling the health duty need not be impossibly demanding, if the health right is progressively realized over a sufficient period of time. Since the burdens of fulfilling the duty of development assistance can be justly distributed, so can the burdens of fulfilling the related health duty. What should be our timeframe for progressively realizing the health right? According to the Rio Declaration on Environment and Development, “The right to development must be fulfilled so as to equitably meet developmental and environmental needs of present and future generations” (RD 1993, Principle 3). Moreover, in the 2005 UN World Summit Outcome Document, it is recognized “that climate change is a serious and longterm challenge that has the potential to affect every part of the globe” (GA 2005, para. 51). A comparable long-term challenge that has the potential to affect every part of the globe is that of progressively realizing the human right to maximum necessary health assistance. The timeframe for combating global climate change is not an inappropriate timeframe for combating global health inequalities.

Notes I wish to thank Rosamond Rhodes for her very instructive comments on the penultimate draft of this chapter. Earlier drafts of the chapter were the bases of presentations at the Yale Interdisciplinary Center for Bioethics (Nov. 10, 2010) and the 52nd Annual International Studies Association Convention (ISA 2011) in Montreal (March 16, 2011). 1. For an argument for a moral right to primary global health care that is based on a nonmaleficence principle, see Gordon (2008). 2. I discuss the question of how specific moral rules are derived from general moral principles (with reference to Beauchamp and Childress) in Lango (2007). 3. I discuss this duty in Lango (1998). 4. Compare the account of the achievement of a “long-term goal” in “nonideal theory” by Rawls (1999, p. 89). 5. Concerning the “brain drain” of health workers from poor states, see Brock (2009, pp. 198–204, 284–291).

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Beauchamp, T., & J. Childress (2009). Principles of Biomedical Ethics, 6th ed. New York: Oxford University Press. Brock, G. (2009). Global Justice: A Cosmopolitan Account. Oxford: Oxford University Press. Buchanan, A., & M. DeCamp. (2006). Responsibility for global health. Theoretical Medicine and Bioethics 27:95–114. Caney, S. (2005). Justice Beyond Borders: A Global Political Theory. Oxford: Oxford University Press. CESCR (2000). General Comment No. 14 (2000). The right to the highest attainable standard of health (article 12 of the International Covenant on Economic, Social and Cultural Rights). Substantive issues arising in the implementation of the International Covenant on Economic, Social and Cultural Rights. Committee on Economic, Social and Cultural Rights. UN Economic and Social Council. E/C.12/2000/4 (11 August 2000). Available at: http://www2.ohchr.org/english/bodies/cescr/ comments.htm. Daniels, N. (2008a). International health inequalities and global justice. In M. Boylan (ed.), International Public Health Policy and Ethics. New York: Springer. Daniels, N. (2008b). Just Health: Meeting Health Needs Fairly. New York: Cambridge University Press. DRD (1986). Declaration on the Right to Development. General Assembly Resolution A/RES/41/128 (4 December 1986). ESCR-NET (2011). Issues and Resources, Section 5: Background information on the ICESCR. International Network for Economic, Social & Cultural Rights (ESCR-NET). Available at http://www.escrnet.org/resources_more/resources_more_show.htm? doc_id=425251. Farmer, P., et al. (2010). Expansion of cancer care and control in countries of low and middle income: a call to action. The Lancet 376:9747 (2 October 2010):1186—1193. Fox, A.M., & B.M. Meier (2009). Health as freedom: addressing social determinants of global health inequities through the human right to development. Bioethics 23:112–122. Frankena, W.K. (1973). Ethics (2nd ed.). Englewood Cliffs, NJ: Prentice Hall. GA (2005). 2005 World Summit Outcome. General Assembly Resolution A/RES/60/1 (20 September 2005). Glasius, M. (2009). Global civil society and human rights. In M. Goodhart (ed.), Human Rights: Politics and Practice. Oxford: Oxford University Press. Gordon, J.-S. (2008). Poverty, human rights, and just distribution. In M. Boylan (ed.), International

Public Health Policy and Ethics. Dordrecht: Springer. Green, M.J. (2004). Global justice and health: is health care a basic right? In M. Boylan (ed.), Public Health Policy and Ethics. Dordrecht: Springer. Hogan, M.C., et al. (2010). Maternal mortality for 181 countries, 1980–2008: a systematic analysis of progress towards Millennium Development Goal 5. Lancet 375:1609–1623. Hunt, P. (2004). Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, (8 October 2004). General Assembly A/59/422. A/ HRC/7/11. Available at http://www2.ohchr.org/ english/issues/health/right/annual.htm. Hunt, P. (2007). Right to the highest attainable standard of health. Lancet 370:369–371. Hunt, P. (2008). Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, (31 January 2008). General Assembly A/HRC/7/11. Available at http://www2.ohchr.org/english/issues/ health/right/annual.htm. IAEA (2009). PACT: Building Partnerships to Fight the Cancer Epidemic. International Atomic Energy Agency (IAEA) (September 2009). Available at http://www.iaea.org/Publications/Booklets/ TreatingCancer/pact0808.pdf IAEA (2010). IAEA Bulletin 52:1 (September 2010). Available at http://www.iaea.org/Publications/ Magazines/Bulletin/Bull521/index.html. ICESCR (1966). International Covenant on Economic, Social and Cultural Rights. General Assembly Resolution 2200A (XXI) (16 December 1966). IOM (2009). The U.S. Commitment to Global Health: Recommendations for the Public and Private Sectors. Committee on the U.S. Commitment to Global Health. Institute of Medicine. Washington DC: The National Academies Press. Available at www.nap. edu. Kant, I. (1991). The Metaphysics of Morals. Translated by Mary Gregor. Cambridge: Cambridge University Press. Kapstein, E.B. (2006). The new global slave trade. Foreign Affairs 85:103–115. Lango, J.W. (1998). Does Kant’s ethics ignore relations between persons? In J. Haber & M. Halfon (eds.), Norms and Values. Totowa, NJ: Rowman & Littlefield. Lango, J.W. (2007). Can specific rules be deduced from moral principles? In M. Weber & P. Basile (eds.), Subjectivity, Process, and Rationality. Frankfurt: Ontos Verlag. MDGR (2009). Millennium Development Goals Report 2009. New York: United Nations. Available at http:// www.un.org/millenniumgoals/reports.shtml.

Global Health, Human Rights, and Distributive Justice Nickel, J.W. (2007). Making Sense of Human Rights (2nd ed.). Oxford: Blackwell. Pogge, T.W. (2005). Human rights and global health: a research program. Metaphilosophy 36:182–209. RD (1993). Rio Declaration on Environment and Development. Report of the United Nations Conference on Environment and Development, Rio de Janeiro, 3–14 June 1992. Vol. I, Annex I. A/CONF. 151/26/Rev.1 (Vol. I). Rawls, J. (1999). The Law of Peoples. Cambridge: Harvard University Press. Ross, W.D. (1988). The Right and the Good. Indianapolis: Hackett. Shue, H. (1996). Basic Rights: Subsistence, Affluence, and U.S. Foreign Policy (2nd ed.). Princeton: Princeton University Press. Singer, P. (2009). The Life You Can Save: Acting Now to End World Poverty. New York: Random House.

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Sreenivasan, G. (2002). International justice and health: a proposal. Ethics & International Affairs 16:81–90. UDHR (1948). Universal Declaration of Human Rights. General Assembly Resolution 217A (III), U.N. Doc. A/810 at 71 (10 December 1948). WHO (1946). Constitution of the World Health Organization. Geneva: World Health Organization, 1946. The original version is available at: http:// www.who.int/library/collections/historical/en/ index3.html. WHO (2008). 2008–2013 Action Plan for the Global Strategy for the Prevention and Control of Noncommunicable Diseases. Geneva: World Health Organization, 2008. Available at http://www.who. int/nmh/Actionplan-PC-NCD-2008.pdf.

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19 Equal Access to Health Care Under the UN Disability Rights Convention M I C H A E L A S H L E Y S T E I N, J A N E T E . L O R D, A N D DOROTHY WEIS S TOLCHIN

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he United Nations Convention on the Rights of Persons with Disabilities (CRPD), the first human rights treaty of the 21st century, sets forth protections for some 650 million individuals with disabilities worldwide. The CRPD was designed to seamlessly integrate civil and political (negative) rights with economic, social, and cultural (positive) rights (Stein 2007). As such, the treaty provides a comprehensive framework for promoting and protecting the full range of human rights for disabled persons, including their equal access to health care (Stein et al. 2009a). Notably, Article 25 requires that individuals with disabilities have access to “the highest attainable standard of health without discrimination on the basis of disability” by ensuring their equal right to “the same range, quality and standard of free or affordable health care” and related services provided to the non-disabled general population. These services include sexual and reproductive health, prevention of additional disabilities, and health-related rehabilitation. Moreover, Articles 6 and 7 compel, respectively, that women and children with disabilities enjoy the full spectrum of human rights; Article 9 requires appropriate accessibility measures; Article 10 affirms the right to life; Article 17 protects bodily and mental integrity; Article 20 facilitates access to mobility aids and training; Article 26 ensures the provision of habilitation and rehabilitation; and Article 32 calls for inclusive international development assistance. One could argue further that access to health care is inextricably connected to many other articles. For instance, in many parts of the world gainful employment, as detailed in Article 27, is instrumental for providing the economic means and/or the essential insurance coverage needed to access health care services.

The CRPD was adopted via general consensus by the General Assembly, indicating that States’ representatives to the United Nations uniformly approved and supported the treaty’s provisions. In this chapter, we describe the social model of disability and demonstrate how it underlies the CRPD’s mandate that States ensure equal access to health care for persons with disabilities as integral to achieving their human rights. To illustrate, we demonstrate the implications of this convention for HIV/AIDS programming and for the practice of clinical medicine.

THE SOCIAL MODEL OF DISABILITY AND THE CRPD Historically, and across societies, people with disabilities have been viewed from a “medical model” that misperceived “handicapped” individuals as biologically flawed and in need of repair if they were to participate as full members of their respective societies (Liachowitz 1988). In turn, individuals with disabilities who could not be medically cured and made to fit a socially constructed ideal of normalcy were systematically excluded from social opportunities by being accorded limited participation—for example, relegated to separate schools (Stein et al. 2009b). Such segregation was perpetuated with a mixture of resignation and paternalism. Persons with disabilities who could not be rehabilitated back into daily society were accepted as defective relative to the general population, but still in need of care (Stein et al. 2009b). By contrast, and internationally, disabled persons organizations (DPOs) have advanced the social model of disability (Stein & Stein 2007). This framework maintains that it is the physically engineered environment and the attitudes that are

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reflected in its arbitrary construction that play a central role in creating the condition termed “disability.” According to the social model, factors exogenous to a disabled person’s own limitations determine the extent to which that individual will be able to function in a given setting (Silvers 1998). Hence, it is the culturally accepted architectural practice of designing courthouses with stairs, rather than an individual’s tetraplegia, that precludes a wheelchair user from accessing her legal system. The CRPD is influenced by the social model of disability, largely because of the participation of DPOs and people with disabilities throughout the treaty negotiation process (Stein & Lord 2008). These participants were instrumental in educating and lobbying States’ representatives on substantive areas of law and policy by sharing their lived experiences. This participatory dynamic was captured by the DPOs’ negotiation aphorism of “Nothing about us without us” (Stein & Lord 2008). A notable example is the Preamble statement that the notion of disability is “an evolving concept” that “results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others.”

I M P L I C AT I O N S O F T H E MEDICAL MODEL F O R H E A LT H C A R E A L L O C AT I O N The conceptual shift from a medical to a social model of disability is crucial to all elements of the CRPD, but of signal importance within the context of health care. Due to the influence of the medical model—which views disability as a medical problem requiring medical solution—persons with disabilities historically have been placed under the dominion of medical professionals (Fries 1997). Individuals with permanent physical and/or cognitive disabilities were seen as both less healthy than individuals without disabilities, and as incurable, and were provided substandard medical care or worse. People with disabilities throughout the world have been and continue to be subjected to egregious human rights violations by medical providers. The catalog of documented abuses precipitated by medically trained personnel includes involuntary institutionalization, forced sterilization, nonconsensual medical experimentation

(Braddock & Parish 2001), and, during the Holocaust, eugenic-driven murder of children and adults with disabilities (Lord 2004). The consequences of these human rights violations— even if intended as humane and needed treatment—have been profound. Inexcusably, these indignities continue through to the present day, in all areas of the globe, despite documentation by non-governmental organizations (Ahern & Rosenthal 2006, MDRI 2005, MDRI 2007). Along similar lines, the care and control of persons with disabilities by medically oriented disability “experts,” who paternalistically profess beneficial motivations, has led to “neutral” determinations regarding the lower relative quality of life for disabled persons (Silvers & Stein 2002). These allegedly objective assessments continue to influence the allocation of health care resources, especially when those resources are limited, by utilizing an unchallenged baseline assumption that instantiates a lower hedonic level for the quality of life experienced with disability (Bagenstos & Schlanger 2007). In consequence, health care for people with disabilities has been given a reduced priority relative to that of the mainstream population. Yet, while disability in itself is not equivalent to poor health, individuals with disabilities, like individuals without disabilities, have health care needs requiring medical attention. Undervaluing the quality of life of persons with disabilities, and thus denying equal access for their health care needs, is a culturally prevalent phenomenon that manifests across all levels of social policy determinations. This rationale for limiting equal access to health care resources for persons with disabilities is implemented with the use of disability-adjusted life-years (DALYs) in determining public health care distribution (Anand & Hanson 1997). DALYs provide a numerical score for the value of a year of life gained from a medical intervention (Mont 2007, p. 1658). Thus, a year lived with a disability is valued less than a year lived without that disability, and the value of multiple years of life for an individual with a long-term disability is presumed less than providing those years for a person without that disability (Groce, Chamie, & Me 2000). A chief consequence of these evaluations, which are represented as scientific and neutral when used by policymakers, is that fewer resources are allocated to individuals with disabilities than to similarly situated non-disabled individuals (Anand &

Equal Access to Health Care Hanson 2004). By viewing all disabled persons as experiencing less enjoyable lives than non-disabled persons, the use of DALYs systematically shortchanges people with disabilities. A well-publicized example of the typical bias was a 1992 poll of Oregon citizens to determine health care rationing priorities. The results were treated as objective empirical data, and they uniformly prioritized resource allocation to non-disabled persons over disabled persons (Orentlicher 1996). The survey was conducted by the Oregon Department of Health and Human Services and came to light when the state based allocation decisions on these findings and requested a Medicaid waiver to implement them (Sullivan 1992). That application was denied on grounds of violating the Americans with Disabilities Act, and the proposed Oregon health care program was withdrawn under federal pressure (Sullivan 1992). Social prejudice toward the population of people with disabilities was to be implemented by a state entity acting in the interests of the general population, on grounds that were supposed to be neutral. Put another way, a belief that disability status reflects an inferior and incurable condition makes it seem wasteful to use health care dollars to treat persons with disabilities. Bias prevents policymakers from seeing that justice is better served by accepting the view that medical resources should be used to keep all persons, including those with disabilities, as healthy as possible. Last, it bears noting that some academics who have theorized about the just level of distribution of health care resources to persons with disabilities have likewise drawn from medical model notions when deciding that certain groups are less worthy of state resources than others. What is common to these determinations is that each employs a baseline of typical human functioning against which persons with disabilities ought to be measured. This is true for Martha Nussbaum’s capability approach, which specifically excludes those individuals with intellectual disabilities who cannot achieve any one of her 10 basic human capabilities, including reason, from her ethically mandated allocation of state resources (Nussbaum 2006, p. 181). Similarly, Mark Stein, applying utilitarian analysis, asserts that health care resources ought to be distributed to persons with disabilities only when those funds can increase the welfare of disabled persons to an equal or greater degree than if allotted to non-disabled persons (Mark Stein 2006).

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I M P L I C AT I O N S O F T H E SOCIAL MODEL FOR H E A LT H C A R E A C C E S S Contrary to a medical model perspective, the CRPD presupposes that people with disabilities can be healthy and that impairment does not equate to illness (Stein et al. 2009a). Moreover, in stark contrast to undervaluing the lived experiences of persons with disabilities, the CRPD operates from a presumption that disabled people lead lives that are of equal value and dignity to lives lived without disability (Stein 2007). Hence, the right of equal access to health care guaranteed under the CRPD works from the assumption that a dollar spent on a person with a disability provides the same value as a dollar spent on a non-disabled person. In so doing, the CRPD avoids the pitfalls of utilitarian accounts such as Mark Stein’s, which would determine health care allocation by viewing every dollar spent on an individual with a disability as deducting an equivalent dollar from an individual without a disability (Mark Stein 2006). Significantly, in mandating equal access to health care for persons with disabilities, the CRPD does not sidestep the crucial and prevalent issue of limited state resources. Instead, the CRPD recognizes limitations by acknowledging within Article 4’s general obligations that, as an economic, social, and cultural right, health care is subject to progressive realization. Under international human rights law, states are obligated to fulfill this right as quickly as possible. The requirement that reasonable accommodation be provided to facilitate access to and enjoyment of rights is, however, bounded, and the duty to accommodate extends only insofar as it does not impose “a disproportionate or undue burden.” At the same time, the CRPD underscores that state fulfillment of that obligation must be taken through equal steps, such that persons with disabilities have a right to equal access to health care services, even when financial circumstances limit their overall provision, and the CRPD articulates that excluding individuals with disabilities from equal access to health care is a prohibited form of discrimination. Deprivation is therefore considered an immediately justiciable right. HIV/AIDS AND DISABILITY Preexisting social, legal, and economic arrangements contribute significantly to the ability of persons with disabilities to access health care and

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participate in related decision-making. In particular, disability stereotyping and stigmatization, along with the mutually constitutive relationship between poverty and disability, results in exclusion and discrimination across all aspects of life, including in the provision of health care (Stein et al., forthcoming). The World Health Organization reports that the majority of the 650 million people living with disabilities around the world—80% of whom live in economically developing countries—lack access to appropriate medical care and rehabilitation services (UNAIDS et al. 2009). This absence of services seriously diminishes full inclusion and participation in all aspects of life, as health care and rehabilitation services can promote improved health and independence, and education and empowerment regarding both. This exclusion is at odds with rights-based approaches to development generally, as well as disability rights as set forth in the CRPD, which is informed by principles of the social model of disability: dignity, inclusion, participation, nondiscrimination, and respect for difference. Groce’s 2004 global survey on HIV/AIDS and disability provides a particularly poignant example of these corrosive dynamics at work by suggesting an uneven distribution of and access to the continuum of effective HIV/AIDS response, including prevention, care, treatment, and support (Groce 2004). Groce analyzed over a thousand responses from 57 countries and sought to identify the specific barriers experienced by people with disabilities in accessing HIV/AIDS services and to determine the impact of the AIDS epidemic on persons with disabilities. The survey was disseminated to organizations working with individuals and groups of persons with disabilities, organizations working with HIV/AIDS for the general population, and relevant government ministries. Findings from this study suggest that disabled persons have infection rates comparable to, and quite possibly significantly higher than, rates found in the general public. Subgroups within disabled populations, including women and adolescents with disabilities, and members of ethnic and minority populations with disabilities, are at even greater risk for infection. The impact of the AIDS epidemic on disabled persons has, however, gone virtually unrecognized among both disability and AIDS outreach and advocacy groups (Groce 2005). The primary reason for inadequate access to HIV/AIDS resources among people with disabilities

is that this population is invisible to those who are implementing outreach efforts. This oversight is rooted in false assumptions that persons with disabilities are not sexually active, are unlikely to use drugs or alcohol, and are at less risk of violence or rape than their non-disabled peers. Yet people with disabilities are as likely to be sexually active and to use drugs or alcohol as others. Moreover, poverty exposes women and girls with disabilities to sexual exploitation, and research suggests that a large percentage will experience sexual assault or abuse during their lifetime (UNAIDS et al. 2009). Women and girls with disabilities, as well as persons with intellectual disabilities, are at particularly high risk for violence and sexual abuse when confined to institutions. And, in some cultures, the myth of sex with a disabled person as a “cure” for HIV infection is pervasive (Groce & Trasi 2004). Furthermore, services offered at clinics, hospitals, and other locations may be physically inaccessible to persons with disabilities. People with disabilities are also more vulnerable to HIV infection if they do not have ready access to information, education, and services necessary to ensure sexual and reproductive health and prevention of infection. Programs may inadequately communicate with patients because they lack sign language facilities, or fail to provide information in alternative formats such as Braille, audio, or plain language. The consequence of this exclusion is that the disabled population does not have the opportunity to absorb safer-sex messages and to negotiate safer sexual behaviors. The human rights framework expressed in the CRPD affirms non-discrimination in relation to health, adding disability-specific legal context to the statement by the Committee on Economic, Social and Cultural Rights in General Comment 14 on non-discrimination. It specifies that “health facilities, goods and services must be accessible to all, especially the most vulnerable or marginalized sections of the population, in law and in fact, without discrimination on any of the prohibited grounds” (General Comment 14). HIV/AIDS prevention, care, treatment, and support are mutually reinforcing elements and, if implemented equitably within a human rights framework, provide a continuum of effective response for all persons, including persons with disabilities. Reframing disability as a social construction helps to expose discrimination inherent in the medical model and, in the health domain, compels participation in decision-making by health service participants.

Equal Access to Health Care M E D I C A L T R A I N I N G TO A D VA N C E C R P D G O A L S The CRPD’s mandate for equal access to health care, when applied as an overarching principle for the practice of medicine, offers persons with disabilities broad access to well-informed comprehensive care. The scope of this care extends beyond medical decision-making to include attention to social contexts and community participation—key considerations in facilitating the achievement of human rights. Importantly, providing this type of care implies that health care providers be appropriately equipped to deliver it. What follows presents a rationale and recommendations for training health care providers within the framework of the social model of disability in order to best equip them to care for persons with disabilities as mandated by the CRPD. Reforms in medical education would be a significant step to implement the equal access mandates of the CRPD in the context of comprehensive medical care. Easily implemented measures could help create empathetic clinicians with specific knowledge and skills to obtain information respectfully from patients with disabilities, apply relevant medical knowledge, honor patient dignity and autonomy, advocate effectively for their patients, and train future health care professionals to do the same. Many students of the health care professions complete training programs never having cared for a person with a disability. They never considered common considerations such as communicating complex medical information to a person with an intellectual disability, managing the complications of chronic pain or low vision, weighing the implications of recommending nursing home placement as opposed to a more communityinclusive option for a patient who needs assistance with daily living tasks. In the absence of practical knowledge about such topics, practitioners cannot adequately attend to them, and persons with disabilities experience poorer health and resulting diminished access to work and societal involvement. Students must be educated in examining a patient with a disability, which often includes asking how she prefers to be examined. Students must receive specific training in the preventable medical complications of disability and lack of access to care. They must also learn strategies that facilitate patients living in the least restrictive environments for care that promote the maintenance of individual autonomy to the greatest

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extent possible. These educational points utilize the social model of disability in the service of teaching quality care. They teach respect for the dignity of each individual and the means to optimize the person–environment interaction to promote independence and health. Disability-specific education may be most easily integrated into clinical training programs by associating it with existing curricula on care for underserved groups, minority groups, the elderly, and even medical ethics and/or health care policy coursework, required in some training programs. Disability-related cases can be utilized in epidemiology courses, and disability-related topics can be sub-parts of larger problem-based learning cases. As new providers are trained, practicing clinicians and existing practices can be included in the shift from the medical to social model of disability. For example, clinicians and practices can obtain low- or no-cost training from DPOs regarding strategies for increasing accessibility of care. Additionally, training in teamwork and communication across disciplines can enhance the delivery of care for individuals with disabilities, who often have multifaceted needs spanning medical and rehabilitation disciplines. Training programs that incorporate individuals with disabilities as teachers across classroom and clinical settings could provide an efficient means of training future providers in ways meaningful to the very population the practice aims to serve—individuals with disabilities themselves. Persons with disabilities, acting on their own behalf or as representatives of DPOs, are stakeholders in the process of change toward full access to health care for the disability community. They have unique experiences and goals that motivate their participation in the education of health care providers. As teachers, individuals with disabilities not only provide information, but can challenge their students to practice sensitively, fairly, and respectfully. They can teach trainees to identify and modify stigmatizing behaviors (e.g., in the use of language: the preferred “person who uses a wheelchair” instead of “wheelchair-bound person”), to ask appropriate questions (such as asking individuals with disabilities about sexual activity), and to address those questions meaningfully (for example, by identifying appropriate resources). Teacher-stakeholders can demonstrate that to provide truly equal access to care, providers may need to allot additional time and services for some patients. In a well-supported learning environment, students can begin to develop

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strategies for incorporating these skills into their own practices. The reality of the importance of these lessons is reinforced by the teacher himself who shares first-hand lived experience. An added benefit of teacher-stakeholders drawn from local communities is that they can infuse students with an understanding of the needs of those communities and practical means to address them. These might include issues of specific stigmatizing behaviors, patterns of abuse, and financial limitations of local health care systems. This education can directly inform clinical care that is contextually based and aims toward community integration and realization of human rights. Training programs that accept qualified individuals with disabilities as students act as equality of opportunity agents. The presence of students with disabilities in a training program for health professionals transforms a disabled individual from the object of care to a person capable of providing care. It also raises expectations for people with disabilities themselves, their classmates, and society. In addition, disability inclusion makes explicit the importance of teaching about care for individuals with disabilities. Ultimately, the inclusion of students with disabilities in health care provider training programs can erode both false assumptions regarding the limitations of those individuals and the inequalities in care that result from such assumptions. Medical providers who are attentive to equality of care will also perceive its absence more broadly and advocate for it as they are able. In addition to providing learning experiences that underscore the imperatives of the CRPD, training programs can easily prepare students to be teachers themselves in the arenas of care and health care access for individuals with disabilities. Many medical training programs today reinforce the role of clinicians as peer educators and are increasingly rewarding students for entering careers as “clinician-educators.” Students already serve as teaching assistants in a variety of disciplines, and can be encouraged by training programs to learn and then teach disability-related subjects. Students empowered to teach colleagues, other health professionals, and future students about the goals and challenges inherent in providing care for individuals with disabilities will promote an increasingly informed health care environment able to provide optimal patient-centered care. Optimal patient care creates healthier patients; healthier patients can most meaningfully advocate for and embrace their human rights.

Curricular education about disability-specific issues is the most challenging to implement, as time in training programs is already tightly scheduled and educators with a variety of critical issues vie for time to teach students. Yet, lack of access to disability-sensitive health care results in delayed diagnoses, loss of windows for treatments, accumulation of secondary comorbidities, and ultimately increased need for care, all at huge costs to individuals with disabilities, their families, and society as a whole. Public health officials and DPOs, based upon epidemiologic evidence of the expanding number of individuals with disabilities and the impact of poor care on outcomes and overall public health and resources, can encourage training programs to expand this area of health care education for the purposes of limiting these dire health and financial outcomes. Reformulating health care provider education will result in progressive change over time as providers enter the workforce. Training providers through a social model view of disability is expanding. Its application to translational medicine holds great promise for better implementing equal health care access as a human right for individuals with disabilities.

CONCLUSION The CRPD was adopted at a time when the provision of health care and the facilitation of access for all persons, including individuals with disabilities, was recognized as an important component of justice. In this chapter, we reviewed the social model of disability and the implication of the CRPD’s mandate that states ensure equal access to health care for persons with disabilities as a core component of achieving their full human rights. We explored the particular application of this justice imperative to the specific contexts of HIV/ AIDS programs and how reform could be achieved through medical education. The social model of disability that underscores the CRPD focuses on equality, justice, and dignity in fostering full human rights for individuals with disabilities as a matter of claimed rights rather than as received charity. The CRPD thus empowers individuals with disabilities to access top-quality patient-centered health care consistent with the norms of dignity, autonomy, participation, and informed choice. References Ahern, L., & E. Rosenthal. (2006). Hidden Suffering: Romania’s Segregation and Abuse of Infants and

Equal Access to Health Care Children with Disabilities. Washington, DC: Mental Disability Rights International. Online. Available: http://www.mdri.org/PDFs/reports/romaniaMay%209%20final_with%20photos.pdf Anand, S., & K. Hanson. (1997). Disability-adjusted life years: a critical review. Journal of Health and Economics 16:685–702. Anand, S., & K. Hanson. (2004). Disability adjusted life years: a critical review. In Public Health, Ethics, and Equity, eds. S. Anand, P. Fabienne, & A. Sen, pp. 183–200. New York: Oxford University Press. Bagenstos, S., & M. Schlanger. (2007). Hedonic damages, hedonic adaptation, and disability. Vanderbilt Law Review 60(3):745–798. Braddock, D.L., & S.L. Parish. (2001). An institutional history of disability. In Handbook of Disability Studies, eds. G.L. Albrecht, K.D. Seelman, & M. Bury, pp. 38–40. Thousand Oaks, CA: Sage Publications. Fries, K. (1997). Introduction. In Staring Back: The Disability Experience From the Inside Out, ed. K. Fries, pp. 6–7. New York: Plume. General Comment 14, 22nd Session. Committee on Economic, Social and Cultural Rights. 2000. U.N. Doc. E/C.12/2000/4 (August 11). Online. Available: http://www.unhchr.ch/tbs/doc.nsf/0/40d00990135 8b0e2c1256915005090be?Opendocument. Groce, N.E. (2004). HIV/AIDS and Disability: Capturing Hidden Voices. Washington, DC: World Bank Group/Yale School of Public Health. Online. Available: http://www-wds.worldbank.org/external/default/WDSContentServer/WDSP/IB/2005/1 1/14/000090341_20051114161514/Rendered/PDF /343130ENGLISH0Survey0HIVAIDS.pdf. Groce, N.E. (2005). HIV/AIDS and individuals with disability: findings from the World Bank/Yale Global Survey. Health and Human Rights 8(2):215–224. Groce, N.E., M. Chamie, & A. Me. (2000). Measuring the quality of life: rethinking the World Bank’s disability adjusted life years. Disability World 3(June/ July). Online. Available: http://www.disabilityworld.org/June-July2000/International/DALY. html. Groce, N.E., & R. Trasi. (2004). Rape of individuals with disability: AIDS and the folk belief of virgin cleansing. Lancet 363(9422):1663–1664. Liachowitz, C.H. (1988). Disability as a Social Construct: Legislative Roots. Philadelphia: University of Pennsylvania Press. Lord, J.E. (2004). Genocide, crimes against humanity and human rights abuses against people with disabilities. In Encyclopedia of Genocide and Crimes against Humanity, ed. D.L. Shelton. Macmillan Reference USA. Mental Disability Rights International. (2005). Behind Closed Doors: Human Rights Abuses in the Psychiatric Facilities, Orphanages, and Rehabilitation

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Centers in Turkey. Washington DC: Mental Disability Rights International. Online. Available: http://www.mdri.org/PDFs/reports/turkey % 20 final%209–26-05.pdf http://www.disabilityrightsintl. org/wordpress/wp-content/uploads/turkeyfinal-9-26-05.pdf Mental Disability Rights International. (2007). Ruined Lives: Segregation from Society in Argentina’s Psychiatric Asylums. Washington DC: Mental Disability Rights International. Online. Available: http://www.mdri.org/PDFs/reports/MDRI.ARG. ENG.NEW.pdf. http://www.disabilityrightsintl. org/wordpress/wp-content/uploads/MDRI.ARG_. ENG_.NEW-Argentina.pdf Mont, D. (2007). Measuring health and disability. Lancet 369(9573):1658–1663. Nussbaum, M. (2006). Frontiers of Justice: Disability, Nationality, Species Membership. Cambridge, MA: President and Fellows of Harvard College. OHCHR and UNAIDS. (2006). International Guidelines on HIV/AIDS and Human Rights: Consolidated Version 2006. Geneva: UNAIDS. Online. Available: http://data.unaids.org/Publications/IRC-pub07/ jc1252-internguidelines_en.pdf. Orentlicher, D. (1996). Destructuring disability: rationing of health care and unfair discrimination against the sick. Harvard Civil Rights-Civil Liberties Law Review 31(1):49–88. Silvers, A. (1998). Formal justice. In Disability, Difference, Discrimination: Perspectives on Justice in Bioethics and Public Policy, eds. A. Silvers, D.T. Wassermand, & M. Mahowald, pp. 13–146. Lanham, MD: Rowman and Littlefield Publishers, Inc. Silvers, A., & M.A. Stein. (2002). Disability, equal protection, and the Supreme Court: standing at the crossroads of progressive and retrogressive logic in constitutional classification. University of Michigan Journal of Law Reform 35(1):81–136. Stein, Mark S. (2006). Distributive Justice and Disability: Utilitarianism Against Egalitarianism. New Haven, CT: Yale University Press. Stein, Michael A. (2007). Disability human rights. California Law Review 95(1):75–121. Stein, M.A., C. McClain-Nhlapo, & J.E. Lord, (forthcoming). Disability rights, the MDGs and inclusive development. In Millennium Development Goals and Human Rights: Past, Present and Future, M. Langford et al., eds. Stein, M.A., & J.E. Lord. (2008). Jacobus TenBroek, participatory justice, and the UN Convention on the Rights of Persons with Disabilities. Texas Journal on Civil Liberties and Civil Rights 13(1): 167–186. Stein, M.A., & P.J. Stein. (2007). Beyond disability civil rights. Hastings Law Journal 58(6):1203–1240.

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Stein, M.A., P.J. Stein, D. Weiss, & R. Lang. (2009a). Health care and the UN Disability Rights Convention. Lancet 374(9704):1796–1797. Stein, M.A., P.J. Stein, & P. Blanck. (2009b). Disability. In Oxford Encyclopedia of Legal History, ed. S.N. Katz, Vol. 2, p. 334. New York: Oxford University Press. Sullivan, L.W. (1992). Oregon health plan is unfair to the disabled. New York Times, Sept. 1, A16.

UNAIDS, WHO, and OHCHR. (2009). Disability and HIV Policy Brief. April, 2009. Online. Available: http://data.unaids.org/pub/Manual/2009/jc1632_ pol_brief_disability_long_en.pdf. United Nations Convention on the Rights of Persons with Disabilities. (2006). General Assembly Resolution 61/106. U.N. Doc A/RES/61/106 (December 13). Online. Available: http://www. un.org/disabilities/default.asp?id=259.

PART III Populations

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20 Justice, Health, and the Price of Poverty* PAT R I C I A S M I T H

P

overty, health, and health care—or rather poverty, ill health, and lack of health care— are intimately connected. In this chapter I review some of the ways this is true and some major arguments about why or whether we should care. I first consider the issue of health itself, and whether a society is responsible for the conditions under which its members must live. Next, I look at the issue of health care, and whether a society has any obligation to provide it.

H E A LT H I N P OV E R T Y There is no question that poverty is a health hazard. For some time now it has been statistically verified beyond any doubt that the poor get sick more often, stay sick longer, and die younger than those who are better off. They are also at higher risk of accidents, and are exposed to worse environmental conditions than those with greater wealth.1 These facts, while well established, are also widely disregarded. For example, if one were to follow the extensive media coverage one might well assume that hypertension and heart disease are primarily afflictions of high-level executives in high-pressure positions. Statistics indicate otherwise: namely, the incidence of high blood pressure and heart attack increases as the level of wealth and power decrease. Similar patterns have been shown for many (although not all) other problems of health and physical well-being. Some researchers have concluded that social class or inequality itself is a powerful health factor.2 Without question, the farther you descend the economic ladder, the more likely you are to suffer from ill health. There is a troubling chicken-and-egg problem here, since poverty increases the risk of bad health and bad health increases the risk of poverty. Each aggravates the other condition, so it is impossible

to say (except in particular cases) which way the causal direction runs. Ill health was named as the leading cause of bankruptcy in recent years.3 Among the homeless, two thirds suffer from chronic illness or infectious disease and fully 57% from mental illness.4 Obviously those in ill health are less able to work, less able to work full time if they do manage to work part time, and less able to compete with healthy workers if they do manage to work full time. So, of course, they have more trouble paying the rent and other debts. One major flaw (or limitation) of the recent “welfare to work” reform movement has been the failure to acknowledge that a certain percentage of long-term welfare recipients have suffered from long-term poor health, and consequently make unattractive, indeed implausible job candidates.5 Badgering a 50-year-old, overweight grandmother with high blood pressure and arthritis to get out there and compete in the job market at minimum wage is not realistic, cost-effective, or humane, for it fails to take account of why she is where she is. Most people don’t have jobs for a reason, and the reason is often ill health.6 Thus, poor health often leads to poverty, especially among those (40 million or so working men and women) who were only marginally above the poverty level in the first place.7 That is to say, bad health is a leading cause of poverty. Looking from the other direction, poverty is a leading cause of bad health. The reasons are many, some more obvious than others. The poor tend to live in substandard housing, where walls may be damp, mold content high, sanitation poor, ventilation worse, and heating sporadic. They are exposed more often to smog, bad water, toxic environmental or hazardous work environments.8 It is poor children who suffer from exposure to

* This chapter has been reprinted from the first edition of Medicine and Social Justice (2002).

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lead paint, asbestos, and poor nutrition. The babies of poor mothers (teenage or otherwise) are more susceptible to low birth weight, leading in turn to further health and developmental problems.9 The incidence of asthma in poor children is five times that of their wealthier counterparts.10 While all this is deplorable, it is well established. What more recent studies have shown is the health toll taken by the mental drag of poverty (or class) itself. The rate of depression and stressrelated illness in poverty-stricken adults is much higher than it is in wealthier people, and the connection between stress or depression and other illness (ranging from heart disease and hypertension to susceptibility to virus and bacterial infection) previously thought unrelated is being increasingly demonstrated.11 The poor haven’t the resources to avoid or correct hazardous conditions or to treat illness and injury. All they can do is worry about illness or repress it, either of which is health impairing. As recent studies show, poor living conditions, dearth of resources, and constant worry and frustration at the lack of control over one’s life produce stress and depression that are strongly associated with health problems.12 Poverty makes people sick. I raise these points merely to show that health and health care issues are embedded in the larger distributive justice issue. Not only is health care unevenly distributed in this country, but health itself is unevenly distributed. Those who are most deprived of other basic goods—wealth, position, opportunity, security—are also most likely to be deprived of health as well. And conversely, those suffering ill health are also more likely to be deprived of other basic goods. This is not just a vicious circle, it is a vicious downward spiral. Of course, the very idea of distributive justice can be and has been challenged, so as a strategic matter connecting the specific issue of health care to larger issues of distributive justice could be considered a tactical error. It is likely that more people favor universal health care than the redistribution of wealth in general. In fact, most people in the U.S. do favor universal health care.13 (They just can’t agree on how to accomplish it.) Still, the strong connection between poverty and health has implications for reasonable judgments about eliminating poverty. If the causal connection runs from poverty to ill health, doesn’t that provide a strong reason for combating poverty? If we know that poverty is actually a health hazard, isn’t requiring some people to live in poverty rather like requiring them to live in a toxic environment?

It might be. Yet some respond that in a free country, no one is banned from rising out of poverty; therefore no one is required to live in it. But if we are talking about populations rather than individuals, then we do require a percentage of our fellow citizens to live in poverty just so long as a percentage of our jobs do not pay enough to allow the entire population to cross over the poverty line, and our government programs (such as food stamps, rent subsidies, or health care) are not adequate to make up for the shortfall. Thus, the very structure of our society itself condemns some of us to live in poverty and sickness. On the other hand, if the causal direction runs the other way—from ill health to poverty—how can we possibly square the existence of preventable poverty with the requirements of fairness? What excuse can we give ourselves for not eliminating it? In my view, we cannot reasonably say that the poor deserve to be poor if the reason they are so is that they are sick. This is true even if the sick are less productive (which they usually are.) Almost no one believes that sick persons are less worthy or deserving of a decent life because they are less productive. Consequently, whichever way the causal connection runs, the recognition of the connection itself between poverty and poor health provides a powerful reason for greater efforts to reduce poverty. Indeed, I want to suggest that taking steps to reduce poverty would be both more efficient and more fair than the current status quo. That it would be more efficient is obvious. Preventing conditions that make people sick in the first place is more efficient than providing them with health care after subjecting them to unhealthy conditions. This point merely takes the well-known arguments for the efficiency of preventive medicine just one logical step further. Of course, it could be argued that we have no obligation to provide health care to the sick at all, and if so the efficiency claim fails. But the fact is that we do not just let poor people die as a rule, nor could we stomach a public policy that openly advocated doing so. Consequently, sooner or later the impoverished sick wind up in emergency rooms across the country, and we all then pay dearly for health care delivered in the least efficient, least effective, and perhaps least humane manner we could possibly devise. Thus, preventive measures would clearly benefit all of us. The fairness claim raises more objections, but it does seem to me that knowingly subjecting some percentage of the population to a high risk

Justice, Health, and the Price of Poverty of bad health is unfair, at least if it can be avoided. It can be avoided if and only if all people have other options—that is to say, options that would enable all of them to avoid the most unhealthy conditions.14 Some years ago when I was a struggling assistant professor with two children to support, my son got work in a tobacco warehouse because it paid better than anything else available to him. That job scared me to death because although he wore a mask, he went to work with it white and came home with it black every day. We were lucky; he only worked there for a summer. But what do you suppose a job like that does to someone who stays on for 5 or 10 years or a lifetime? And who do you suppose would stay? Someone with no other options. Most of the people working in that warehouse are not kids on summer vacation, and are not on their way to somewhere else. This is as good as it gets for them, so they trade their lungs for money. It is not even very good money by middle-class standards, but it is good enough to be their best option. We call this a free country, and so it is on many measures. But if some people have no viable options, how free is that? If we still call it free, we cannot call it just; not in a nation that has so much to offer others. Workers across this country are not receiving just compensation for their contribution to the national product. More than 34 million people live in poverty today, and most of them work for a living.15 They are not receiving their fair share for what they do. If they did, we would go a long way toward eliminating poverty and many of the health problems it fosters. Of course, there are long and ongoing debates over how a fair share should be determined. Currently favored is apparently the market theory of value, according to which a commodity or service is worth no more and no less than the price it brings in an open market. There is much to be said for a market economy—it encourages and rewards creativity, initiative, energy, drive, freedom, and enterprise. It has a proven record of productive results. But not all its tendencies and effects are good. Even under an ideal interpretation it tends to disadvantage the poor, the weak, the vulnerable, and the sick. It feeds on vice, while penalizing altruism. And it makes selfishness the ultimate virtue. As the foundation for a theory of justice or morality, then, it leaves much to be desired. Consequently, it should be recognized that the

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market theory of value is not a theory of moral value. When economists substitute wealth maximization for utility (because the former is easier to calculate) they transform a moral theory into a non-moral (economic) theory.16 A market theory of value (along with supply-side economics) has produced our recent economic situation in the U.S., which on some measures (such as GNP) is better than it has ever been, but is also more polarized than it has ever been. One study (using figures corrected for inflation) showed that the lowest one-fifth of the nation now earns $900 (or 6%) less than it did in 1978. The second-lowest fifth dropped by 1%, while the middle fifth gained only 5% over 20 years. By contrast the average income of the top quintile increased by 33%, and the richest 5% of the population increased its income by 55%.17 For three fifths of the population wages have been stagnant or worse for 25 years, and although the average wage increased to $7.78 an hour in recent years (because of low unemployment), that wage is still considerably less than the average of $8.50 an hour in 1973.18 During this same time government benefit programs have been cut to their lowest levels since the 1970s.19 In fact, half of us are not doing as well as our parents, when an ordinary family could still live on one salary. Statistics again. Does any of this show that our economic system is unjust? Only if you think that there is such a thing as distributive justice. If you agree that this concept is meaningful, then you must agree that every member of society is entitled to some reasonable share of the economic pie. We may debate forever what that share should be, but current data are enough to give one pause. For at least the past 15 years 20% of the population controlled 80% of the wealth while 80% of the population shared the other 20%. In 1997, 5% of our households controlled 21.7% of our income while the bottom 20%—one fifth of our population—eked out a miserable 3.6%.20 And we now also know that those at the bottom suffer proportionally worse health than those who are better off. By allowing inequality to increase we allow ill health to grow. Whatever our concept of distributive justice might be, it surely cannot be that.

H E A LT H C A R E A N D J U S T I C E Assuming that we will not adjust our wage and tax structure to correct these grave imbalances any time soon, should at least health care be a universal benefit? In many societies it is assumed that access to basic health care should not depend on

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the ability to pay. In fact all industrialized nations (except the U.S.) have instituted universal health care systems of one sort or another to guarantee basic medical care to all. But the commitment to equal access without regard to wealth can be disputed. “Why is this principle appropriate for health care when it has been rejected for vacation homes and fast cars?” legal scholar Richard Epstein asked provocatively in his recent book.21 According to Epstein health care is a commodity to be distributed like any other in an open market; and he offers a systematic set of arguments against universal access by government provision. Relying on the common law tradition that limits collective responsibility for individual well-being, he argues first that there is not and cannot be a universal positive right to health care, and secondly that in the long run an unregulated, free market in health care will provide greater access to quality care for more people. Thus, the two issues he isolates are justice and efficiency. Given limitations of space and the focus of this volume I will consider only the issue of justice. Rather than becoming entangled in the possibility of positive rights I will look directly at the question of collective responsibility.22 Epstein admits that his position denying a collective responsibility for health care is a minority view. Most people do think that there is such a collective (or governmental) responsibility—that a society should provide its members with equal access to basic health care.23 Yet the question is one of justification. Epstein effectively demonstrates that the common law provides no basis for a collective (legal) responsibility to aid strangers, but then, it would be surprising if anyone thought it did. The ground for collective responsibility is legislative. Yet the bounds of legislative legitimacy can always be questioned. So the issue remains: what justifies recognizing a collective responsibility to provide health care for all? Numerous arguments have been offered, but most philosophers and advocates have focused on health care (or health) as a basic need or primary good. Like food or freedom, the loss of health seems to impair all other values. So it would seem that basic health care is necessary to the enjoyment of our other rights: life, liberty, and the pursuit of happiness, for example.24 Epstein, while acknowledging that health care is indeed a very basic need, argues that mere need in itself has never been sufficient to generate a responsibility on the part of one individual to

provide for another—certainly not in U.S. common law.25 It should be recognized, however, that the claim at issue here is not that need generates a (legal) responsibility for any particular individual to aid any other particular individual. Rather, it is that basic need may generate a collective responsibility for all (who are able) to contribute to a common fund that ensures (at least some) basic necessities for all. That is not the same kind of claim. The latter may entail only that legislative action that creates common obligations for the common good is legitimate. To deny that claim in general is to deny the foundations of democratic government. So the denial would have to be more specific, such as: Funding for health care (or schools, or roads, or whatever) is not a common obligation or a legitimate legislative objective for reason X,Y, or Z.26 Indeed, no one supposes that there is a social responsibility to provide everything that anyone needs. So again, the question remains: what makes health care in particular a common responsibility? Consider the nature of some other basic needs: national security, clean air, and perhaps clean water are known as public goods.27 No one can have them unless everyone has them. If they are necessities, they must be provided for all. Health care is obviously not a public good, then, except for the prevention of highly contagious diseases (such as smallpox or diphtheria). Prevention of epidemics is arguably a public good, but other than that, health care can easily be provided for some and not for others. There is nothing indivisible about it, so it is not in general a public good. Consider another sort of basic need: food, clothing, shelter, some means of income. These are certainly basic needs that are just as important as health care. People die or are seriously impaired without them. We might call them constant needs. All people need them all the time in order to function in ordinary life. It is currently thought that the best way to provide for these needs is to develop a society that enables all to participate in the economic system in such a way that each can provide for him- or herself by ordinary exchange of goods and services.28 By contrast, medical care is not something that most people need all the time. It is usually an abnormal need, rather like fire or police protection, an uncommon need, but one that is of vital importance when it arises. We might call this a need for special risk insurance. Also like fire and

Justice, Health, and the Price of Poverty police protection, health care may be extremely expensive, so that sharing the cost and pooling the risk seem to make sense. Finally, it requires special expertise and equipment to handle medical problems. Like fire and police protection, it is a service not just anyone can provide. Of course, the analogy is far from perfect. Some people have chronic disorders with daily costs; most people have sporadic ailments with occasional costs; and all people need preventive health maintenance that generates some regular costs.29 Even so, it is the emergency aspect and potential catastrophic cost of medical need that sets it apart from constant normal needs like food and shelter. Is that enough to make it a basic need that should be provided for all? Is it enough to generate a collective responsibility? I think it is. It certainly is enough to make it a focus of common concern. As is widely recognized, any one of us could be struck without warning by a sudden, severe, urgent medical need that is costly enough to bankrupt even the wealthy, and is far beyond the reach of most. The obvious way to handle a problem of this sort is by pooling resources. That would be practical and efficient. Furthermore, the only way to prepare for medical needs in the long run is by means of very expensive research and training that would be completely out of reach for any single individual. Public funding has always been crucial to the development of these resources. Consequently, it is reasonable to think of them as common assets to be shared by all in need. Yet Epstein denies any collective responsibility for individual health care. He would presumably distinguish police and fire protection from medical care by claiming that the former are inefficient to provide privately and in that sense are somewhat akin to public goods (like clean air or national defense). Medical care, he would argue, is more like food or housing: best supplied by private enterprise. Thus, he might conclude, the comparison to quasi-public goods is inappropriate since medical care and medical insurance can be and have been supplied by individual participants in a competitive market. Since it is possible and efficient to supply these goods in an open market, any other mode of distribution unnecessarily restricts the freedom and rights of individuals to run their own lives and make their own choices. The objection to this line of argument on the basis of justice is that the market would not distribute health care efficiently to all members of

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society, but at best only to those who can pay. A competitive market, by its nature, tends to exclude the poor. There is no reason to think it would function differently in this case.30 In fact, the analogy to food and shelter provides some interesting points worth noting. The U.S. and all other societies that can afford it do, actually, recognize a collective responsibility to provide food and shelter for those who are so unfortunate as to lack even these basic necessities. We have publicly funded homeless shelters, housing subsidies, food stamps, welfare programs, social security, etc. So, despite the usual distribution of food and shelter by market forces, the fact that we recognize them as basic necessities is reflected in supplementary programs to provide for them where the market fails. Consequently, to treat health care as analogous to food or shelter we would need to supplement market distribution wherever it failed. In fact, the general attitude underlying this conclusion leads to more or less the system we currently have: a private system supplemented by governmental programs and incentives designed or intended to extend coverage to those who would otherwise be excluded. It also explains complaints about the inadequacy of this system. If there were no presumption that everyone should be covered, then there would be no complaint about the failure to do it. All this suggests a general recognition of a social responsibility to provide the most basic necessities to all. Epstein objects vigorously to this idea. Instead, he argues that those who cannot pay are best served by charity. (Presumably he would argue the same with regard to food and shelter.) Is anything wrong with the capitalism-plus-charity model? Charity in itself is a very good thing, but as a model for supplying basic necessities it has several drawbacks, especially as applied to medical needs. I cannot pursue this matter comprehensively here, but I will discuss three major considerations. The most fundamental issue raised is what the proper attitude should be about basic necessities: is there a social responsibility to see to it that all members of society are able to receive the most basic necessities of life, or is this a matter of good fortune and grace—the benevolence of one’s family or neighbors, the good luck of fortunate birth? If there is no social responsibility, it means that justice requires no particular minimum on the distribution of social burdens and benefits, and charity for the downtrodden is the view that seems to follow.

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My own view is that society is a collective enterprise; all inhabitants are members and participants, each one significant in her own right. Some may contribute more than others and some may benefit more than others. That is inevitable. But the point of living in a society rather than existing in isolation is that human beings do better by cooperating than any can do alone. Everyone benefits and everyone owes a return on that benefit. Consequently, I believe that distributive justice does apply to such groups, and therefore that each member is responsible to contribute to a common fund that ensures basic necessities to every member. If that is a better view of society, then charity is not enough as applied to necessities.31 A further issue, one that is specific to medical care is that it is potentially so expensive that many people (especially those who need it most) will not be able to afford it, and there is no way to tell with certainty which person will need it. Consequently, unlike food or shelter, which can generally be planned for, predicted, and pretty easily provided for by most people at a basic level, any one of us might confront catastrophic medical costs that almost none of us could meet without an insurance plan. Theoretically, one could go off into the wilderness and build a home and grow food, but you can’t provide your own medicine (except at a very primitive level). Similarly, within a society, acceptable low-cost versions of food and shelter are generally available for most people. Those who are able to spend more receive more luxurious versions. But the cost of medicine has almost nothing to do with luxury. There is no lowcost version if you need heart surgery or cancer treatment. And from the point of view of health, the most expensive treatment may be as much a necessity as the least expensive. Cost does not track luxury in medicine. It is this realization that creates the need for insurance. Consequently, provision of medical care is essentially social; almost no one can have it without being in the pool. To exclude some people from the pool is like denying them police or fire protection. It is to require some people to bear their own risks alone when others have the benefit of sharing assets. Finally, good health is a social benefit and ill health is a social drain. Those who are sick are not productive. In this sense (universal) health care is like (universal) education. The better off each individual is, the better off society as a whole is, because each individual can contribute more to society if healthy and well educated rather than the reverse.

Are these views of society unusual or idiosyncratic? I believe that they are very widely accepted, although perhaps grudgingly, and with qualifications in some quarters. The fact that they are widely accepted is reflected in the supplementary programs I mentioned earlier. Very few Americans think any of their fellow citizens should have to beg for food or sleep on the streets; much less should anyone have to beg for medical treatment. But that is what charity means: it is to rely on the good grace of someone to give you that to which you are not entitled. Perhaps, then, the issue of positive rights is not avoidable. Let me just say this for the present. There are two ways to address the issue of rights in this context: (1) Is there a right to health care? and (2) Is there a right not to be taxed for the purpose of providing universal health care? I have been arguing indirectly in favor of (1) by arguing that there is a social responsibility to provide basic necessities for all, and that health care is a basic necessity. If there is such a responsibility, then there is also a right correlative to it. But (1) is a very strong and controversial claim; not everyone will agree with the position laid out here. What can be said to those who remain unpersuaded? Given general attitudes about health care, there is a sense in which it is not necessary to argue for (1) because under the circumstances denying (2) may be sufficient, and denying (2) involves a much weaker claim. Question (2) shifts the burden of persuasion. It asks whether, in the face of majority agreement, there is some reason why health care in particular should be excluded from the democratic process as a matter of justice. Is it like free speech or the exercise of religion that should be protected for each individual from majority rule? Hardly. From all appearances, it is a mainstream legislative issue regarding the allocation of resources, exactly the kind of thing that a legislature is supposed to handle for the benefit of the people at large. So, shifting the burden of persuasion back to Epstein, what reason can there be for restricting this issue in particular from the democratic process? Presumably, there is none. The only possible argument against a (legislatively or self-imposed) collective responsibility for universal health care (or a correlative right to it) on the basis of a claim of justice is the general position that the redistribution of wealth is unjust in itself.32 Of course, that takes us back to the general redistribution issue, well known, long debated, and discussed

Justice, Health, and the Price of Poverty here as well as in the previous section. I cannot pursue it further at this point, but the general obligation to support the common good has been assumed or defended by great philosophers from Aristotle to Rawls. If their efforts have not been conclusive, neither have the arguments of those who seek to deny collective responsibility. Unless it can be shown that redistribution of wealth is unjust in any form whatsoever, there is no reason to find it so in the case of health care in particular. Why not? To summarize my previous arguments, first, health care is a basic necessity and no one in a reasonably successful and minimally just society should be deprived of basic necessities. Second, even if the first point is not accepted as applicable to all basic necessities, health care is potentially so costly to random individuals that pooling resources is the only secure way to provide it, and there is no justifiable reason to exclude some people from the pool. Such exclusion is unjustified because doing so requires some, specifically those who can least afford it, to face alone a risk that has been effectively socialized otherwise. This is like basing police or fire protection on the ability to pay. Third, even if some people do not agree with the previous two points, given that a majority of people in this country accept them, it is more cost-effective and more fair to provide universal access to health care without regard to ability to pay. It is more cost-effective, first, because preventive medicine is more cost-effective than emergency treatment or intensive care, and second, because a healthy population (like an educated one) is much more productive than the opposite. So, general good health is a common benefit. It is more fair because if we rely on private charity alone to provide this common benefit, only some will contribute, allowing others to free-ride on the charitable impulses of their fellow citizens. While Epstein has shown that there is no common-law basis for a responsibility to provide health care to all, he certainly has not shown (nor could anyone show without undermining the foundations of democracy) that there is any legal basis whatever to deny that a democratically elected legislature is lawfully empowered to create such a collective responsibility on behalf of the people for the common interest. Furthermore, if the arguments just given are correct, a responsible legislature should do so. It follows that health care should not be denied on the basis of poverty (or, in other words,

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allocated on the basis of ability to pay) assuming that it is not in the common interest to do so. Is that a reasonable assumption? This is, admittedly, a question of efficiency that I cannot address here, but let me conclude this paper with a few suggestive words.

SOME CONCLUSIONS ABOUT JUSTICE AND EFFICIENCY The U.S. remains the only major industrialized nation not to offer universal health care to its citizens, even though it spends more on health care than any other nation in the world. Despite its expenditures, the U.S. is ranked 54th out of 191 countries by the World Health Organization. Our infant mortality rate and rate of low birth weight is no better than that of some Third World countries.33 One cannot help but notice that this is not exactly Pareto optimal. Fully 42.6 million people or 15.5% of the population was uninsured in 1999, and the rate of coverage was directly related to wealth. More that one fifth of our poor children and almost one half of all poor people were uninsured. Nearly half of our working poor were without insurance in 1999. This also correlated with race: one third of Hispanics and one fifth of Blacks and Asians were without coverage, while only 11% of (non-Hispanic) White people were without insurance.34 A recent report by Consumers Union found that the uninsured receive second-class care, if any, depending on where they live (better to live in Minnesota than Texas, for example), what health problems they have (better to have a contagious disease than a degenerative one), and how much money they can pay up front. For example, there may be money to diagnose a disease, but no money to treat it: money for mammograms but none for breast cancer, money for a free clinic visit but not for prescription medicine.35 The efficiency of laying out money to diagnose diseases that will not be treated has to be pretty questionable. Diagnosis without treatment is not prevention; it is just wasted (and stress-producing) information. Not only is it inefficient but also inhumane and unjust, and given the current system it can only be expected to get worse. Private insurance and HMOs have financial incentives to insure the healthy and avoid the sick, and/or to cut benefits in order to cut costs. The sick and the poor (especially racial minorities), those with the fewest resources, are the least likely to be insured, and those who are poor and uninsured are the least likely to receive care and the most likely to need it.

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Epstein suggests that this situation is best handled by charity, but nothing prevented it from being handled by charity today, or last week, or last year or 10 years ago, or in 1997 when Epstein wrote his book. There is no law against charity, nor any tax disincentive, nor moral disapproval. We have no reason to think that if medicine were more rather than less privatized, charity would increase. But we might well wonder whether a capitalistic economy that relies on pervasive mass marketing to promote material consumption, competition, envy, and greed is really an environment that is most likely to foster an attitude of charity.36 Not everything is best viewed as simply a commodity like any other. Health care is not like a vacation home or a luxury car. The world is not simply a market, nor are human beings nothing but consumers. We love and hate; we suffer and die; we care and struggle; and none of that is best represented as buying and selling. The attempt to capture human life in a single metaphor is inevitably deficient and sometimes dangerous, but always an intellectual lure. In the 18th century the universe was a clock. Newtonian physics was all the rage, and the world and humanity were expected soon to be deciphered with clock-like precision. There were both benefits and costs to this picture of reality, and the same is true of our 20th-century vision of the “world as a market.” One of the greatest costs may well be its comprehensive application to medicine. Is the ideology of the market compatible with the Hippocratic oath, or the ancient tradition of unselfish concern for human health? This is not to say that doctors should be saints or that medical technology is evil if profitable, but the sole pursuit of profit cannot be the foundation of medicine. Perhaps it is worth noting that our two top pharmaceutical companies earned an average net profit of 229% in recent years, while raising prices so high as to cause even the wealthy to blink.37 This is capitalism par excellence, but where is there any commitment to health left in this scenario or others like it? The trouble is that medicine is not and cannot ever be a truly open market. Sick people are so vulnerable that to follow the capitalist maxim to charge the highest price the market will bear is inevitably extortion. Consequently, the natural limits of the market will never be fully operative in the medical context, and we end with a system both inefficient and unjust. To base health care on the ability to pay and to deny that sick people are equally entitled to care is

to deny a piece of our common humanity and to erode one of the few traditions we got right for several thousand years. Medicine should be dedicated to health without qualification, and that includes the qualification of poverty.

Notes 1. See, e.g., Wilkerson. (1996). Unhealthy Societies. New York: Routledge; or “In health it helps to be rich and important,” New York Times, June 1, 1999, p. F9. 2. See id; or, e.g., Hadley & Osei. (1982). Does income affect mortality? Medicare Care 20:901. 3. See, e.g., Reinhardt, U. (1999). Employer-based health insurance: a balance sheet. Health Affairs 18(6). 4. See Bernstein. (1999). Deep poverty and illness found among homeless. New York Times Dec. 8, 1999, citing HUD surveys 1995–96. 5. See DeParle. (1999). Project to rescue needy hits persistence of poverty. New York Times May 12, 1999, reporting on Milwaukee Project New Hope; or DeParle. (1998). What welfare to work really means. New York Times Magazine Dec. 20, 1998, p. 50ff. See also Solow. (1998). Work and Welfare. Princeton, NJ: University Press. 6. Of course, I am not suggesting that ill health is the only reason for unemployment; yet it is a major contributing factor that remains underestimated. 7. Center on Budget and Policy Priorities. (1999). Analysis of Census Bureau Income and Poverty Report, Oct. 4, 1999; http://www.cbpp.org/9–30-99pov.htm 8. The hazards of slum living and the deficiencies of substandard housing are well known. See, e.g., Carson. (1988). Rachel and Her Children. New York: Routledge; or Wilson. (1987). The Truly Disadvantaged. Chicago: University of Chicago Press. 9. See, e.g., New Jersey Star-Ledger Aug. 16, 2000; Wilkerson, note 1 supra; Sewell, Price, & Karp. (1993). The ecology of poverty, undernutrition and learning failure. In Malnourished Children, ed. Karp. New York: Springer; or Smeeding & Torrey. (1988). Poor children in rich countries. Science 242:873–77. 10. See, e.g., New York Times, March 23, 2000, p. B1; or Leivick. (Fall 2000). Helping children and their families breathe easier. In Folio. New York: Graduate Center, CUNY. 11. See references in note 1 supra. 12. See, e.g., Wilkerson, note 1, supra; or New York Times, Jan. 14, 1997, p. C1; or Vockovic. (2000). Selfcare among the uninsured: ‘you do what you can do.’ Health Affairs, July/Aug., pp. 197–201. 13. Providing universal health care has been a major issue in the U.S. at least since the 1992 election, when Clinton made it his campaign centerpiece. Since his election numerous polls have shown that at least a majority of Americans favor universal health care, but reaching agreement on how to provide it is another matter.

Justice, Health, and the Price of Poverty 14. Of course, some people still would not function well enough to stay out of poverty. I am not suggesting that utopia is possible, but only that reasonable social structures would not condemn over a tenth of our population, millions of people, to live in or near poverty. 15. One half of the working poor are uninsured, along with their dependents. See, e.g., New York Times, Sept. 29, 2000, p. A16. 16. This move is accepted common practice among many economists. See, e.g., Posner. (1992). Economic Analysis of Law (3rd ed.) Chicago: West; or Epstein. (1999). Mortal Peril: Our Inalienable Right to Health Care? Cambridge, MA: Perseus. 17. New Jersey Star-Ledger May 16, 1999, sec. 3, p. 1, 3, citing Census Bureau figures. New York Times Jan. 19, 2000, p. B5 on stagnant wages. 18. See Callahan. (1998). False Hopes. New Brunswick, NJ: Rutgers University Press, p. 177; also Kolahan & Kim. (2000). Why does the number of uninsured Americans continue to grow? Health Affairs 19(4):188–196, at 190; also Phillips. (1990). The Politics of Rich and Poor. New York: Random House, p. 88. 19. See, e.g., New York Times Feb. 21, 1999, p. A1; June 3, 1999, p. A22; April 21, 2000, p. A1; or Kolahan & Kim, note 18 supra. 20. New Jersey Star-Ledger, May 16, 1999, sec. 3, p. 3. 21. Epstein, note 16 supra, at p. 112. 22. On the possibility of positive rights see my Liberalism and Affirmative Obligation. New York: Oxford University Press, 1998; or Shue. (1980/1996). Basic Rights. Princeton, NJ: Princeton University Press; or Wellman, C. (1996). Welfare Rights. New York: Oxford University Press, among others. 23. In this context the notion of collective responsibility means governmental responsibility, although this is not always the case. See, e.g., May. (1986). The Morality of Groups. Notre Dame University Press; or French. (1984). Collective and Corporate Responsibility. New York: Columbia University Press, on group responsibility. 24. See Rawls, J. (1971). A Theory of Justice. Cambridge, MA: Harvard University Press, on primary goods. 25. See Epstein, supra note 16, at p. 243. 26. Libertarians, like Epstein, respond that the only legitimate legislative goals are the protection of negative rights, which must be universalized to be effective, and create no extravagant costs by being universal. While in the abstract this argument is conceptually defensible, in practice it will not do. In practice negative rights must be enforced and protected, which generates huge social costs and requires extensive social institutions at least as complex as any needed to supply

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positive rights. The U.S. currently spends much more on our national defense and federal court system (to protect negative rights) than anyone proposes to spend on positive rights of any sort, including health care. See Shue, supra note 22. 27. Water is controversial as a public good since it can be bottled and shipped in for the wealthy. Still, protecting pure water sources is arguably a public good. In any case, it is not necessary to refine the notion of a public good, for I will not argue that health care falls in that category. 28. This is not the only possibility, of course. A society, especially a small one, could be much more communally organized, among other things. 29. This could still be analogized to people who live in higher- and lower-risk areas, or engage in higherrisk activities, and thus need more fire or police protection. Banks and forests, for example, could be characterized as existing in states of chronic risk, thus preserving the analogy. I am not sure it is particularly helpful, however. 30. See Buchanan, A. (1995). Privatization and just health care. Bioethics 9:220–239, or Buchanan, A. (1985). Ethics, Efficiency and the Market. Totowa, NJ: Rowman and Allenheld. 31. I argue this view at length in Liberalism and Affirmative Obligation, note 20; see especially chs. 8 and 9. 32. This is exactly the position Epstein in fact takes; namely that there are no positive rights, and so no positive right to health care. 33. See “Report disparages health care for poor. New Jersey Star Ledger Aug. 11, 2000, p. 44. 34. “Number of insured Americans up for first time since ’87.” New York Times Sept. 29, 2000, p. A16. 35. New Jersey Star-Ledger, note 33 supra; see also Spillman. (July/Aug. 2000). Adults without health insurance: do state policies matter? Health Affairs 19(4). 36. Interestingly, Epstein notes (his informal impression that) charitable provision of health care has declined since the 1940s and 1950s. He attributes that decline to the rise of governmental programs, but why suppose that? The impulse for profit is encouraged much more by capitalism than by social programs. And if professional charity were so effective in the 1950s, why were social programs thought necessary? The real danger is the attitude encouraged by thinking of medicine as a business rather than a profession or even a calling. 37. See Value Line Investment Survey, Edition 8, April 28, 2000, pp. 1264, 1271; see also www.valueline.com

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21 Racial Groups, Distrust, and the Distribution of Health Care H OWA R D M c G A RY

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hilosophers have divided the study of ethics into three branches: descriptive ethics, metaethics, and normative ethics. People who do descriptive ethics are interested in providing a correct description of the ethical norms and values in a given society. However, there is no attempt to analyze or evaluate these norms and values. Philosophers doing meta-ethics analyze or explain the meaning of ethical concepts. They analyze words like right, wrong, good, bad, and ought. And they attempt to explain how or if ethics differs from other human endeavors like art, mathematics, and science. Philosophers who do meta-ethics attempt to give us insight into the nature of moral reasoning. Philosophers who do normative ethics attempt to justify principles that can be used to make judgments about what is actually right or wrong, good or bad, and morally obligatory. Applied ethics is located within this branch of ethical inquiry. People doing applied ethics attempt to directly apply the results of their normative inquiries to specific questions in various professions. Or they use a process of reflective equilibrium to go back and forth between their intuitions about what is moral and the accepted standards in the given professions. In the past 30 years, some professional philosophers have trained their critical gazes on a host of ethical issues and problems in a variety of professions. These professions include business, education, journalism, the law, medicine, the military, politics, and science. Their goal is to help these professionals come to careful conclusions about their ethical responsibilities. A profession that has received a great deal of attention by philosophers is medicine. The issues range from abortion to euthanasia and from genetic engineering to debates over what counts

as morally appropriate systems for the delivery of health care. There is some controversy about how effective philosophers or ethicists can be in altering the attitude and behaviors of medical professionals. Some critics question whether there is any real impact when it comes to medical practice. In this essay I shall examine an important but neglected topic in medical ethics. In an article in the Mount Sinai Journal of Medicine, I argued that the medical distrust that African-Americans exhibit towards the health care system is not unreasonable and that addressing this distrust is a matter of social justice (McGary 1999). Nonetheless, physicians are reluctant to address this distrust in their medical practice. Thus, the primary aim of this essay will be to argue that medicine should address African-American distrust. Before I address this issue, however, I shall present my reasons for thinking that AfricanAmerican distrust of the health care system is real and also a matter of social justice.

D I S T RU S T A N D T H E DEMANDS OF JUSTICE In the United States, health care, along with food and housing, is considered to be a primary good (Rawls 1971, p. 62). According to John Rawls, one of the leading political philosophers of the 20th century, primary goods are things that every rational person is presumed to want (1971, pp. 90–95). These goods have value to a rational person no matter what his plan of life might be. Rawls goes on to argue in his important books A Theory of Justice (1971) and Political Liberalism (1992) that these goods are subject to the constraints of justice and they have a bearing on a rational person’s self-concept. The cornerstone of Rawls’s account of social justice is his belief that the least-advantaged members of society, as

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measured by their possession of the primary goods, should be the gauge by which we judge the justness of the basic structure of society (1971, pp. 76–80). Given Rawls’s focus on the least-advantaged members of society, he endorses taxing those who are better off in order to make the leastadvantaged better off than they would be under any alternative arrangement. However, Rawls’s critics from the political right contend that egalitarian/welfarist conceptions of justice violate the individual’s right to liberty (Nozick 1974, Chapter 7). His critics on the left claim that his commitment to equality is not strong enough (Nielsen 1985). They argue that the needs of many, especially the poor, will always go wanting under capitalism. As we can see, there are various ways of conceptualizing the demands of justice. Studies have shown that many African-Americans distrust the health care system (Baker 1999). Does this distrust raise specific issues of social justice or should it be viewed as an instance where people are unreasonably failing to take advantage of existing opportunities? In what follows, I argue that the response to this distrust is an issue of social justice and that the state does have an obligation to eliminate or mitigate this distrust. This chapter will not explore the more general question about what is the correct account of distributive justice. Instead, I shall address the ways race should or should not affect the delivery of health care benefits in a system that is just. Scholars who have been concerned with the justice of health care delivery have asked some pertinent questions. These important questions include the following: What is the nature of a right to health care? Who has the responsibility for financing health care? What should be the priorities in the allocation of health care resources (Mappes & Zembaty 1981)? These questions are all difficult and important questions. How we answer them will have a direct bearing on the quality of our lives. This is true in a racially homogenous society, but they become even more complex in a racially heterogeneous society with a long history of racial oppression. No matter which account of distributive justice we embrace, when we say that an institution or practice is unjust we believe that this fact gives us a compelling reason for altering or abandoning it. Since justice is considered to be the first virtue of social institutions, injustice demands action. The action can, and often does, demand

state intervention. In capitalist societies like the United States with a constitution that vests rights in individuals and gives great weight to individual liberty, the right is separated from the good. Individuals are allowed to pursue their own conceptions of the good provided they respect the rights of others. There is a widespread view that justice demands that we respect the rights of individuals. This is true whether we interpret rights in consequentialist or deontological terms (Sen 1988). On both accounts, injustice or rights violations provide us with a strong motive for change, a reason for feeling sympathetic to the victims of injustice, and a basis for claiming that the victims deserve to be compensated for violations of their rights.

T H E R E L E VA N C E O F R A C E I N T H E D E L I V E RY O F H E A LT H C A R E Discussions about what should be done in the aftermath of slavery and a system of legal racial discrimination has invoked strong reactions. Some people argue that state-sanctioned racism is a thing of the past, and that racial minorities should forget about the past and work to take full advantage of present opportunities (Steele 1990). Others argue that the vestiges of a system of legal discrimination still exist and racial minorities will not be able to develop their skills and reach their full potential until society takes steps to break down the barriers that have been erected by a long history of racism (West 1992). Scholars have also pointed to the racial disparities that specifically exist in the delivery of health care (Cone et al. 2003, Williams & Mohammed, 2009). The position that one takes in this debate will bear directly on where one stands regarding the relevance of race in the distribution of health care. For those who think we ought to put the past behind us, it is hard to imagine why a person’s race should be seen as morally and socially relevant in the delivery of health care. For people who view things in terms of a current time-slice, our horrible racial history does not justify giving health care resources in order to remedy past racial discrimination. In this postmodern age, some scholars have argued that we need to totally rethink the whole concept of race. For them it is wrong to think of races as natural kinds or as groups that can be defined in biological and genetic terms. Some of these commentators even conclude that racial classifications are fictional entities that cause more

Racial Groups, Distrust, and the Distribution of Health Care harm than good in our legal, moral, and social deliberations. They believe that we would be better served by doing away with the concept of race altogether. We cannot make race relevant without engaging in unjust discrimination or racism. On their view, a just society must be completely blind to race. But is it overly optimistic to think that a society can achieve a just distribution of health care benefits without recognizing people as members of racial groups? Some scholars have maintained that race is a meaningless concept that should not have any significance (Soo-Jin et al. 2001). They believe that as long as we give it significance (no matter how pure our motives) this will only encourage and sustain racist ways of thinking. According to these authors, eliminating documented health disparities found within the U.S. population is a laudable goal, but they warn us that we face the following dilemma when we use race to try and understand the sources of these disparities (2001, p. 33). Either health disparities are the result of unequal distribution of resources or they are the result of inherited characteristics of individuals defined as ethnically or racially different (2001, p. 34). The authors warn us that how we conceptualize race when we address this dilemma will have serious moral consequences and argue against the use of the concept of race as a legitimate scientific variable. These researchers are reluctant to associate particular diseases with so-called “racial groups.” Because they conceptualize race as a social rather than a biological kind, they believe that we encounter conceptual and moral problems by trying to locate identity in genes. They reject naïve genetic determinism that reinforces the belief that discrete human races exist and directs attention away from the complex environmental, political, and social factors that contribute to an inequitable distribution of illness. Some scholars who deny that races are natural biological kinds go on to claim that races are social constructions that do have a reality. For them, this reality should be taken into account in moral, legal, and social discussions. Those who think that our history of racism has had an impact on present health care believe that this society must address past racial injustices as a matter of social justice. They believe the present situation of difference in life expectancy and differences in medical treatment that are correlated with race are clear consequences of past racist practices that were in many instances condoned by the state.

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For these people, race-based compensatory health care programs may be necessary to bring about social justice. The long period of American chattel slavery, Jim Crow segregation, and the use of AfricanAmericans in morally questionable medical research marks off the experiences of AfricanAmericans in unique ways from other groups. This history is the primary reason why people who are concerned about the justness of health care believe that we cannot create a just health care system without taking into account the unique history of African-Americans. There is also a third group that, like the second group, believes a just society must acknowledge race, but it does not have to compensate the descendants of members of racially oppressed groups. According to their view, the good or just society has good forward-looking reasons for taking the steps necessary to make society more egalitarian and open to all. These people are not concerned about identifying wrongdoers and providing compensation to those who have been wronged. They believe that there are good consequentialist reasons for providing additional resources to persons in certain racial groups (Wasserstrom 1980). Even if we could show that race is irrelevant in our personal private relations, it would be hasty to assume that this is also true about public relations. Having said this, many people are still reluctant to conclude that a person’s race should matter when it comes to the distribution of health care benefits. When asked to reflect on how health care should be distributed, most people claim that medical need should be the primary consideration—although, after further consideration, they will usually conclude that things like the ability to pay might also be a relevant factor. If medical need and ability to pay are relevant considerations in the delivery of health care, then one might think that a person’s race is relevant because it has an important bearing on who is medically needy and who can afford to pay for medical services. People who argue in this way usually point to the general disparities of health and wealth that exist in American society between African-Americans and whites to argue that race is relevant (Baker 1999, pp. 212–217). They produce evidence to show that these disparities are widespread and are especially prevalent in medicine. But even with this said, some people are still reluctant to use race as a characteristic because of the history of how racial identities have been used

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in the United States to subjugate members of certain groups. There is a long history in the United States of picking people out by skin coloring for unequal treatment (Baker 1999, pp. 217– 221). African-Americans have been the prime victims of unjust color or racial discrimination. This discrimination was once so pervasive that it was (and some would say still is) an integral component in the design of American institutions. But will we ever be able to put racism behind us if we do not give moral and legal significance to races?

ADDRES SING AFRICANA M E R I C A N D I S T RU S T Let us turn to the issue of African-American distrust of the health care system. Is this distrust rationally grounded? And if the distrust is unreasonable, does this mean that a just society is under no obligation to address it? Let me begin with the second question. The mere fact that many African-Americans distrust the health care system does not mean that the system is unfair to them. Nor does it directly follow that the system ought to be altered or abandoned. It depends upon why they distrust the system. If the distrust is based upon misconceptions, then one may initially think there is no need to change the system. But this initial reaction may be mistaken. Just because a system is fair does not mean that it can be readily be seen as such. A part of what we mean by a good health care system is that it perceived so by those who use it. This is one reason why systems analysts are concerned to produce systems that are simple and readily accessible to the general public. Being a fair system may not be good enough; it may also be necessary for the system to be viewed by the general public as fair. To be responsible to the needs of the entire community, health care systems may have an obligation to address even the erroneous perceptions of the system by African-Americans. Even if the system is just, and the distrust is not well founded, the long and troubled relationship between African-Americans and various components of the health care system may explain the distrust, if not justify it. Given our history, perhaps an equitable health care system should be willing to make reasonable efforts to dispel feelings of distrust. As Aristotle said, the equitable person is not a stickler for justice, especially when doing so does not serve the wider demands of morality (Aristotle 1987).

But what should count as reasonable efforts in such a situation? In my view, two factors would have to be considered. One important factor is how much this distrust affects the delivery of quality health care to African-Americans. Another important factor is the extent that the costs associated with eliminating this unfounded distrust divert funds from medical concerns that may be more pressing. An equitable health care system must be willing to address these factors in a candid and public way. Doing so will make it clear to all involved that the system is concerned about the interests of the whole community, and that it is sensitive to the historical context that gives rise to this distrust. From a moral point of view, why should a just society cater to the false perceptions of a large segment of the African-American population? One might argue that an action that is not in itself immoral can be described as morally faulty if it closely resembles an immoral act (Driver 1992). Immanuel Kant’s arguments against the mistreatment of animals are often cited as such an instance. Kant (1963) claims that we have duties not to be cruel to animals because this type of cruelty will undermine the genuine duties that we owe to all persons. Although treating animals in a cruel manner does not violate Kant’s categorical imperative, such treatment damages our benevolent feelings and makes us prone to be cruel to persons. Resemblance is taken to be a morally relevant feature of our actions because it can corrupt the actor and it can also mislead others in ways that lead to their moral corruption. Does the resemblance argument have any application to the debate over minority distrust and the delivery of health care? Perhaps it does. If efforts by public-health officials to reduce the risks of AIDS in predominantly African-American communities resemble the strategies that were used in the now-infamous Tuskegee syphilis study (Jones 1993), then one might argue that through resemblance such acts, although not in themselves morally wrong, may be faulty because of their tendency to corrupt the actors or those who witness such acts. The Tuskegee study is a research project that has become symbolic of deception and abuse by the medical establishment of the AfricanAmerican community. The researchers used culturally sensitive techniques on the grassroots level to ensure the involvement and participation of the subjects. In the 40-year Tuskegee study, 399 black men with syphilis and 201 controls were involved. The unwitting participants were not exposed to

Racial Groups, Distrust, and the Distribution of Health Care syphilis by the researchers, but even after the discovery of penicillin, the men in the study with syphilis were not informed about their conditions nor were they treated. To keep the participants ignorant, there was an extensive collaboration among a variety of government agencies, private institutions, and community-based organizations. If public-health programs resemble, in form but not in content, the practices in the Tuskegee study, then this might give many people in poor black communities pause. Sensitive public-health officials have attempted to design programs to address the distrust in poor African-American communities. However, strategies like hiring grassroots people from the community can backfire and further contribute to the distrust (Thomas 1991). Such efforts often resemble the Tuskegee study. Julia Driver has argued that one of the basic reasons for thinking that acts that resemble immoral acts are faulty is that we may be unsure about the moral status of these acts (Driver 1992, p. 337). Because we are unsure, we tend to play it safe and regard these actions as morally faulty. Can we justify calling health and public-health programs in African-American communities morally objectionable when they appear objectionable to members of these communities? Some would argue against such a characterization; they might contend that to do so would be unreasonable. Are they correct? Whether they are correct depends upon how confident we are about the safety and fairness of these programs. As the probability approaches 1.0, we are inclined to reject the misgivings of African-Americans. But when the evidence is less persuasive, given the past abuses for AfricanAmericans, such programs will require greater evidence of propriety than would be required for people who do not have such a history. What will count as reasonable will depend upon past experiences, the extent of the possible harm, and the resources that are available to cope with untoward eventualities. This, of course, is not to deny that the probabilities should rationally dictate whether African-Americans should be involved with such programs. My point is simply: human beings more often than we might think do not do what the probabilities dictate they ought to do. We have seen that African-Americans avoid the health care system because of their distrust. Driver also argues that there are sometimes good consequentialist reasons for refraining from doing something that is not in itself wrong.

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She cites the case of a woman who pays for a vase that she knew that she did not break to prevent any of the negative consequences that might result from misunderstandings concerning the breaking of the vase (Driver 1992, p. 341). In a like manner, a public health care system may expend funds to forestall the unjustified misgivings that may result from misunderstandings regarding legitimate efforts to reduce the risk of communicable diseases. Even though there may be some bad consequences connected with pandering to people’s false perceptions, the good consequences outweigh the bad. There may be a more compelling argument for using state resources to mitigate the bad consequences created by an understandable but unreasonable distrust of the health care system. In Political Liberalism, John Rawls has argued that stability is an important component of a just society. According to Rawls, [t]he problem of stability is not that of bringing others who reject a conception to share it, or to act in accordance with it, by workable sanctions, if necessary, as if the task were to find ways to impose the conception once we are convinced it is sound. Rather, justice as fairness is not reasonable in the first place unless in a suitable way it can win its support by addressing each citizen’s reason, as explained within its own framework. (Rawls 1992, p. 143)

Rawls recognizes that for a society to be correctly described as just, citizens and public officials must comply with the rules laid down by the basic institutions of society. This compliance must be sustained over a period of time, and those who are expected to comply with it must feel they have a reasonable basis for doing so. For Rawls, it would not be permissible to coerce, pressure, or trick citizens into this compliance. Stability must be achieved by addressing each citizen’s reasons. If stability is an important requirement of the just society, then a society in which a significant number of persons believe that they are being treated unjustly will be unstable. Even if the society is just, it has an obligation to reasonably demonstrate to all of its citizens that it is indeed just and trustworthy. Many African-Americans believe the health care system in the United States is not designed in accordance with principles that are fair and just. If stability is important, and I think that it is, then a just society should be willing to expend the

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resources to demonstrate the justness of the system. This is especially important where there has been a history of isolating a segment of society by race and then treating this segment in unfair ways. Since African-Americans have experienced such a history, it is only reasonable that they would be skeptical about the kind of treatment they might be accorded. While this skepticism can be overcome, it is naïve to think that special efforts won’t be required to do so. While I don’t want to encourage wild conspiracy theories about state-sanctioned programs of black genocide, we must not be cavalier about the possibility that African-Americans may be the victims of racist injustice. We have made great strides in race relations in this country, but there is still much work to be done. Because of this unfinished work, a just society must be willing to make special efforts to ensure that AfricanAmericans can have confidence that the basic institutions of their society will provide them with fair access to health care, respect their rights, and treat them with dignity.

T H E BA S I S O F D I S T RU S T Does this mean that we should alter our health care system? I think so. But if our changes are to be effective, we need to realize that the systemic distrust that African-Americans feel is not limited to health care; it is a part of a more general distrust for public and private institutions that have a racist history (Herk & Hochschild 1990). Past policies and practices have certainly played a role in engendering this distrust. No one can seriously dispute the host of serious injustices that have been committed against African-Americans by the criminal justice and health care systems because they were black. Although racial discrimination has been reduced, critics complain of a crippling “victim’s mentality” that prevents many African-Americans from taking full advantage of existing opportunities (Steele 1990) and encourages African-Americans to blame their personal failings on racism. According to the philosopher Laurence Thomas, we must exhibit a minimal amount of trust when it comes to strangers without having overwhelming evidence that they are trustworthy (Thomas 1989, pp. 176–186). But can we afford to trust strangers in cases where life and death is at risk? When we are vulnerable to significant bodily or economic harm, should rational people require strong evidence of the trustworthiness of the person or institution that they are relying upon?

Do African-Americans have good reason for distrusting the health care system? The continued existence of anti-black racism, as documented by Jennifer Hochschild (1985) and Andrew Hacker in his 1992 book Two Nations: Black and White, Separate, Hostile, Unequal, undermines the belief that African-Americans are treated fairly by institutions that are controlled by whites. Hacker assumes that all racism must be eliminated before African-Americans can drop their skeptical attitudes. But as our experiences with school desegregation cases shows us, the elimination of intentional racism is not enough (Hacker 1992): de facto racial discrimination can be just as debilitating as de jure discrimination. As we are well aware, efforts to eliminate de facto segregation in the schools, and in other walks of life, have met with strong opposition. Many African-Americans view this opposition as evidence of the lack of good will towards their plight. To the extent that they are right, there is a rational basis to be skeptical about how they will fare when they seek health care. But even if African-Americans are justified in thinking that their race could adversely affect the quality of health care they will receive, this would not show they are being treated unjustly unless the system does not attempt to eliminate their distrust. It is not enough to make health care programs available to African-American communities. Additional efforts and resources should be made available to these communities to overcome the skepticism that many members of the community have towards these programs. The Tuskegee study is unambiguously a case where people’s rights were violated, but it is also a case that gives even the most secure AfricanAmericans pause about what their government might do in the name of maximizing the common good (Thomas 1991). The Tuskegee study and the disproportionate impact that AIDS is having on the black community help to fuel conspiracy theories about black genocide. These theories, in turn, breed distrust in a population that is poor and resentful in the wake of persistent inequality. Given that the present political and social reality was created in large part by the past unjust actions of the state, state action is necessary to alter this reality. Whether one uses the language of rights or the vocabulary of the common good, special efforts by the state are required if public-health programs are to overcome distrust that took years to construct. We should not be surprised to find that engendering trust in such a system will not be achieved overnight.

Racial Groups, Distrust, and the Distribution of Health Care There is also widespread distrust about publichealth programs to combat contagious diseases and also about the quality of primary health care that poor African-Americans receive. Given the changes that have occurred in black communities in the wake of racial integration and a growing black underclass, we still find few black health professionals to serve a population with serious health care needs. These factors combine to cause AfricanAmericans to receive inadequate health care. Trust in a doctor–patient relationship is an important ingredient in receiving good health care. It is especially important for members of the black underclass to have trusting relationships with people who provide their health care (Thurston 1996). It is not that the doctors are unwilling to develop these relationships, but because patients don’t see the same doctor on a consistent basis, the familiarity that is necessary to build the bonds between doctors and patients is often lacking. Old family doctors knew that the human side of medicine is important. The lack of familiarity, and thus a lack of trust, unfortunately leads many poor African-Americans to avoid seeking health care until they absolutely have no other choice. Distrust, and the harm that results because of it, cannot be addressed without making fundamental changes in the way our society conceptualizes obligations and priorities. We cannot make changes without reaching some public consensus about how to eliminate the remaining vestiges of a system of racial discrimination. A consensus about the requirements of justice is probably the best we can do in a democratic society that is defined by racial and cultural pluralism and a belief that each citizen is entitled to shape her own conception of the good life.

FIXING THE PROBLEM Let us assume, for the sake of argument, that I have established a prima facie case for the claim that a just society should take steps to eliminate the well-founded distrust that many AfricanAmericans have towards the health care establishment. How can this be achieved? Should affirmative action be used to recruit and train African-American medical students who may be more aware of the plight of African-Americans? This seems like a sensible proposal. However, some conservative writers have raised objections to the idea that a person’s race is an indicator of who would be better at serving the needs of a particular community.

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Nevertheless, it is doubtful that the number of African-American physicians can be increased enough to have much of an impact on the distrust problem unless we employ very aggressive affirmative-action measures. Instead, I wish to examine some of the problems that we face in trying to convince physicians who are not AfricanAmericans that this is a problem that they can and should address. Morally responsible physicians believe they have the best interests of their patients as their primary concern. And many believe that their good intentions, commitment to sound medical practices, and adherence to the law is sufficient for safeguarding the interests and well-being of their patients. So, unfortunately, they doubt whether reflecting on minority distrust of the health care system will enhance their behaviors as physicians. There are a number of reasons why physicians may adopt this attitude: (1) Many physicians believe that there are some clear-cut things that are right and wrong and good or bad, but that when it comes to many ethical disputes there is no clear-cut position that reasonable people can all agree upon. About these controversial issues, they embrace a kind of ethical relativism. They doubt whether we can reach some reasonable overlapping consensus about certain ethical concerns. For example, they might argue about the morality of abortion (Thomson 1998). This objection may be valid in the case of abortion, but I doubt that it can be used to support failing to address the issue of minority distrust of the health care system. There are no troublesome premises of a metaphysical or moral sort in the argument in favor of taking African-American distrust seriously. Reasonable consensus can be found on this question. Therefore, it would not be reasonable for a morally decent physician to ignore distrust on this ground. (2) Doctors are thought to be very smart and caring people. In fact, to be admitted to medical school students must give evidence that they possess both characteristics in some abundance. We are reluctant to think of caring and smart people as harboring racial biases. However, this assumption is wrong: doctors suffer from the same biases and

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In Vulnerable Populations and Medicare Services: Why Do Disparities Exist? Marian E. Gornick uses Medicare data to demonstrate the disparities that exist in Medicare utilization and treatment between elderly people of color and elderly white patients (Gornick 2000). By focusing on Medicare recipients, she is able to eliminate class and income factors that complicate making comparisons between blacks and whites in the general population. Gornick’s study shows that black Medicare patients are not given the same quality of care as their white counterparts. She indicates that they are subjected more often than white patients to radical debilitating surgical procedures and that they are less likely to be given the most advanced medical procedures. Medical doctors unwittingly bring their biases and prejudices to bear when treating black patients. They often assume that blacks are less able to understand certain courses of treatment or that blacks don’t have the patience and perseverance that white patients have. This causes doctors to mistakenly believe that there is a rational basis for recommending certain treatments to their white, but not to their black, patients. Once these data are brought to the attention of doctors, can we rely on them to change their conduct, or will a watchdog agency have to monitor and coerce doctors to do the right thing? History has shown that even when de jure racial discrimination is brought to the attention of the offending parties and laws and rules are changed to correct the bias, de facto racial discrimination still exists. I don’t see why things would be different in this case. Without some authority using its power to bring about changes, I doubt that things will be different. In the present conservative political climate where there is an emphasis on deregulation, there is not much political capital that can be brought to bear through regulations designed to eliminate racial discrimination in the delivery of health care. Doctors already feel that they are overburdened with paperwork from insurance companies and government agencies. It is doubtful that the AMA would support moving in this direction even if state and federal legislators were amenable. (3) Because doctors are experts in one area (medicine), they often mistakenly believe that their expertise carries over into other areas. This belief often generates a harmful

paternalistic attitude that often prevents doctors from doing the kind of assessment of their medical decisions and practices that is necessary to ensure that their patients are receiving good medical care and are treated with the respect and dignity they deserve. During American slavery there was a dominant conception of blacks as uniformed, childlike figures labeled “sambos” and, in the case of female slaves, selfless caregivers called “mammies” (McGary & Lawson 1992, Intro, Chaps. 2 and 3). These stereotypical images of blacks persist today in American culture. As I have argued elsewhere, paternalistic motives often puts behavior that we consider morally unacceptable in a more positive light. People who act in a way that is harmful to another for paternalistic reasons are seen as misguided rather than evil, for their motive is to do good, not to cause harm or suffering. There is a tendency to think that such people should be educated rather than punished. This view is very Kantian (Kant 1963); it assumes that people’s motives are primary in determining the moral worth of their conduct. People who adopt a more consequentialist perspective put greater weight on outcomes. They might judge that harmful acts even done out of paternalistic motives should be censured and punished. Even though Americans care about outcomes, we still think that why a person does what she does (motive) is an important part of any moral assessment of the person and the behavior. There is ample evidence that there is still a widespread belief in the culture that blacks are less intelligent than whites, whether this position is justified by appealing to genes or social conditioning. With either rationale the result is that blacks are stereotyped as less intelligent. Saddled with this stereotype of blacks, it is no wonder that many doctors proscribe different courses of treatment for their white and black patients (Gornick 2000, p. 43). Of course, any stereotype or racial generalization can be theoretically overcome in a given case by contrary evidence. However, erasing or repairing stereotypes also requires some substantial personal experience. Since many black patients don’t see the same doctor on a regular basis, the sustained interaction that is necessary to overcome the stereotype does not exist in many cases. (4) The final excuse that many doctors give for failing to address the problem of

Racial Groups, Distrust, and the Distribution of Health Care minority distrust of the health care system is that they just don’t have the time to do so. They don’t deny that this is an important problem, but they question the priority that should be given to it. They believe that there are more pressing concerns that require their attention. From their point of view, resources and time are better expended helping patients who are not so distrustful of the system. This is not an unreasonable stance for doctors to take. Doctors very often engage in cost–benefit analyses to determine which of the courses of action available to them will produce the greatest good. I don’t question their method, but I have reservations about whether they will indeed achieve greater good by not addressing the distrust that we find in many African-American communities.

CONCLUSION We should be careful to distinguish the nature of the distrust that doctors are being asked to address. Some people within African-American communities are so distrustful that they see doctors only in cases of medical emergencies. Others will practice preventive care, but they don’t have complete confidence that their physicians have their best interests at heart. Many patients believe that the doctors are more concerned with their own material interests rather than their welfare. As a consequence, they don’t take full advantage of the medical expertise and resources that are available. As I have argued above, all of this distrust is not unfounded. All of us act upon generalizations in all aspects of our lives, and this is certainly true when it comes to our health. If African-Americans discover that a significant percentage of their racial group are being exploited or misused in certain institutional settings, then they will be distrustful or extremely cautious when it comes to their dealings with these institutions. I think this is also true for whites, but I think it has greater pertinence for African-Americans given the history of anti-black racism in this country. It is very difficult for people from different races to build the bonds that will allow them to trust one another. The doctor–patient relationship is also susceptible to these difficulties (Thomas 1999). People are able to trust people of different races by getting to know them, and this can happen only through greater association with those you perceive to be different. Overcoming

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prejudices and stereotypes is something that can be achieved only when the parties involved have open, frank, and sustained interactions with one another. In most medical settings today this sustained interaction is hard to come by. It would be nice to think that we can overcome racial misunderstandings by simply pointing out the ways that these misunderstandings occur. However, this way of viewing the problem gives too much weight to rationality and not enough attention to the role that our emotions play in how we conduct our lives. Even when we know that something is the reasonable thing to do, our emotions often stand in the way of doing what we know to be best. Race relations in the United States invoke strong emotions in the parties involved, and understanding and addressing these emotions can occur only where there is meaningful and sustained interaction. It is doubtful that medical practices today lend themselves to many sustained and meaningful interactions between white doctors and their African-American patients. This is especially true where the class and cultural backgrounds of the parties involved are also very different. The establishment of such interactions should be high on the priority list of health care providers and therefore merit the expenditure of resources. In the end these resources would help doctors detect and ward off illnesses that require even greater expenditures. It is shortsighted for health care providers to save now but spend vast sums of money later when they have to deal with the medical consequences of patient distrust. The problem of minority distrust of the health care system is a serious but solvable problem. I have tried to suggest how it might be solved without turning to affirmative action in medical school admissions. Kenneth DeVille has given us good reasons for thinking that affirmative action is a viable option for overcoming distrust (1999). However, I am not sure that in the present climate there is enough resolve to allow us to use affirmative action for this purpose. Therefore, my intent was to suggest other alternatives. I only hope my remarks will encourage others to give this issue the frank and public discussion that it deserves.

POSTSCRIPT: AFRICANAMERICAN OBESITY AND H E A LT H First Lady Michelle Obama is using her influence to combat childhood obesity. In announcing her initiatives to combat obesity, she called it an epidemic and one of the greatest threats to America’s

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health and economy. Her initiatives call on the federal government to work with local officials in the business and nonprofit sectors to put in place commonsense measures to empower families and communities to make healthy decisions for their children. Her plan encourages more nutritious foods in schools, greater physical activity, and greater access to affordable healthy food. Several ideas were mentioned to help communities to combat childhood obesity. They include increasing access to outdoor recreational activities, requiring physical education in schools, placing schools within walking distance of residential communities, increasing traffic safety in areas where people could be physically active, and promoting an infrastructure that supports biking and walking. These are all sensible proposals, but they have met with some criticism. Supporters of more limited federal government are weary of what they perceive to be unwarranted paternalistic interference in the affairs of private individuals. Even though Ms. Obama was careful to emphasize that these efforts would not be government programs, her critics were still unconvinced. They worry that these initiatives are on a slippery slope to greater government control over citizens’ private lives. Perhaps Ms. Obama did not tackle the issue of obesity in adults because she was skeptical about the chances of success in getting adults to change their eating habits and physical fitness routines. Although this controversy is interesting, I won’t focus on it here. Instead I will argue that given the history of anti-black racism in American society, African-Americans still have special reasons to be distrustful (skeptical) of official efforts to change their eating habits and lifestyles. If this is so, efforts that are designed to combat obesity in African-Americans must be cognizant of this concern. The Body Mass Index (BMI) is used to measure obesity. The BMI classifies obesity into three classes: in class I, people are at risk of developing health-related problems; in class II, at high risk of developing health-related problems; and in class III, at extreme risk in developing health-related problems. Unfortunately, African-Americans are over-represented in all three classes, and this makes them prone to have health problems like cancer, diabetes, gallstones, gout, heart disease, high blood pressure, high cholesterol, and stroke (Cossrow & Falkner 2000). As a consequence, obesity has an enormous negative impact on individuals, families, local communities, and society

at large. Given the major negative impact, the pertinent question is: Why is obesity, on average, higher in African-Americans? Various approaches have been taken to answer to this vexing question. One answer relies on biology, physiology, or genetics. This approach explores whether there is something about the body chemistry or genetic makeup of African-Americans that makes them more prone to obesity. The biologic or genetic approach is not without controversy; as discussed above, many scientists and philosophers in the postmodern age question racial groups as natural kinds, and, therefore, they challenge the idea of connecting disease to races (Root 2003). A second approach focuses on the historical and social construction of diseases in certain socially constructed groups. These scholars often focus on slavery in the United States to construct viable explanations for the disparities and incidences of obesity in African-Americans. Karen Hess, a food historian, has written about attempts by African-Americans to maintain some of their African culture through food (Hess 1992). She argues that slaves in the South created their own cooking culture by using foods that were definitive of their African and West Indian heritages. And many people believe that “soul food” is simply African-Americans recipes passed down from generation to generation. These recipes are typically high in caloric and fat content. Scholars who take this approach compare rates of obesity, diabetes, and hypertension in African-Americans and whites (obesity: 33.4% in African-Americans vs. 21.3% in whites; diabetes: 10.8% vs. 7.8%; hypertension: 36.6% vs. 22.1%) and conclude that diet is the most significant contributor to obesity. However, they always point out that a larger percentage of the African-Americans have incomes below the poverty level. And, as a consequence, they have little choice but to eat foods that are not costly; this means that fresh fruits, fresh vegetables, and lean cuts of meat are often out of their budgets (Horowitz et al. 2004). The third approach I shall label the “normative explanation of the problem.” This approach focuses on values to explain why obesity in African-Americans is so prevalent. As a philosopher, I am especially attracted to the normative approach. This is not to say that I devalue the other approaches; in fact, an adequate explanation of obesity should probably draw on all three approaches. In taking the normative approach, it is important to note that there are different kinds of values

Racial Groups, Distrust, and the Distribution of Health Care (e.g., aesthetic, cultural, religious, and social). Each of these values has an important bearing on how people construct their conduct. Therefore, the norms that guide our conduct are shaped by values. For example, religious norms and values have played an important role in AfricanAmerican communities. Given this relationship, it is important for religious leaders to determine whether there is a correlation between the religious values found in African-American communities and the problem of obesity. Personally, I doubt that such a connection exists, but given the influence that religion has in African-American communities, it would be wise to be sure. Since the African-American population today is several generations removed from their ancestral homelands, most African-Americans’ lifestyles have been shaped by their parents and grandparents, who mostly lived in the southern part of the United States. Coming from a Southern background, historically, African-Americans’ rites revolve around food. This means that obesity might be positively correlated with certain cultural values that contributed to certain behavioral factors like dietary choices and levels of physical activities. The relationship between social values and disease raises fascinating and important questions for sociologists and social psychologists. If the high rate of obesity in African-Americans is to be resolved, these professionals must play a crucial role in the resolution. Aesthetic values and concepts of beauty were often used to explain the level of obesity in African-Americans. African-American aestheticians have argued that there are different standards of beauty in the African-American and white communities (Craig 2002). For instance, the “I’m Black and I’m Proud” slogans of the 1960s and 1970s reflected the belief that key features, fair complexions, and straight hair did not exhaust what counted as human beauty. They argued that black skin, broad facial features, and wooly hair were, indeed, beautiful. Their aesthetic also applied to the so-called black body type. They also challenged the fairly recent Western conception of the slender female form; this concept of female beauty rejects the fullfledged woman as a paradigm of beauty. The normative approach is thought to be especially pertinent because of the prevalence of obesity in African-American women. According to the American Obesity Association, between 1999 and 2000, African-American women, compared to Mexican-American and

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white non-Hispanic women, had the highest prevalence of overweight women at 78%, and obese women at 50.8%. The supporters of the aesthetic normative approach argue that the different standards of beauty played an important factor in any explanation of the disparities between African-Americans and other ethnic and racial groups. An interesting hypothesis, it certainly appears to have some intuitive possibilities, but sometimes intuitions can lead us astray. Before we can draw any firm conclusion, we must test this hypothesis empirically. While normative approaches that focus standards of beauty are quite suggestive, they don’t preclude looking elsewhere for answers. Of course, I believe the obese also have the primary responsibility to address their obesity. They should do all they can to become knowledgeable about their condition, take steps to remedy it, and search out places where they can obtain help in doing so. By requiring these things, I am not blaming the victims. The criticisms of Bill Cosby by some people in the AfricanAmerican community for chastising Africans for not doing their part to close the educational achievement gap are unfair: even if someone is unjustly pushed into a deep ditch, and the person who put him there does nothing to help him get out of the ditch, this does not mean that the person in the ditch should not do all that he can to get out. In a similar manner, even though there may be aesthetic, cultural, and social reasons (poverty) reasons that make overcoming obesity more difficult for African-Americans, this does not relieve them of the primary responsibility to do all they can to do so. The mere fact that many African-Americans distrust the health care system does not mean that the system is necessarily unfair to them, nor does it directly follow that the system ought to be altered or abandoned. It depends on why they distrust the system. If the distrust is based upon misconceptions, then initially it may seem that there is no need to change the system. But this initial reaction may be mistaken. Just because a system is fair does not mean it could be readily seen as such. As I argued above, a fair system may not be good enough; it may also be necessary for the system to be readily viewed by all as fair. A health care system that wishes to be responsive to the needs of the entire community may have an obligation to address even the erroneous perceptions. Even if the system was just, and the distrust was not well founded, the long and

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troubled relationship between African-Americans and various components of the health care system may make the distrust that many AfricanAmericans feel understandable, if not justified. As I suggested above, perhaps an equitable health care system should be willing to make reasonable efforts to dispel these perhaps erroneous feelings of distrust about warnings concerning the dangers of obesity. A report from the Institute of Medicine in 2002 entitled “Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care” found that a consistent body of research demonstrates significant variation in the rates of medical procedures by race, even when insurance status, income, age, and severity of conditions are comparable. This research demonstrates that U.S. racial and ethnic minorities are less likely to receive even routine medical procedures and experience a lower quality of health services. In the case of obesity, how should this be done? In the first edition of this volume, I put the burden on doctors to address the distrust. However, after taking a close look at the controversy over what can be done to address high rates of obesity in the African-American community, I would broaden the class of professionals who have a primary responsibility to overcome the distrust. Most illness has a physiological and a social component. The physiological component is certainly important, but the social dimensions of disease should not be ignored. If we are going to make inroads into the obesity problem, we must call upon businesspeople, community activists, educators, nutritionists, religious leaders, and teachers, as well as the people who suffer from obesity and their families, to become better informed and to do what they can to address the social dimensions of the condition. To borrow a phrase from Hilary Clinton, it takes a village to solve social problems that generate medical maladies.

References Aristotle. (1987). Nicomachean Ethics, 5th ed., Book 5. Transl. by M. Ostwald. New York: MacMillan. Baker, R. (1999). Minority distrust of medicine: a historical perspective. Mount Sinai Journal of Medicine 66:212–222. Cone, D.C., L.D. Richardson, K.H. Todd, J.R. Betancourt, & R.A. Lowe. (2003). Health care disparities in emergency medicine. Academic Emergency Medicine 11:1176–1183. Cossrow, N., & B. Falkner. (2000). Race/ethnic issues in obesity and related comorbidities. Journal of

Clinical Endocrinology & Metabolism 89:2590– 2594. Craig, M.L. (2002). Ain’t I a Beauty Queen? Black Women, Beauty, and the Politics of Race. New York: Oxford University Press. DeVille, K. (1999). Trust, patient well-being and affirmative action in medical school admissions. Mount Sinai Journal of Medicine 247–256. Driver, J. (1992). Caesar’s wife: On the moral significance of appearing good. Journal of Philosophy 89:331–343. Gornick, M.E. (2000). Vulnerable Populations and Medicare Services: Why Do Disparities Exist? New York: The Century Foundation. Hacker, A. (1992). Two Nations: Black and White, Separate, Hostile, Unequal. New York: Scribners. Herk, M., & J. Hochschild (1990). Yes, but . . . . : principles and caveats in American racial attitudes. In Majorities and Minorities, eds. J.W. Chapman & A. Wertheimer. New York: New York University Press, pp. 308–335. Hess, K. (1992). The Carolina Rice Kitchen: The African Connection. Urbana, IL: University of Illinois Press. Hochschild, J.L. (1985). Thirty Years After Brown. Washington, DC: Joint Center for Political Studies. Horowitz, C.R., K.A. Colson, & P.L. Herbert. (2004). Barriers to buying healthy foods for people with diabetes: evidence of environmental disparities. American Journal of Public Health 94:1549–1554. Jones, J.H. (1993). Bad Blood: The Tuskegee Syphilis Experiment. New York: Free Press. Kant, I. (1963). Lectures on Ethic. Trans. by L. Inflied. Indianapolis: Hackett. Mappes, T.A., & J.S. Zembaty. (1981). Biomedical Ethics. New York: McGraw-Hill, Chapter 11. McGary, H. (1999). Distrust, social justice, and health care. Mount Sinai Journal of Medicine 66:236–240. McGary, H., & B.E. Lawson. (1992). Between Slavery and Freedom: Philosophy and American Slavery. Bloomington, IN: Indiana University Press, Intro. and Chapters 2 and 3. Nielsen, K. (1985). Equality and Liberty: A Defense of Radical Egalitarianism. Totowa, NJ: Rowman and Allanheld. Nozick, R. (1994). Anarchy, State and Utopia. New York: Basic Books, Chapter 7. Rawls, J. (1971). A Theory of Justice. Cambridge: Harvard University Press, p. 62. Rawls, J. (1992). Political Liberalism. New York: Columbia University Press. Root, M. (2003). The use of race as a proxy for genetic differences. Philosophy of Science 70:1173–1183. Sen, A.K. (1988). Rights and agency. In Consequentialism and Its Critics, ed. S. Scheffler. Oxford: Oxford University Press, pp. 187–223.

Racial Groups, Distrust, and the Distribution of Health Care Soo-Jin, L.S., J. Mountain, & B.A. Koenig. (2001). The meanings of “race” in the new genomics: implications for health disparities research. Yale Journal of Health Policy, Law, and Ethics 1:33–76. Steele, S. (1990). The Content of Our Characters. New York: Saint Martin’s Press. Thomas, L. (1989). Living Morally: A Psychology of Moral Character. Philadelphia: Temple University Press, pp. 176–186. Thomas, L.M. (1999). Trusting under pressure. Mount Sinai Journal of Medicine 223–228. Thomas, S.B. (1991. The Tuskegee syphilis study, 1932 to 1972: implications for HIV education and AIDS risk reduction programs in the black community. American Journal of Public Health 81:1498–1504.

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Thomson, J.J. (1998). A defense of abortion. In The Abortion Controversy: 25 Years After Roe v. Wade, eds. L.P. Pojman & F.J. Beckwith, pp. 117–131. Belmont, CA: Wadsworth Publishing. Thurston, J. (1996). Death of Compassion: The Endangered Doctor–Patient Relationship. Waco, TX: WRS Publishers. Wasserstrom, R. (1980). Racism and sexism. In Philosophy and Social Issues. West Lafayette: University of Notre Dame Press. West, C. (1992). Race Matters. New York: Beacon Press. Williams, D.R., & S.A. Mohammed. (2009). Discrimination and racial disparities in health: evidence and needed research. Journal of Behavioral Medicine 32:20–47.

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22 Gender Justice in the Health Care System An Elusive Goal ROSEMARIE TONG

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ncreasingly, we recognize that significant health disparities exist within populations. Although there is no single definition of health disparities, most experts agree with the Institute of Medicine (IOM) that health disparities are not “due to access-related factors or clinical needs, preferences, and appropriateness of intervention” (Garvin et al. 2009) but are instead due to characteristics related to patients’ gender, race, ethnicity, class, and so forth. Such disparities are thought to be “not only unnecessary and avoidable” but also “unfair and unjust” (Whitehead 1992, p. 429). In this connection, Elizabeth A. Hall-Lipsy and Marie A. Chisholm-Burns point out that “[i]n addition to perpetuating social and historical inequities, health disparities are often reflected in negative health outcomes, including higher mortality rates, greater burdens of disease and disability, and a reduced quality of life for those populations that experience disparate medical care and treatment” (Hall-Lipsy & ChisholmBurns 2010, p. 462). When feminists express specific concerns about gender-based health disparities in the health care system, they raise considerations about justice and gender that traditional philosophers have either not raised or raised in the manner of an aside (Okin 1989). Among these gender-aware justice perspectives are the following: (1) the sameness approach, (2) the difference approach, (3) the dominance approach, (4) the diversity approach, and (5) the dependency approach (Kittay 1999, pp. 8–17). In this chapter, I discuss the ways in which these five perspectives function in analyses of gender-based disparities in the health care system. In the end, I decide that none of these approaches considered alone can guarantee gender justice for women in the health care system. Rather, depending on the issue at

stake and the situation in which a woman finds herself, some combination of these approaches can help improve her health situation relative to men. Gender justice is secured a mile at a time rather than by one colossal leap. Moreover, it is achieved only with the help of the value of care, for unless people care for and about each other, they will not be motivated to work towards an elusive goal like gender justice.

T H E S A M E N E S S A P P ROAC H TO AC H I E V I N G G E N D E R JUSTICE IN THE H E A LT H C A R E S Y S T E M In general, sameness feminists claim that equality for women consists in women having the same opportunities as men have to secure “the resources and privileges now concentrated in the hands of men” (Kittay 1999, p. 8). With respect to the health care system, they observe that two types of gender-based assumptions or lenses have made it less aware of women’s needs and interests than men’s. One of these lenses is male bias, which “refers to the ‘observer bias’ present in scientific inquiry when scientist-observers adopt male perspectives” (Mastroianni et al. 1994, p. 111). The other one is the male norm, which “refers to the tendency to perceive men’s identity and experience as the characterization or standard of what it is to be a person and to portray female differences, where they occur, as deviant” (Mastroianni et al. 1994, p. 111). Sameness feminists believe that male bias and the male norm explain why many physicians (particularly male physicians) tend to treat female patients with less respect and consideration than male patients. Although considerable efforts have been expended to make physicians more aware of their gender biases (Weisman 1998), female

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patients continue to report difficulties in communicating with their physicians. For example, in a 1997 New York Times/CBS News poll, 59% of 1,453 women interviewed said their own physicians “talked down” to them half or most of the time, irrespective of their level of education (Elder 1997, p. 8). In addition, 47% of these women said they perceived physicians in general as taking men’s complaints far more seriously than women’s. Among the most highly educated women polled, this perception jumped to 63%. In a more recent study, many women complained that male cosmetic surgeons, for example, did not seem to understand (or, in some instances, care about) what kind of body changes their female clients wanted. One petite woman reported that after she lost considerable weight and wanted “to tighten the loose skin around her torso and lift her breasts,” her male cosmetic surgeon assumed her goal was to look like a buxom Barbie doll, when, in point of fact, she wanted breasts much flatter than Barbie’s. Other women interviewed in the same study expressed similar complaints (Singer 2006, p. G3). Another issue that concerns sameness feminists is physicians’ tendency to misdiagnose women’s conditions, especially coronary heart disease, the number-one killer of women (Maserejian et al. 2009, p. 1661). Specifically, all too many physicians continue to think that women with serious cardiac problems have only minor gastrointestinal problem (Park 2010, p. 41), even though numerous scientific studies have established that women with coronary heart disease often present with symptoms similar to acid reflux (Maserejian et al. 2009, p. 1663). Moreover, the same study concluded that middle-aged, well-to-do women were twice as likely as middle-aged, well-to-do men to receive a mental health diagnosis (Maserejian et al. 2009, p. 1666). Apparently, women’s reports about feelings of anxiety, stress, and tension are interpreted as signs of a mental problem, whereas men’s reports of the same feelings are interpreted as signs of coronary problems. As sameness feminists see it, this last example reveals society’s lingering cultural bias that women, more than men, are prone to having mental problems, especially depression. Still another complaint that sameness feminists make about women’s treatment in the health care system is that some physicians treat women’s endof-life decisions differently than they do men’s. Several studies support this claim. One study found that women were denied their right-to-die

request 86% of the time, while men were granted their request by the courts 75% of the time (Miles & August 1990, p. 85–95). Similarly, another right-to-die study indicated that of the 81 people (the authors do not specify how many were women and how many were men) who requested an illegal lethal dose of medication from their physicians in order to commit so-called physician-assisted suicide, 97% of those granted a prescription were men. Furthermore, of all the men and women who requested so-called active euthanasia in the form of an illegal lethal injection from their physicians, 57% were men, while 43% were women (Meier et al. 1998, pp. 1193–1200). Finally, in 95% of the cases reported for this study, where the physician facilitated illegal physician-assisted suicide, a male patient directly made the request. In contrast, in 54% of the cases where the physician committed illegal active euthanasia, the request had been made by family members for a female patient. As sameness feminists see it, these last statistics suggest two worrisome possibilities: (1) that physicians may deem male patients, more than female patients, competent to end their lives by their own hands in the privacy of their own homes (Park 2010, p. 747), and (2) that physicians may be more willing to end a woman’s life, if ending it is requested by family members and if the fatal act can take place in an institutional environment (Park 2010, p. 747). In short, women’s right to determine their destiny seems to be less respected than men’s. A final complaint sameness feminists make is that research scientists tend to overprotect women, particularly pregnant women. One of the results of the Women’s Health Initiative at the National Institutes of Health (NIH) was the passage of the NIH Revitalization Act of 1993. This act ruled that a representative sample of women had to be included in each NIH-funded study unless their exclusion could be justified by a reason other than cost. The effect of this ruling was momentous. By 2001, women made up the majority of participants in NIH-funded studies (Government Accounting Office 2004). Yet even though women considered as a generic group are now routinely enrolled in research studies, pregnant women still experience considerable difficulty enrolling in them. Sameness feminists point out that despite a 1994 recommendation by the IOM that pregnant women should be presumed eligible candidates for most research studies, “many researchers and institutional review boards (IRBs) continue to regard pregnancy as a near-automatic cause for

Gender Justice in the Health Care System exclusion, regardless of the costs of exclusion or the magnitude or likelihood of the risks of participation” (Lyerly et al. 2008, p. 6). This exclusion of pregnant women from research studies is based largely on researchers and IRB members wanting to protect the fetus, as if the pregnant woman was not the most appropriate judge of her fetus’s interests relative to her own. Unlike men and nonpregnant women, pregnant women are left with two unattractive options: (1) accept an intervention with unknown potential risk to them and/or their fetus, or (2) not accept it. The unfairness of this state of affairs speaks for itself. Speculating that as soon as there are as many female as male physicians and researchers, women’s and men’s health status and health care needs will be equally well met, sameness feminists have sought to increase women’s access to medical schools and PhD programs in the natural sciences. But even though women have gone from 7% of all physicians in 1960 (American Medical News 1992, p. 19) to over 30% of all surgeons and physicians (U.S. Department of Labor, 2008), U.S. female physicians tend to be clustered in the least prestigious and therefore least lucrative specialties. For example, 68% of U.S. female physicians practice pediatric medicine and 51% practice family care medicine, two of the lowest-status and least well-compensated fields of medicine in the United States. Moreover, U.S. female physicians who enter specialties such as obstetrics and gynecology, dermatology, and cosmetic surgery may be socially conditioned to enter areas of medicine that are closely tied to women’s traditional reproductive and sexual roles. Obstetrics focuses on delivering healthy babies; gynecology treats female diseases such as menopause, breast cancer, and cervical cancer; and cosmetic surgery aims to improve women’s appearance (U.S. Department of Labor 2008). The situation for women is much the same in the sciences. In 1999–2000, the percentage of PhD students and PhD degree recipients in the life sciences who were women was 44% (GAO 2004, p. 17). Yet female scientists are not as honored, privileged, and well funded as male scientists, largely because of their lack of connections to those who make granting and funding decisions (Angier 1992, p. B8). Indeed, the situation for female scientists has not changed much from 1989, when only 14% of the NIH research projects were directed by women (Council on Graduate Medical Education, 1995). Thus, sameness feminists continue to espouse affirmative-action initiatives

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aimed at not only increasing the number of women in previously male-dominated professions but also their rank and salary in them (Verdonk et al. 2009, p. 142).

THE DIFFERENCE A P P ROAC H I N T H E H E A LT H C A R E S Y S T E M In contrast to sameness feminists, difference feminists do not think that women have to become like men in order to become men’s equals. On the contrary, they think that gender equity depends on society recognizing that women’s differences from men are essential to society’s well-being. They reason that without women’s traditional caregiving touches, life in society would be very unpleasant and, in the extreme, even untenable. Therefore, it is incumbent upon society to esteem “womanly”/feminine values as highly as it esteems “manly”/masculine values. Given their frame of reference, it is not surprising that difference feminists disagree with sameness feminists that gender disparities in the health care system will disappear as soon as more women become physicians, health care administrators, and scientists. As difference feminists see it, women often emerge from medical school and science graduate school thoroughly molded by the male norm and male bias, and overly eager to prove they can practice medicine (Dresser 1992, p. 28) and do science research just as androcentrically as men. Unless women swim against the tide, and resist becoming like men in medical school and science graduate school, insist difference feminists, nothing will fundamentally change about how medicine and science are done, and gender disparities in the health care system will stubbornly persist. Women need to emerge from medical school and science graduate school as women so they can practice medicine and do science research gynocentrically. Only then, say difference feminists, will medical and science establishments become the kind of environments in which patients’ psychic, spiritual, and emotional needs are taken just as seriously as their somatic and medical needs (Angier 1992, p. B8). In particular, unless gynocentric medicine and science thrive, problems such as domestic violence and sexual abuse may not be routinely recognized and sympathetically addressed (Anderson 2009). From what has been said so far, it stands to reason that difference feminists are strong advocates for women’s health centers. In the early 1990s,

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when Dr. Karen Johnson proposed the creation of a woman’s total health specialty capable of meeting all of women’s basic health care needs (Davis 1993, pp. 81–82), difference feminists endorsed her recommendation. They observed that throughout history women have sought all-female environments in which to address their health care concerns. Maternity hospitals thrived in the 1800s; family planning centers grew in the early 1900s; and birth control, abortion, and birthing centers appeared in the 1970s (Thomas & Zimmerman 2007). Thus, in difference feminists’ estimation, women’s health care centers, staffed primarily by female health care practitioners (Gross 1997, p. 15), are just the latest addition to a long tradition of all-female health care environments. Difference feminists’ continuing aspirations for new-millennium women’s health care centers include the hope that within such environments female health care practitioners and their female patients will be able to thoroughly discuss nonreproductive health issues as well as reproductive health issues. They imagine, for example, that women’s characteristic symptoms for coronary heart disease will be recognized as warning signs of an impending heart attack or stroke rather than as the effects of indigestion or depression. They also envision that particularly good discussions will occur between female physicians and female patients about issues such as the optimal frequency of mammograms. Throughout the 1980s, 1990s, and most of the 2000s, annual mammograms for screening breast cancer had achieved the status of annual Pap smears for the screening of cervical cancer. Most women in their 40s believed they had a near-right to an annual mammogram, and that it was the best way for them to detect early cancer in their breasts. But, in 2009, the U.S. Preventive Services Task Force recommended that women start routine scans at age 50 rather than age 40, and that they be scanned biannually rather than annually. Attacked by opponents who disagreed with their recommendations, the task force conceded that mammograms do save lives among women in their 40s, but that 1,900 women in their 40s had to be screened for over a decade to save a single life. This single saved life, continued the task force, needs to be weighed against the psychological and physical harms that many of the other 1,899 women in their 40s experienced as the result of a detection of a small lump, an uncomfortable biopsy, a stressful wait, and, then, in most cases, a negative result. Moreover, screening women

in their 40s, when information about the condition of their breasts is “iffy,” needs to be balanced against the fact that mammograms for women in their 50s and 60s provide much better information. Indeed, among women in their 50s only, about 1,300 women have to be screened to save a single life; and among women in their 60s, when cancer is more prevalent, only 377 need to be screened (New York Times 2009, p. A34). Difference feminists maintain that in a traditional health clinic, making a decision about having an annual mammogram could easily become a tug-of-war between physicians and patients, as it seems to be at present with women in their 40s demanding an annual mammogram from their physician for fear that a price tag is being put on their life. In contrast, say difference feminists, the same discussion about the need to have an annual mammogram might proceed in a very different way in a women’s health clinic with a female physician and a female patient working together to determine whether she, a woman in her 40s, really needs an annual mammogram since her previous mammograms have all been negative (Rabin 2010, p. D7). Predictably, sameness feminists, unlike difference feminists, have opposed both a women’s health specialty and one-stop women’s health centers. Indeed, Dr. Michelle Harrison, a sameness feminist, insists that women are better served when women’s similarities to men are emphasized. Her main concern is that with the creation of a women’s health specialty, the established specialties may pay even less attention to women than they do now. Rather than being viewed and used as a resource that other specialties should tap for valuable information about women’s health, a women’s health specialty might instead be viewed as a “ghetto” for women and minority physicians and research scientists: an underpaid, low-prestige, domestic specialty for “do-gooders” (Harrison 1992, p. 101). Moreover, instead of being presented to female patients as high-quality, state-of-the-art, efficient medical complexes, women’s health centers might instead be marketed to women as places to relax and chat, to get massages, and to receive diet, exercise, and beauty tips (Thomas & Zimmerman 2007). Finally, Dr. Harrison and other sameness feminists insist that male physicians no less than female physicians can handle issues such as the annual mammogram controversy just as sensitively and effectively as female physicians.

Gender Justice in the Health Care System THE DOMINANCE A P P ROAC H TO AC H I E V I N G GENDER JUSTICE IN THE W O R L D O F H E A LT H C A R E Another group of feminists, dominance feminists, agree with difference feminists that the human community is in great need of the human traits, realities, and methods that have been traditionally linked to women (e.g., interdependence, community, sharing, emotion, body,trust, absence of hierarchy, nature, innocence, , process, joy, peace, and life) (Jaggar 1992, p. 364). Nonetheless, they point out that viewing women as society’s primary nurturers may contribute to women’s overall subordination to men. Exhausted by their selfimposed as well as socially prescribed labors of love, women may have relatively little, if any, energy left to pursue their own interests. Thus, dominance feminists maintain that equality for women consists neither in women becoming the same as men nor in women maintaining their difference from men. Rather, it consists in women liberating themselves from men. In other words, to achieve equality with men, women need to identify and explore those attitudes, ideologies, norms, systems, and structures that keep women the “second sex;” that is, the sex that becomes nurses, administrative assistants, and laboratory technicians instead of physicians, hospital administrators, and research scientists. Among the interesting points that dominance feminists make is that women probably had more control over their health care during the 18th and 19th centuries than they do now. Before scientific biomedicine became capable of effecting dramatic cures for diseases, women were, literally, the doctors in the house. They developed a panoply of relatively effective home remedies for many common, chronic ailments. In addition, they routinely served as midwives, relying upon their own experiences to assist other women through what was, at the time, the perilous course of giving birth to a child (Speert 1980). Midwives’ and women’s general control over reproductive matters was not to remain unchallenged, however. As scientific biomedicine, often referred to as “regular” or “allopathic” medicine, began to grow in power and prestige, its practitioners, most of whom were men, claimed they could offer women better pregnancy services than midwives could. Although it was initially difficult for the practitioners of allopathic medicine to convince American women to use their services, they gained inroads into the realm of obstetrics/gynecology

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subsequent to their increased use of painkillers and forceps, two innovations that helped them to ease the birth process for women and to reduce infant mortality (Weisman 1998, pp. 40–41). Not only did the practitioners of allopathic medicine gradually take over midwives’ role, they made it extremely difficult for women to join their ranks, going so far as to exclude all women from membership in the newly established American Medical Association (1847). Nevertheless, despite the fact that women had to jump very high hurdles to gain admission to medical schools, a small but extremely able and articulate group managed to do so. Many of these early female physicians became leaders in the turn-of-the-century Popular Health Movement, one of the aims of which was to reduce the size of families (Bogdan 1990). They urged “respectable” women to practice “voluntary motherhood” (i.e., birth control) by simply saying no to their husbands’ requests for sex (Weisman 1998, p. 44). The teachings of the Popular Health Movement notwithstanding, most turn-of-the-century women were not inclined to say no to their husbands’ requests for sex. Instead, wanting to have an active sex life with their husbands, they used the contraceptives and abortifacients then available (douching preparations, vaginal sponges, condoms, and the like). In dominance feminists’ estimation, women’s increasing ability to take charge of their own reproductive destiny without the interference of men set the stage for post-Civil War efforts to put women back into a subordinate place. The war had left the American male population decimated, and society wanted women to resume their reproductive role full force. Saying no to procreative sex seemed to constitute an unpatriotic act, in the estimation of the emerging medical establishment. Speculating that women’s increasing desire for non-procreative sex was a sign of “imbalances” in women’s psyche, practitioners of allopathic medicine sought to restore women’s wombs to what they considered health. They claimed that concentrated study, focused reading, and creative writing drew women’s blood supply to their brains, thereby causing women’s ovaries to wither and die. Thus, practitioners of allopathic medicine routinely prescribed “rest-cures” (long periods of bed rest devoid of intellectual activity) as proper treatment for women’s menstrual problems, failed pregnancies, infertility, and appetite for too much non-procreative sex (Speert 1980). Reflecting on the development and practices of allopathic medicine and scientific biomedicine

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in the United States and elsewhere, dominance feminists observe that the health care establishment has done at least as much harm as good to women in the past and still does so today. Specifically, they claim that often women require more health care than men not so much or only because they are actually more ill than men, but because medical entrepreneurs deliberately create unnecessary medical needs for women. Patricia Braus, author of the book Marketing Health Care to Women, says, “Women go through their childbearing years and are told to have regular checkups,” and women are “more likely to keep up a relationship with their doctor. Men drift away and don’t come back until their 40s or 50s, when they have concerns like prostate cancer” (Kluger 2010, p. 38). In an era when health care costs are escalating and third-party payers are growing ever more stingy, dominance feminists suspect that an increasing number of health care administrators and professionals are aiming to capitalize yet more on female baby-boomers, the generation of women now hitting their 50s and 60s whose average life expectancy is about 82 (Arias 2007, p. 12). Currently, scores of products, both conventional and alternative, are being developed to meet aging women’s supposed need to stay young. For example, hormone replacement therapy (HRT) is regularly touted as a panacea for women’s wrinkles, hot and flushed bodies, weak bones, sexual dysfunctions, and memory gaps (Watkins 2007), even though HRT is risky for women (Lumsden 2005). In addition, cosmetic surgery is, more often than not, being presented as an opportunity any women who cares about herself ought to seize upon lest she becomes an unsightly mess (Singer 2006). Thirty years ago, women kept their facelifts and breast implants secret, but nowadays they follow Joan Rivers’ lead and brag about how many procedures they have had. In her memoir Men Are Stupid. . . and They Like Big Boobs, Rivers reflected on her well-publicized attempts to surgically improve her lips, breasts, nose, stomach, and eyes, musing that: “Looking good equals feeling good” (Rivers & Frankel 2010, p. 2). Later, Rivers commented that “I’d rather look younger and feel happy than look older and be depressed” (Rivers & Frankel 2010, p. 46). Dominance feminists are also distressed by the medical establishment’s seeming desire to push women towards motherhood no matter the costs. Women in their 50s and even 60s are told there is still hope for them to have a baby

(AP 2005, p. A8). But promising aging women a “miracle” baby is not always the best health policy. Sadly, the world’s oldest woman to have had a child via in vitro fertilization (IVF) made headlines in June 2010 following the announcement that at age 70, and 18 months after giving birth to a daughter, she is dying. Rajo Devi Lohan of India experienced a ruptured womb during her cesarean delivery and her aged body was unable to recover (MFS, 2010). Another feature of modern medicine that bothers dominance feminists is its tendency to encourage women to use prescription drugs not only for clinical depressions but for essentially “personal problems” (Manninen 2006, p. 101). The problem with these medications is that they have a tendency to “yo-yo” women between high and low spirits to the point at which they no longer feel in control. For these reasons and more, dominance feminists express the concern that health care professionals are weakening women by trying to get them to meet unrealistic standards for physical beauty and motherhood. Women, they say, would be better off were they to rely less on the experts and more on themselves when it comes to maintaining their psychological health.

T H E D I V E R S I T Y A P P ROAC H TO AC H I E V I N G G E N D E R J U S T I C E I N T H E WO R L D O F H E A LT H C A R E Although dominance feminists initially confined their discussions to gender inequities, some of them soon came to the conclusion that women’s oppression is a complex phenomenon consisting of several interconnecting parts. Redescribing themselves as diversity feminists, this group of feminists agreed with Charlotte Bunch that “domination on the basis of race, class, religion, sexual preference, economics, or nationality cannot be seen as a mere additive to the oppression of women by gender” (Bunch 1985, p. 82, emphasis mine). Thus, as diversity feminists see it, depending on facts about herself over and beyond her femaleness, one woman may receive better health care than another woman will. For example, if a woman has “made it” in this society, she will go to the kind of women’s health center that caters to middleaged and upper-middle-class women, employed and insured, white and well-educated. There she will be treated to “boutique health care” (Gross 1997, p. 15). All of her health care needs will be met by physicians eager to serve her in any way possible. At the opposite end of the spectrum, the

Gender Justice in the Health Care System woman who has not “made it” in this society will go to another kind of women’s health center—the Medicaid clinic. Although Medicaid clinics do not bill themselves as women’s health centers, their clientele certainly is mostly female. Depending on the level of state and federal support available, a woman who depends on Medicaid funds for her care will be provided with a more or less basic package of services delivered by a hurried and hassled staff. Diversity feminists note that differentials in the kind of health care unprivileged women as opposed to privileged women typically receive are especially worrisome with respect to reproductive and genetic technologies. For example, in the United States, permissive sterilization policies have historically worked only to certain women’s advantage. A situation illustrating this point is the now-defunct rule of 120, widely followed by obstetrician-gynecologists through the 1960s and imposed nearly exclusively on healthy, white, middle-class patients. This guideline for reproduction recommended sterilization for a woman only if her age (say 30) times the number of her living children (say 4) equaled 120 or more. Angered by physicians’ attempts to get them to have more children than they wanted, privileged women pressed for permissive sterilization policies. It did not occur to them that the same obstetricians and gynecologists who were reluctant to sterilize “good stock” were often quite willing to sterilize “inferior stock” (that is, women of color, especially indigent ones). Indeed, in some Southern states, sterilizations of indigent black women were so common that they were irreverently referred to as “Mississippi appendectomies” (Rodriguez-Trias 1982, p. 150). If permissive sterilization policies have worked mainly to serve privileged women’s interests, restrictive abortion policies have hit poor women particularly hard. Just because a woman in the United States has a legal right to get an abortion during the first trimester of her pregnancy does not mean that anyone has a duty to pay for the procedure. Ever since 1976, note diversity feminists, there has been a ban on using federal monies—the kind of funds poor women often rely on—to fund elective abortions. President Obama’s 2009 health care reform bill continues to honor this 1976 ruling, named in honor of Congressman Henry Hyde, who made it law. Women who want insurance coverage for elective abortions, and who wish to purchase the new public plan, need to pay for it plus a private abortion plan

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(Hornick 2010). Moreover, the Obama plan leaves it up to individual states to decide whether they wish to provide abortion coverage at all. In sum, Obama’s plan does not make it discernibly easier for poor women to get affordable insurance coverage for elective abortions (Rubiner 2009). Diversity feminists also point out that unlike rich infertile women, poor infertile women have little, if any, opportunities to become biological or gestational mothers. For the most part, expensive infertility treatments involving IVF or preimplantation genetic diagnosis (PIGD) are available only to women who can pay for them out of pocket. Although Obama’s plan forbids insurers from turning down infertile individuals for health care insurance, it does not require them to pay for infertility treatments. Given that treatments like IVF can cost up to $12,400 for a single cycle, poor women are priced out of the market (Mehlman & Botkin 1998, pp. 55–87). As a result, poor women do not have the same opportunities to procreate as rich women do (Mehlman & Botkin 1998, pp. 55–87). To be sure, this state of affairs is not unique to the United States. According to diversity feminists, it is a situation familiar to women all over the world, including women in many developing countries. Depending on its population size, available health care services, and beliefs about the value of women, a country will use reproductive and genetic technologies for or against women’s best interests (Petchesky & Judd 1998, p. 298). For example, in China and India, ultrasound is used to screen the sex of the fetus. If a female fetus is detected, it is usually aborted because boys are still valued more than girls in India and China (Dugger 2001, p. 4.4). Moreover, in those European countries with dramatically low fertility rates (McAdams 2006), women are offered a panoply of benefits (paid maternity leaves, subsidized childcare, paid paternity leaves, tax credits, and more) if they have one or more children. Regrettably, in all too many countries, women continue to be viewed merely as baby machines who produce products. Those who produce poor products are incentivized not to reproduce. Babies with health problems are viewed with particular disapprobation. In contrast, those who produce superior products are encouraged to have as many children as they wish. In this connection, there seems to be something strategic about the fact that so many women who use IVF give birth to twins or triplets (Leigh 2004, p. 11A).

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THE DEPENDENCY A P P ROAC H TO G E N D E R J U S T I C E I N T H E WO R L D O F H E A LT H C A R E Clearly, sameness, difference, dominance, and diversity feminists have made significant contributions to improving women’s health status and health care. But they have not focused nearly enough on aging women’s health-related issues. Fortunately, a fifth feminist approach to gender justice in the world of health care, the so-called dependency approach, seems to have the conceptual tools able to identify and analyze older women’s health worries. According to the dependency approach, society needs to be particularly attentive to the health needs of older women because of all the work these women have done throughout their lives to keep society as a whole, but especially their friends, families, and neighbors, healthy. Dependency theorists reject the traditional idea of equality that presumes that all persons are independent, symmetrically situated, and wanting the kind of life privileged white men have traditionally had. They point out that in the world as we actually experience it, most people are more or less dependent on each other and asymmetrically situated. Dependency feminists also note that the kind of life privileged white men and those like them have is made possible by those who do dependency work for them (Kittay 1999). Although dependency feminists concede that the health of elderly women is generally worse than the health of elderly men, primarily because women live longer than men—and the longer one lives, the more chronic diseases emerge—they nonetheless insist that aging women’s health is also worse because of all the caregiving work they have done for others. Worldwide, societies continue to look to women rather than men when elderly family members need long-term care. Comments Jennifer Parks: “It is women (both paid and unpaid) who largely surrender their own goals, plans, and career paths in order to care for citizens in need of care” (Parks 2003, p. 135). On the average, female caregivers provide assistance for 1 to 4 years, but it is not unusual for a female caregiver to provide care for a family member for 5 or more years (Stone et al. 1987, pp. 616–626). Because female caregivers often find that family caregiving takes 22.9 or more hours out of their week (Barrett 2004, p. 8), many of them give up or substantially reduce paid work outside the home. Although caregiving has its emotional rewards,

it remains difficult work nonetheless. In fact, many female caregivers report that their work is often frustrating, depressing, and even overwhelming (Wurman 2004, p. 236). Yet another reason accounts for why aging women’s health is worse than aging men’s health, in dependency feminists’ estimation. More old women than old men are poor, and the poorer one is, the less likely one is to have access to adequate health care. Indeed, in 2007, women ages 65 and over had median annual household incomes of $23,400, whereas men the same age had incomes of $38,222 (Purcell, 2008). The reasons for women’s relative poverty are many, but in general they are related to women’s part-time work status and lower pay throughout their lifetime; widowhood; longer lifespan, which depletes savings (Rowland & Lyons 1996); and lack of private pensions and health care insurance (which, in the United States, are typically provided as benefits only to full-time employees). Thus, it is not surprising that more U.S. women than U.S. men rely on its two public, government-funded programs for health care: Medicare and Medicaid. In 2005, Medicare, the public program for elderly people, covered 41.8 million people age 65 or over. Of them 56% were women and 44% were men (70% of Medicare beneficiaries over the age of 85 are women) (KFF 2009, p. 1). Medicare covers hospitalization and, for an extra fee, physician bills. Although Medicare covers most of the costs of prescription drugs (Aujla 2009), it does not cover the costs of long-term care at home or in a skilled nursing home. Not surprisingly, the fact that Medicare does not cover long-term costs in the United States has a heavy and negative impact on all elderly people, but particularly on elderly women, who constitute nearly 75% of the population in long-term care facilities (FIFARS 2008, p. 58). To qualify for Medicaid, the public program designed for poor people (Repko 2008), an elderly person has to spend down his/her personal assets to $13,050. Then his or her skilled nursing home costs (which cost $61,320 a year in 2003 and are predicted to rise to $122,640 a year in 2017) will be covered by the government. Unfortunately, because Medicaid reimburses physicians at very low rates, many physicians refuse to accept Medicaid patients (Sparer 2009, p. 324). Thus, it is not surprising that many nursing-home residents do not get adequate care. Reports indicate that many nursing homes are understaffed to the point that patients may be endangered. Thirty-four percent of nursing homes

Gender Justice in the Health Care System fail to provide patients with at least 2 hours of daily care from nurse’s aides, and 31% fail to provide patients with at least 12 minutes of daily care from a registered nurse. As a result, a high percentage of nursing home patients suffer from bedsores, malnutrition, and abnormal weight loss. There are simply not enough hands available to clean and feed patients, let alone to comfort and provide solace to them (Pear 2000, p. 1). As sad as this state of affairs is, even sadder is the fact that many nursing-home residents have little contact with family members or old friends (FIFARS 2008, p. 58). Women in nursing homes tend to be even lonelier than the men there. Most of them are widows with fragile familial networks weakened by the death of their husbands.

CONCLUSION Feminist considerations about sameness, difference, dominance, diversity, and dependency have done much to eliminate gender-based disparities in the health care system, but more work remains to be done. Unless we abandon the traditional conception of equality, masterminded by the ontology of the separate self, and substitute for it a new conception of equality supported by an ontology of interdependency and an ethics of care, women will continue to be treated less well than most men. We are not so much independent equals as dependent non-equals who need each other to survive and, hopefully, to thrive. Gender justice in the health care system and elsewhere will be attained only if all people care enough about each other to make equity between men and women a sociopolitical priority. References Anderson, K.L. (2009). Gendering coercive control. Violence Against Women 15(12):1444–1457. Angier, N. (1992). Bedside manners improve as more women enter medicine. New York Times, June 21, p. B8. Arias, E. (2007). National Vital Statistics Report. National Center for Health Statistics 56(9):1–40. Associated Press (AP). (2005). World Briefing Europe: Romania: Mother, 66, and baby doing well. New York Times, Jan. 18, p. A8. Aujla, S. (2009). Merits of wider drug coverage. Wall Street Journal, July 7, p. D5. Barrett, L.L. (2004). Caregiving in the U.S. National Alliance for Caregiving and AARP. Bogdan, J. (1990). Childbirth in America, 1650 to 1990. In Women, Health, and Medicine in America: A Historical Handbook, eds. R.D. Apple. New Brunswick, N.J.: Rutgers University Press, pp. 101-120.

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Bunch, C. (1985). U.N. World Conference in Nairobi. Ms., June, p. 82. Council on Graduate Medical Education. (1995). Fifth Report: Women and Medicine. Rockville, MD: US Department of Health and Human Services. Davis, F. (1993). Who should doctor women? Working Woman, March, pp. 81–86. Dresser, R. (1992). Wanted: single, white male for medical research. Hastings Center Report, January/ February, pp. 24–29. Dugger, C. . (2001). Modern Asia’s anomaly: the girls who don’t get born. New York Times, May 6, p. 4.4. Elder, J. (1997). Poll finds women are the health savvier sex and the warrior. New York Times, June 22, p. 8. Federal Interagency Forum on Aging-Related Statistics (FIFARS). (2008). Older Americans 2008: Key Indicators of Well-Being. Federal Interagency Forum on Aging-Related Statistics. Washington, DC: US Government Printing Office. Garvin, J., B. Odom-Wesley, W.J. Rudman, & R.S. Stewart. (2009). Healthcare disparities and the role of personal health records. Journal of AHIMA web exclusive: http://library.ahima.org/xpedio/groups/ public/documents/ahima/bok1_043826. hcsp?dDoc Name=bok1_043826. Government Accountability Office (GAO). (2004). Gender Issues: Women’s Participation in the Sciences Has Increased, But Agencies Need to Do More to Ensure Compliance with Title IX. Washington, DC: United States Government Accountability Office. Gross, J. (1997). Is there a doctor in the house? Whatever kind you need. New York Times, June 22, p. 15. Hall-Lipsy, E.A., & M.A. Chisholm-Burns. (2010). Pharmacotherapeutic disparities: racial, ethnic, and sex variations in medication treatment. American Journal of Health-System Pharmacy (67):462. Harrison, M. (1992). Should women’s health be a separate medical specialty? Glamour Magazine (169):101. Hornick, E. (2010). Abortion issue seen as key to health care reform passage. CNN.com, May 16: www.cnn. com/2010POLITICS/03/22/abortion.health.care. vote/index.html. Jaggar, A. (1992). Feminist ethics. In Encyclopedia of Ethics., eds. L. Becker & C. Becker. New York: Garland, pp. 363–364. Kaiser Family Foundation (KFF). (2009). Medicare’s role for women. Kaiser Family Foundation, June, pp. 1–2. Kittay, E. (1999). Love’s Labor: Essays on Women, Equality, and Dependency. New York: Routledge. Kluger, J. (2010). Lady Madonna: It’s not easy to keep a family healthy, and the burden nearly always falls on women. Time, April 15, pp. 37–38. Leigh, S. (2004). Fertility patients deserve to know the odds—and risks. USA Today, July 7, p. 11A.

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Lumsden, M.A. (2005). The hormone replacement therapy controversy. BJOG: An International Journal of Obstetrics and Gynaecology 112(6):689–691. Lyerly, A.D., M.O. Little, & R. Faden. (2008). The second wave: toward responsible inclusion of pregnant women in research. International Journal of Feminist Approaches to Bioethics 1(2):5–22. Mail Foreign Service (MFS). (2010). At 70, world’s oldest mother lies dying with baby at her side. The Daily Mail, June 15. Manninen, B.A. (2006). Medicating the mind: a Kantian analysis of overprescribing psychoactive drugs. Journal of Medical Ethics 32(2):100–105. Maserejian, N.N., C.L. Link, K.L. Lutfey, L.D. Marceau, & J.B. McKinlay. (2009). Disparities in physicians’ interpretations of heart disease symptoms by patient gender: results of a video vignette factorial experiment. Journal of Women’s Health 18(10):1661–1667. Mastroianni, A., R. Fader, & D. Federman. (1994). Women and health research. Ethical and legal issues of including women. Clinical Studies. National Academy Press. McAdams, L. (2006). Russia losing battle in population growth to disease, low birth rates. Voice of America. Retrieved July 1, 2008, from http://www. voanews.com/english/archive/2006–03/2006–03 08-voa29.cfm. Mehlman, M.J., & J.R. Botkin. (1998). Access to the Genome: The Change to Equality. Washington, DC: Georgetown University Press. Meier, D.E., et al. (1998). A national survey of physicianassisted suicide and euthanasia in the United States. New England Journal of Medicine 338:1193–1200. Miles, S., & A. August. (1990). Courts, gender, and “the right to die.” Law, Medicine and Healthcare 18: (1–2):85–95. New York Times. (2009). The controversy over mammograms. New York Times, Nov. 19, p. A34. Okin, S.M. (1989). Justice, Gender, and the Family. New York: Basic Books. Park, A. (2010). Helping hearts. Women survivors are out to change the notion that heart disease is mostly a man’s problem. Time, April 26, pp. 41–42. Parks, J.A. (2003). No Place Like Home: Feminist Ethics and Home Health Care. Bloomington: Indiana University Press. Pear, R. (2000). U.S. recommending strict new roles at nursing homes. New York Times, July 23, pp. 1, 15. Petchesky, R., & K. Judd, K. (1998). Negotiating Reproductive Rights: Women’s Perspectives across Countries and Cultures. London: Zed Books. Purcell, P. (2008). Income and Poverty among Older Americans in 2007. Washington, DC: Congressional Research Service.

Rabin, R.C. (2010). Doctor–patient divide on mammograms. New York Times, Feb. 15, p. D7. Repko, M. (2008). Medicaid puts greater responsibility on families for nursing home payments. The Buffalo News, Aug. 8: www.buffalonews.com/incoming/ article109273.ece. Rivers, J., & V. Frankel. (2010). Men Are Stupid . . . And They Like Big Boobs: A Woman’s Guide to Beauty Through Plastic Surgery. New York: Pocket Books. Rodriguez-Trias, H. (1982). Sterilization bbuse. In Biological Woman: The Convenient Myth, eds. R. Hubbard, M.S. Henifin, & B. Fried. Cambridge, MA: Scheneman. Rowland, D., & B. Lyons. (1996). Medicare, Medicaid, and the elderly poor. Health Care Financing Review 18(2):61–85. Rubiner, L. (2009). Impact of Stupak amendment on access to abortion coverage and care. Issue Brief: Planned Parenthood. Planned Parenthood Federation of America, Inc. Singer, N. (2006). Does the sex of the surgeon matter? New York Times, March 30, p. G3. Sparer, M. (2009). Medicaid and the U.S. path to national health insurance. New England Journal of Medicine 360(4):323–325. Speert, H. (1980). Obstetrics and Gynecology in America: A History. Chicago: American College of Obstetricians and Gynecologists. Stone, R., G. Cafferata, & J. Sangl. (1987). Caregivers of the frail elderly: a national profile. Gerontologist 27:616–626. Thomas, J.E., & M.K. Zimmerman. (2007). Feminism and profit in American hospitals: the corporate construction of women’s health centers. Gender & Society 21(3):359–383. United States Department of Labor (USDL). (2008). Quick Stats on Women Workers, 2008. Available: www.dol.gov. Aug. 19, 2009. Verdonk, P., Y.W.M. Benschop, H.C.J. Haes, & T.L.M. Lagro-Janssen. (2009). From gender bias to gender awareness in medical education. Advancements in Health Science Education 14:135–152. Watkins, E.S. (2007). The Estrogen Elixir: A History of Hormone Replacement Therapy in America. Baltimore, MD: Johns Hopkins University Press. Weisman, C.S. (1998). Women’s Health Care: Activist Traditions and Institutional Change. Baltimore, MD: Johns Hopkins University Press. Whitehead, M. (1992). The concepts and principles of equity and health. International Journal of Health Services 22(3):429–445. Wurman, R.S. (2004). Understanding Healthcare. Newport, RI: Top.

23 Justice for Gay and Lesbian People in Health Care T I M O T H Y F. M U R P H Y

T

here are no entirely reliable estimates of the number of gay and lesbian people in the United States, nor for that matter of the number people who identify themselves as bisexual or transgender. A 1994 study found that approximately 2.8% of its male subjects and 1.4% of its female subjects identified themselves as having a homosexual or bisexual identity, but considerably more people engage in homosexual behavior at some point in their lives without thinking of themselves as gay, lesbian, or bisexual, or they identify themselves that way only for a time.1 When it comes to transgender identity, the American Psychological Association says that 1 in 10,000 biological males assert a female identity, and 1 in 30,000 biological females assert a male identity.2 Of course, there are also people who engage in cross-sex behavior at some point in their lives without thinking of themselves as transgender. Sexual minorities face difficulties in obtaining optimal health care for a number of reasons. Until the recent past, the United States criminalized homosexual behavior. Psychiatry treated homosexuality as a disorder. And most religions treated homosexuality as sinful. All of these factors and the associated social stigmas rendered the sexual minority invisible to medicine and therefore made it difficult for medicine to meet the health care needs of homosexual people. The 1973 decision by the American Psychiatric Association (APA) to stop treating homosexuality as a disorder and the 2003 U.S. Supreme Court decision to decriminalize adult homosexuality helped to lift some of the historical burdens imposed on homosexual people. Some religions have moved to integrate homosexual men and women into their faith communities. Considerable work remains to be done, however, before gay men, lesbians, bisexual people, and transgender men and women enjoy full access and equitable health care.

Gay men, lesbians, and transgender people do not enjoy the same social and legal standing that others take for granted. For example, Illinois law permits physicians to advise wives or husbands that their spouse has an HIV infection when the spouse is unwilling to make that disclosure.3 The law in Illinois limits this disclosure to spouses alone, so people in same-sex relationships cannot benefit from this public-health intervention, which could help protect against an HIV infection.4 Like other states, Illinois law also specifies which people are entitled to make decisions as surrogates for patients who become unable to make medical decisions for themselves. The law designates these decision-makers according to a particular hierarchy. When a patient is incapable of making decisions, physicians can turn to legal guardians, spouses, parents, adult children, other relatives, and friends to make those decisions, in that order. The law makes no specific provision for people in same-sex relationships. Thus, unless the patient has previously made other arrangements, gay and lesbian people count, at most, as “friends” and must yield their place as decision-makers to people higher on the surrogacy list.5 Some gay men and lesbian have even had difficulty in securing visitation rights when their partners are hospitalized. In 2009, a hospital turned a woman away even as her partner lay dying.6 (While a court found no fault in the hospital’s behavior, President Barack Obama later directed the Department of Health and Human Services to ensure that hospitals and health care facilities receiving federal money allow patients to designate the visitors they wish to have and that any legal advance directives be respected.7) Some health care practitioners even want to turn away homosexual and transgender patients.8 Coupled gay men and lesbians cannot always extend health insurance to their partners and

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dependents in the same way that many others provide for their families. Men who have sex with other men are even prohibited from donating blood for reasons of social stigma and exaggerated fears of transmitting infectious diseases.9 Inequalities like these permeate the health care system. It is therefore important to identify obstacles to equitable access for gay men, lesbians, and transgender people in order to diminish them.

THE BASIS FOR N O N - D I S C R I M I N AT I O N BY MEDICAL PROFES SIONALS The American Medical Association (AMA) holds as a core ethical principle that physicians have the right to choose their patients. But, in fact, the law restricts that choice, and physicians may not violate laws or policies that protect patients from discriminatory treatment. Even the AMA recognizes the value of non-discrimination and offers an advisory that physicians should not discriminate against patients on the basis of their sexual orientation.10 Several lines of moral argument converge to make the point that people should be treated as equals in regard to access and equity in health care. Utilitarian philosophers use the promotion of happiness as the basis for decision-making: Law and policies should work to create the greatest amount of happiness for the greatest number of people. In the classic formulation of this philosophy offered by John Stuart Mill, people’s choices should be restricted only if there is harm to others. It can be argued that permitting physicians to turn away patients because of their sexual orientation can cause harm to those patients: They can suffer delayed care, with potentially life-endangering consequences. Secondly, reserving the right to turn patients away undercuts the presumption of the equality of all people because it presupposes that the happiness of homosexual men and women is less valuable than that of others. If we treat the happiness of homosexual men and women as equal in value to that of all others, it makes little sense to give health care practitioners the right to turn them away, any more than it would to give health care practitioners the right to turn away patients on the basis of color, ethnicity, or sex. A greater good is produced for society by protecting against discrimination than by reserving for some physicians the right to decline some patients on the basis of their skin, their ethnicity, or their sexual identity.

The presumption in favor of equality can also be supported by a Rawlsian thought experiment, the veil of ignorance. According to John Rawls, fairness means arranging society so that some people are not systematically excluded from the advantages that others enjoy. To arrive at this conclusion, imagine yourself making decisions from behind a veil of ignorance, so that as you chose policies for your society you did not know whether you were male or female, young or old, healthy or ill, homosexual or straight, and so on. Suppose further that even though you did not know your own traits, you still knew what human beings want from life in general: relationships, education, money, and other social goods.11 We can extend Rawls’s thought experiment strategy to health care. No reasonable and rational person behind the veil of ignorance would want to see his or her sexual orientation or gender identity accepted as a reason for denial of medical care. Any decisionmaker behind the veil of ignorance might turn out to be homosexual, bisexual, or transgender once the veil of ignorance is lifted. So, the best choice for each person is to protect herself or himself from the significant social disadvantage of allowing people with minority sexual identity to be excluded from medical care. As these two lines of analysis show, the underlying presumption of equality in moral philosophy renders numerous personal traits— race, ethnicity, sexual orientation, national origin—morally irrelevant as criteria of access to and provision with social goods, including medical care. In other words, sexual orientation is not a good enough reason to treat someone with that trait as unequal to others. On the contrary, moral philosophy presumes the equality of all people in a way that does not permit discrimination or willful neglect. Medical ethics does not require that all physicians (or health care providers) be interchangeable replicas of one another, and physicians are entitled to their own religious and moral views about political and moral issues of the day, but medical care is a unique service that cannot be obtained elsewhere. Its services have profound implications for well-being. Homosexuality is not an appropriate criterion for turning away patients, and doing so devalues people and obstructs them from the achievement of the happiness to which they are entitled. That is the reason for antidiscrimination laws and the reason that physicians should not be allowed to turn away patients because of their sexual orientation.

Justice for Gay and Lesbian People in Health Care W H AT ’ S T H E H A R M I N T R E AT I N G H O M O S E X UA L I T Y ? Not so long ago, medicine was more concerned with “treating” and “curing” homosexuality than it was with treating the overall health care needs of homosexual men and women. Starting in the late 1800s, many psychiatrists began to subscribe to the view that homosexuality was a mental disorder. In 1952, the APA declared that homosexuality was a sociopathic personality disturbance.12 The APA modified that view in 1968, reclassifying homosexuality as simply a mental disorder.13 By 1973, the APA changed direction again and declared that homosexuality was no longer pathological, unless it was ego-dystonic (a disorder only if a particular individual finds it disruptive to his or her psychological welfare).14 Even as society worked its way toward more tolerant views of homosexuality during this period, leading medical organizations kept treatment on the books. The AMA once advised physicians that it was proper for physicians to make patients acquainted with “the possibility of sex preference reversal in selected cases.”15 The APA abandoned the idea of ego-dystonic homosexuality in 1987, but it does currently retain the view that “persistent and marked distress about one’s sexual orientation” is a disorder.16,17 Despite this diagnostic category, most contemporary psychiatrists do not see homosexuality as a disorder, as something that requires treatment or modification. In spite of the shift away from pathological interpretations of homosexuality, some people still wish to be rid of their homosexuality and seek “therapy” or “reorientation.” Some commentators have argued that offering this therapy—even on a voluntary basis only—is an injustice toward gay people in general.18 These commentators consider efforts to change sexual orientation as expressing the message that homosexuality is abnormal. For them, this is a message that works against social equity for gay, lesbian, and bisexual people. They would rather have people integrate homosexual interests into healthy lives rather than change their sexual orientation. This debate takes place, of course, at a time when medicine reaches across the breadth and depth of people’s lives. Medicine long ago abandoned the idea that medical professionals must treat only diseases and disorders. Medicine now accepts that its proper scope extends beyond health and illness, and medical professionals see helping people to achieve their goals as legitimate

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uses of medical resources. For example, people routinely turn to medicine to shape their bodies to a particular ideal: clinicians help people adjust their eyelids, noses, chins, ears, cheekbones, and Adam’s apples—among other things—to a desired shape. Some men have their vocal cords treated in order to give them a more masculine-sounding voice. Some women turn to cosmetic surgery to change the shape of their labia. People also turn to psychotropic drugs in order to manage unwanted anxiety, for example, in order to function better in social settings. In many cases, what people want from these modifications is a particular social identity (as someone who is attractive, athletic, or young), not freedom from a disease or disorder per se.19 Likewise, some people want a heterosexual identity instead of the homosexual interests they have. Against the background of medicine that routinely helps people achieve their goals, it has to be asked whether efforts to modify sexual orientation constitute an injustice to the gay and lesbian people who do not seek this treatment. It is hard to see that the practice of sexual orientation therapy by some people amounts to an injustice to all gay and lesbian people. Most gay and lesbian people might not like the idea that clinicians try to help people “get past” their homosexuality, but this clinical practice does not in itself obstruct the ability of most gay men and lesbians to pursue a meaningful life and have access to important social goods. An analogy with religion might be helpful here in making this point: People who profess religion A may not like it that others profess religion B, especially since they think that religion A is the source of all that is good and holy in life. People who help move others to embrace religion A seem, from their point of view, to be doing no harm to the believers in religion B. But the exercise of religion A by its adherents does not mean that adherents of religion B are diminished in the ability to live according to their beliefs. In a pluralistic democratic society, people are free to make decisions about what, if any, religion to profess, even if others find that choice emotionally hurtful in some way. What happens in the privacy of clinical relationships and religious affiliations may seem profoundly mistaken to some people, but it is not for that reason an injustice to others. That being the case, it is still important as a matter of professional medical ethics to advise anyone seeking sexual reorientation about the miserable track record of success in such efforts.20

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Informed consent standards require this kind of disclosure before anyone embarks on such an effort. By contrast, the evidence is much stronger that people can successfully integrate homosexuality into meaningful and rewarding lives, and that information should be part of any informed consent process. The medical debate about transgender identities has lagged behind the discussion of homosexuality. U.S. psychiatry currently maintains the view that people whose anatomies conflict with their expressed gender identities are disordered.21 This view is not universally shared: some commentators argue that variations in gender expression are non-pathological and morally defensible in their own right.22 In some ways, the ethics of treatments for “gender identity disorder” are no less important today than the debates over homosexuality were in the 1960s and 1970s. In fact, society has moved toward greater tolerance of transgender identities: Some states, counties, and cities protect against employment and housing discrimination based on gender identity or gender expression, and courts have upheld antidiscrimination standards against transgender federal employees.23,24 In other words, outside medicine, people with transgender identities are being treated more and more like a social minority rather than as people with a medical disorder. Psychiatrists continue to debate the pathology of transgender identities. While there is no way to predict the outcome of this debate, the medical profession seems to be moving away from a blanket diagnosis that all people with cross-sex identities are disordered and come to accept the view that people may express gender identities as variously as they express religious or political identities. Some people may take issue with unusual expressions of gender, just as they express disagreement with unusual religious and political identities, but the unusual nature of an identity does not necessarily make it pathological. Here again, the key questions of justice for transgender men and women is not whether some adults work with clinicians to “get past” their “gender identity disorder,” but whether they enjoy full access to social goods and equity in social treatment and whether the diagnostic category of gender identity disorder contributes to that ill treatment. To the extent that opportunities in education, employment, and social standing are denied to transgender men and women for reasons that are not defensible, they do suffer injustices that require remedy.

PAY I N G F O R H E A LT H C A R E A N D O B S TA C L E S TO AC C E S S Access to health care is a question of justice, and access to health care for many gay and lesbian people is problematic because of the way society is structured. In the United States health care is delivered through four economic arrangements: fee for service, insurance, government benefit, and charity. Gay and lesbian people receive health care under these arrangements just like everyone else. Thus, gay men and lesbians face the common obstacles of these structures. Fee-for-Service Medicine One way to pay for health care is to pay for it out of one’s own pocket. In these fee-for-service arrangements, health care is like any other service in the marketplace. People make arrangements with a doctor or hospital to receive diagnostic tests and treatment, and they use their own money to pay the bill for those services. Of course, minor treatment might be within a patient’s ability to pay, but the need for extensive treatment usually exceeds most people’s financial means. Paying for an ointment to treat the sudden appearance of a rash is far different from paying for the treatment of chronic kidney disease, for example. A few gay and lesbian people are wealthy enough to pay their own way when it comes to health care, but— like most people—they must look to employers or to the government for help. Philosopher Richard Mohr has pointed out that cultural hostility can interfere with the social flourishing of gay and lesbian people, and that interference can affect their economic standing in the health care system.25 For example, if gay and lesbian adolescents worry that they will be discriminated against in certain careers, they will make choices to avoid that discrimination. Mohr has argued that many gay and lesbian people have ended up in dead-end jobs because they believed they could not pursue more ambitious careers because doing so would make them vulnerable to anti-homosexual hostility. Instead, they opted for jobs with less risk of discrimination should their homosexuality become known. Typically those jobs also provide less social status and economic benefit. In short, social hostility tracks some homosexual people into financially unrewarding jobs and careers. Certainly, society is now more open toward gay and lesbian people than it was in 1988, when

Justice for Gay and Lesbian People in Health Care Mohr first expressed this view. Between then and now, some jurisdictions have passed laws to protect people from employment discrimination based on their sexual orientation. Yet to some degree Mohr’s account was certainly right in the past, and some of the effects he described may linger in some areas today. It is not clear how often strategies of self-protection undermine economic flourishing, but some people probably do walk away from more financially rewarding life choices because they see no way to participate in those choices as gay men and lesbians. Worry about social mistreatment therefore keeps gay and lesbian people somewhat economically disadvantaged, which, in turn, can limit their ability to pay their way when it comes to health care.

Insurance The second way to pay for health care is to rely on money pooled in insurance programs. In theory insurance companies collect “premiums” for people they cover, pool that money, and pay health care costs out of those funds. In the United States, many but not all employers pay premiums to insurance companies on behalf of their employees. Employees frequently pay part of the premium and pay a portion of the actual cost of treatment and medications. Of course, health insurance companies that operate to make a profit always have an incentive to take in more money than they pay out. As a result, they have strong incentives to limit treatments and to exclude people with costly medical needs from coverage. To the extent that gay men and lesbians shy away from more ambitious life plans because of perceived discrimination, they also lose out on the benefits of jobs that provide health insurance as a matter of course. Although these men and women are free to buy insurance for themselves and their family members, private insurance options are far more expensive than insurance coverage provided by employers, who can negotiate for lower rates. Even employer-based health insurance can have less value for gay and lesbian people than for others, especially when coverage is restricted to the employee and specified family members, usually spouses and children. With a few exceptions, most states do not allow same-sex marriages. U.S. federal law also forbids government recognition of same-sex marriage.26 What this means for health care is that some people with insurance are not able to extend that insurance to their partners in the way married spouses can, regardless of the length of a gay or lesbian couple’s relationship and

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regardless of the depth of commitment they have to one another. Some local governments and private institutions may extend insurance coverage to “domestic partners,” to people in “civil unions,” or to same-sex couples who are married according to the laws of their states, but most health insurance excludes that benefit. Ironically, some federal employees may be in same-sex marriages recognized by their home states, but their employer—the U.S. government—offers none of the benefits to their spouses that it does to spouses in opposite-sex marriages.27 It should also be noted that health insurance may not cover all the medical treatments of interest to sexual minorities. For example, insurance coverage is a patchwork when it comes to payment for the treatments required to shift sexual identities, from male to female or from female to male. Some insurers will pay for all recommended treatments, some will pay only a portion, and some will pay none at all. Many people interested in these treatments must find a way to pay for the difference out of pocket, no matter how important these treatments are to their overall well-being.

Government-Provided Health Care A third way to pay for health care is to use tax money for that purpose, and this is done by local, state, and federal governments. For example, some counties use taxes to support hospitals and care facilities for those who cannot afford them otherwise. At the federal level, the government covers the cost of substantial amounts of health care for military personnel, the indigent, and the elderly, but the United States does not extend health care to all its citizens in the way that other countries with national health systems do. Eligibility for government-supported health care is typically determined by political geography. Therefore, the scope of coverage is a political decision, shaped by compromises between advocates of broad social safety nets and advocates of strict self-reliance. Government-subsidized health care is provided without regard to sexual orientation. For example, there is no test of sexual orientation in order to obtain benefits under the Medicaid program (which primarily covers the poor) or the Medicare program (which primarily covers people over age 65). Local governments do not make distinctions based on sexual orientation when they admit someone to a county hospital. Some access to government health benefits have, however, turned indirectly on sexual orientation. For example, in the recent past the U.S. military was required by

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law to discharge any service member it discovered to be homosexual, except under very limited circumstances.28 That federal law made no provision for compassionate retention of military personnel under the provisions of “don’t ask, don’t tell.” This meant that homosexual military personnel faced discharge without regard to their medical condition and without regard to the effect of that discharge on their dependents, who may rely on military benefits for health care. The law excluding homosexual men and women from U.S. military service was rescinded in 2011, so that the way is now open for individual homosexual service members to enjoy the same access to military healthcare as everyone else. However, federal law still forbids recognition of same-sex marriage, despite the fact that it is legal in several states. This federal law has the effect that federal benefits cannot be extended to spouses and certain family members of service members in same-sex marriages. In ways like this, gay and lesbian people continue to face obstacles in access to governmentprovided health care that others do not.

Charitable Health Care Some people don’t pay for health care but have it paid for them as charity. For example, individual physicians can offer patients medical treatment without charge. Some organizations help pay for health care costs for certain people with a particular disease or disability. Gay and lesbian people are, of course, entitled to start their own philanthropies and contribute to health care projects, just as they are entitled to benefit from any philanthropy that supports relevant health care. In these ways, gay and lesbian people are like everyone else. In some cases, however, the need for charity may reflect social factors. For example, playwright Larry Kramer started collecting money for AIDS research and medical care when no one else was contributing to that cause. He said that he had to initiate this effort on his own because society at large was not especially interested in investing in the care of the first victims of AIDS, who were gay men and drug users.29 The social response to AIDS is likely to have been much different if its first victims had been people who were held in high regard.30 The degree of charitable health care needed today to bridge the difference between what homosexual and transgender patients require and what they are able to pay is not known. Neither is the degree to which those health care needs are the result of social indifference or discriminatory practices. Nevertheless, some degree

of charitable health care is necessary because gay men, lesbians, and transgender people can fall outside existing frameworks for the provision of health care. The foregoing discussion does not show what a completely ideal health care system should look like. What it does show is that not all people are on a level field when it comes to the health care system as it now exists. Gay men, lesbians, and transgender people face difficulties because of their sexual orientation and identities and because of the way their orientations, identities, and relationships are treated by society.

M AY P H Y S I C I A N S T U R N AWAY G AY A N D L E S B I A N PAT I E N T S ? In addition to the difficulties gay men and lesbians face when negotiating the health care system, they face further difficulties with individual clinicians. Some health care professionals do not want to treat homosexual people for reasons that have nothing to do with money. Some refuse as a matter of right, others as a matter of conscience. Transgender patients face similar sorts of difficulties.31 In general, medical ethics has traditionally upheld the right of patients to choose their physicians and the right of physicians to choose their patients. If we accept that practice, physicians should be free to choose not to treat homosexual patients. In fact, the AMA currently lists the right to choose patients as a core principle of medical ethics: “A physician shall, in the provision of appropriate patient care, except in emergencies, be free to choose whom to service, with whom to associate, and the environment in which to provide medical care.”32 This core ethical principle is not absolute because the physician’s choice of patients is subject to legal limitations. It does, however, reflect a free-market approach to medicine. This purported principle allows that clinicians are free to decide which patients to accept and treat. It implies that physicians may restrict their practice to the kind of relationships that are rewarding for them. It is certainly compatible with the idea that physicians should be able to turn away patients because of their sexual orientation or any other reason—and patients would enjoy that same freedom, the right to avoid physicians because of their perceived sexual orientation or any other reason. This approach is thought to optimize relationships for everyone. Yet if all physicians were free to decline any patient, according to this principle of medical ethics, it would leave

Justice for Gay and Lesbian People in Health Care homosexual people vulnerable to abandonment. Pointing to this ethical principle, every physician in the United States could decline to treat homosexual patients because of moral, religious, or aesthetic objections to homosexuality, or for any reason at all. Some physicians do want to withhold services from homosexual people. In 1999, a private clinic in California turned away a lesbian woman who was seeking a specific kind of treatment in order to have a child because the physicians there believed it would be sinful to help her, despite the fact that they had already used one treatment without success. The woman—Guadalupe Benitez— went to court saying that she had been wrongfully discriminated against. At the time Benitez v. North Coast was filed (1999), California’s antidiscrimination statute did not specifically mention sexual orientation, but while this case was wending its way through the legal system, other state courts had already begun to interpret the statute as protecting against discrimination based on sexual orientation. The need to read sexual orientation between the lines of the statute changed when the California legislature specifically added sexual orientation to its antidiscrimination law. In 2008, the California Supreme Court declared that Ms. Benitez had been the victim of wrongful discrimination.33 The court was not persuaded that important rights of the physicians were abridged by requiring them to accept patients regardless of their sexual orientation. The court declared that the nondiscrimination standard was important as part of the state’s interest in securing access to health care for all its citizens.34 The court therefore held that North Coast Women’s Care Medical Group had an obligation to have someone available, capable, willing, and licensed to provide treatment to all patients in case some of its practitioners were unwilling to offer specific treatments to specific patients. The court noted that the clinic was not required to offer the specific treatment in question, but if it did, it could not turn anyone away for reasons of sexual orientation. This decision did not, however, require that all physicians at the clinic be available to provide this service; it only required that clinics ensure that the services it offers are available for all, and that requirement does not require the participation of every physician on staff. The court also found that North Coast physicians could not exempt themselves from the nondiscrimination law as a matter of free speech or

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religion. The court argued that providing the services that Ms. Benitez needed in order to achieve pregnancy did not violate their right to free speech because compliance with the law does not in and of itself signal agreement with it. Neither does compliance with the law restrict the physician’s right of free speech. No matter what the law requires of them in the clinic, physicians remain free to express their views about homosexuality, whether in their churches, before the legislature, or elsewhere in the public square. In regard to the claim of free exercise of religion, the court held that people are not free to decline a law of general and neutral applicability (even if compliance with the law imposes incidental conflict with religious beliefs) so long as the state has no less restrictive means of achieving its goal (protecting citizens’ access to health care). According to the logic of this decision, physicians are entitled to object to homosexuality for religious reasons, and they are entitled to object to the idea of gay and lesbian parents. It does not follow from those beliefs, however, that their obligations to homosexual patients are diminished in any way. If a physician does not have the relevant diagnostic or treatment skills required in the care of an individual homosexual man or woman, he or she may decline to treat that particular patient. It is an altogether different matter to turn away homosexual patients in order to express disapproval of those people, even if other health care professionals stand ready to help. What should be noticed here is that it is the law, not medical ethics per se, that governed the California court’s decision. So long as no law requires them to accept patients regardless of sexual orientation, physicians retain a certain degree of freedom—as a matter of ethics—in choosing their patients. This freedom to choose patients has been the subject of a certain amount of controversy. For example, philosopher and physician Julian Savulescu believes that—in general—“To be a doctor is to be willing and able to offer appropriate medical interventions that are legal, beneficial, desired by the patient, and a part of a just healthcare system.”35 He believes the willingness to accept any and all patients should apply in cases where physicians are paid by the government, but he offers an escape clause: Physicians may decline to accept certain patients—homosexual patients, for example—so long as their actions do not compromise the quality, efficiency, or equitable delivery of health care. Moreover, he does not think

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that physicians in the private sector—namely physicians who are not paid by the government—have the same degree of responsibility to accept patients they don’t want to accept. On Savulescu’s view, there is no absolute duty to accept any and all patients, and that freedom of choice would apply as a matter of ethics to accepting or not accepting homosexual patients. As he sees it, physicians in private practice are entitled to pick and choose their patients, and physicians working in the government’s employ can beg off if no serious consequences ensue. By contrast, philosopher Rosamond Rhodes has argued that medicine is a “social artifact”— namely, it is society’s way of meeting health needs: physicians act at the behest of society.36 She argues that to meet the health care needs of its people, society “gives control over a set of knowledge, skills, powers, and privileges exclusively to a select few.” She goes on to say that any patient with a medical need should have a reasonable expectation of receiving the standard of care shaped by medicine as a whole, not care tailored by the physician’s moral or religious viewpoints. Rhodes maintains that people who enter the field of medicine surrender “their personal conscience” as a guide for “making medical decisions.” This view is overbroad, I think, because according to the standards expressed in professional codes and legal standards, physicians do not have the responsibility to care for any and all patients. In fact, professional codes of medicine and the law do not require that every physician be on duty for every possible patient, and the AMA holds out the standard of elective relationships as a core principle of medical ethics itself. The first code of ethics drawn up by the AMA in 1847 does counsel physicians to be “ever ready to obey the calls of the sick,” but the AMA has never maintained that physicians have no right to decline patients.37 Law professor John Robertson, who is committed to wide access to health care by lesbians and gay men, observes that, as a matter of U.S. law, physicians are ordinarily free to make decisions about which patients to accept according to their own views.38 According to Robertson the only patients whom physicians are obligated to treat are those in need of critical care and those whom the law specifically protects from being turned away. In other words, so long as there is no law specifically protecting people from discrimination based on sexual orientation, physicians in private practice “would retain discretion over

whether to provide services to single persons and couples, taking their sexual orientation into account if they wish to do so.”39 Some physicians point to the idea of “conscience exemptions” to avoid taking certain patients under their care. Under these exemptions, physicians and some other health care professionals are entitled to withdraw from certain treatments because of their moral or religious views. For example, Illinois specifically indemnifies physicians and health care institutions from liability if they decline to perform, assist, or recommend an abortion, and the vast majority of other U.S. states make similar provisions.40 The relevant distinction to be recognized in a moral defense of conscience exemptions is the difference between objections to a treatment and objections to a class of people. Conscience exemptions can be defended on moral grounds, but only when they protect rights to withdraw from providing specific treatments, not from patients. It is not the same thing to object to abortion, for example, as it is to object to patients on the basis of their perceived value. Conscience exemptions should not allow physicians to turn away patients because of their sexual or gender identity. If we were to say that physicians should have the right to turn away patients because of their perceived sinfulness or immorality, it would be difficult to see how any limit could be put on the exercise of this choice. If physicians may turn away patients because of homosexuality, why not turn away patients for other perceived sins as well? There is no way to permit discrimination against homosexual patients without also opening the door to discrimination against others who engage in perceived sins: divorce, fornication, adultery, masturbation, usury, eating prohibited foods, conducting research on human embryonic stem cells, and so on. It would be logically inconsistent to say that physicians may decline to treat homosexual patients but to also say that they are required to provide services to all other people whose behavior strikes them as irreligious or immoral. The extent to which physicians actually decline patients because of a homosexual orientation is not well studied, but some physicians seem to want to do this, and the law would support them so long as there are no specific antidiscrimination laws in place. Many leading professional organizations in medicine counsel against this kind of discrimination, however, but it may be that in certain cases access and equity in health care for gay

Justice for Gay and Lesbian People in Health Care men and lesbians suffer because some health care practitioners do not want to offer their services to them.

CONCLUSION Around the globe, we find homosexual people and transgender people who do not enjoy the legal rights and social status they have so far achieved in the United States and Western European countries. Even though the proposal is unlikely to succeed, in 2009 legislators in Uganda discussed imposing the death penalty on people convicted of homosexuality and sending friends and relatives to prison for not reporting the homosexual people known to them.41 As this example shows, the social standing of gay men and lesbians is far from settled around the world. Putting gay men, lesbians, and transgender people on a legal and social par with everyone else is part of what’s necessary for reducing the obstacles they face in securing justice in health care. Extending the legal right of marriage to same-sex couples will expand the number of people who have access to health care through insurance. The right of men and women to make decisions for domestic partners who become incapacitated will also advance equity for people in those relationships by allowing people committed to one another to make decisions when disability strikes or life draws to a close. When it comes to health care, justice requires access to care and equity in treatment for all. People’s sexual orientation should be treated as a morally irrelevant trait in the delivery of medical care. That moral standard is ultimately good for both practitioners and patients alike. Notes 1. Laumann, Edward O., John H. Gagnon, Robert T. Michael, Stuart Michaels, The Social Organization of Sexuality: Sexual Practices in the United States (Chicago: University of Chicago Press, 1994), p. 293. 2. American Psychological Association, “Answers to Your Questions about Transgender Individuals and Gender Identity,” at: http://www.apa.org/topics/sexuality/ transgender.aspx#. Last accessed: March 2, 2012. 3. 410 Illinois Compiled Statutes 305/9a. 4. 750 Illinois Compiled Statutes 5/212. 5. 755 Illinois Compiled Statutes 40/25. 6. Parker-Pope, Tara, “Kept from a Dying Partner’s Bedside,” New York Times, May 18, 2009. At: http:// www.nytimes.com/2009/05/19/health/19well.html. Last accessed March 2, 2012. 7. Shear, Michael, “Obama Extends Hospital Visitation Rights to Same-Sex Partners of Gays,” Washington Post, Apr. 16, 2010. At: http://www.washingtonpost.

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com/wp-dyn/content/article/2010/04/15/AR201004 1505502.html. Last accessed April 18, 2012. 8. Appel, Jacob M., “May Doctors Refuse Infertility Treatments to Gay Patients?” Hastings Center Report 2006 (36): 20–21. 9. Caplan, Arthur L., “Blood Stains. Why an Absurd Policy Banning Gay Men as Blood Donors Has Not been Changed,” American Journal of Bioethics 2010 (10): 1–2. 10. American Medical Association, Code of Medical Ethics, Opinion 10.05 (Patient Care). 11. Rawls, John., Justice as Fairness (Cambridge: Belknap Press, 1971), pp. 42–43. 12. American Psychiatric Association, Diagnostic and Statistical Manual: Mental Disorders (Washington: American Psychiatric Association, 1952). 13. American Psychiatric Association, Diagnostic and Statistical Manual: Mental Disorders, 2nd ed. (Washington: American Psychiatric Association, 1968). 14. Bayer, Ronald, Homosexuality and American Psychiatry: The Politics of Diagnosis (Princeton: Princeton University Press, 1987), pp. 176, 210 ff. 15. Dunlap, David, “A.M.A. States New Policy on Sexuality,” New York Times, Dec. 25, 1994. 16. American Psychiatric Association, Diagnostic and Statistical Manual, IV-TR (Washington: American Psychiatric Association, 2000). 17. Some commentators have wondered how this differs at all from the idea of “ego-dystonic” homosexuality except in language. Bayer, Homosexuality and American Psychiatry, p. 217. 18. Davison, Gerald C., “Homosexuality: The Ethical Challenge,” Journal of Consulting and Clinical Psychiatry 1976 (44): 686–696. 19. Elliott, Carl, Better than Well: When American Medicine Meets the American Dream (New York: Norton, 2003). 20. American Psychological Association, “Insufficient Evidence that Sexual Orientation Change Efforts Work, Says A.P.A.,” Aug. 5, 2009. At: apa.org/news/ press/releases/2009/08/therapeutic.aspx. Last accessed: May 11, 2010. 21. American Psychiatric Association, Diagnostic and Statistical Manual IV-TR (Washington: American Psychiatric Association, 2000), 302.6, 302.8. 22. McCloskey, Deirdre, Crossings: A Memoir (Chicago: University of Chicago Press, 1999). 23. Transgender Law and Policy Institute. 2007. Non-discrimination laws that include gender identity and expression. At: http://www.transgenderlaw.org/ ndlaws/index.htm. Accessed: May 23, 2009. 24. Diamond, Jeffrey. 2009. Transgendered woman wins sex discrimination case. ABC News, Sept. 19. At: http://abcnews.go.com/TheLaw/Health/stor y? id=5843396&page=1#.T1DouvV-HK0Accessed: March 2, 2012.

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25. Mohr, Richard, Gays/Justice: A Study of Society, Ethics, and Law (New York: Columbia University Press, 1988), p. 156. 26. 1 U.S.C. § 7; 28 U.SC § 1738C. 27. President Barack Obama did extend some benefits to same-sex and opposite-sex domestic partners of federal employees, but that effort did not include health-care benefits and it did not recognize same-sex marriage. Rutenberg, Jim, “Outcry on Federal Samesex Benefits,” New York Times, June 17, 2009. 28. 10 U.S.C. § 654. 29. Kramer, Larry, Reports from the Holocaust, 2nd ed. (New York: Cassell, 1997), p. 5. 30. Murphy, Timothy F., Ethics in an Epidemic: AIDS, Morality, and Culture (Berkeley: University of California Press, 1994). 31. Jodi Sperber, Stewart Landers, Susan Lawrence, “Access to Healthcare for Transgendered Persons: Results of a Needs Assessment in Boston,” International Journal of Transgenderism 2005 (8): 75–91. 32. Council on Ethical and Judicial Affairs of the American Medical Association, Code of Medical Ethics Current Opinions with Annotations, 2004–2005 ed.

(Chicago: American Medical Association, 2004), principle VI, p. xiv. 33. North Coast Women’s Care Medical Group Inc. et al. v. San Diego County Superior Court, S 142892 Ct. App.4/1D045438. 34. Superior Court, S 142892 Ct.App.4/1D045438, §4. 35. Savulescu, Julian, “Conscientious Objection in Medicine,” BMJ 2006 (332): 294–297. 36. Rhodes, Rosamond, “Conscientious Objection in Medicine,” BMJ 2006 (332): 294–297. 37. American Medical Association, Code of Medical Ethics (Chicago: American Medical Association, 1847), chap 1, art. 1. At: http://www.ama-assn.org/resources/ doc/ethics/1847code.pdf. Accessed March 2, 2012. 38. Robertson, John A., “Gay and Lesbian Access to Assisted Reproductive Technology,” Case Western Law Review 2005 (55): 323–72; 353. 39. Robertson, “Gay and Lesbian Access,” p. 354. 40. 745 Illinois Compiled Statutes 30/0.01. 41. Kron, Josh, “Uganda Panel Gives Setback to Antigay Bill,” New York Times, May 8, 2010.

24 Health Care Justice for the Chronically Ill and Disabled A Deficiency in Justice Theory and How to Cure It A N I TA S I LV E R S

INTRODUCTION People with enduring biological conditions that depart dysfunctionally from the species-typical human state are to be found everywhere. Symptoms of such persisting biological deficits may be caused by an immune response of the organism against its own cells, or arise from alleles associated with a disease, or follow upon acute illness or accident, among other etiologies. Individuals with unflagging or recurring symptoms often expect, or at least hope, that their health care provider can supply an accurate diagnosis and prognosis and then offer them effective relief. Due to the nature of their medical needs, however, their lengthy—and likely lifelong— involvement with the health care system should be anticipated. Their role as receiver of services in health care relationships thus is less like an interlude and more like a career. When a person’s biological dysfunction is persistent in this way and (given the current state of medical knowledge) cannot be cured, the individual usually is thought of as being chronically ill or disabled. The very many kinds of dysfunctions that place people in this group can vary enormously from one another, although they are categorized together to distinguish these enduring conditions from the comparatively short courses that resolve acute illnesses. Chronic illnesses and disabilities may be stable, or vulnerable to periodic exacerbations, or inexorably progressive, or may manifest only rarely if a triggering condition obtains. Maintaining the individual’s stability by delaying, defeating, or at least mitigating symptoms often but not always means regular medical surveillance, amplified by routines or episodes of medical

treatment, to abate or regulate manifestations of the deficit. In some cases, however, managing a chronic illness or disability calls mainly for supplies and non-medical services—for example, durable equipment or non-prescription drugs— that are acquired through vendors associated with the health care system. Thus, individuals identified as being chronically ill or disabled belong to a cohort of people subject to long-term care in the broadest sense of this notion, in that they appear destined to be perennial patients, or at least interminate consumers of some of the services, products, or other resources the health care system affords. Aside from this common theme, however, there may not be much uniformity in the capabilities of chronically ill and disabled individuals, nor in their functional deficits or constraints. But this single commonality—which frustrates the traditional presumption that medicine’s preeminent aim is to cure—suffices to prompt problems about both the procedural and the distributive health care justice that chronically ill and disabled individuals are owed. This chapter explores the challenge to theories of health care justice posed by this group of individuals. People with chronic illnesses and disabilities constitute the largest group of users of health care services, and the greatest share of health care dollars is expended on their care. The rare theoretical attempt to address the chronically ill and disabled has focused on their purported differences from acutely ill individuals, proposing that the values pertaining to their health care needs are different from those that should guide ethical treatment in acute cases. To the contrary, I shall argue, it is the divergence in the duration of

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their care that mainly distinguishes this group. But that difference places chronically ill and disabled people at special risk of condemnation for using more than a fair share of health care resources. That some individuals have unending needs for therapeutic intervention makes the question of how much health care over a lifetime each individual is owed especially disquieting. To address this question fairly where people with chronic illnesses and disabilities are concerned, biased assessments of the value of their lives must be resisted. Bioethicists usually speak about pursuing social justice in the domain of health care as if it is a matter of deciding which recipients should remain un(der)served. And prevailing approaches to health care justice focus on restoring patients suffering from sudden severe affliction to so-called normal functioning, introducing a bias against those for whom this is not a plausible prognosis. When accounts of justice make such a presumption about the purpose of health care, the priority of care for chronically ill and disabled individuals seems destined to be compromised. Chronic illness and disability are by definition unwelcome conditions that are unlikely to be resolved satisfactorily, which depletes motivation to provide for the often large or at least long-term resources people perceived to belong to this group are expected to require. Thus these health-related labels construct a disadvantageous social category that deprives people assigned to it by identifying them as undeserving recipients of health care.

WHO ARE THEY? Categorizing Assignments to the categories of “chronically ill” and “disability” are made on the basis of the individual’s deviation from species-typical functioning, as what is thought to be typical biological (both physical and mental) capacity for a species becomes the touchstone for judging species members’ normality of health. Claims about what modes and degrees of human functionality are typical for humans as a species often are (mis)understood to be about the general biology of our species. But in regard to humans, the standard of being “speciestypical” is a conceptual construct that contains both biological and societal references. Generalizations about species-typicality are moving targets, for such claims are relativized to the properties of whatever subset of humans has been observed for the purpose, as well as to the

social organizations within which these subpopulations are functioning when they are observed. Societal context is relevant to assessing functionality because the standard for how people need to function, and with what degree of success they do so, is greatly influenced by the aims and demands of that individual’s social group(s). Thus the same mode or degree of being functional may appear as a deficit in one such social context, as typical or normal for the population in another, and even as a special strength in yet another. In one socioeconomic time or place, individuals with certain functional limitations may be deprived of a few, or some, or most of the usual opportunities, while under other social or political arrangements individuals with the same kinds and degrees of functioning may experience no diminution of opportunity.1 What follows is that the application of concepts like chronic illness and disability—concepts that invoke or rely on standards of “species-typicality” or “normality”—may vary quite markedly from one society or societal context to another. Especially significant for the pursuit of health care justice for chronically ill and disabled individuals is that the assessment of a specific anomalous biological state as being malfunctional—and as a result the facts about the size, the nature, and the needs of the group considered to be chronically ill or disabled—may change quite rapidly as advancing medical knowledge alters the frequency of different states of health across a population.2 In some instances, for example, new therapies decrease or abolish the incidence of individuals who have become chronically ill or disabled as sequelae of certain acute illnesses or types of traumas. Such progress reduces the size of the chronically ill and disabled group. In other instances of acute illness or trauma, however, therapeutic progress merely debars or delays death, turning a terminal disease into a chronic one. In such cases, more patients survive the acute stage but suffer from continuing illness or permanent disability, thereby increasing the members, and sometimes also altering the demographics, of the chronically ill or disabled group. Drugs that maintain the lives of individuals with HIV infections, and machines that offer long-term respiration support to individuals who otherwise could not breathe, are two examples of beneficial therapies that increase the number of chronically ill and disabled individuals by saving people’s lives. As to the current size of the group of chronically ill and disabled people, and the amount of

Health Care Justice for the Chronically Ill and Disabled health care resources its members currently command, in the U.S. nearly one in two adults lives with at least one chronic illness or impairment, more than 75% of health care costs are due to such chronic conditions, and approximately one fourth of adults and children living with a chronic illness or impairment experience significant limitations in daily activities.3 More generally, the management of chronic illness and disability is often said to be a major issue, or even the paramount problem, facing governments across the globe in the 21st century.4 Indeed, the large amount of money required for chronic care was one of the talking points advanced throughout 2009 in pressing for the legislation signed by President Obama in March 2010 to reform the funding of U.S. health care.5

Bioethics of Chronic Illness and Disability Given the large number of persons affected by chronic illness and disability, the lengthy engagements by this kind of patient with health care providers, and the personal and also public burdens thereof, one would expect the problems prompted by their situations to be well probed in the literature on health care justice, with a rich array of resolutions regularly proposed and explored. To the contrary, however, the health care justice literature that addresses this kind of patient is impoverished, and there is little evidence of bioethicists’ intent or interest in focusing on ethical problems posed by chronic illness and disability. A rare exception that represents a failed opportunity for change is the quarter-centuryold6 Hastings Center Report Special Supplement on Ethical Challenges of Chronic Illness (HCR-ECCI).7 In looking beyond the context of acute care, the HCR-ECCI was audacious for its time, but its recommendations nevertheless seem to have made little progress in bringing chronically ill and disabled people into the foreground of concern in discussions of health care justice. That health care’s largest population has been consigned for so long to the margins of justice theory seems feckless. The aim of this chapter therefore is to revisit, and revise from a new perspective, the challenge for health care justice that, according to HCR-ECCI,8 chronic illness and disability creates. In this chapter I shall discard, contrary to HCR-ECCI, the usual understanding that health care for the chronically ill and disabled presents a specialized problem for health care justice. To show that justice for this group must be a commonplace and central concern, I shall review

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information that helps to characterize this population, for the large variety of kinds of conditions to which the concepts “chronic illness” and “disability” apply cannot help but affect our perceptions of the ethical issues that arise in treating people in this category. Next I shall turn to the HCR-ECCI account of how the situation of people who are disabled or chronically ill differs from that of the acutely ill patient. Despite important insights into the problems of some long-term patients and their families, the HCR-ECCI account of them does not do justice to morally crucial components of the conditions that characterize this population. By bringing these conditions into better view, a clearer view of justice for chronic illness and disability will take shape.

CHRONIC ILLNES S AND DISABILITY: DY S F U N C T I O NA L B I O L O G Y Diverse Causes, Diverse Symptoms, Diverse People The causes and symptoms of chronic illness and disability are many and varied, and a very large number of different medical specialties treat them. Some chronic conditions (or at least the tendency to manifest them)—for example, sickle cell disease, cystic fibrosis, achondroplasia in children with an achondroplastic parent, certain kinds of deafness, Lesch-Nyhan syndrome, and schizophrenia—are thought to be inherited, at least in many or most cases. Others—for example, phocomelia, achondroplasia resulting from adventitious mutation, Rett syndrome (usually from adventitious mutation), deafness following fetal exposure to German measles, and Down syndrome—result from alterations during embryonic or fetal development. Still others—such as congestive heart failure, diabetes, traumatic brain injury or spinal cord damage, deafness resulting from administration of antibiotics to a neonate, and dementia attendant on aging—are usually thought to be acquired after birth. Forethought and preventive action can avoid some of these causes or eliminate or mitigate their sequelae. Others require sophisticated knowledge and technology or favorable social and economic conditions so as to dodge or diminish their effects, still others await further medical research into their mechanisms, and some may be inescapable, forever beyond the power of patient or physician. Despite some familiar beliefs to the contrary, chronic illness and disability are not burdens

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mainly for well-to-do societies that have enough excess resources to keep persistently ill or dependently disabled individuals alive. Nor are the biological conditions equated with chronic illnesses found mainly among the elderly. Chronic illness is the most frequent cause of premature death and disability worldwide. According to the World Health Organization, 60% of all deaths are due to chronic illness, and more than 30 million people will have died of chronic illness during a year.9 A substantial share of the chronic disease burden rests on the shoulders of working-age populations (even when “working age” is defined as not extending past 60 years)10 and chronic disease and disability constitute a paramount source of loss of work time everywhere.

Functioning Representatives of this group are found all along the spectrum from intensely independent to profoundly dependent individuals. Justice theory that addresses people with chronic illness and disabilities has tended to focus on those who are at the latter end of the (in)dependency spectrum, and often on patients with cognitive deficits like mental retardation or senile dementia whose kin are drawn into interacting with the health care system due to the family’s focus on these individuals’ care. HCR-ECCI subscribed to this tendency to focus or narrow bioethical concern about chronically ill and disabled people to those kinds who appear least able to be independent. The HCR-ECCI authors explicitly circumscribed their idea of chronic illness to center on individuals who “will require some assistance with the activities of daily living and eventually a substantial amount of nursing and custodial care, either in an institutional setting or in the community.”11 In this spirit HCR-ECCI proposed to reformulate the framework of bioethics to reach out to the ethics of family relationships. The authors called for public support of caregiver families but “without eroding the special sense of familial obligation that is still powerful in our society . . . , and without transforming personal care into an impersonal commodity that is merely . . . sold.”12 But not all chronically ill or disabled individuals involve their families as their caregivers in this way, nor do they need or want to do so. Moreover, the extended family with capable adult members who do not need to work outside the home and who are able to care for ill or disabled dependents, or the very young or very old, is no longer the typical basic social unit.13 Further, chronically ill

and disabled women are more likely to be bereft of family caregivers than are men with similar conditions. For example, “a woman is six times more likely to be separated or divorced soon after a cancer or multiple sclerosis diagnosis than if a man in the relationship is the patient.”14 In sum, receiving family care is neither an essential nor even an evenly distributed component of the situation of chronically ill and disabled people. The ethical, social, and political interests common to “persons with arthritis, diabetes, multiple sclerosis, cystic fibrosis, and Alzheimer’s disease,” which are the medical conditions HCR-ECCI takes to typify chronic illness,15 as well as those of persons with other chronic or disabling biological conditions, thus are unlikely to be fairly served by justice theory that invokes family ethics. Among the several obstacles to identifying ethical, social, and political interests that individuals with chronic health conditions or biological deficits have in common is that being disabled and being chronically ill are not the same. For policy purposes, however, the two categories often are fused. In regard to procedural justice, both are protected identically by laws such as the U.S.’s Americans with Disabilities Act and the U.N. Convention on the Rights of People with Disabilities. And in regard to distributive justice, both groups are covered, usually similarly, by public social insurance and private disability insurance schemes. Some disability scholars complain, however, that programmatic attempts to meld the two groups fail to fuse but instead confuse them. Some argue, for example, that bringing all chronically ill and disabled people under a single procedural justice umbrella aimed at promoting opportunity for social participation gives too much prominence to the “healthy disabled.”16 Others complain that bringing all chronically ill and disabled people into a single distributive justice scheme aimed at ensuring compensatory support gives too much prominence to the “work incapacitated” or the “profoundly dependent.”17 Disability and illness are two different states, although they may overlap because chronic illness can occasion disability. Just as some disabled people have no current health problems, some people with chronic health problems are not disabled, or do not identify themselves as being so. People with chronic illness may manifest no disability when their health conditions are under medical control. For example, some people diagnosed with diabetes qualify their biological state as “normal, but . . .,” thereby creating “a bridge

Health Care Justice for the Chronically Ill and Disabled between health and illness, enabling people to separate their physical health status, perceived as being particularly flawed by having diabetes, from their ‘normal’ social self. The sustained idea of the normality of the embodied and socially embedded self implied that the disease was under control, ensuring its minimal intrusion into social relationships and practical living.”18 Continuing treatment may mitigate an individual’s biological dysfunction so the person encounters no extraordinary difficulties in executing major life activities, but only as long as, and to the degree that, the individual has access to effective medical management. The way multiple sclerosis now can be managed is illustrative. Formerly, multiple sclerosis was thought to be episodic, although sometimes marked by such enduring consequences of acute incidents as paralysis and visual impairment that do not recede. Most patients’ initial experience is with relapsing-remitting symptoms, although for about half the damage eventually becomes progressive in that some symptoms do not remit.19 Other patients may experience a primary progressive form, with symptoms that increase steadily, sometimes quickly but sometimes very slowly over decades. MRI technology now has shown that untreated multiple sclerosis usually involves the progressive accumulation of lesions even during asymptomatic periods. In many cases, regular administration of medication can, however, reduce the occurrence of new lesions and induce old lesions to abate, enabling individuals diagnosed with multiple sclerosis to sustain the remittance of symptoms for decades.20 Thus, individuals with this biological condition may be continuously in treatment for their health problem but nevertheless, thanks to medical intervention, experience negligible or mild diminution of their capacity for performing major life activities or the activities of daily living. They may exhibit no disability at all, or dysfunction may occur mildly and progress slowly over a very extended period of time. HIV infections, diabetes, glaucoma, sickle cell disease, and organ transplant receipt are other examples of biological conditions in which chronic (systematic or episodic) medical intervention can delay, reduce, or prevent disability. Whether or not they experience compromised capacity to execute basic activities of daily living, however, chronically ill individuals typically rely on long-term treatment relationships with physicians or other health care experts.

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In contrast, a disabled person’s ability to execute major life activities may have been compromised by the consequences of past infection, injury, or other mishap, but the cause of the impairment is not expected to recur. To illustrate, a person in robust health may nevertheless be seriously limited in manual activity because of phocomelia caused by his mother’s ingesting thalidomide during his gestation. Although biologically dysfunctional in some respects, the person’s condition does not require further medical intervention or support to have better health or be more well. He is disabled by the disruption of limb development that occurred long ago during his fetal growth, but by no means does this disabling event in his past translate into his being ill now, nor is it appropriate to treat him so. While for some chronically ill or disabled people acquiring the health care they need is like a consuming primary occupation that precludes or erodes other employment, for others health care is a small and incidental part of their life’s routine. People with disabilities not occasioned by chronic illness often take no medication nor need other kinds of medical treatment. Even if they do not directly suffer experiences of ill health, however, values drawn from the medical domain may shape their psychosocial reality. A medical model that labels them as “not normal” influences their social status and therefore influences how others perceive and respond to them. For example, their access to health insurance can be constrained by their being portrayed as unceasing consumers of excessive amounts of health care, even when the facts are otherwise. Disabled people who are not ill do sometimes have an ongoing need for health care–related medications, devices, or services that address sequelae of an illness or injury, although they do not do so by preventing, mitigating, or curing the illness or injury itself. Disabled people’s enduring impairments may require durable medical equipment, orthotics and prosthetics, magnifying mechanisms to enlarge printed texts or enhance the clarity of spoken words, or long-term assistance in executing basic activities of daily life. Although a physician’s expertise may be invoked to document patients’ biological conditions as a way of verifying a physical reason for their dysfunction, other kinds of medical professionals, as well as craftsmen and engineers, usually are called upon to manufacture, select, procure, and provide these assistive devices and services. Individuals who are disabled but not ill thus often rely on

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long-term relationships with technicians, vendors, home health care providers, or personal assistants, rather than on the care of physicians, for the support they need to remain functional. Although these do not deliver medical services, such support currently is regarded as falling under the jurisdiction of the health care system.

The New Normal: No Cure A study of survivors of acute childhood leukemia illustrates the practical necessity, as well as the conceptual uneasiness, occasioned by this tie that binds individuals who are not acutely ill or injured within the framework of medicalized thinking. During the second half of the 20th century, the diagnosis of acute leukemia in childhood came no longer to be a death sentence. But whether effective treatment constituted a cure, or simply a respite for the chronically ill child between acute episodes, was unknown and therefore unclear: “The meaning of cure in this case, however, was problematic, as it was impossible for physicians to be certain that cancer would not return. Changing conceptualizations of leukemia shaped and were shaped by negotiations over the meaning of ‘remission’ and ‘cure’. On the one hand, the statistical definition of cure was not available for years . . . approaches to defining `cure’ in leukemia can be identified. The first relied on statistical assessment of survival rates . . . the concept of ‘indefinite remission’ came to serve for researchers and clinicians as a proxy measure of cure. However, the concept of ‘indefinite remission’ left many patients and their families quite uncertain as to whether a cure had really happened.”21 A second approach to defining cure therefore developed: the notion of achieving a psychological cure that brought forward the moment of cure and its relief.22 Like the previously referenced individuals with diabetes, and despite their own continuing need for medical surveillance and perhaps for future medical services, leukemia patients in remission (with encouragement from their families) sought to escape identifying themselves as unendingly and disruptively ill. For purposes of transitioning from the onset of acute illness or injury through recovery to no better than an unstable outcome, this strategy of psychosocial redefinition of result has come to be shared widely by patients as well as medical personnel. For example, a popular press article on “Living with Cancer” quotes a patient as saying, “Oncologists never use the word ‘cured’ anymore. They say there is ‘no evidence of disease,’ or what we survivors

call ‘NED’. Of course, there are many costs to treatment, physical and mental . . . An expression survivors use is ‘NED’s my boyfriend’. I’m so happy to be dancing with NED!”23 And in the same article a physician specializing in cancer survivorship comments: “physicians shouldn’t talk about patients going back to normal after treatment. We want to find the best ‘new normal’.”24 Patients, their families, and their physicians as well construe normality in terms that typify cancer survivors as they continue on with their lives rather than in terms of people who have never had cancer. These remarks from patient and physician illustrate a point I have often made in my own scholarship: for purposes of social organization, chronically ill and disabled people should not be dismissed as abnormal.25 Normality is not a stable biological standard, but instead is relativized to whatever typicality in day-to-day living can be achieved.

C H A L L E N G I N G AU T O N O M Y : PSYCHOSOCIAL VULNERABILITY Three Misleading Models and the Nature of Chronic Care After the publication of HCR-ECCI in 1988, complaints about the field’s neglect of chronic illness and disability occurred occasionally in the bioethics literature. In 2001, for example, Mark Kuczewski published a target article in The American Journal of Bioethics urging that bioethicists no longer ignore, but instead attend to, the full range of theoretical and practical issues related to disability.26 Fifteen bioethicists responded to Kuczewski’s 2001 call, with several engaging with his contention that the field is drawn to dramatic problems such as allowing or assisting patients to die rather than prosaic problems that arise around the more common kind of patient. For this reason, concerns about the ethical treatment of acute patients have tended to monopolize the field. As Walter Davis, one of these respondents, observed: “healthcare delivery appears trapped within the inevitable and dismal conclusions reached by the acute-care model—namely, that the comprehensive and long-term concerns of the disabled are too complicated and costly for our healthcare system and society.”27 Years earlier the HCR-ECCI authors had contended similarly that the conventional focus of bioethical concern privileges the acute patient.

Health Care Justice for the Chronically Ill and Disabled What is it about the acute care patient’s situation that induces bioethicists to disregard the chronic patient? The prevailing aim of medicine in relating to acutely ill patients is clear, they said. It is to end the relationship by resolving the case. HCRECCI contended that this aim dominates bioethics because the field has acquiesced to accenting the individual. In contrast, HCR-ECCI insisted, to be adequate to the challenge of the growing population of persons who are chronically ill or disabled, bioethics theory must not capitulate to individualism. Doing so invites placing primary value on restoring the patient’s personal liberty, freeing the individual from dependency by removing constraints on activity imposed by poor health. But in the HCR-ECCI view, this end is not available to chronically ill and disabled patients and members of this group are better served by “acknowledgment of the links that join the sick and the well, the young and the old in a community of common humanness and vulnerability.”28 HCR-ECCI dramatically contrasted the paucity of attention given by bioethicists to ethical problems that arise about chronic care against the abundant literature on the ethics of acute care. So it may seem as if these are two different medical worlds populated by different kinds of patients. But that appearance is misleading, for an individual may receive acute care, rehabilitation care, as well as preventive care to debar or delay further acute episodes or the progression of symptoms, all in the course of a life-long chronic illness or while living with a disability. The HCR-ECCI authors executed their strategy for characterizing chronic patients by attempting to adduce how their long-term relationship with health care definitively affects the texture of their experiences and distinctively shapes the histories of their emotional and social lives. HCR-ECCI advanced certain psychosocial conditions attendant on long-term health care system involvement as being common to the chronically ill and disabled. This strategy evaded the difficulty of formulating generalizations that truly encompass individuals who evidence an enormous range of biological conditions with very diverse symptoms, diagnoses, etiologies, and prognoses. Regardless of their different biological conditions, HCR-ECCI hypothesized, enduring life as a long-term user of health care system services affects people psychologically and socially in very similar ways. The basic point pressed by HCR-ECCI was to criticize bioethics theory for its reliance on

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certain models (prevalent in medicine, law, and political philosophy) that appeared to converge to construct an adequate idea of the acutely ill patient, but an inadequate idea of the chronically ill or the disabled patient. The conceptual flaw, according to HCR-ECCI, came from improper control by three models. At fault are (1) the medical model’s way of construing these individuals’ relationship to their own biological deficit, (2) the contractual model’s way of construing their relationship to their health care providers, and (3) the freedom model’s way of constructing their relationship to their families and society in terms of systematic interests and rights.29 According to HCR-ECCI, the perspective shaped by these ways of thinking leads to an “autonomy paradigm” that “is inadequate for chronic care . . . the development of a new bioethics of chronic illness is needed.”30 Yet within bioethics, no subsequent rallying to this call for conceptual reformation has swelled. The 2005 United Nation’s Universal Declaration on Bioethics and Human Rights, adopted nearly two decades after HCR-ECCI was published, clearly advances the “autonomy paradigm.” The U.N. Declaration on Bioethics and Human Rights invokes standard ethical theory, explicitly addressing the interests and welfare of “the individual.” This declaration of international policy emphasizes that benefits to patients and similar “affected individuals” should be central to ethical conduct in medicine. The text also invokes individualistic values like autonomy, individual responsibility, dignity, rights, consent, personal integrity, privacy, and non-stigmatization.31 Parenthetically, the preeminent principle of the 2006 U.N. Convention on the Rights of People with Disabilities similarly emphasizes “Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons.”32

Saving Individuals and Continuity of Care The Declaration’s solitary specific reference to the collective values and communal links on which, the HCR-ECCI authors contended, an ethics adequate to the special challenges of the chronically ill and disabled must be built is to be found in an appeal in Article 13 on “Solidarity”: “Solidarity among human beings and international cooperation towards that end are to be encouraged.”33 From this feeling of comradeship or union among humans what some bioethicists have called the “rule of rescue” seems to emerge.34 This is a sense of duty or proactive proclivity that inspires

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support for saving an individual’s life, or delivering an individual from severe suffering, despite the cost ineffectiveness of the humane action.35 Thus, rescues of hikers lost in mountain snowstorms, miners trapped deep in the ground, children fallen into wells, and even kittens trapped at the top of telephone poles and ducklings tumbled into storm drains, are carried out and applauded with little thought to cost. Health care professionals may be moved by a similar persuasion when they feel driven, regardless of the amount of resources to be expended, to cure patients who present with life-threatening or other serious illness or trauma.36 Applied beyond emergencies, however, the rule of rescue presumably should proscribe abandoning patients for whom attempted cures do not fully succeed.37 The rule’s corollary thus should call for commitment to continuity of care. The idea of continuity of care applied to chronically ill and disabled individuals supports smooth transition from providing acute care to save people’s lives or reduce the severity of their illnesses or injuries to offering the same individuals chronic care for biological deficits that are outcomes of the initial illnesses. Continuity of care obligates health care professionals and the health care delivery system to individual patients based on the history of their relationships. To illustrate, administering antibiotics to a preterm neonate may fight infection, enabling the child to live, but with seriously impaired hearing resulting from secondary effects of the antibiotics. Continuity of care argues that what the child needs in the future to mitigate her chronic hearing dysfunction should be provided for by the same medical system that mitigated her acute respiratory dysfunction, as an extension of the same commitment invoked in establishing the initial obligation to provide acute care.

The Medical Model and Autonomy This familiar point of view plausibly presumes that from the acute incident to her recovery and forward through her years of growth there is a single child with a continuous self, and that her hearing dysfunction, while a factor in her development, is not so essential to her personality or identity that by becoming hearing impaired she is no longer the same self. HCR-ECCI contended, to the contrary, that there is an abrupt disconnect between a person’s acutely ill and chronically ill selves. The former is to be understood from a medical perspective. On the medical model,

acute illness is experienced as alien to the person’s self, a disruptive invader that must be repelled. Health care professionals investigate to identify the source of threat and intervene to restore the person to the antecedent degree of well-being, which the medical model presumes requires a return to full health.38 On HCR-ECCI’s account of the medical model,39 illness is understood to preclude selfdetermination. The point of curing patients is to restore the liberty of thought and action that illness inexorably compromises. In contrast to acute care, care for chronic illness should aim not at attaining a cure by expelling illness but instead at integrating it into the individual’s life. Indeed, on the HCR-ECCI account, the illness or disability is an essential aspect of the person’s later self and therefore should inflect the perspective from which members of the class are viewed. Rather than making biochemical or surgical interventions the focus of medical interventions, according to HCR-ECCI health care for the chronically ill and disabled should apply psychosocial techniques to dissuade chronically ill and disabled people, their families, and society in general from separating long-term patients’ conceptions of themselves from their health deficits. The benefit proposed here is that chronically ill and disabled individuals need to accede to having their deficits managed, rather than futilely attempting to escape from them.40 Picturing such discontinuity in the patient’s persisting self diminishes the forcefulness of the continuity of care commitment, however. Granted, the HCR-ECCI notion of the chronically ill self does not deceptively distance affected selves from their illnesses or disabilities. But the chronically ill self is distanced from the acutely ill one, even though these different kinds of selves are nothing more than different stages in the life of the same individual. Further, if the earlier self commands a commitment from others to provide health care for the purpose of restoring self-determination, as HCR-ECCI had it, it is hard to see why a later self, who is so resigned to constriction of liberty as to have made limitation a feature of character, should pursue or receive a similar level of commitment to liberating medical care. Yet chronically ill individuals regularly invoke the principle of continuity of care in asking for medical support that maintains or improves their residual functioning. Nor is the medical model distinctive in valuing freedom. Its antithesis—the social model—is

Health Care Justice for the Chronically Ill and Disabled equally emphatic in this same regard. Unlike the medical model, the social model supposes that being biologically anomalous, and even dysfunctionally so, is compatible with freedom. Social arrangements are held to be at fault when being biologically deficient becomes equated with being barred or bound. In this last point lies the social model’s contrast with the medical model, which traces such lack of liberty not to societal disregard and exclusion but to the person’s being biologically anomalous and therefore to the person’s own self.41 However important may be the autonomous self to individuals who are acutely ill or injured, autonomy—the ability to self-determine one’s personal good—has a similar standing for chronically ill and disabled individuals. (Parenthetically, it is difficult to reconcile the HCR-ECCI characterization of acutely ill patients as unfree with the common expectation that people who are ill still can and should make autonomous decisions, exercising self-determination by consenting to or declining treatment.) At this point in our discussion, advocates for people with cognitive disabilities may start to worry that, short of rejecting the autonomy paradigm, the lives of people who appear unable independently to formulate complex thoughts, or who do not have highly developed executive functioning, may be dismissed as valueless or of reduced value. For, it may be mistakenly supposed, individuals with such conditions as Alzheimer’s disease or Down syndrome cannot achieve autonomy regardless of the amount of effort expended to enable their freedom because they do not conduct themselves independently. To the contrary, as Leslie Francis and I have pointed out in detail in several places,42 it is by no means unusual for people generally to depend on each other for help about what they should (agree to) do, and even to be deeply influenced by others, without being thought to be bereft of liberty or to sacrifice their autonomy.43 People in general are cooperating agents in constructing their different goods and as such depend on each other in important ways. We have shown that “for all of us and not just for cognitively disabled people, conceptions of the good are socially scripted and interactively developed.”44 Nor should people with cognitive disabilities who depend on others for articulation of their ideas forgo this same liberty.45 That a cognitively impaired person may be unable to formulate or articulate feelings or preferences as ideas, or communicate them coherently, need not preclude formulation of a personalized

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idea of the good that centers on the person’s own persuasions. The process is a collaborative one, but the collaborator does not claim to step into the subject’s role. “Instead, as a prosthetic arm or leg executes some of the functions of a missing fleshly one without being confused with or supplanting the usual fleshly limb, so . . . a trustee’s reasoning or communicating can execute some or all of a subject’s own thinking processes without substituting the trustee’s own idea as if it were the subject’s own.”46 As Eva Kittay and Licia Carlson underlined in commenting on our theory, “such collaboration in formulating and articulating a conception of the good is continuous with the way we all form our conceptions of the good.”47 The self-determination prized by the autonomy model is equally a value for all.

The Contractual Model and Autonomy The HCR-ECCI authors also rejected the autonomy paradigm’s account of how patients and health care providers should relate: “According to this view, which is often called the ‘contractual model’ of medical care, the patient is a rational, self-interested subject who, threatened by illness, voluntarily enters into a contractual agreement with a physician (or other health care provider) and temporarily submits himself or herself to medical authority in order to combat the illness.48 . . . It is the social contract of the liberal polity writ small— a structure of reciprocal rights and obligations voluntarily entered into by both parties in order to achieve goals together that neither party acting alone could achieve.49” This model makes sense for acute care relationships, the HCR-ECCI authors acknowledged, because respecting patient autonomy is compatible with restoring the patient to full functionality and fully curing the disease or completely healing the injury.50 But the outcome for the chronically ill patient necessarily is different, they contended, so the aim of the health care professional must differ as well in view of the lack of clarity about the disease process, the variability and uncertainty of clinical symptoms, “and the manifest lack of magic bullets to cure the illness.”51 According to HCR-ECCI, the aim of medicine in cases of chronic illness and disability is to facilitate the person’s process of negotiation in making adjustments, replacing former plans and aspirations with new ones, and to “assist persons with chronic illness as they ride this emotional roller coaster.”52 In the course of chronic illnesses, on this picture, the health care professional offers psychosocial therapy, very often while relying on

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“the patient and family members to carry out long-term drug and rehabilitative therapies.”53 Because chronic patients bring “a wide variety of styles” to the role, they forge “an equally diverse set of relationships with physicians,” and so “the rationalistic quid pro quo of the contractual model seems thin and unrealistic.”54 The HCR-ECCI objection to the contractual model therefore seems to be that, unlike acute care, where autonomous agents agree to enter into the role of passive patient and in return physicians cure them,55 chronic patients are not expected to give over management of their lives to health care professionals in the all-encompassing global way that, at least in the short-term, hospitalized acute patients do. Nor are physicians expected to cure chronic patients. The considerations the parties appear to agree to exchange with one another for the purposes of giving and receiving acute care thus are not in evidence when chronic care is sought or offered. Thinking that contractual relationships require such an exchange of consideration between the parties is a mistake, however. To think so is to commit a fallacy of composition, wrongly inferring that what is true of some contracts is true of all. Contracting is basically a process of people developing bonds of confidence with each other, and the format in which the parties must trade concessions with each other for there to be a stable agreement is only one of several variations on the process. Thus, contrary to HCR-ECCI, chronic care may rest on contractually modeled relationships, albeit not ones that require even exchange. The interpersonal processes associated with contracting construct mutual understandings that facilitate trust. Parties—especially those who relate to each other from positions of very different power—may be bound though such agreement about one party’s future performance, even though the other party is not correspondingly required to perform.56 Contracting shapes conditions that, given the parties’ differences, enable their enduring collaborative interaction. Contracting properly understood seems therefore to adequately model the foundation of the long-term cooperation that chronic patients need to forge with health care professionals. In both acute care and chronic care, patients approach dealing with their conditions in many different ways, as do health care professionals in dealing with their patients. What patients and professionals in both acute and chronic care have in common, however, is that they are potential

cooperators despite differences in their respective powers. That patients and professionals respect the other’s self-determination, as the autonomy paradigm decrees they should, and do not demand compliance but instead seek to forge commitment, contributes to the stability of collaboration between patient and health care professional just as, more generally, each citizen’s respecting other citizens’ liberty contributes to the stability of the state.

The Freedom Model and Dependence on Families The final complaint HCR-ECCI levied against the autonomy paradigm is somewhat more difficult to understand and articulate. This has to do with locating interests in and obligations for providing chronic care in the individual57: “chronic illness provides a context in which the shortcomings and limitations of an individualistic conception of the person become particularly apparent.”58 For HCRECCI, an important fundamental difference between acute and chronic health care provision lies in the large part families play in the latter but not in the former: “chronic illness challenges the normal moral boundaries of caring and conventional expectations about the caregiving duties of the family in relation to the social welfare obligations of the state.”59 According to the HCR-ECCI view, promotion of individual freedom is taken to threaten the practice of relying on families to care for chronically ill or disabled members: “Should we, in the name of individual autonomy both for the chronically ill and for family members, move toward replacing family based care with such innovations as group homes, programs to encourage independent living, professionalized home care services, and greater access to long-term care institutions for those needing only unskilled nursing and ‘custodial’ care? Should we as a society come to see chronic care as exclusively a public responsibility, and remove this function from the private lives of families altogether?”60 Why the autonomy paradigm should be thought to exclude consideration of family contributions just from the process of providing chronic care is unclear. Family contributions have roles in the acute-care context as well. For example, families often are called upon to take an important part in implementing an important autonomypreserving protocol. When individuals cannot express competent consent or rejection of treatment for acute conditions and have not previously

Health Care Justice for the Chronically Ill and Disabled executed records of their preferences, an account of the patient’s individualized view of the good should be constructed. The standard procedure in such an event is to turn to the family, asking family members to affirm what the individual would desire. Thus there is a striking similarity about the place of families in situations of acute and of chronic care. Whether family members are available and able to participate in the health care situation is equally adventitious in both contexts. While it is deeply desirable to be able to rely on an acutely ill or injured patient’s family to make difficult decisions when the patient cannot, family members sometimes can’t be found or, if located, decline to accept the responsibilities of surrogate decision-maker. As observed earlier, chronically ill and disabled individuals similarly do not always have family members able and willing to assist them. Some chronically ill and disabled individuals are rich in family willing and able to give unpaid care, just as some acutely ill individuals are replete with family willing and able to be accountable for consenting to or foregoing treatment for them, but the availability of resources of the former kind is as irregular as that of the latter kind. Equally for acute and for chronic patients, therefore, health care justice theory should be responsive to them as individuals rather than as components of family units.

CHRONIC ILLNES S AND THE CHALLENGE FOR SOCIAL JUSTICE Specifying the Challenge HCR-ECCI claimed that “chronic illness challenges our understanding of social justice and community, as these ideals are reflected in society’s response to different kinds of health care and social service needs.”61 Yet the examination conducted in this chapter has revealed more similarities than differences between acute and chronic care. Liberty, in the form of the freedom to determine and have respected one’s view of the good for one’s self, is important for both acute and chronic patients. Trust and cooperation that build mutually agreed understandings within the health care system similarly are important for both. Participation of patients’ families is helpful in, but cannot be necessary for, either acute and chronic care. And patients who receive both kinds of care remain the same selves despite making the transition from the acute to the chronic condition.

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The HCR-ECCI analysis of chronic illness and disability failed to discern properties that people in these health states both have in common but do not share with people who are acutely ill. The arguments offered above counter the HCR-ECCI contentions about chronic care being deeply different in nature from acute care, about chronic patients having different sorts of selves from acute patients, and about their relating to health care professionals in distinctly special ways. Thus we are brought back to the obvious way of differentiating the chronically ill and disabled from other kinds of patients and subsequently from other sorts of people. Acute care is a comparatively short-term relationship between an individual and the health care system, whereas chronic care is a long, and very often a lifelong, one. Focusing on this distinction acknowledges that receiving health care services occurs during a much longer part of the lives of some people than of others, which raises the practical policy question of how much health care over a lifetime each individual is owed. A standard answer is that what is owed each one depends on the value of that person’s life. Those who suppose the lives of disabled and chronically ill people must have less value than others must conclude that members of this group also deserve lower priority for allocation of health care resources. Schemes to apply scales such as qualityadjusted life-years or disability-adjusted life-years that purport to quantify over the subjective or objective caliber of individuals’ lives are examples of distributive policy approaches that definitively devalue life with a chronic illness or disability by reducing recipients’ worthiness when their care is not a cure.62 The same sort of bias skews health care allocation exercises such as person tradeoffs that turn on comparisons of the value of time lived with and without unusual biological limitations.63 Such metrics privilege the individual whom health care services can cure over the one who can be maintained but not cured, regardless of whether they value their own lives equally and others value them equally as well. Proponents of allocation schemes that presume the lives of the members of the chronically ill and disabled group are less valuable than others and that they therefore are less deserving of health care than other people sometimes deploy a “selfincrimination” argument to propel their point of view. Peter Singer, for example, claims that individuals with functional deficits themselves desire to be cured, and so should admit that living with

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endless illness or disability is not as valuable as living without them. He calls upon these people to concede that health care resources should not be expended to support their own kind of disabled living but instead should be invested in preserving the unimpaired kind of living that is unattainable for them.64 This argument rests on a mistake, however: falling short of ideal does not make something valueless. An analogous case will illustrate the mistake. John Doe’s ideal is to be working; living with unemployment is not as valuable to him as life with a fulltime job. But it is not inconsistent for him to prefer working part-time to not working at all. To charge that preferring to improve one’s functioning denies the value of one’s current capacities or life is to create a false dilemma. Further, to assign distributive priority to those elite individuals who are most able to secure ideal lives dismisses, and is likely to stir resentment in, many citizens beyond chronically ill and disabled ones.65

CONCLUSION Health care justice is hobbled practically as well as in principle by a system that fails to give the large population of chronically ill and disabled individuals equitable procedures to advance their interests in securing health services. For example, the more effective individuals are in maintaining their health, the longer their lives are likely to be and the period of their extreme old age more prolonged.66 Living into ripe old age creates more chance of developing chronic health problems, however, so a system that treats chronic cases inequitably discourages individuals from taking care of themselves, which seems counterproductive for a health care system. Further, acute patients are not likely to struggle to contain costs under the pressure of seeking effective critical care. Acute patients usually are not propitiously situated to compare prices of competing providers’ services, while chronic patients, contemplating repeated usage, have both the motivation and time to do so. These observations indicate some of the benefits that a theory of health care justice centered on chronically ill and disabled people could bring. That their health care system respects recipients’ individualized standpoints, and provides for patients to relate freely to and build mutual confidence with the professionals who care for them, is of similar importance for acute and for chronic patients. No bright ethical line divides the former

from the latter, nor is individualism benign on one side of the acute/chronic divide but vicious on the other. What distinguishes these domains from one another seems to be the ethically neutral long duration of chronic care. Thus, it seems fairer by far to consider how much responsiveness from the health care system is owed equally to each person over a lifetime than to prefer some of us over others of us based on the kind of patient the recipient is (acute or chronic), the kind of health problem the person experiences (short term and curable, short term and mortal, long term stabilized, long term episodic, long term deteriorating), or the kind of health care service the person needs (expensive in the short run, expensive over the long run, and so on). Rationing systems that constrain access by denying drugs, equipment, or procedures associated with long-term needs penalize arbitrarily, for they injure only whoever happens to be in need of services to which a low priority is assigned. In a system that considers lifetime costs, major differences in people’s lifetime needs could be addressed by protecting everyone equally against catastrophic expense, whether the extraordinary exigency is for an extortionate one-shot restorative cure or a protracted costly course of maintenance services.

Notes 1. See Silvers, Anita, “Formal Justice” in Silvers, A., Wasserman, D., and Mahowald, M., 1998, Disability, Difference, Discrimination: Perspectives on Justice in Bioethics and Public Policy, Lanham, Maryland: Rowman and Littlefield 2. For an illustration, see Silvers, Anita, 25 GA St. U. L. Rev. 1061: “Playing God with Baby Doe: Quality Of Life and Unpredictable Life Standards at the Start of Life”, for an account of the shifts in the chronically ill and disabled neonate population, and attendant alterations in the issues involved in ethical decision-making, that have been occasioned by advances in medical knowledge about treating low-birth-weight and preterm neonates. 3. “Chronic Diseases—The Power to Prevent, The Call to Control: At a Glance 2009,” on the U.S. Centers for Disease Control’s webpage entitled “Chronic Disease Prevention and Health Promotion http://www. cdc.gov/chronicdisease/resources/publications/AAG/ chronic.htm, last visited June 19, 2010. 4. See the following for general information about the worldwide incidence of chronic illness and disability: Nolte E, McKee M: Caring for people with chronic conditions: A health system perspective. Berkshire, England: McGraw Hill Open University Press; 2008;

Health Care Justice for the Chronically Ill and Disabled World Health Organization: Innovative care for chronic conditions: Building blocks for action: Global report. Geneva: World Health Organization, 2002; Mathers C, Loncar D: Updated projections of global mortality and burden of disease, 2002–2030: data sources, methods and results. Geneva: World Health Organization (Evidence and Information for Policy Working Paper), 2005; Lopez, Alan D., & Christopher C.J.L. Murray, “The global burden of disease, 1990–2020” Nature Medicine 4, 1241–1243, 1998. 5. See, for example, the Obama administration’s posting of “Health Insurance Reform Reality Check” at http://www.whitehouse.gov/realitycheck/faq, last visited July 5, 2010. 6. Caplan, Arthur, Bruce Jennings and Daniel Callahan, The Bioethics of Chronic Illness, The Hastings Center Report, Special Supplement: Ethical Challenges of Chronic Illness, Volume 18, March 1, 1988, pp. 1–16. 7. See Silvers, Anita, “Judgment and Justice: Evaluating Health-care for Chronically Ill and Disabled Patients.” In Rhodes, Rosamond, Anita Silvers and Leslie Pickering Francis (eds.), The Blackwell Guide to Medical Ethics. Malden, MA: 2007, pp. 354–372 8. Hastings Center Report, pp. 3–6. 9. WHO website on Programmes and projects > Chronic diseases and health promotion at http://www. who.int/chp/en/ 10. http://www.oxha.org/initiatives/economics/ chronic-disease-an-economic-perspective 11. Hastings Center Report, p. 7. 12. Hastings Center Report, p. 7. 13. Redwood, Heinz. Why Ration Healthcare? London: Civitas, 2000. 14. Chamberlin, Marc, and Michael Glanz. “Gender Disparity in the Rate of Partner Abandonment in Patients with Serious Medical Illness,” Cancer, v. 115, i. 22, 7/30/09 (online edition): 5237–5242. 15. Hastings Center Report, p. 6. 16. Wendell, Susan, “Unhealthy Disabled: Treating Chronic Illnesses as Disabilities” Hypatia 16(4): 17–33, 2001. 17. See Silvers, Anita, “Formal Justice” in Silvers, A., Wasserman, D., and Mahowald, M., 1998, Disability, Difference, Discrimination: Perspectives on Justice in Bioethics and Public Policy, Lanham, Maryland: Rowman and Littlefield. 18. Naemiratch, Bhenari, and Lenore Manderson, “ ‘Normal, but. . .’: living with type 2 diabetes in Bangkok, Thailand,” Chronic Illness, Vol. 4, No. 3, 188–198 (2008). 19. Grady, Denise. “From M.S. Patients, Outcry for Surgery.” New York Times, June 29, 2010, pp. D1 and D4: D4. 20. See “Understanding MS.com” at http://www. understandingms.com/, last visited June 18, 2010.

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21. Barnes, Emm. “Between remission and cure: patients, practitioners and the transformation of leukaemia in the late twentieth century,” Chronic Illness Vol. 3, No. 4, 253–264 (2007): 253 22. Loc. cit. 23. Newman, Judith. “Living After Cancer,” Parade, Sunday, June 20, 2010, pp 4–5: 5. 24. Loc. cit. 25. Silvers, Anita. “On the Possibility and Desirability of Constructing a Neutral Conception of Disability”, Theoretical Medicine & Bioethics, 24, 471– 487 (2003). 26. American Journal of Bioethics, 1(3), Summer 2001: pp. 36–44, and see this issue to read 15 responses made by different bioethicists to this target article. Two years later Kuczewski edited (with Kristi Kirschner) a special journal issue on bioethics and disability: Theoretical Medicine and Ethics, 26(6)/November 2003. 27. Davis, Walter S. “Disability and Bioethics: Removing barriers to understanding and setting the agenda for a new conversation.” In American Journal of Bioethics, loc. cit.: 64–65. 28. Op. cit,. p. 15. 29. HCR-ECCI explicitly references “the medical model” (3) and “the contractual model” (8). I introduce the expression “freedom model” for the way of construing political relationships within the family and more generally within society that takes agents’ liberty from the organization to be of central value. I use this expression because HCR-ECCI argues that chronic illness imposes long-term, and often inescapable, “unfreedom” on both patients and their families, in contrast to acute illness, where “unfreedom” is temporary (9). The HCR-ECCI authors take this distinction to mean that, unlike in acute illness, in chronic care— thus for chronically ill individuals, their families, their health-care providers, and society generally—“freedom and constraint . . . intertwine and become symbiotic” (11). 30. Hastings Center Report, p. 4. 31. UNESCO webpage on Universal Declaration on Bioethics and Human Rights, http://portal.unesco. org/en/ev.php-URL_ID=31058&URL_DO=DO_ TOPIC&URL_SECTION=201.html, last visited June 19, 2010. 32. See the text of the convention at http://www. un.org/disabilities/default.asp?navid=14&pid=150. The quote is from Article 3, General Principles, p. 5. 33. Loc. cit. 34. See Crookson, Richard, and Paul Dolan, “Principles of justice in health-care rationing.” Journal of Medical Ethics 2000;26:323–329, 324 for discussion of interpretations of the “Rule of Rescue”. See also Harrison, Stephen, and Michael Moran, “Resources and Rationing: Managing Supply and Demand in

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Health Care,” in Gary Albrecht, Ray Fitzpatrick, and Susan Scrimshaw, Handbook of Social Studies in Health and Medicine. London: Sage Publications, 1999, pp. 493–508. 35. McKie, John, and Jeff Richardson (2003) “The Rule of Rescue.” Social Science & Medicine 56(12), June 2003, pp. 2407–2419. 36. Nord E, Richardson J, et al. Who cares about cost? Health Policy 1995;34:79–94: 90. 37. Various proposals of the role of the rule of rescue in health-care rationing systems are made in other chapters of this volume. 38. Hastings Center Report, p. 10. 39. For a thorough discussion of both the medical and social models, see Silvers, Anita. “The Social Model of Disability,” in Philosophical Reflections on Disability, ed. Chris Ralston and Justin Ho for the Philosophy and Medicine series, Springer Academic Press, 2009: 19–36. 40. Hastings Center Report, p. 10. 41. Silvers, “The Social Model of Disability,” loc. cit. 42. For example, Francis, Leslie P., and Anita Silvers, “Liberalism and Independently Scripted Accounts of the Good: Meeting the Challenge of Dependent Agency,” Social Theory and Practice (Spring 2007): 311–334. 43. Francis, Leslie, and Anita Silvers, “Thinking About the Good: Reconfiguring Liberal Metaphysics (Or Not) for People with Cognitive Disabilities.” In Kittay, Eva, and Licia Carlson (eds.), Cognitive Disability and Its Challenge to Moral Philosophy. Oxford: WileyBlackwell, 2010:237–259: 246. 44. Francis, Leslie, and Anita Silvers, “Liberalism and Individually Scripted Ideas of the Good: Meeting the Challenge of Dependent Agency,” Social Theory and Practice, 33, 311–344. 45. Ibid. 46. Op. cit. 247. 47. Hastings Center Report, p. 14. 48. Op. cit., 8. 49. Op. cit., 9.

50. Ibid. 51. Op. cit., 10. 52. Ibid. 53. Ibid. 54. Ibid. 55. Loc. cit., 9. 56. Silvers, Anita, and Leslie P. Francis, “Justice Through Trust: Resolving the Outlier Problem in Social Contract Theory,” Ethics 116:40–77 (2005): 65 57. Hastings Center Report, p. 8. 58. Ibid. 59. Hastings Center Report, p. 4. 60. Hastings Center Report, pp. 12–13. 61. Hastings Center Report, p. 4. 62. See Silvers, Anita. “Predicting Genetic Disability While Commodifying Health,” in Quality of Life and Human Difference, ed. Jerome Bickenbach, Robert Wachbroit and David Wasserman. Cambridge University Press, 2005, pp. 43–66. 63. Ibid. 64. Singer, Peter. “Why We Must Ration Healthcare.” New York Times Magazine, July 15, 2009, pp. 1–5: 5 at h t t p : / / w w w. n y t i m e s . c o m / 2 0 0 9 / 0 7 / 1 9 / magazine/19healthcare-t.html?pagewanted=1&_r=1, last visited July 9, 2010. In support of his appeal to the intuitions of people with chronic illness and disabilities, Singer cites only one example, that of Christopher Reeve, a controversial figure in the disability community because of his focus on being cured. 65. For a summary of some recent research about psychological responses to perceived unfairness, see Barash, David. “Hey, Wait A Minute!”, The Chronicle Review (Section B of The Chronicle of Higher Education), July 16, 2010: B8–9. 66. Wei Sun, Anthony Webb, and Natalia Zhivan. “Does Staying Healthy Reduce Your Lifetime Health Care Costs?” webpage of Center for Retirement Research at Boston College, posted May 2010. Last visited July 13, 2010. http://crr.bc.edu/briefs/does_staying_healthy_ reduce_your_lifetime_health_care_costs.html

25 Getting from Here to There Claiming Justice for the Severely Cognitively Disabled1 E VA F E D E R K I T TAY

THE PROBLEM: JEFF MCMAHAN’S QUESTION “The fact that you, Eva Kittay, have a relationship with your daughter doesn’t necessarily give other people the same set of reasons that you have to treat your daughter in certain ways. The question is: What is it about people like your daughter that makes moral demands on other people that nonhuman animals can’t make any of us?”2 This question was posed to me in an interchange between the philosopher and bioethicist Jeff McMahan and myself. The daughter referred to is Sesha, who has severe cognitive disabilities (SCD). The answer I will develop here will be that while it is true that the fact that I have a relationship with my disabled daughter doesn’t necessarily give other people the same set of reasons to treat my daughter in certain ways, the fact of that relationship itself offers reasons for why people like my daughter can make moral demands on other people that nonhuman animals cannot make. My relationship to my daughter makes the same moral demands for protection and access to resources that are due anyone’s child and that are required of an adequate principle of justice. The position of McMahan(1996, 2003, 2008a, 2008b, 2010), Singer (Singer & Kuhse 1985, Regan & Singer 1989, Singer 1994, 2010) and some other defenders of animal rights is that people with cognitive impairments, such as my daughter, are no more due the protections and entitlements of personhood than other nonhuman animals (some of whom may even have a greater claim because of their advanced cognitive capabilities) because they lack the capacities that are requisite to the moral status of personhood. Among these are psychological capacities necessary to create a narrative of one’s life, the ability to anticipate death, the capability to form projects that would be frustrated by one’s premature death, the aptitudes needed to appreciate finer pleasures such as aesthetic and intellectual productions, and so forth.

McMahan’s arguments are based on a set of metaphysical arguments about the identity of persons across time slices and on a set of assumptions about what constitutes comparable “objective” measures of well-being. His ethical framework is utilitarianism with a two-tiered morality: one for persons and one for other sentient creatures. Persons, on this account, can command a higher threshold of protection against violation and make claims on society’s material goods and services by virtue of possessing certain psychological properties. From a utilitarian standpoint, these capacities give persons the possibility for greater pleasure or more utility than nonpersons, and therefore it is better, from an objective point of view, to protect these lives than the lives of nonpersons (McMahan 1996, 2003). Given such a conception of personhood and utilitarianism, there are no grounds on which people with the “radical cognitive impairments”3 have any claims to justice on those to whom they do not stand in a special relationship, such as child to parent. The form of McMahan’s question is important. He asks whether there is “anything about my daughter” that would give her such claims on those not in a special relationship to her. That is, he begins and ends his considerations with those intrinsic features that he takes to constitute personhood. Admittedly, it is a beginning and ending point for most philosophical treatments. So let us too begin there. But before we do, it is worth considering an anecdote the anthropologist and evolutionary biologist Sarah Hrdy recounts to introduce her radical revision of the evolutionary account of human’s ability to socially cooperate. A tourist, lost in Vermont, asked directions from a local: “ ‘If I were aiming to go there,’ replied the crotchety New Englander, ‘I would not start out from here’” (Hrdy 2009, p. 30). If we are looking for a theory that will not exclude individuals like my daughter—that is, if we are looking for a theory of the moral obligations

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we owe others within a just society that is inclusive—then we will not get there by starting with a list of the intrinsic properties that are requisite for moral personhood. That, at least, is the argument I will sketch in the first section of this chapter. In the second part, I will offer a different starting point that should offer another view of the matter. Let us begin by restating McMahan’s question as follows: Why should persons not in a special relationship (such as a parent) to an individual with SCD (that is, individuals who apparently lack capacities for rational deliberation and other psychological properties requisite for personhood) have any reason to recognize such an individual as a moral equal to whom justice is due?

S TA R T I N G F R O M H E R E I will look at arguments that employ one of the following three starting positions—all of which reflect traditional initial assumptions. The first of these bases justice on the moral equality of humans given their rational nature. The second presumes the equality of independent parties who enter into cooperative schemes for mutual advantage. The third depends on a benchmark of equal distributive shares as definitive of a just society. Adopting any of these three starting points usually requires innovative moves in order to be able to include people with SCD in a just distributive scheme. Do they get us far enough? S TA R T I N G F R O M H U M A N S A S E Q UA L A N D R AT I O N A L The default assumption of any modern theory of justice is that justice should be accorded to all moral equals. If all humans are moral equals, then justice is due to all human beings. As people with SCD are human, justice is due to them. The difficulty arises, however, when the grounds for including all and only humans within the scope of justice is questioned. In fact, philosophers shy away from criteria for just treatment as based solely on naturalistic features such as biological species membership. Martha Nussbaum puts this characteristically philosophical position this way: The notion of human nature in my theory is explicitly and from the start evaluative, . . . among the many actual features of a characteristic human form of life, we select some that

seem so normatively fundamental that a life without any possibility at all of exercising one of them . . . is not a fully human life, a life worthy of human dignity, even if the others are present. (Nussbaum 2006, p. 186)

The position is, however, most closely associated with Kant, for whom the moral law was to be applicable to all rational beings: “the basis of obligation must not be sought in the nature of man . . . but a priori simply in the conception of pure reason” (Kant 1998, Preface). The empirical conditions and capacities of human beings belong to anthropology, but matters of morality derive from what is known a priori about rational beings. The kingdom of ends is not a kingdom of men qua empirically identifiable human beings, but of rational beings. We should not infer, however, that Kant would have approved of mistreating people with impaired capacities for practical reasoning. One argument on Kantian grounds is that it would not be permissible to mistreat humans with SCD for the same reasons that Kant believed we ought not to treat animals cruelly: because it “weakens and gradually uproots a natural predisposition that is very serviceable in one’s relations with other human beings” (Groundwork AA 6:444). He argues that we have duties with respect to animals and not to animals. Similarly one could argue that while justice is not due to humans with significantly impaired rational faculties, it would not be permissible to treat them badly because of what we do to our own character and the ways in which we undermine our “our natural predispositions” to act correctly in our dealing with other rational beings.4 This position, we can note, is identical to that of the utilitarian position we are attempting to refute. No more is owed to my daughter than what is owed to an animal: namely that we do not treat either cruelly. But while merely avoiding cruelty would, as a matter of fact, be an improvement on the treatment many people with SCD (or for that matter mild cognitive or any physical disabilities) have suffered at various times, it is far less than I, as a mother, would wish for her or any child. There is another reason that Kant might deem it impermissible to mistreat people with SCD, one that would, in fact, necessitate that we treat all humans, regardless of their individual capacity to reason, as ends in themselves. This is because Kant held that it is rational nature itself that exists as an end in itself, and that human beings are

Getting from Here to There by nature rational regardless of the particular faculties of any specific human being. Insofar as an individual belongs to the natural kind “human beings,” and insofar as this natural kind is characterized by its rational nature, we are compelled to treat that individual, regardless of his or her faculties, as an end in itself. What Kant states is that we must treat “humanity, whether in your own person or in that of anyone else, always as an end and never merely as a means.” It is not the individual as such but the humanity in the individual that we treat as an end in itself, and thus the actual capacities of this individual do not matter. On these Kantian grounds there is a simple answer to McMahan’s question about what it is about my daughter that can make demands on another that a nonhuman animal cannot make: it is her humanity. And Kant would add that that humanity is an instance of the only thing that is an end in itself, rational nature. Might not Singer or McMahan say that appeal to such an argument is question begging? What is it to say that humanity is “by nature” rational when there are counterexamples—that is, humans who are not (or appear not to be) rational? Should they perhaps be excluded from the category of human? Or should we rather not give them the moral status of beings in whom rationality is manifest? Consider the question from the instance of another sort of entity. Let us say that when we value an automobile as an automobile, we are valuing its nature as a four-wheeled vehicle that can transport us from one place to another. If we now encounter an automobile with a missing wheel, we may still have to regard this as an automobile, though disabled, but should we continue to value it as a car? We can recognize the humanity of an individual with SCD, but if respect is due to humanity because it is “by nature” rational and so is an end in itself and worthy of such respect, why do we have to respect her for this humanity when it is disabled in just that rationality? Without a wheel, the car remains a car but loses its value as a car. Some would say similarly that the SCD individual remains a human, but what gets lost is the point for which that humanity is claimed to be an end-in-itself. One might argue that the auto example is misleading because automobiles are primarily instrumental—they are things. They cannot be ends in themselves as they are not the sorts of things that can be rational. Still, one can imagine a world in which autos are not only means of transportation but also objects of reverence (we are not very far

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from this world). In that world we would continue to value the automobile with the missing wheel, even if it can’t transport us. I suppose it is this sort of reverence that Kant believes is due rational nature (that is, the nature of humanity), even if particular capacities are not functional. Perhaps a Kantian response should suffice, that the moral value, the personhood, of people with SCD is parasitic on the moral value of all human beings because they are by nature rational. Yet that response will be adequate only for those who take rationality to be an object of reverence. For utilitarians such as Singer and McMahan, the value of rationality lies in the utility it yields. And their two-tiered morality is predicated on the idea that those who possess it can achieve higher utilities than those without it. A human without this rational capacity is therefore like the threewheeled car in a world where the automobile is valued only because it gets us around efficiently. The Kantian answer cannot be helpful to us unless we adopt the reverential attitude toward rationality and a conception of humanity that is inextricably tied to the capacity for reason. This is a possible answer to McMahan’s question, but it begs the question of why we should take the reverence for rationality to apply in each case of the human, even humans who apparently cannot exercise this capacity. In the moral individualism that Singer and McMahan adopt, according to which one’s species membership is morally irrelevant, the only morally significant question is whether one is in possession of those traits that are morally relevant. Those in possession of these properties are due justice from one another. For Singer and McMahan, children younger than 2, older people who might suffer incapacitating dementia, those in a “vegetative state,” and the radically cognitively impaired are all excluded. McMahan’s question still stands.

S TA R T I N G F R O M INDEPENDENCE: CONTRARIANISM AND C O N T R A C T UA L I S M Contract theory has two versions, contractarianism, which derives from Hobbes, and contractualism, which derives from Locke, Rousseau, and Kant. On a contractarian model of justice such as the Hobbesian one offered by David Gautier (1986), the answer is that people with serious disabilities (physical or mental) have neither the power to compel others to recognize them as

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equals nor the possibility to acquire this power. On a contractualist account such as Kant’s or Rawls’s the answer is less clear. The argument that I launched (Kittay 1999), and that Martha Nussbaum (2006) subsequently took up, was that contractualism, even the highly moralized form that Rawls gives us, has no conceptual place for dependency and therefore no good way to answer the question of what we owe to people who have and will always be dependent. The idealization of the citizen as free, equal, and independent creates a vision of society in which the primal fact of human dependency has no role in the formation of political institutions. Free, equal, and independent persons are ones who are in possession of the two moral powers: the ability to form and revise their own conception of the good and a sense of justice. Political associations that are constrained by principles of justices are composed of independent people, for independent people, and by independent people. Social relationships among persons who cannot function as independent persons, and so cannot contribute to and benefit from a fair system of social cooperation, are not within the purview of justice. Persons with the sorts of disabilities or deficits that are in question, and who therefore cannot contribute to the economic well-being of even a well-ordered society, are thus excluded from political life. There are important debates about whether a Rawlsian conception of justice could be modified to include people with physical and mental disabilities. Let us consider some innovative attempts. Some, notably Sophia Wong (2010), have tried to make the case that as membership in such a system of fair social cooperation depends on the potential rather than the actual capacity to exercise the moral powers, a well-ordered society must provide the enabling conditions to realize this potential on the part of its citizens. Insofar as we can never know for certain whether that potentiality can be realized in any particular case, and anyone with a human brain, but not necessarily with a nonhuman brain, has this potential, people such as my daughter have a claim on society that nonhuman animals do not have. The claims are more specifically ones for the enabling conditions to realize the potential for the two moral powers. The answer to McMahan is simply that my daughter possesses a human brain and so has the potential to become a someone who has the two moral powers and consequently the potential to become a participant in a fair system of social cooperation.

This is an answer, although it is debatable if it is a truly Rawlsian answer. Surely it is the responsibility of a just society, one that wishes to persist beyond a single generation, to educate its young and actualize their potentiality to develop their moral capacities. This is part of an orderly reproduction of society. But does that compel a society to go to extraordinary lengths to attempt to actualize potential that might not be there despite the possession of a human brain? The mere possession of a human brain may be insufficient evidence of the potential to acquire the requisite moral, cognitive, or psychological properties. (For example, certain windows of opportunities for moral or intellectual development might have closed before any efforts to intervene could have begun.) Furthermore, drawing out that potential may involve extraordinary costs. Rawls himself voices a concern about “extraordinary health costs” and how these might be justly handled, so it is not at all clear that the answer is either an adequate answer on even loosely construed Rawlsian grounds. Another contractualist model, if not a strictly Rawlsian one, is offered in a series of articles by Leslie Francis and Anita Silvers. They are not claiming to answer McMahan’s question insofar as they do not try to say what claims humans with severe intellectual disabilities have that nonhuman animals do not. Nonetheless they maintain that contractualism can include people with severe intellectual disabilities within the scope of justice, if it is understood in ways they propose. They claim that those with significant cognitive disabilities do enter into a system of fair social cooperation even if they may not be able to contribute to its material wealth or engage in political discourse. The argument has two parts. The first part begins with the observation that people with SCD require care that in turn requires trust and trustworthiness on the participants of that care relationship (Silvers & Francis 2005). Basing their work on recent empirical work in evolutionary accounts,5 Silvers and Francis maintain that: The greater the proportion of individuals in the population who do not abuse each others’ trust, and are so perceived and afforded reputations for constancy by others, the more widely distributed is the kind of social information about trustworthiness that undergirds cooperative behavior. (Silvers & Francis 2005, p. 68)

People with SCD (as well as all dependents) are participants in relationships that encourage the

Getting from Here to There development of trust and trustworthiness. This participation brings them within the orbit of a cooperative system of social organization that emerges from trust rather than bargaining from mutual advantage. Secondly, they argue, like physical and sensory impairments that become disabilities because we lack physical or social accommodations, so cognitive impairments are disabilities just to the extent that the appropriate accommodations are not available for them to be included (Francis & Silvers 2010). Like physical impairments that can require prosthetic devices to allow the person to gain needed functions, people with cognitive disabilities, argue Francis and Silvers, can be accommodated with “prosthetic” minds and voices in the form of trustees. These trustees, they suggest, should be viewed as a prosthetic for the agency of people with SCD who cannot speak for themselves. By speaking for the cognitively disabled, trustees can offer them a means of participating in the public and political domains These are all intriguing and attractive suggestions. Can we deploy them in offering a response to McMahan’s question? To do so we would use Silvers and Francis’s model of a contractualism in which trust rather than bargaining is critical to developing and sustaining social cooperation. We would then claim that as people with SCD participate in social cooperation by helping to build trust, theirs is a distinctly human contribution.6 Furthermore, one human being can be a prosthetic supporting the agency of another human, but this cannot be true for a nonhuman animal since we are not nearly as good as reading the mind of an animal as we are of another human. Will this reply do? First one could point out that pet ownership too cultivates virtues that are critical to the functioning of a well-ordered society. We learn virtues of care and compassion to our fellow creatures. We learn about the sensibilities of beings other than humans, which is important as we learn to live more cooperatively with our environment. What claims would people with SCD have, then, that pets would lack? I believe with Francis and Silvers that people with SCD should not be excluded from political life, and that they should be understood to have a conception of their own good that is facilitated by trustees. I believe that people with SCD should even have a vote.7 This is because they have interests that ought to be promoted or protected, and those interests should have a political voice. But on these grounds might one not say that animals

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too should have a political voice to promote and protect their interests? When we speak on behalf of animals are we doing something radically different than when we speak on behalf of humans with SCD? The claim that the people with SCD can be brought into the domain of political participation through such “prosthetic minds” and that this fact gives us a reason to regard them as having moral claims that nonhuman animals cannot make is not sufficiently convincing.8 This is not to discount the theory or its merits, which may be many; it is only to say that it does not answer McMahan. Another contractualist effort to include the people with disabilities of all sorts is that of Lawrence Becker (2005). He argues that if we include the fact that we are each vulnerable to disability of some sort behind the veil of ignorance, then we will chose principles of justice that would include protections and provisions for the disabled because we are each vulnerable to disability. Becker’s response to McMahan’s, then, would be that my daughter’s situation is one that might be or might have been our own. The situation of an animal could not be one to which we are vulnerable in the same way that we are vulnerable to that of any human. It is our common human vulnerability that gives people like my daughter a claim on others that nonhuman animals cannot make. Becker wants to stay within a contractualist framework because he believes, perhaps justifiably, that contractualism is the best response one can make to “the tough crowd,” to those who ask, “what’s in it for me?” Although Becker’s response most closely approximates what I think is the correct way to answer McMahan, it still does not suffice. To Becker’s inclusion of the fact of disability as knowledge that must be considered in the original position there are those among the “tough” crowd who may plausibly reply: “If I were to be severely cognitively disabled, I would not want the protections of justice; I would want to be put out of what I believe is a degraded and miserable state. Nor would I want my children’s resources to be used to support me in that condition, for that creature would no longer be me.” Although Becker’s version of contractualism gets us closer to where we need to begin—that is, by populating the initial situation of the political agreement with parties who already view themselves as potentially dependent—it cannot rule out responses that would exclude people with

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certain disabilities from the moral and political domain.

S TA R T I N G F R O M E Q UA L I T Y (OF DISTRIBUTION) Questions of contractualism and contractarianism are questions about the basis by which we choose principles of distribution. If we set aside these foundational issues and focus only on the distributional principles themselves, we might shift the question. We can ask: Is there a principle of distributive justice that can determine what people with cognitive disabilities can claim from us that animals cannot? Again let us begin with Rawls. The Rawlsian difference principle is supposed to give priority to those who, through no fault of their own, find themselves in the worst-off position in even a well-ordered society. Of course, Rawls’s worst-off position is not concerned with disability but with economic circumstances. To the extent that the severely disabled are in the worst-off position economically speaking, to that extent society has an obligation to make social arrangements that will permit them to have equal access to the primary goods—the goods we all require regardless of our conception of the good life. But the fact that they may be poorly off in other regards—their access to health benefits, to care services they require to live well, to their ability to be part of social and political life9—does not figure in this form of prioritarian egalitarianism. Amartya Sen’s criticisms of Rawls and other distributive theories that focus on resources in Equality of What (1995) maintained that disability provides the clearest case of what is wrong with distributions based on equalizing resources. The problem, he maintained, was that given equal bundles of goods, people with and without disabilities would not be equally capable of converting the resources into the freedoms to function in ways that make their lives go well. A person with disabilities, for example, may have to use a portion of his income for equipment such as a wheelchair, for special transportation, for an aide. Another with the same income can save that money, use it for better nutrition, greater leisure, other activities that enhance his life. The important thing, Sen famously argued, was to equalize people’s capabilities, not their resources. On a capabilities view, it is unjust to leave some people worse off than others because they have disabilities that leave them less able to exercise their capabilities than others.10 If my daughter

has a claim on others, it is because her disabilities leave her with fewer capabilities, and a just society would attempt either to equalize her capabilities or bring them up to some threshold below which no one ought to fall. The justification for arguing that those who are worst off should be provided resources to bring them to equality supposes that such equality is possible. But those who are congenitally severely cognitively impaired may be incapable of ever being brought to a level of equal functioning, even to a threshold minimum. If that is the case, then it would appear that there could be no requirement that their capabilities be equalized. To argue that they need to be brought up to a threshold is to assume a threshold based on a species norm. But again, they may not be capable of being brought to a level of functioning to a species norm. If it is not possible, again, it cannot be a requirement of justice. In arguing along the lines of distributive principles, McMahan considers the position that to reckon people with SCD among the worst off is to say that there is some way in which their lives are unfortunate, and as this misfortune is not of their own doing, society has a obligation to equalize their chances to achieve well-being or bring it up to an acceptable threshold.11 To refute this position, he first asks what standard or reference class we use when we consider their lives unfortunate. He then asks why we should consider people who have these limited capacities unfortunate when there are nonhuman animals who live with such limited functions and whom we do not therefore consider unfortunate. Why, he asks, should we not try to bring these animals up to the same threshold or give as much priority to that task? Why, he continues, when we are dealing with humans, should the “mere” fact that the individuals in question are human give us any reason to prioritize their well-being—limited as it is by their capacities—over that of nonhuman individuals with the same capacities? The answer, he believes, is that there are no such reasons and so no egalitarian argument that allows us to claim justice for those with these sorts of cognitive disabilities. Again we are up against the query: Why should species membership be of moral importance when we can speak of comparable properties across species in a perfectly intelligible fashion? The first response to McMahan, I believe, should be that we cannot speak of “comparable properties” across species in a meaningful way. That is, we cannot because when we invoke a property

Getting from Here to There with regard to an individual, we are always implicitly, if not explicitly, understanding that property with reference to how it functions in the lives of individuals of a particular species. For example, both eagles and humans are predators, and a good predator needs good eyesight, but what counts as keen eyesight in the two species is very different. It would hardly do to bring an eagle whose eyesight has become deficient up to some threshold appropriate to human eyesight. We cannot even begin to consider categories such as “the worst off ” without the reference class being species-specific. It is within our speciesspecific capabilities and relationships that we exist. What constitutes a bonus for one species may be a great disadvantage to another species. Consider eye placement. Primates and all predators have eyes that are largely front-facing, giving them the distinct advantage of stereoscopic vision needed for hunting prey and swinging in trees. But animals that are prey are better off with the side placement of eyes, as stereoscopic vision is of little use to them and side placement allows them wide peripheral vision, including the ability to spot predators behind them. The species-specific differences matter not only in physical properties such as eyesight, but in psychological capacities as well. Human beings differ from other apes in sharing the care of their young, to their great evolutionary advantage (Hrdy 2009). Thus we humans are inclined to entrust our young even to non-kin. A chimp mother who, by chance, had been born with such a trusting nature would be among the worst off among chimp mothers, for her babies would be in mortal danger. Surely some capacities may be more or less similar or analogous, but all are set within the species life of a particular kind. Nonetheless, I am willing to grant the excessive stringency of the claim that we must equalize the functioning of people with SCD when the prospects of actually achieving this end is at best unlikely. And I would grant the same of the threshold view in certain cases. If one begins thinking about the question of justice for people with SCD from the idea of equality, it may seem that this concession forces us to give up the idea of justice for this population. Equality is without doubt an important distributive principle. But using it as the basis for arguing for justice for people such as my daughter has not gotten us far. It is time, I propose, to change the starting point.

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S TA R T I N G F R O M DEPENDENCY If we look at society and its political constitution as primarily an arrangement among independent, fully functioning equals—and the psychological criteria of the utilitarian moral individualist is meant to do this no less than the contractarian— then we have to find some way of accommodating those moments of our lives when we are not yet, or no longer, a fully functioning or contributing member of society, when we lack the cognitive and psychological capacities McMahan attributes to persons. So I want to suggest a different starting point. I want to suggest that we create societies and make political arrangements for governance in good measure precisely because we are the sorts of beings that have extended periods of dependency, which begin at infancy12 and which recur not infrequently throughout our lives, especially at its end. If we were anything like the idealized figures of political theory and much ethical theory, we should have to tell a tall tale to explain why fully independent beings would ever agree to shed themselves of their liberty and bind themselves to all the duties and obligations that come with social cooperation. This was the problem contract theorists had to grapple with and did so in a variety of now very familiar fictive originary tales, all of them problematic in some fashion. Consider what happens when we recognize from the start the following two aspects of human existence: 1. Not only do human beings start life with a long period of dependency, we also are prone to disability, illness, and frailty; and after our productive or reproductive capabilities ebb, we (alone among primates) can continue to live for a long time. 2. When we care for a dependent, we ourselves become dependent on others to provision ourselves and our dependents. Given these considerations as starting points, the indispensability of social arrangements that bind and govern us is amply evident, if we are to succeed in caring for and provisioning our dependents and ourselves.

A N A LT E R N AT I V E TA L E Indeed, recent investigations by anthropologists, evolutionary biologists, and sociobiologists give

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rise to a very different originary tale of human social organization than those of philosophy’s contract theories. Sarah Hrdy (2009) has argued that our long dependency at the start of life and our accommodation to certain environmental pressures made us the only great ape who shared caregiving. Given our need for cooperative caring, those infants whose kin survived past periods of productivity and reproduction (especially grandmothers, but also grandfathers) were themselves more likely to survive because these older folk could serve as trusted caregivers, additional providers, and stabilizing factors in the maintenance of communities essential to nurture and protect the young. Along with shared caring came a number of important developments that allowed hominoids to evolve into beings who could enter into trusting societal relationships with others— even with non-kin. Among these are the need for infants to form relationships of care with these other caregivers13 (that is, infants had to be able to seduce not only mother but other potential caregivers as well); the need to have additional caregivers who could be trusted with infants not their own; and the need for mothers to feel secure that these others could be trusted with their dependent children. All these factors worked to stimulate in one great ape, humans, levels of empathy and trust that we do not see in fellow apes. Thus, not only did the fact of our extended early dependency necessitate social arrangements of shared care, it also allowed for the evolution of capacities of trust, empathy, and increased sociality that make human communities with complex social structures possible. If this picture has any merit, then it is not farfetched to say that the very fact of human social organization rests on the fact that humans have been able to survive as the sort of dependent beings they are because they required shared caregiving and social cooperation. It is less our rationality than our empathetic and relational capacities that are foundational to social organization. An ethic that puts these empathetic capacities and relational self-understandings at its center is an ethic of care. Our sense of duty and obligation to dependents comes less from a rationalistic weighing of utilities, an abstract sense of duty, or a calculated tit-for-tat reciprocity than from an understanding of the responsibilities that come with social roles, from a sense of responsibility we have to relationships formed over the years, and from our empathetic understanding of the potential for suffering and privation that can come

with the helplessness of infancy, and with disability, disease, and old age. A public ethic of care views society (in part at least) as centered on the dependent human being. This model is populated by dependents, dependency workers (who together with others care for dependents), and providers who provision dependents and dependency workers alike. Elsewhere I have introduced the term “doulia” after the postpartum caregiver, the doula, who cares for the mother so the mother can care for her infant. Doulia is the principle that society as a whole needs to support the provisioning that enables the caregiver to care for dependents and to do so in a way that also does not neglect the interests and well-being of the caregiver. The obligation that finds expression in doulia is a form of reciprocity. No child is raised from its infancy to adulthood by just a mother or even just a mother and a father. We know “it takes a village.” There are inevitably other caregivers, teachers, and attentive strangers who step in when needed, those who produce the material resources to sustain the child, those who protect the community so that the child is not in mortal danger, and so on. Each of us who survived to adulthood has been a beneficiary of this care. We owe a debt that is paid back but it is paid to subsequent generations. Here we use a conception of a reciprocity, but not the standard one of economic exchanges found in most political philosophy, to express the debt that we incur as recipients of this benefit. While nonstandard, it is nevertheless a notion that we deploy in certain circumstances. As a parent, I want my child to repay me for my caring labor, less by caring for me, than by caring well for a child he may have. This enlarged conception of reciprocity is sometimes expressed in the phrase “what goes around, comes around.”14 Analogously, we cannot effectively care and do so justly without a shared responsibility when we provide care beyond childhood—care that any one of us may require, for we are all equally vulnerable to periods of dependency. Not only is there a debt that is paid back to subsequent generations, but there is also a debt that is paid forward—in anticipation of the debt we should incur if we were to become dependent or be called on to care for another. The originary tale to which we appealed did not stress certain traits that an individual human as such possessed. Nor does it make an appeal to traits that are “distinctively human.” Shared

Getting from Here to There caregiving and even organized communities are to be found in many species. What is unique to humans is that they are the only great apes who share caregiving and who have the sort of sociality that allows for the development of trust and empathy. What makes us human is not a singular trait that no other species have, but a unique combination of traits, any one of which can be found in many other species to a greater or lesser degree. Furthermore, the capacity for shared caregiving, for trust, for empathy are all relational characteristics. They come into play in certain relations and not in others; they have more or less important functions in different social roles. Personhood itself is a relational feature. We are persons in relation to other persons. This leads to an answer to McMahan, and it was McMahan himself who offered a crucial concession. In the interchange in which the question was raised, McMahan acknowledged the importance of my relationship to my daughter. Defending Singer’s inopportune question to me of how my daughter differs from a pig in a morally significant way, he says the following:15 He [Singer] is not denying that you have a special relation to your daughter and that that is very significant for you in your life, significant for her, and so on, and that that’s true of many other people. Or, again, to get you to look at George Pitcher’s book (Pitcher 1995) . . . that indicate that these relations—some attenuated version of these relations—I wouldn’t claim and I’m sure George Pitcher wouldn’t claim that his relation to his dogs was as deep or as significant or as objectively important as your relationship to your daughter.

If McMahan and others acknowledge the special relationship that is constituted by parenthood, and if they can grant that the parent of a child with severe cognitive impairments has a deeper and morally and objectively more significant relationship with that child than does a pet owner with his beloved pet, then starting with these relationships rather than the intrinsic properties of individuals, we can draw a number of inferences that should lead to the recognition of any human child as possessing moral personhood and the attendant protections of justice. I, as a parent, have obligations to fulfill toward any child of mine. Following Sarah Ruddick (1989), we can say that what a child “‘demands”’ of its parent is to ensure that the child’s life is

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protected, that the child’s development and growth are fostered, and that the child can find social acceptance. Now, no parent with a child of typical capacities can do this in a vacuum. All parents need access to certain resources to fulfill their obligations to their child, some of which we already recognize as obligations of the larger society. If doulia is a principle of justice, many more obligations are due to children and adults who are dependent. Every parent needs schools and other social institutions to ensure that her child can develop her capacities, whatever those capacities may be. Every parent needs to work with both the child and the social world that the child enters to ensure that the child will grow into a member who is granted respect and who can develop a sense of self-respect. No child is simply the parent’s own private matter. Even when our children and family members who depend on us no longer are children, the argument from dependency is that this dependency is itself not a private matter, but requires public resources if the society is to deal justly both with dependents and those who care for and have responsibilities toward dependents. I confine my remarks below to the relationship between parent and child. But much of it applies ceteris paribus to the relationship between a dependent and the individuals who have taken on responsibilities for the well-being of dependents. If McMahan and Singer claim to honor my relationship to my child and to grant its moral significance, then they cannot with any consistency grant the means to fulfill parental obligations to one parent and deny them to another parent based on some set of features of the child. All parents who seek to fulfill their ethical obligations as parents need the means whereby to meet their responsibilities—regardless of the capacities and needs of their children. Similarly, those who are responsible for dependents need such means to discharge their obligations. Now what sorts of things are important to the parent qua parent? Foremost is the need that the wider society recognize the worth and worthiness of the child. It is incoherent to grant the special relationship I have with my daughter and then to turn around and say, “But that daughter has no moral hold on anyone but her parent.” Her parent cannot fulfill her role as parent unless others also have an acknowledged moral responsibility to the child—a moral responsibility on par with the one it has to anyone’s child. But it is not for my sake that I want my child recognized; it is for her sake.

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That is the nature of the parental relationship. It’s not that I want people to care about Sesha because I care about her; it’s that I cannot give her the care it is my duty to provide if others do not respect her as a being worthy of the same care as is due to any mother’s child. In laying bare the intensity of my relationship to a daughter who has such profound intellectual disabilities, I show that Sesha is as much a daughter as is any other beloved daughter to a loving parent. In showing this, I am carrying out my role as her primary caregiver, because I am attempting to win for my daughter the respect and regard that other mothers try to secure for their children. After the passage I quoted above, McMahan makes something of an apology for the sorts of comparisons between people with cognitive disabilities and nonhuman animals that I clearly considered odious. He says: You know, Peter and I didn’t come here to hurt anybody’s feelings. We’re here to try to understand things better. I think that Peter and I engage in a fair amount of voluntary selfcensorship. I’m trying very hard not to say anything offensive, something hurtful. I’m profoundly averse to making people miserable.

Yet in expressing his distress at seeming to make me miserable, the apology misfires when he directs the apology to me. It is not for my sake that I attempt to refute his arguments. It is for my daughter’s sake. What our morally significant relationship and my caring work reveals is that whether or not my daughter possesses capacities McMahan considers significant, or possesses them in excess of those of a pet dog, McMahan himself grants that the relationship between my daughter and me is present only in an attenuated form in the case of a dog owner who has the deepest affection for his pet. In carrying out a public display of caring in the philosophical context, I am engaged in a philosophical disputation, a point that was actually conceded when McMahan granted the difference between my relationship with my daughter and George Pitcher’s relationship to his dog. Even as I make the personal case for my own daughter I am engaged in an act with potential political consequences, securing for my daughter just treatment and moral protection. If I as a mother require that my work of mothering is possible only when the wider society can grant the moral worth of my child, then this is no less true

of any child, regardless of his capacities and, importantly, regardless of whether a person with SCD is still being cared for by his mother, or was ever raised by his biological mother. Each child needs to be cared for by some mothering figure(s), and so the requirement is no less stringent for people with SCD. To put this in terms of the larger framework for justice that I laid out earlier, one that takes our dependency seriously, it is as my dependent daughter, not as a future independent individual, that the duty to provide care for her derives, the care that is fundamental to respect her as having worth equal to that of any mother’s child. Her dependency, though greater and longer lasting, makes morally demanding claims not only on me as the caregiver, but also on the larger society. That is why my daughter has a moral claim, not only on me, but also on others. Animals are not dependent on humans in the same way and thus cannot make such claims—although they can make various moral claims on us: claims for example to be left in peace, not to have their habitats destroyed, and so on. Surely to the extent that we have made them dependent on us, they do have some moral claims on us for protection and support. The argument I have been presenting is based on a political vision that begins with dependents, dependent workers, and relationships of dependency. These roles and relationships, considered together, are ones no one can escape. They become constitutive of our identities, and remain so even when the specific individuals with whom we have had these relationships are no longer in our lives. The obligations and responsibilities that derive from our involvement in relationships of dependency move beyond the sphere of intimates and extend to even those who are distant, whether in time or place. Philosopher Naomi Scheman, after the discussion between Singer, McMahan, and myself had taken place, stated what I as a mother could not say. She said: “It’s not just that Eva cares about Sesha, I care about Sesha . . . and I don’t know Sesha. . . . Sesha is Eva’s daughter and that is a fact about her that affects the sort of being she is.” She continued: “I adopted a feral cat. Once I adopted the cat she is no longer a feral cat, she is a different sort of being. It is not that you cannot now do certain things to her that you couldn’t do before because it would hurt me, it’s because you can’t do certain kinds of things to her because now she is a different kind of being.”16

Getting from Here to There The difference between Naomi Scheman’s cat and Sesha or any other human with cognitive disabilities, however, is that human beings do not long survive as feral beings. We human beings are the sorts of beings we are because we are cared for by other human beings, and the human being’s ontological status and corresponding moral status needs to be acknowledged by the larger society that makes possible the work of those who do the caring required to sustain us. That is what we each require if we are some mother’s child, and we all are some mother’s child.

Notes 1. This chapter was delivered in the Political Science Distinguished Lecture Series, University of British Columbia, October 25, 2010. I would like to thank Barbara Arneil, Jeffrey Edwards, Anita Silvers, and Rosamund Rhodes for their helpful discussions and comments. 2. From McMahan (2008b). 3. The term was introduced by McMahan (2008a, 2008b, 2010) to address my concern that the term “severe or profound mental retardation” was a clinical term. (That is, it was so used until the term “intellectual disability” replaced “mental retardation” as an acceptable appellation.) 4. My colleague Jeffrey Edwards has commented (in a personal communication), “So what if this natural predisposition were (if fact) not serviceable—that is, not useful—in this way? What happens to the theoretical usefulness of the distinction between ‘duty with regard to’ and ‘duty to’ other beings if the very intelligibility of human deontic relations with non-human and non-rational entities depends on that sort of contingent condition? In short: In the absence of the human capacity for shared feeling of others’ suffering, would there be no duty to refrain from violent and cruel treatment of animals? Could a purely rational agent permissibly treat animals with violence and cruelty?” It is a question well worth pondering. However, we are not purely rational agents and the cultivation of sentiments is morally significant, but it is still disturbing to think that we owe nothing to a sentient being that is not rational. 5. They cite Alexander (1987) and Mohtashemi and Mui (2003). 6. It is important to note that Silvers and Francis are not claiming that this is a distinctively human contribution. They write: “For purposes of this article, we lay aside the question of who are moral subjects. We simply assume that all human beings are moral subjects on any relevant account of moral subjects and leave open whether nonhuman animals or other entities might also be regarded as moral subjects, with a trusteeship proposal developed on their behalf ” (Silvers & Francis, 2005, footnote 29).

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7. For an excellent discussion of this point see Nussbaum (2010). 8. Again, Frances and Silvers themselves are not insisting that the same claims cannot be made for nonhuman animals. It is I who am asking whether we can use their model to answer McMahan. 9. The last of these might as they may be counted among the “social bases of self-respect,” one of Rawls’s primary goods. 10. The view of Nussbaum is similar except that she specifies the actual capabilities that need to be made available to all human beings, and she argues for a threshold position. She also holds that a capabilities view applied to animals, although it would be differently applied in the case of human and nonhuman animals. See Nussbaum (2006). 11. The argument I discuss above borrows from those made in McMahan (1996). I cannot do it justice here, but I hope to have captured the gist of it. 12. Of course all mammals have a period of dependency within the maternal womb, but it is the dependency of the infant that is not longer attached to the mother that concerns us. 13. Hrdy (2009) refers to these as allomothers, but I will not use her neologism here. 14. The conception of reciprocity I am using here is discussed in Kittay (1999). It receives a much fuller treatment and defense in Becker (1990). One political theorist who uses this notion to develop a theory of justice based on care is Daniel Engster (2007). 15. What follows is a slightly modified version of a portion of Kittay (2010). 16. See McMahan (2008b).

References Alexander, R.D. (1987). The Biology of Moral Systems. New York: Aldine de Gruyter. Becker, L. (1990). Reciprocity. Chicago: University of Chicago Press. Becker, L. (2005). Reciprocity, justice, and disability. Ethics 116(9). Engster, D. (2007). The Heart of Justice. Oxford University Press. Francis, L. P., & A. Silvers (2010). Thinking about the good: reconfiguring liberal metaphysics (or not) for people with cognitive disabilities. Cognitive Disability and Its Challenge to Moral Philosophy, eds. E. F. Kittay & L. Carlson. Wiley-Blackwell, pp. 237–259. Gauthier, D. (1986). Morals by Agreement. Oxford: Oxford University Press. Hrdy, S. (2009). Mothers and Others: The Evolutionary Origins of Mutual Understanding Cambridge, MA: Belknap Press of Harvard University Press. Kant, I. (1998). Groundwork of the Metaphysics of Morals. New York: Cambridge University Press.

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Kittay, E.F. (1999). Love’s Labor: Essays in Women, Equality and Dependency. New York: Routledge. Kittay, E.F. (2010). The personal is philosophical is political: a philosopher and mother of a cognitively disabled person sends notes from the battlefield. Cognitive Disability and Its Challenge to Moral Philosophy, eds. E.F. Kittay & L. Carlson. WileyBlackwell, pp. 393–413. McMahan, J. (1996). Cognitive disability, misfortune, and justice. Philosophy & Public Affairs 25(1). McMahan, J. (2003). The Ethics of Killing: Problems at the Margins of Life. Oxford, New York: Oxford University Press. McMahan, J. (2008a). Cognitive disability, cognitive enhancement & moral status. Cognitive Disability: Its Challenge to Moral Philosophy. Stony Brook University, Manhattan, New York. McMahan, J. (2008b). Cognitive disability, cognitive enhancement & moral status, Q&A session. Cognitive Disability: Its Challenge to Moral Philosophy. Stony Brook University, Manhattan, New York. Available at https://podcast.ic.sunysb.edu//blojsom_resources/ meta/phicdc/36-KITTAY%3AMcMAHAN_Q% 26A.mp4 McMahan, J. (2010). Cognitive disability and cognitive enhancement. Cognitive Disability and Its Challenge to Moral Philosophy, eds. E.F. Kittay & L. Carlson. Wiley-Blackwell, pp. 345–367. Mohtashemi, M., & L. Mui. (2003). Evolution of indirect reciprocity by social information: the role of trust and reputation in evolution of altruism. Journal of Theoretical Biology 223:523–531.

Nussbaum, M. (2006). Frontiers of Justice: Disability, Nationality, Species Membership. Cambridge, MA: The Belknap Press, Harvard University Press. Nussbaum, M. (2010). The capabilities of people with cognitive disabilities. Cognitive Disability and Its Challenge to Moral Philosophy, eds. E.F. Kittay & L. Carlson. Wiley-Blackwell, pp. 74–95. Pitcher, G. (1995). The Dogs Who Came to Stay. New York: Dutton. Regan, T., & P. Singer, eds. (1989). Animal Rights. Englewood, NJ: Prentice Hall. Ruddick, S. (1989). Maternal Thinking. New York: Beacon Press. Sen, A. (1995). Equality of what? Inequality Reexamined. Oxford: Oxford University Press, pp. 12–30. Silvers, A., & L.P. Francis (2005). Justice through trust: disability and the ‘outlier problem’ in social contract theory. Ethics 116(1):40–77. Singer, P. (1994). Rethinking Life and Death: The Collapse of Our Traditional Ethics. New York: St. Martin’s Press. Singer, P. (2010). Speciesism and moral status. Cognitive Disability and Its Challenge to Moral Philosophy, eds. E.F. Kittay & L. Carlson. Wiley-Blackwell, pp. 330–344. Singer, P., & H. Kuhse. (1985). Should the Baby Live? The Problem of Handicapped Infants Studies in Bioethics. Oxford, New York: Oxford University Press. Wong, S.I. (2010). Duties of justice to citizens with cognitive disabilities. Cognitive Disability and Its Challenge to Moral Philosophy, eds. E.F. Kittay & L. Carlson. Wiley-Blackwell, pp. 127–146.

26 Cognitive Surrogacy, Assisted Participation, and Moral Status D AV I D WA S S E R M A N A N D J E F F M c M A H A N 1

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n this chapter, we examine the limitations of a recent approach to establishing moral and political equality for human beings with significant cognitive limitations: the use of representatives or surrogates to assist the cognitively limited individual to decide, remember, vote, deliberate, and participate in other social and political activities. We will not dispute the value of such assistance in enhancing autonomy and securing political rights for many or most individuals with cognitive limitations. But we will argue that the proposed forms of assistance cannot achieve these objectives for humans with the most radical cognitive limitations—those lacking self-consciousness and practical rationality. Human beings lacking those capacities, or the potential to acquire them, will not be able to participate in many important social and political activities even with the most skilful and concerted assistance. Such assistance may help to protect the interests of radically limited individuals, but it offers them only an attenuated and, in some contexts, counterfeit equality. We will consider two roles for such “cognitive surrogacy” for humans with radical cognitive limitations. The first role is to realize or secure a moral and political equality that is already assumed or recognized—that is, to help the individual with an impairment exercise the rights she already enjoys as a moral and political equal. The second and quite distinct role for cognitive surrogacy is to contribute to the creation and maintenance of the status of the radically cognitively limited as our moral and political equals. The assumption behind this second role is that one source of equal status is participation in our human community, or our human form of life. A practice of surrogacy that would enable radically limited individuals to exercise certain rights of

equal citizenship would be in part constitutive of their status as our moral political equals. The two roles impose somewhat different requirements for successful surrogacy—the demands of the former role, of realizing moral and political equality, may be much more specific. But both roles face the problem of meaningful representation. We will argue that the connection between the radically limited individual and the psychological, social, and political acts done on his behalf may be too attenuated for those acts to count as his own, either for realizing moral or political equality or for enabling him to participate in a human community or human forms of life. We will conclude that political equality cannot be secured for radically limited individuals by surrogate representation, and that their equal moral status cannot be grounded in surrogateassisted participation. It is certainly open to proponents of equal moral status for all human beings to avoid the force of these arguments. They could decline to infer political equality from equal moral status, or deny that political equality requires the right to vote and serve on juries. And they could attempt to ground moral status on different attributes or relationships. The authors of this paper differ in their degree of skepticism about the prospects for finding such other grounds, so we will leave this as a challenge for proponents of the equal and exclusive moral status of all human beings.

T H E R I G H T T O VO T E A N D T H E R I G H T O F J U RY S E RV I C E Martha Nussbaum has proposed the first role— the use of surrogates for cognitively limited individuals to secure the rights she regards as entailed by their being equal citizens in a modern

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democratic society: “I shall argue that showing equal respect for the dignity of fellow citizens with cognitive disabilities requires giving them an equal right to vote, to serve on juries, and so forth—just as it entails equal entitlement to everything else” (2009, 333). She assumes the equal status of all cognitively limited human beings within a political community, referring to them as “our fellow citizens, and fellow participants in human dignity” (343). If these fellow citizens, even the most radically limited among them, are not enabled to participate in the political process, then this “large group of citizens are simply disqualified from the most essential forms of citizenship. They do not count. Their interests are not weighed in the balance” (347). To ensure that they do count, she proposed “a surprising and controversial notion of guardianship” (333) that would enable them to participate in all aspects of the political process. Nussbaum is very clear that her demand for assisted participation includes citizens with radical cognitive limitations, although she recognizes theirs as “the most difficult case” (347): Here, the individual’s cognitive impairment is so severe that she cannot communicate her wishes about whom to vote for to a guardian; indeed, in many such cases, she cannot form such a view. Nor can she . . . serve on a jury in the sense of delegating a guardian to represent her interests. What does equal respect require in this case? I would argue that it requires that the person’s guardian be empowered to exercise the function on that person’s behalf and in her interests; just as guardians currently represent people with cognitive disabilities in areas such as property rights and contracts.

There are at least two objections to Nussbaum’s proposal that surrogates are necessary for the recognition and realization of the moral and political equality of radically limited human beings. The first concerns consistency, while the second concerns coherence. To appreciate the scope of the consistency problem, note that Nussbaum cites two functions that surrogates for the cognitively limited are supposed to serve: they are to promote the interests of these individuals and also enable them to participate in practices, such as voting and jury service, that are open by right to all citizens, so that the exclusion of the radically limited from participation in these practices would constitute a violation

of their human dignity. One initial problem of consistency is that animals too have interests that could be more effectively protected if they were assigned surrogates whose function would be to vote on their behalf. Wolves, for example, would benefit from surrogates to vote against Sarah Palin, who champions the practice of shooting them from helicopters for “sport.” Yet no one, to our knowledge, is calling for surrogates to vote on behalf of individual animals. Nussbaum apparently assumes that this is not an issue, since she makes her case on behalf of radically limited human beings by reference to their “human dignity,” an attribute that is apparently not found in individuals who are not human. But until someone explains precisely what human dignity is, what it is based on, and why it is morally significant, the term can serve only as a placeholder for an argument. When we consider the second function of surrogates—to affirm the human dignity of the radically limited by enabling them to exercise the rights of equal citizenship—we confront a more acute problem of consistency. For there are other human beings, such as infants and children, who are almost universally recognized as having full moral status but are nowhere afforded surrogates for voting or jury representation. (Note also that if newborn infants have human dignity, it seems that late-term fetuses must have it as well—at least if moral status is a function of intrinsic properties rather than contingencies such as physical location. For some newborn infants arrive prematurely—in some cases by several months—and are thus indistinguishable in their intrinsic properties from fetuses of the same age, measured from conception rather than birth.) Yet an ordinary child of 12 seems to have, if anything, a stronger claim to political participation than a radically limited adult, given that the child has substantially higher psychological capacities, the potential for full moral agency, and, arguably, a wider range of interests that may be affected by political processes. The provision of surrogates for children could, moreover, achieve purposes that surrogates for the radically limited would be unlikely to achieve—for example, pedagogical in addition to prosthetic purposes. Of course, the fact that no society provides infants and children with surrogate political representation does not mean that the denial of such representation is justified; many societies have unjustifiably denied a range of political rights to woman, minorities, and people with mild cognitive

Cognitive Surrogacy, Assisted Participation, and Moral Status limitations. Yet there seems to be no reason to suppose that the denial of voting rights or eligibility for jury duty to infants, or even to 12-year-olds, constitutes an implicit denigration of their moral status or a failure to acknowledge their human dignity. One might, of course, argue that children do not need surrogates, either because their parents can be trusted to represent them at the polling station or because they are promised the ability to exercise their rights of political participation later. But if parents can in general be assumed to function as reliable surrogates for their children, at least until the children develop the capacity for autonomous agency, it seems that formal surrogates for the radically limited are unnecessary until both their parents die or otherwise cease to be able to serve as surrogates for them. And it is implausible to suppose that a promise of later participation is ever an adequate fulfillment of rights of political participation in the present. The rights of equal citizenship of 30-year-olds are not secured by a guarantee that they will be allowed to vote when they reach the age of 50. It seems, therefore, that it is compatible with respect for the moral status and human dignity of children to deny them rights to vote and to serve on juries. The lesson we should draw from this conclusion is that these rights are not entailed, even in liberal democracies, by human dignity or full moral status. The second, more basic objection to Nussbaum’s proposal is a challenge to its coherence. It seems that the kind of assistance she proposes cannot, as a conceptual rather than empirical matter, enable citizens with radical cognitive limitations to participate in the political process. For the acts that a surrogate does on behalf of a radically limited individual will not be the latter’s own, even on an expansive view of agency. Whatever the surrogate can be said to do in voting on her behalf in an election or on a jury, he is not enabling her to exercise her right to vote or serve on a jury. In the case of jury service, a surrogate juror would be less a representative than a replacement. It is not clear what, if anything, he could represent. The radically limited individual has distinct interests, but jurors take an oath to set aside their interests. In contrast, such an individual cannot possess the epistemic attitudes and psychological attributes that are necessary in a juror and of which diversity within a jury is sought. She will not have general attitudes of credulity or skepticism, let alone attitudes towards specific kinds of evidence—for example, circumstantial versus forensic. Even if she were more trusting of some

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witnesses than others (assuming that she were capable of trust or distrust), she would lack a basis for her varying degrees of trust that would be appropriate for her surrogate to introduce into jury deliberations. A surrogate who, on behalf of a radically limited client, discounted the testimony of witnesses with loud voices or rapid speech would be guilty of an irrational, indefensible epistemic bias. Finally, while an individual with radical cognitive limitations may have experience that could be relevant to the jury, it is not experience that her surrogate could present from a firstperson point of view. For example, the fact that cognitively limited individuals are frequently mistreated, abused, or ridiculed may have some bearing on some legal cases, and the pervasiveness of such mistreatment may be important to convey to the jury. But a surrogate who shared this in jury deliberations would be reporting his own experience as a guardian or caregiver, not representing the first-hand experience of the individual with the radical cognitive limitation. Nussbaum recognizes some of these limitations: “Since personal interests are supposed to be excluded from jury deliberations, there is no easy way to distinguish being a juror for oneself from being a juror representing a person with a disability” (2009, 349). She acknowledges that the surrogate would have to disclose her own background and interests during voir dire, as well as any interests or biases she might have personally or in her capacity as guardian for a cognitively limited individual. And once in the jury room, she “would use her own judgment.” Indeed, “there is no point in bringing [the person with the cognitive limitation] along into the jury room.” Given the utterly nominal role the limited individual would play, Nussbaum quite reasonably asks: “What would be the point of that?” (2009, 349) Her answer is that “the all-important point is that the person with the disability has her name in the pool, has an equal chance to perform that civic function.” But this is an equivocation. Under her proposal, the limited individual would have an equal chance of being summoned for jury service, since her name was in the pool. But she would not have “an equal chance to perform that civic function,” because she was not capable of performing it. Keeping her name on the roll may be a symbolic gesture of her equal citizenship, but if she is summoned, it would seem more respectful to simply recognize that she is not qualified, and fill her slot with the next person on the roll,

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rather than go through the charade of surrogate representation.2 The prospects for cognitive surrogacy might look better for voting, since voters are permitted, and on some accounts encouraged, to take personal interests into account. If an individual with radical cognitive limitations has a right to have his interests effectively represented, a surrogate may be able to adequately represent them. But a surrogate cannot realize his client’s right to vote by voting in his interests. The casting of a vote is not, or not only, an expression of preference; it is a decision based on a judgment. An individual with mild or moderate cognitive limitations may well be able to make an assisted decision, but an individual with radical cognitive limitations, by definition, cannot, since she lacks self-consciousness and the capacity for practical reason. A surrogate can only vote as the guardian of her interests, not as the executor of a decision she herself made or participated in making. Nussbaum rejects the denial of voting rights to radically limited individuals on the grounds that such a denial could only be based on a rationale that would restrict voting rights far more extensively (2009, 349): Any reason that can be offered [for excluding individuals with radical cognitive limitations] would also be a reason to exclude docile and deferential people, people who vote without knowing anything about the candidates, and so forth. We have opted for an understanding of the franchise that is non-elitist and non-exclusive, rejecting Mill’s educational oligarchy.

But the reason for excluding radically limited individuals is not that they will vote badly, but that they cannot vote at all. The right to vote, as Nussbaum recognizes, can be exercised irresponsibly; it can also be waived, and often is, as shown by the low turnouts for most U.S. elections. Indeed, the very fact that the right to vote encompasses the right to vote badly poses further problems for surrogate voting. A surrogate could not responsibly exercise her client’s right to vote irresponsibly, by, say, voting for a charismatic candidate who would endanger her client’s interests. In doing so, he would violate his duty to act in his client’s best interests. At best, he would face a conflict between his role-based duties to protect his client’s interests and to exercise her liberty to ignore those interests. Nor is it obvious that he could simply decline to vote on his client’s behalf

in most elections, mimicking the behavior of a majority of her fully enfranchised fellow citizens. It is instructive to compare Nussbaum’s proposal for surrogate voting with one recently made by Brighouse and Fleurbaey (2010) for ensuring that the interests of citizens with serious cognitive disabilities are adequately represented in the political process. Like Nussbaum, they maintain that those individuals should have their interests effectively represented, and that to the extent that they cannot represent themselves, they should be represented by trustees. But unlike Nussbaum, they regard such surrogate representation as denying, not realizing, their right to vote: in the case of individuals “unable to assess and advance their own interests, it appears inevitable that they should be excluded from the right to vote, even though this may involve some degree of stigmatization” (149). Thus, Brighouse and Fleurbaey treat surrogate voting as a form of exclusion, justified because it is necessary to protect the interests of the excluded: “[T]he motivation for excluding the seriously cognitively disabled is precisely that including them will mean that their interests are not represented well” (150). Individuals incapable of assessing or advancing their interests could hardly be expected to represent those interests effectively by going through the motions of voting. Nussbaum fails to recognize this tension between avoiding stigma and protecting interests.

THE HUMAN FORM OF LIFE Although surrogacy is presented by Nussbaum and others as a way to respect equality, it can also be seen as a way to ground it. Rather than assume that human beings with radical cognitive limitations are entitled to participate in the life of their community by virtue of their equality, it could be argued that because they can participate—with a little help from their surrogates—they must be accorded the same moral status as other human beings. In this way, the case for assisted participation may be seen as a way of reinforcing arguments that some have made to the effect that even the most radically limited humans have full moral status because they take part in “the forms of embodied common life open to distinctively human creatures.”3 Thus, Eva Kittay has argued that species membership matters to human beings not because of the mere biological affinities among us, but because “it means that we partake of a form of life, that is, we share interests, activities, hopes, dreams, fears, forms of sensual and motor experiences,

Cognitive Surrogacy, Assisted Participation, and Moral Status and ways of knowing the world and other humans, all of which are species-specific . . . . such nonindividual considerations [are] part of the rich moral tapestry in which moral considerations are set” (2005, 24–25). Similarly, Stephen Mulhall argues that we treat the severely disabled as fully human “because they are our fellow human beings, embodied creatures who will come to share, or have already shared in our common life, or whose inability to do so is a result of the shocks and ills to which all human flesh and blood is heir” (2002, 18). Defenders of participation in human forms of life as the basis for moral status might well wish to avoid or minimize Mulhall’s problematic recourse to a species-specific notion of misfortune (“shocks and ills to which all human flesh and blood is heir”) to include human beings incapable of participating in common life. Among other problems, the appeal to misfortune appears to rely on strictly biological differences—speciesspecific norms—in a way that the forms-of-life argument seeks to avoid. The claim that human beings with radical cognitive limitations can be assisted in participating in status-conferring forms of life may offer a more promising alternative. Made explicit, this “constructivist” response would go something like this: 1. Participation “in the forms of embodied common life open to distinctively human creatures,” or the potential for such participation, is a source of moral status, at least vis-à-vis other human beings. 2. Contra McMahan (2005), radically limited human beings can participate in these forms of life, while animals with equal or greater cognitive and social capacities cannot. 3. This is because (a) radically limited human beings can be given assistance that will enable them to achieve such participation, and (b) animals with equal or greater capacities cannot be given such assistance, because their form of embodiment precludes participation, or because the required kind of assistance cannot cross species boundaries. We will question 3(a)—the claim that the kind of assistance that humans with radical cognitive limitations can receive would enable them to participate to the extent required by point 1. There is also reason to be skeptical about (b)—the claim

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that intelligent animals could not be assisted to participate in “distinctively human” forms or life. If the level of participation required were minimal enough to be attained by radically limited human beings with sufficient assistance, it could presumably be attained by many domesticated animals if they received such assistance—unless distinctively human biological features were necessary for receiving that assistance. Humans with radical cognitive limitations could have a potential for assisted participation that intelligent animals lacked only if “human forms of embodiment” were necessary to receive the requisite assistance. Proponents of the forms-of-life position have not been very forthcoming about what the minimal forms of assisted participation would be. If participation in those life-forms is possible for radically limited human beings, it cannot require that they acquire a language, culture, or specific “ways of knowing” (McMahan, 2005). Perhaps such participation need not involve structured social or political activities at all, just certain dayto-day interactions among members of human families or communities. The claim would be that radically limited human beings could, with assistance, participate in such routine interactions in ways that even the most intelligent, sensitive, and domesticated animals could not. If actual participation, however minimal, were required for moral status, many or most human beings with radical cognitive limitations would lack that status, because few have the skilled, concerted assistance that could make even that minimal participation possible for them—if anything could. Further, even if some radically impaired human beings had moral status on this basis, they would have it only contingently—the necessary assistance could be lost or withdrawn at any time. Thus, it seems more promising to understand this argument as claiming that a certain kind of potentiality grounds the equal moral status of human beings with radical cognitive limitations; that all human beings have the potential to participate in distinctively human forms or community life and that no (or almost no) animals have that potential. Although the notion of potentiality is notoriously elastic (see McMahan, 2002), it may be reasonable to extend the potentiality for participation in distinctively human activities to those who can be enabled to participate by cognitively unimpaired human beings. This assistance could take two distinct forms: first, the kind of representation or surrogacy proposed for more structured social and political activities, in which the assistant

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would serve as an active intermediary between the limited individual and the community; second, a nurturing or pedagogical role, in which the assistant would enable the limited individual to participate, by herself or with further assistance, in the family or community. We begin with the latter.

P E DAG O G I C A L S U R RO G AC Y One way to flesh out the potentiality claim would be to focus on the capacity of human beings, including radically limited human beings, to respond to each other, a capacity that would give limited human beings the possibility of developing a social responsiveness that even higher animals could not acquire. On this view, the potential for developing such responsiveness is limited to human beings with the psychological capacity for some degree of mutual acknowledgment and reciprocity. But that capacity may develop only in the context of sustained human interaction. When human beings come into contact with other humans, limited or not, they expect responses quite unlike those they expect from chimpanzees, dolphins, or dogs. The mere fact that a 10-yearold boy or 40-year-old woman looks human evokes different actions and emotions from those evoked by non-human animals. These actions and emotions may, in turn, elicit distinctive behavior and affect the psychological development of cognitively limited humans. Precisely because cognitively unimpaired humans respond to cognitively limited human beings in ways they don’t respond to chimpanzees, dolphins, or dogs, the former may acquire a moral and emotional sensitivity toward others humans that cannot be acquired by non-human animals in regular contact with human beings. This reciprocal pattern of emotional response may establish relationships of mutual caring and concern that, it could be argued, ground the moral status we accord other human beings, irrespective of cognitive ability.4 This is an empirical hypothesis, and one whose exclusivity would be questioned by those familiar with the kind of responsiveness that some animals have developed as the result of sustained interaction with human beings. If those fortunate animals acquired the kind of social responsiveness to human beings typically limited to other humans, then many of their biological kin have the potential to do so.5 And even if almost all animals lacked this potential for such human socialization, it seems that not all humans have it. Some human beings, and not merely anencephalics, appear to

lack the capacity for recognition and reciprocity necessary for this kind of socialization. A variation on this argument would deny that the issue is contingent, claiming that the very kind of interaction required for the evocation of social responsiveness was limited to beings with a moreor-less human form. Humans cannot inculcate the required sort of social responsiveness in nonhuman animals because they can attribute the potential for such responsiveness only to those with a human form or appearance. This claim concerns the limitation of the givers, not the recipients, of assisted participation: the inability of human beings with standard cognitive function to recognize the responsiveness of beings that lack human features. Because this claim treats a human appearance as a necessary but not sufficient condition for developing social responsiveness, it would not imply that all humans had that potential. But it would exclude other animals, unless they looked or behaved sufficiently like humans. Such a claim could be based on suggestive passages from Wittgenstein (quoted by Hanfling, 2001, 153): Only of a living human being, and what resembles (behaves like) a living human being, can one say: it has sensations; it sees; it is blind; hears; is deaf; is conscious or unconscious (PI 282). . . . We can only say of a human being, and of what is like one, that it thinks. We can also say so of a doll (PI 359).

It is hard to know what to make of these claims. Human beings frequently and easily anthropomorphize animate beings and even inanimate objects; they attribute all sorts of thoughts and sentiments to them with varying degrees of conviction. Indeed, Wittgenstein observes that “in a fairy tale, a pot too can see and hear” (PI 282, Hanfling, 2001, 153). Perhaps in making such attributions, we implicitly endow animals and inanimate objects with human-like forms, features, and behavior, like cartoon characters. But if so, that merely suggests that their actual appearance is no barrier to psychological attribution. Often, these attributions are not sustainable, but their failure appears to be an empirical rather than a conceptual matter. If we can imagine thinking, feeling beings embodied in chairs or snails, perhaps such beings could exist, however unlikely we are to encounter them. And although it may be much easier in general for us to attribute thinking and feeling to beings with human form6, this

Cognitive Surrogacy, Assisted Participation, and Moral Status seems to be a matter of degree, not a firm constraint imposed by our language or conceptual scheme. Moreover, some highly self-conscious, sensitive, and rational human beings barely resemble typical humans in appearance or behavior—they lack limbs, or most facial features, or cannot move in standard ways, or at all. While communicating with such humans may pose a practical challenge, it hardly presents a conceptual one.

A S S I S T E D PA R T I C I PAT I O N The second type of assistance that might enable a radically limited human being to participate in human social life requires a representative or surrogate to mediate between the individual with a radical limitation and her family or community. Unlike the claim that radically limited human beings have the potential to be drawn into human social life though sustained nurturing—an empirical claim about their potential to acquire a capacity for social responsiveness they initially lack—this claim does not rest on their developmental potential. Rather, it concerns the potential for an individual who lacks self-awareness or social responsiveness to participate in a human community with the help of a representative or surrogate. The difficulty we see with this suggestion concerns the question of agency. The agency of a surrogate acting on behalf of a cognitively limited individual cannot be attributed to that individual unless she guides or endorses it. But an individual with radical cognitive limitations— who cannot see herself as a temporally extended being or engage in simple practical reasoning— cannot guide or endorse her surrogate’s decisions or actions, so it is unclear how those decisions or actions can be regarded as hers. Moving someone’s arm in a manner that she enjoys is not helping her to move her arm unless she contributes to, directs, or authorizes the movement. Somewhat analogously, participating as someone’s surrogate in social activities is not enabling that individual to participate if she cannot contribute to, direct, or endorse those activities; if she cannot understand the nature of those activities or her roles in them. The question of whether such assisted “participation” is possible for non-human animals does not need to be addressed if it is not possible for radically limited humans. The difficulty of attributing agency to the assisted individual is reinforced by a comparison

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with the more modest proposals that have been made for enlarging the autonomy of people with less severe cognitive limitations. Leslie Francis, for example, raises “the possibility of constructing individualized conceptions of their good by, and with, and for people with lifelong intellectual disabilities. . . . . [C]onceptions of the good can be individually tailored and rooted in individual psychological states without being arrived at independently” (2009, 206). In response to the charge that such a construction would merely serve the interests of cognitively limited individuals and not develop their autonomy, Francis introduces the notion of a “mental prosthesis” : We use assistive devices, prostheses, and partners all the time, to varying degrees and ends. Some of these are ‘internal’—mnemonic devices such as triggers for people’ names—but others are not: notebooks, visual aids and other people. (Francis, 2009, 208)

Francis and Anita Silvers (Silvers & Francis, 2009) develop this analogy: [A]s a prosthetic arm or leg executes some of the functions of a missing fleshly limb without being confused with or supplanting the usual fleshly limb, so, we propose, a trustee’s reasoning and communicating can execute part or all of a subject’s own thinking processes without substituting the trustee’s ideas as if it were the subject’s own. (Silvers & Francis, 2009, 485)

They propose a “standard of authenticity” for the idea of the good that results from the interaction of the individual “subject” and her trustee: Such ideas cannot emerge authentically, we contend, except where the subject is the sole inspiration for the conceptualization the trustee advances. Every component of the idea of the good should be personalized to the subject and in this regard be singular. (Silvers & Francis, 2009, 493)

But the subject could hardly be said to employ her trustee as a prosthesis unless she played a more active role than that of inspiring or informing the conceptualization of the good. A suit, however closely fitted, is made by the tailor, not the wearer. Even if the wearer indicates where the fit is too tight or loose, her role is far too passive to make her a co-creator. If the personalization of the good

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requires no more participation than the tailoring of a suit, it would not be enough to establish agency. But any more active role, such as evaluating specific formulations offered by the surrogate, or suggesting (even nonverbally) how they might be amended, would be beyond the capacity of an individual with radical cognitive limitations.7 It may be helpful to contrast the issue here with the controversy over facilitated communication: the use of trained individuals to assist people with autism and other conditions in expressing their thoughts through keyboard typing. That controversy concerns the authorship of the communication, the extent to which it can be attributed to the assisted individual rather than the facilitator. Despite widespread disagreement over how to test for authorship, there is general agreement about what would count against it—for example, the assisted individual could not have been the author if she could not have known the information she allegedly communicated. But the question of authorship cannot even arise for an individual who cannot form the beliefs or judgments conveyed by such communications. This problem of agency would be much less acute if the individual with radical cognitive limitations had once enjoyed fuller cognitive function. If she left instructions, or even expressed her views about what she valued or how she desired to live, the surrogate could be seen as executing her will. Her past directives or statements might even be regarded, as James Nelson (2009) suggests, as a present part of her “extended mind.” But such grounds for agency are not available for the individual whose limitations are congenital.

CONCLUSION The upshot of our skepticism about the various forms of assisted participation we have reviewed, as ways of respecting equality or as ways of grounding it, can be summarized as follows. We certainly do not deny that radically limited human beings can benefit from, and have some claim to, sustained assistance from other human beings, not merely to protect their interests in survival and comfort, but to improve their psychological and social lives and their control over their environment to the extent their limitations permit. Nor do we deny that the potential of actual human beings with cognitive limitations is often unknown and easy to underestimate, so that it may be appropriate to presume that all human beings (at least those possessing some higher brain function) have the potential to participate in human

forms of life. Yet there will almost certainly be some human beings for whom that presumption cannot be sustained (McMahan, 2009). We have found no reason to believe that all human beings with radical cognitive limitations can take part in human social life through the assistance of other human beings, in ways that all or most nonhuman animals cannot. And if there are other grounds for concluding that human beings with radical cognitive limitations have the same moral status as their fellow human beings, that status would not give them the same array of social and political rights. For they could not exercise many of those rights, nor could those rights be meaningfully exercised by others on their behalf.

Notes 1. David Wasserman would like to thank Adrienne Asch, Daniel Putnam, Jeff Blustein, and Anita Silvers for thoughtful discussions on cognitive limitation and moral status, which informed his contribution to this paper. Jeff McMahan would like to thank David Wasserman for doing most of the writing. 2. It is not hard to imagine contingencies that would further expose the anomalies of surrogate representation. For example, what if the surrogate and his principal were both summoned for jury duty at the same time? Would the surrogate go through the voir dire twice? Suppose he was selected both in his own person and as a surrogate. Might he vote for acquittal in his own name but for conviction in his role as surrogate? The anomalies in serving such a dual role would be less acute if the surrogate were merely serving as an aid or interpreter for an individual with lesser cognitive limitations, since that individual could actually take her own seat on the jury, and could be seen as making her own decisions, albeit mediated and probably influenced by the surrogate. 3. Mulhall (2002). For objections to this type of argument, see McMahan (2005). 4. We owe this suggestion, and the language in which it is framed, to Adrienne Asch. 5. Admittedly, if such animals could acquire human social responsiveness, it might prove highly maladaptive in their usual habitats. But that would hardly make their achievements less worthy of respect. 6. In some cases, it may be too easy. Other humans beings sometimes attribute consciousness to human beings who arguably lack it, as in the controversial case of Terry Schiavo. 7. Moreover, it is not clear why intelligent animals could not give attentive human surrogates equally detailed and idiosyncratic information about their preferences. Unless human embodiment is necessary for such communication, there would be no barrier to constructing a personalized conception of the good for

Cognitive Surrogacy, Assisted Participation, and Moral Status many animals, particularly those with whom humans shared their domestic lives. And the necessity of human embodiment for this purpose has yet to be shown.

References Brighouse, H., & M. Fleubaey (2010). Democracy and proportionality. Journal of Political Philosophy (2):137–155. Francis, L. (2009). Understanding autonomy in light of intellectual disability. In K. Brownlee & A. Cureton, Disability and Disadvantage (New York: Oxford), pp. 200–215. Hanfling, O. (2001). Thinking. In H. Glock, ed. Wittgenstein: A Critical Reader (Malden, MA: Blackwell). Kittay, E.F. (2005). The Ethics of Philosophizing: Cognitive Impairment at the Margins of Personhood. Unpublished manuscript. McMahan, J. (2002). The Ethics of Killing (New York: Oxford).

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McMahan, J. (2005). Our fellow creatures. Journal of Ethics 9:353–380. McMahan, J. (2009). Radical cognitive limitation. In C. Brownlee & A. Cureton. Disability and Disadvantage (New York: Oxford), pp. 240–259. Mulhall, S. (2002). Fearful thoughts. London Review of Books 24:18. Nelson, J.L. (2009). Alzheimer’s disease and socially extended mentation. Metaphilosophy 40(3/4): 462–474. Nussbaum, M. (2009). The capabilities of people with cognitive disabilities. Metaphilosophy 40(3/4): 331–351. Silvers, A., & L. Francis (2009). Thinking about the good: reconfiguring liberal metaphysics (or not) for people with cognitive disabilities. Metaphilosophy 40(3/4):475–498.

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27 Health Care Reform and Children’s Right to Health Care A Modest Proposal L O R E T TA M . K O P E L M A N

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n 2010, the U.S. adopted revolutionary legislation intended to cover the uninsured and increase access to good health care. Many of those helped will be children. Formidable forces nearly defeated this legislation and still oppose it. Some have philosophical objections to forcing persons to purchase health care insurance or to its underlying view of health care as a right. They argue that such “reforms” unfairly limit liberties and discourage responsible behavior. A weakness of these critics’ position is that many children have parents unable or unwilling to make good health care choices for them. The data show that currently too few protections exist for too many children. Prior to this legislation, in 2008, the U.S. Census Bureau estimated that 49 million people in the U.S. lacked insurance, and 9.9%, or 7.3 million, of them were children; the percentages were 10.5% for African-American children, 10.9% for Asian-American children, 15.7% for children living in poverty, and 17.2% for children with a Latino heritage (DeNavas-Walt et al., 2009). The situation is largely unchanged. The U.S. Census Bureau reported that in 2010 7.3 million or 9.8 % of children under 18 years of age were uninsured and 15.4% of children were living in poverty (DeNavasWalt et al., 2011). The Children’s Defense Fund (2012) recently placed the number of uninsured children even higher, at 9.4 million. With the new reforms, poor children should gain access to more comprehensive services and care because beginning in 2013, the federal government has committed $8.3 billion to improve Medicaid payment rates. Moreover, parents will no longer find that their children can be excluded from their insurance because of preexisting conditions.

The American Academy of Pediatrics (AAP, 2010) writes: The health reform package provides ageappropriate benefits to all children in a medical home: All Bright Futures services—the definitive standard of pediatric well-child and preventive-care—will now be covered for children with private and public insurance as an immediate benefit for no-copay. There is also a new commitment in Medicaid to help fund the medical home, and health reform ensures health care coverage for children in the United States, including young people up to age 26.

Others object to these reforms on the grounds that they are too costly or funds are needed more elsewhere. This law will monitor private insurance providers more closely, add an estimated 16 million persons to the Medicare roster, and provide low- and middle-income persons subsidies for private insurance. The nonpartisan Congressional Budget Office estimates that in the next decade this law will cost about $938 billion (New York Times, 2010). The U.S. health care system currently consumes 16% of the gross domestic product (GDP), and the Congressional Budget Office predicts soaring costs without reforms. These estimates, along with concerns that more expenditures may not lead to better health outcomes in the U.S., garnered wide support for these reforms in insurance and medical circles (The Economist, 2009). It also set into motion what will be fierce competition for limited resources.

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As the 2010 health care reforms play out and attempts are made to control costs, it seems likely that there will be great pressure to increase or at least not decrease services for specific populations grouped by such things as their disease, location, ethnic group, or age. For example, our population is aging and this increases demands for expensive services like long-term nursing care or costly technologies such as hip and knee replacements. Since children cannot vote or lobby for themselves, others will have to represent their interests in this highly politicized debate. In this time of transition when interest groups jockey to gain special consideration, dangers exist that children’s needs will be marginalized and they will not get their fair share of the health care dollars. What is children’s fair share of the health care dollar? In what follows, a modest proposal is defended: As we make the transition to a new set of policies, we should adopt as a general principle that, unless a good case can be made for doing otherwise, at minimum whatever state-funded goods, services, or benefits that are available to adults should be available to children on at least as favorable terms; there is a prima facie duty to provide children with whatever state-funded health care treatments, specialists, diagnostic strategies, specialduty nurses, innovative care, painkillers, dental care, experimental treatments, or other health care available for adults to children on at least as favorable a basis. This is a prima facie not an actual duty because good reasons sometimes exist for excluding children from state-funded health care available to others. During epidemics it might be justified to provide police, firefighters, and clinicians scarce inoculations because of their roles in providing safety or care for others. Veterans are awarded special health care benefits for their service to the country. It might, moreover, be justified to give soldiers scarce medical resources during war because they must defend the state. Age bias, however, is often unjustified as well as hard to detect. Because different programs affect adults and children differently, subtle but important age biases may exist even in programs that seem to offer the same benefits. Children, for example, rarely require long-term nursing care or need treatment for dementia or prostate cancer. In addition, systems have age biases against children when they discount long-term future benefits (Brock, 2001). Bias can also exist in the relative ease of access to benefits for adults and children. For example,

programs for poor and near-poor children in the United States have been confusing even to professionals as they try to understand the different criteria in different locations; bewildered parents can face a frustrating series of barriers when trying to use these programs for their children (Pear, 2000; Schroeder,2001). In contrast, access to Medicare, a program for older adults, is simple and effective. Upon reaching their 65th birthday, those eligible for Medicare get a card in the mail easily used for that purpose. They can receive an array of federal- or state-supported programs and purchase heavily subsidized additional insurance as well. Rather than take benefits from older citizens, we should at least extend them to children and test out systems for biases against children.

AN ARGUMENT FROM ANALOGY In what follows, assume that adults receiving health care through programs such as Medicare are entitled to whatever state-supported health care benefits they receive, and the relevant reasons for providing them these benefits concern (a) empathy and sympathy, (b) social utility and efficiency, (c) equality of opportunity, or (d) the best interest of vulnerable people. I will argue that these arguments are at least as persuasive when considered in relation to children. Consequently, without some compelling justification, any statefunded health care available to adults should be available to children. This is an argument from analogy. Such arguments establish their conclusions from their premises not with certainty but with greater or lesser degree of probability based upon the degree of similarity or differences among the things compared. The success of this or other arguments from analogy depends, in part, on agreement about what things constitute relevant similarities and differences for our comparison. Some differences between adults and children seem irrelevant from the point of fairness in allocation of health care resources. Unlike adults, for example, children cannot vote. While this difference may explain why children sometimes lack benefits available to adults, it seems irrelevant with respect to the fairness of distribution of health care. It seems unjust to deny reconstructive surgery to children with congenital craniofacial anomalies, for example, while offering comparable care for adults who have been in car accidents. While the causes differ, there are obvious similarities between the needs of people in both groups to restore their function

Health Care Reform and Children’s Right to Health Care or appearance. The social utility of well-adjusted and productive citizens should easily justify such expenditures for children as well as adults. Moreover, added years of benefit for children illustrate why the case for children is often at least as good as it is for adults. If it is good for adults to gain easily accessible federal- or state-funded health and dental care, then a useful working model would be that such services and benefits should also be available in the same easily accessible way to children.

LIMITING THE FOCUS The focus of my remarks concerns inequalities in the U.S. The first reason for concentrating on the U.S. is that, until these 2010 reforms, it has increasingly organized its health care systems to respond to personal choice and market forces. As other countries are hard pressed to stretch their resources, they too may be tempted to adopt some such features (Maynard & Bloor, 1996). Yet this arrangement creates an unjust bias against children based upon many theories of justice (Kopelman, 1995; Kopelman & Palumbo, 1997). In terms of a utilitarian theory of justice, for example, it does not produce the greatest good for the greatest number. Treating child’s illnesses is efficient, generally providing longer-term benefits than for adults. In terms of an egalitarian theory of justice, it does not promote equality, equality of access or equality of opportunity. Children who cannot hear the teacher or see what is written on the board cannot compete as equals. In terms of a libertarian theory of justice it constitutes an unjust seizure of property to provide state-funded benefits to competent and sometimes even wealthy adults while neglecting incompetent and needy persons. A second reason for focusing on the U.S. is that great health care disparities for children have long existed despite the U.S. spending more per capita on health care than any other country. Poor and uninsured children are far more likely than other children to have unmet health needs (Starfield, 1991, 2000; Children’s Defense Fund, 2012; DeNavas-Walt et al., 2011; Abdullah et al., 2009). Uninsured children are disproportionately Black, Asian, and Latino (DeNavas-Walt et al., 2011). Compared to White children, 60% more Black children have unmeet health care needs, and Latino children are three and a half times more likely to lack a medical home where they regularly receive their medical care (Children’s Defense Fund, 2012). Hospitalized children without

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insurance are sicker for longer compared to those who have it (Abdullah et al., 2009). The World Health Organization (2000) compared health outcomes in the U.S. to other industrialized countries that spend far less, ranking the U.S. as 37th among developed countries, after Costa Rica and before Slovenia. The U.S. ranks the worst for low-birthweight infants, for neonatal and infant mortality, and in years of potential life lost. Moreover, it ranks near the bottom for post-neonatal mortality, as well as for almost all categories of life expectancy. Paul W. Newacheck et al. (2000) write that unmet health needs affect children’s long- and short-term health status and function). Of those without health insurance in the U.S., more than 9.9%, or one in 4.5, are children (DeNavas-Walt et al., 2011; Children’s Defense Fund, 2012; The Economist, 2009). In contrast, many adults, including all those over 65, some of whom are extremely wealthy, receive high-quality health care at state expense. Moreover, optional programs for these adults are often heavily subsidized. For example, Part B of the U.S. Medicare program offers those adults over 65 who can afford it supplemental health care insurance at low cost. They are not really “paying their own way” in buying into these state-supported insurance programs, but paying disproportionately little for a great deal more in the way of potential services (Kopelman & Palumbo, 1997). In what follows I focus upon four arguments that presumably justify providing state-supported health care benefits or services to adults. I argue that they offer at least as much justification for providing them to children. They show that we should be motivated to provide good care for children and that without good and sufficient reason, it is wrong to exclude children because of their age or to provide health care benefits to adults and not to children.

E M PAT H Y A N D S Y M PAT H Y Many older citizens have access to state-supported health care programs unavailable to others based in part on empathy, sympathy, or concern for their well-being. Similar reasoning also offers at least as good a case for including children. Consider first the case for relating empathy or sympathy to just distributions generally. Empathy and Sympathy as a Grounding for Justice The 18th-century philosopher David Hume (1958, 1998) argued that sympathy served as the basis for

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justice and social solidarity generally. He maintained that the origin of morality and just systems is grounded in our common psychological and social natures. While personal relationships are inherently partial, they are preconditions of morality and just systems. He argued that moral reasoning originates in our common human nature, which is inherently social, and in our capacity for limited but educable benevolence. Aggregate data and abstract notions of public interest, he argued, do not affect us in a forceful way, especially when they seem contrary to our own interests. Yet our awareness of the plight of particular individuals can be deeply moving. Hume argued that self-interest and concern for others are linked because our private interests include not only some narrowly understood partiality for oneself, but also a natural partiality for family, friends, and members of our community. We learn, moreover, that it is in our long-term interest and happiness to deny some of our desires and support morality and just systems in order to live in a peaceful and orderly society. In the end, morality and systems of justice are so advantageous that we support them even when they occasionally thwart us or cost us more in taxes. Hume argued that our natural sympathy for others was the basis for our systems of justice where adults obtained liberty rights and rights to be provided with certain goods, services, and benefits. Promoting sympathy for children has been the key to establishing rights for them, as will now be discussed.

Empathy and Sympathy as a Basis for Children’s Rights As the 20th century advanced, so did the awareness that many children were neglected or abused by parents. This realization became a basis for social change, limiting parental rights to control the lives of their children. Access to good parenting, education, food, housing, and sanitation remains the most immediate means to enhance children’s well-being and opportunities. The consensus that children should also have basic health care and social services as a matter of justice developed over the 20th century as concern for them grew. Initially, advocates for better health and social care for the many impoverished, neglected, abused, and exploited children included those active in the women’s rights movement, doctors in the newly recognized specialty of pediatrics, and nurses who were a part of the visiting home health programs. As the century progressed, lawyers and

social scientists joined the reform movement. They attacked the long-dominant view that children were the property of their parents or guardians, and that the state had no authority to intervene even if the children were abused or neglected (Kopelman, 1997). Children gained rights to obtain certain kinds of medical care and to be protected from abuse, neglect, or exploitation; adolescents gained certain liberties such as the right to consent for certain kinds of treatments or services without parental approval or notification (Holder, 1985, 1989). Scientists further helped transform children’s programs through study of children’s growth, development, needs, experiences, illnesses, and perspectives, showing the importance of candor and respect for children’s views. Advocates for children saw the importance of making the public aware of their needs.

A Need for More Empathy and Sympathy Historically, empathy and sympathy for children helped generate social change, but there seems too little awareness of their current unmet health needs. Although the U.S. spends an unprecedented 16% plus of its GDP on health care, 7.3 million, or 9.9% of children are uninsured and do not receive basic health services (Children’s Defense Fund, 2012; DeNavas-Walt et al., 2011). The proportion of children in this country who are uninsured grew steadily over the 1980s and 1990s as the U.S. health-delivery systems turned to market forces to solve problems of cost containment and limiting access (Kilner, 1995; Budetti, 1997; McDonough et al., 1997). Families of the working poor suffered most from these cost-cutting efforts, since more employers sought savings by providing health care insurance for employees but not their family members, and fewer of these families could afford to buy health insurance on their own; this trend may continue (Bodenheimer, 1999). A program adopted in 1997 was intended to help the millions of uninsured children who were ineligible for Medicaid. The State Children’s Health Insurance Plan (SCHIP), passed by the U.S. Congress in 1997 and reauthorized a decade later, gave states an opportunity to provide insurance for many more children of the working poor (U.S. Title XXI, 1997). SCHIP provides annual grants for states to provide insurance for uninsured children either through Medicaid expansion or other state plans. Despite this, 1.4 million children lost insurance in 2006. This is attributed

Health Care Reform and Children’s Right to Health Care to loss of employer coverage for workers or their families without compensating increases in Medicaid or SCHIP programs (DeNavas-Walt et al., 2011; Abdullah et al., 2009) Health care reform should make it easier for all children to gain access to good care. To build more support for this change, the public needs to realize the difficulties faced by children with unmet health needs. Programs available to uninsured and underinsured children are often complex and confusing (Pear, 2000). Working-poor parents currently must traverse a tangle of hardto-navigate programs with different standards in different regions. These plans leave many children uninsured and, because of serious gaps in coverage, they also leave children with serious unmet health care needs. As noted, the complexity of these programs, when contrasted to the ease of access to Medicare for people over 65, raises issues of fairness. A key to building social support for good health and dental care for underinsured and uninsured children may be to make their needs more visible. This should help motivate people to act in their best interest. Not only will providing good health care help children flourish and enhance their opportunities, but it is also efficient and socially useful. Improving public health and preventing later costly illnesses fosters a healthy, stable, and productive workforce now and in the future. In addition, we need to build in more concern for parents of these children. Some cannot leave work, others cannot leave their homes, and still others lack resources for transportation. The plight of many of these families and children is frequently too hidden from the general social view to make an impact on social policy

E Q UA L I T Y O F OPPORTUNITY The kind of health care available to children may have a profound impact on their lives, so a society committed to equality of opportunity for children should provide adequate health care for them. Norman Daniels (1985), building on Rawls’ work (1971, 1993), argues that while we should provide basic care to all, we should redistribute health care benefits more favorably to children. The moral justification for giving children access to basic health care, argues Daniels, rests on social commitments to what he and Rawls call “fair equality of opportunity” (or affirmative action). Health care needs are basic insofar as they promote fair equality of opportunity. Health care for

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children is especially important in relation to other social goods, because diseases and disabilities inhibit children’s capacities to use and develop their talents, thereby curtailing their opportunities. Daniels holds that we have to use objective ways of characterizing medical and societal needs. The ranking of needs helps determine what is basic and who profits most from certain services. Using the difference principle, free and additional health services might be provided to the poorest children so they could compete more effectively with those from more affluent homes. Clearly, sick children cannot compete as equals in school or athletics, and illness endangers their chances to develop their capabilities or talents. Studies show a relationship between health outcomes and income (Daniels et al., 1999; DeNavas-Walt et al., 2011; Children’s Defense Fund, 2012; Abdullah et al., 2009). This has an observable impact on children’s health. The data show that children living in low-income homes in the U.S. have fewer opportunities because they get sick more often and stay sick longer when they get sick (Starfield, 1991; Abdullah et al., 2009 Children’s Defense Fund, 2012). Children from families of the poor and working poor bear the worst of such inequalities, adding harms of lost opportunities from poor health care to their social disadvantages (Starfield, 1991; DeNavas-Walt et al., 2011; Children’s Defense Fund, 2012). Children’s main health problems often arise from lack of basic and inexpensive care, including dental pathology, vision impairment, meningitis, allergies, asthma, hearing loss, and other chronic illnesses. Consequently, many children in the U.S. suffer not only losses of well-being from poor health care, but also losses of opportunities. Some state-supported programs that exclude children, such as health care benefits to veterans or members of Congress, honor people’s special contributions to society. Yet these benefits may be regarded as state-supported prizes for which everyone should be able to compete fairly. However, sick children cannot compete as equals with healthy children. During children’s crucial and most vulnerable early years, their health care may determine their opportunities. Children living in low-income homes are more likely than richer children to suffer ill health, become seriously ill, and get multiple illnesses when they do get sick (Starfield, 1991; DeNavas-Walt et al., 2011; Children’s Defense Fund, 2012; Abdullah et al., 2009). Children cannot compete fairly for these opportunities if they are sick or in pain or cannot

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hear or see their teacher. Children are rarely responsible for their illnesses, affluence, or social class. Yet health varies directly with affluence and social class (Daniels et al., 1999; DeNavas-Walt et al., 2011). So if some state-supported health care should be regarded as prizes for people’s special contributions, and if all should be able to compete for these awards fairly, then fair competition requires good health care for children.

SOCIAL UTILITY AND EFFICIENCY Another persuasive reason for providing adults access to basic health care is that it has great social utility, since a healthy population maximizes productivity. This reason applies to children as well. Many Common Problems Are Inexpensive to Treat Relatively inexpensive interventions can alleviate many problems common in children, including vision impairments, hearing loss, dental pathology, allergies, and asthma as well a variety of chronic disorders that can cause considerable functional impairment (Starfield, 1991; Newacheck et al., 2000; DeNavas-Walt et al., 2011; Children’s Defense Fund, 2012). Some of the least expensive and most beneficial interventions, moreover, are education about the benefits of exercise, a good diet, prevention of teenage pregnancy, and avoidance of alcohol, tobacco, and harmful drugs. Providing good health care to children would not only greatly increase their overall well-being and opportunities, but also would be socially useful and costeffective. It improves public health, prevents later costly illnesses, and benefits the current generation of adults who, when aged, will need support from a healthy, stable, and productive workforce. In many cases, early intervention may prevent morbidity that plagues people for life. For example, prevention of childhood caries and common dental problems is cost-effective for society as well as extremely important to the individual. Dental pathologies represent some of the worst common childhood infections, and those most apt to suffer are poor and minority children. Yet our health care system and insurance plans tend to discount the importance of good dental health. While Medicaid technically covers dental care, poor reimbursement policies are discouraging. Efficiency In some countries, children receive health or dental care unavailable to adults because the

treatments have lifelong benefits and avoid later costly problems. Providing children with statefunded routine care, mass screening, prevention, and other programs available to older adults also offers society great benefits. Interventions that can benefit both children and adults generally provide longer benefits to children. Schemes that favor efficiency by means of cost-benefit (where costs and benefits are reduced to monetary considerations) or cost-effectiveness analyses (which consider, in addition to monetary costs, the person’s quality of life and number of healthy years) generally favor interventions and policies that target children (Mackie et al., 1996). Advocates for using such analyses assess cost and benefits to set priorities in terms of quality-adjusted lifeyears (QALYs), which measure the “number of years someone will likely live after the intervention multiplied by a percentage reflecting the quality of life to be experienced during those years” (Kilner, 1995, p. 1073). Those who favor setting priorities in this way argue that the QALY method is fair and would allocate resources more equitably to children (Mackie et al., 1996). While a utilitarian moral stance might not always justify an age bias toward children, it would certainly find the age bias against children that we have in the U.S. unjust (Kopelman, 1995; Kopelman & Palumbo, 1997). Maximizing the good would favor including children in many state-supported services and benefits now provided only to adults. Furthermore, arbitrarily discounting long-term effects creates an unjust age bias against children in these calculations (Brock, 2001).

D U T I E S TO P ROT E C T T H E BEST INTERESTS OF INCOMPETENT PEOPLE Societies generally recognize duties to act in the best interest of incompetent or incapacitated adults and children. These vulnerable citizens cannot handle their own affairs and need to be protected. With this help, many will be better able to flourish and be productive citizens. Special state protections for children include “safety nets” of health care and social services, if their parents cannot or will not provide good care. As discussed, however, the data show they often offer inadequate protection (Pear, 2000; Children’s Defense Fund, 2006). The best-interests standard is an important duty requiring surrogate decision makers to act in a way that maximizes net goods or benefits and minimize net harms for minors or persons

Health Care Reform and Children’s Right to Health Care lacking decision-making capacity. It is used in a number of ways and two are particularly relevant to our discussion about the duty to provide children with their fair share of health care dollars. First, this standard is used by the courts after a finding that guardians are abusing, neglecting or endangering their wards. Second, the best interests standard also serves as a goal to establish policies and prima facie duties (Kopelman, 1997, 2007). Each will be discussed in more detail below.

A Threshold for Intervention and Judgment First, the best-interests standard has a role to play in the law after agents of the state determine children are neglected, abused or endangered in their parents’ care. If a child’s parents make such bad health care choices that they endanger their child, clinicians have duties to seek state intervention to protect the child’s interests. Parents endangering their children, even for religious reasons, may find the courts willing to take custody temporarily or permanently to serve the best interest of the child. To override parental authority the state must prove, often by clear and convincing evidence, that the child has suffered or is in danger of suffering serious harm (Krause, 1986). Once the threshold has been met, the courts apply a second test that can be couched in terms of the child’s best interests to determine what to do with the child (Kopelman, 1997). For example, a parent who denies a life-saving transfusion to his child would meet the two-step test: a judge should decide, first, that the child is in danger within his parent’s care, and second, that having transfusions is in his best interest. The use of the best-interests standard as a threshold for interventions and reasonable judgment shows that society recognizes duties to protect children from abuse or neglect because they are vulnerable. Seeking the Best Second, the best-interests standard also can serve as a goal to help provide children the best available benefits, goods and services. If surgery is the best option to treat a child’s condition, then there is a duty to provide it, all things considered. Even if it is not possible for each child to be provided with ideal health care, norms about what is best can help establish goals, direct actions, set priorities, and establish policies. Such norms are related to prima facie duties and assumptions about what constitutes acceptable parenting, duties of the

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state, professional responsibilities, unacceptable danger to children, good health care, and so on. Ideals help us shape our decisions and priorities, even when they cannot be entirely fulfilled. Balancing prima facie duties helps forge our actual duties.

W H AT I S C H I L D R E N ’ S FA I R S H A R E O F T H E RESEARCH DOLLAR? A dilemma exists about enrolling children as research subjects. Since they cannot give informed consent, they need special protections; yet they must also have access to safe and effective therapy. These goals of access and protection can conflict. With too few protections, children selected as subjects may be exposed to unjustifiable risks for the benefit of gaining knowledge for everyone. However, if there are too many obstacles it becomes difficult to do research, gather information, and make good therapeutic decisions for children. While children and adults often have the same diseases and are treated with the same interventions, few modalities have been well tested on pediatric populations, and a majority of marketed drugs are unlabeled for children’s use (Institute of Medicine, 2004). Given this lack of information about safety and efficacy, clinicians face difficult choices. If they use untested interventions, they may endanger their patients. Yet if clinicians only use tested interventions, they are severely limited in their treatment options. Moreover, over the past 30 years, access to participate in research has become increasingly seen as an opportunity for cutting-edge treatment and access to good care. Being excluded because of age, gender, or race seemed unfair. This gap between good research for adults and children generated new policies such as one that requires testing of new treatments on pediatric populations unless a waiver is obtained. This rule, called “the pediatric rule,” was adopted in 2002 and heralded by advocates for children. The problem remains, however, of how much risk is acceptable for children selected as subjects. For adults, the problem of how much risk is acceptable in some study is solved in part by giving or refusing their informed, voluntary, and competent consent to participate in the research. Obviously children cannot give such consent for themselves, although guidelines require that they give age-appropriate assent (U.S. 45 CFR 46; Institute of Medicine, 2004).

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The current policy in the U.S. and many other countries is to permit local institutional review boards with parental consent (and other safeguards) to approve three categories of risk. They can approve those studies (1) having only a minimal risk, (2) holding out direct benefit to the children (such a study offering them at least as good treatment for their cancer as other options), or (3) constituting only a minor increase over minimal risk, which examine the condition of the children (such as diabetes) and are commensurate with their experiences (U.S. 45 CFR 46; Kopelman, 2004). In the U.S. another category exists that would permit higher risks with federal approval; this category was included because the drafters recognized that in unusual circumstances, such as the polio epidemic, higher risk levels might be permitted (U.S. 45 CFR 46; Institute of Medicine, 2004; Kopelman & Murphy, 2004). Since people interpret guidelines differently, disputes exist about the meaning of “minimal risk,” “minor increase over minimal risk” and thus over how much risk should be permitted when subjects are unable to give consent for themselves. Consider the controversy about a decision from the Maryland Court of Appeals (its highest court) in Grimes vs. Kennedy Krieger Institute about children’s participation in what it called “nontherapeutic” studies or studies not intended to provide the subjects with direct benefits (as in a cancer treatment study). Eventually the court clarified in a “Denial of a Motion for Reconsideration” (2001a) that such nontherapeutic studies could be permitted if they had no more than a minimal risk. At first, however, it seemed as if this court forbid all nontherapeutic research having any risk of harm: : “We hold that in Maryland a parent, appropriate relative, or other applicant surrogate, cannot consent to the participation of a child or other person under legal disability in nontherapeutic research of studies in which there is any risk of injury or damage to the health of the subject” (Grimes, 2001, p. 89). Investigators and children’s advocates immediately objected that this holding could paralyze important and safe research projects, thus harming children as a group in its attempt to protect their rights and welfare. The Maryland Court of Appeals was asked to consider whether investigators or research entities such as the Kennedy Krieger Institute (KKI) have a special relationship with subjects, thereby creating a duty of care that could, if breached, give rise to an action in negligence. At the center of the

controversy was a $30 million study on lead poisoning conducted at the KKI, an associate of Johns Hopkins Hospital. This 1993–1996 study was done in four sites and involved 780 children. Those children identified as having moderate lead poisoning were given either a placebo or the medicine succimer to determine if the drug prevented brain damage. (It did not.) Two parents of children with elevated lead levels in their blood sued the investigators and the institution for allegedly inducing them to rent houses having lead hazards while promising that their homes would be cleaned, repaired, and made safe; the parents claimed this was not done and their children were harmed. The Court of Appeals ruled that investigators and KKI owed a duty to the plaintiffs, and the parents could sue. The Maryland Court of Appeals not only remanded the cases to the trial court, reversing a lower court ruling that there was no such duty, but also condemned the study as unethical. It indicated that the risk to the children was unacceptably high, and also that the parents were not fully informed when they gave consent: “children should not have been used for the purpose of measuring how much lead they would accumulate in their blood while living in partially abated houses to which they were recruited initially or encouraged to remain because of the study” (Grimes, 2001, p. 72). The Grimes court maintained that the consent form failed to clarify the study’s goals, including that the purpose was to measure the success of the abatement programs by measuring the degree to which the children got lead poisoning; nor was it clear from the consent form that the repeated sampling of children’s blood was essential to the study, not just a free service. Investigators, according to the Maryland Court of Appeals, may have even had some role in placing young children in these older homes, thus increasing their danger of lead exposure and brain damage: “The project required that small children be present in the houses. To facilitate that purpose, the landlords agreeing to permit their properties to be included in the studies were encouraged, if not required, to rent the properties to tenants who had young children. In return for permitting the properties to be used and in return for limiting their tenants to families with young children, KKI assisted the landlords in applying for grants or loans to perform the levels of abatement required by KKI for each class of home” (Grimes, 2001, pp. 19–20). The investigators and KKI contend that the

Health Care Reform and Children’s Right to Health Care subjects benefitted from the study and that only a few subjects had an increase in lead blood levels. They maintain that they were not responsible for protecting the children who were in the study from unreasonable harm or the delays in complete and prompt reporting of potential hazards. In the end, KKI settled out of court, so their side of the story was not fully told. Before the clarification by the Grimes court in its “Denial of the motion for reconsideration” (2001a), the holding in Grimes seemed to present a standard for nontherapeutic research that could have halted many safe and important medical and public health studies for children (Brief of Amici Curiae, Grimes, 2001). For example, to learn if children are developmentally delayed because they have ingested lead, investigators need to establish a normal range by collecting data from healthy children against which to compare results. The studies would be nontherapeutic since these children are not sick. Yet even such research cannot be guaranteed to be risk-free. Grave consequences, for example, might result from unforeseen violations of confidentiality in a chart review or from accidental exposure to pathogens in a clinic setting. The initial justification for excluding persons who lack the capacity to give informed consent from risky research was to honor their rights and to protect their welfare. Yet forbidding them to participate in safe and important studies does not protect their rights and welfare but unfairly denies them the benefits of medical advances. Thus the standard of “no risk” initially suggested in Grimes’ conclusion would have, if adopted, create a bias against children. It would have made conducting many important and lowrisk public health, epidemiological, vaccine, genetic, or placebo-controlled studies difficult or impossible (Brief of Amici Curiae, Grimes, 2001). With the best of intentions, the Grimes holding that sought to protect children from studies with any risks could have the unfortunate result of stopping most medical and public health research, inhibiting medical progress, and restricting their opportunities for health and well-being. A narrow path runs between “too much” and “too little” protection in order to make progress for children while protecting individual subjects. In its “Order Denying a Motion for Reconsideration” (2001a), however, the Grimes court clarified that it did not mean a permissible nontherapeutic study must have “no risk” but only no more than a minimal risk. The “minimal risk”

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standard is used in many research guidelines around the world as the upper limit that is permitted for children. Thus this ruling is consistent with countries that do not permit risk to be higher than a minimal risk for research involving subjects who cannot give consent for themselves (Kopelman, 2004). Critics still objected to the limitation of only minimal risk in nontherapeutic studies for children, claiming that this ruling was too restrictive and incompatible with the U.S. research guidelines (45 CFR 46) (Brief of Amici Curiae, Grimes, 2001). These guidelines allow local institutional review boards to approve some studies with a minor increase over minimal risk for children having conditions (such as diabetes) under certain circumstances. It requires parental consent and other safeguards, including justifying that the study is commensurate with the children’s experiences and its goal is to understand their conditions better. I have argued in detail elsewhere that this ruling is consistent with this aspect of the federal regulations (Kopelman, 2002). The defense begins by acknowledging that the risks to healthy children and those with conditions (such as cancer) are very different. What constitutes a minimal risk is best understood in terms of the risks that all healthy children experience in routine physical or psychological examinations (Institute of Medicine, 2004; Kopelman, 2004). What is a minimal risk for healthy children may be highly dangerous to children with conditions. For example, while healthy children may safely meet with classmates in school for testing, this may be highly dangerous to children who are immune-compromised. On the other hand, what is highly upsetting to healthy children, such as serious discussions of loss or death, might be low risk or even therapeutic for dying children. The ruling that no children can be in studies having more than a minimal risk can be made consistent once one acknowledges that the risks for children with conditions (such as asthma) must be calculated in terms of their own conditions and situations and that this can be different from healthy children. Yet there needs to be some upper limit given to the risk appropriate to them. So I have argued: The risk to children with conditions from the study must be minimal relative to their condition, situation, and experiences but cannot exceed what would be a minor increase over minimal risk for healthy children (Kopelman, 2002). Healthy children could not be in the study if it exceeded minimal risk for them.

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Many of the health problems affecting children can be the subject of studies carrying minimal risk. We should guard against a predisposition to exclude children from studies that are not risky so that they can get their fair share of the health care dollars and consequent advances in knowledge and improvement in care. Without good research their health care suffers.

CONCLUSION Competition for limited health care resources is likely to intensify as more are insured, resources are limited, populations age, and demands grow for expensive medical services and technologies. Since children cannot advocate for themselves in struggles for funds and programs, adults will have to advocate for them if children are to get their fair share of these resources. But what is children’s fair share of health care resources, and how can we motivate adults to act in children’s best interest? I have argued that it is unfair that children are routinely and without compelling justification excluded from state-supported research and health care programs available to many adults. The burden of proof for any lesser allocation should be on those arguing in favor of state-funded health care or studies for adults that excludes children. This conclusion is based upon an argument from analogy that assumes that adults should have good health care to foster the following values: (a) empathy and sympathy, (b) the social utility and efficiency of such arrangements, (c) social commitments to equality of opportunity, or (d) special duties to act in vulnerable people’s best interest. These four arguments justify social duties to provide good health care for people to the extent that a society can afford it. But they also show that children deserve these services and benefits at least as much as adults in the usual case. Without good and sufficient reason, it is shameful to provide health care benefits to adults and to make them unavailable to children. If these are good arguments for giving benefits to adults, they offer at least as much reason for giving them to children. References Abdullah, F., Y. Zhang, T. Lardaro, M. Black, P.M. Colombani, K. Chrouser, P.J. Pronovost, D.C. Chang. “Analysis of 23 US hospitalizations: uninsured children have higher all-cause in-hospital morality” Journal of Public Health Advance Access published October 29, 2009. Journal of Public

Health l pp.1-9l doi:10.1093/pubmet/ fdp099 http:// jpubhealth.oxfordjournals.org/content/early/2009/ 10/29/pubmed.fdp099.full.pdf (accessed February 8, 2012). American Academy of Pediatrics. (2010). Press Statement on Final Passage of Health Reform issued 28 Mar 2010 by Judith Palfrey, M.D., President. Accessed May 22, 2010. http://www.medicalnewstoday.com/ articles/183680.php. Bodenheimer, T. 1999. The American health care system: physicians and the changing medical marketplace. New England Journal of Medicine 340:584–588. Brief of Amici Curiae Association of American Medical Colleges, Association of American Universities, Johns Hopkins University, and University of Maryland Medical System Corporation in Support of Appellee’s Motion for Reconsideration of Grimes v. Kennedy Krieger, September 17, 2001. Brock, D.W. (2001). Children’s right to health care. Journal of Medicine and Philosophy 26(2):163–170. Budetti, P.P. (1997). Health reform for the 20th century? It may have to wait until the 21st century. Journal of the American Medical Association 277(3):193–198. Children’s Defense Fund 2012 (2012). Health Coverage for all Children Campaign. http://cdf.childrensdefense.org/site/PageServer?pagename=healthy_child_ disparities (Accessed February 8, 2012.) Daniels, N. (1985). Just Health Care. Cambridge, England: Cambridge University Press. Daniels, N., B.P. Kennedy, & I. Kawachi. (1999). Why justice is good for your health. Daedalus 128(4): 215–251. DeNavas-Walt, C., B.D. Proctor, & J.C. Smith. (2009). U.S. Census Bureau, Current Population Reports, P. 60–236, Income, Poverty, and Health Insurance Coverage in the United States: 2008, U.S. Government Printing Office, Washington, DC. Accessed February 8, 2012 www.census.gov/prod/2009pubs/ p60-236.pdfSimilar DeNavas-Walt, C., B.D. Proctor, & J.C. Smith. (2011). U.S. Census Bureau, Current Population Reports, P. 60–239, Income, Poverty, and Health Insurance Coverage in the United States: 2010, U.S. Government Printing Office, Washington, DC. Accessed February 8, 2012. http://www.census.gov/prod/ 2011pubs/p60–239.pdf Grimes v. Kennedy Krieger Institute, Inc. (2001). 782 A.2d 807 (Md. 2001). Grimes v. Kennedy Krieger Institute, Inc. (2001a). No. 128 (Md. Oct. 11, 2001) Order denying motion for reconsideration. Holder, A. (1985). Legal Issues in Pediatrics and Adolescent Medicine (2nd ed.). New Haven: Yale University Press.

Health Care Reform and Children’s Right to Health Care Holder, A. (1989). Children and adolescents: their right to decide their own health care. In L.M. Kopelman & J. C. Moskop, eds., Children and Health Care: Moral and Social Issues. Dordecht, Netherlands: Kluwer, 1989, pp. 161–172. Hume, D. (1958/1739–1740). Treatise Concerning Human Nature (L.A. Selby-Bigge, ed.). Oxford: Claredon Press. Hume, D. (1998/1752). An Enquiry Concerning the Principles of Morals (edited with introductory material by T.L. Beauchamp). Oxford University Press Institute of Medicine. (2004). Ethical Conduct of Clinical Research Involving Children (M.J. Field & R.E. Behrman, eds.). Washington DC: The National Academies Press. Kilner, J.F. (1995). Health care resources, allocation of I, macroallocation and allocation of II, microallocation. In Encyclopedia of Bioethics (rev. ed.). New York: Simon & Schuster Macmillan, 2, 1067–75, 1075–84. Kopelman, L.M. (1995). “The Injustice of Age Bias Against Children In Allocating Health Care,” in Allocating Health Care Resources, eds. James M. Humber and Robert F. Almeder, Totowa, New Jersey : Humana Press, Inc., 205–219. Kopelman, L.M. (1997). The best-interests standard as threshold, ideal, and standard of reasonableness. Journal of Medicine and Philosophy 22(3):271–289. Kopelman, L.M. (2002). Pediatric research regulations under legal scrutiny: Grimes narrows their interpretation. Journal of Law, Medicine & Ethics 30(1):38–49. Kopelman, L.M. (2004). Minimal risk as an international ethical standard in research. Journal of Medicine and Philosophy,29(3):351–378. Kopelman, L.M. (2007). The best interests standard for incompetent or incapacitated persons of all ages. Journal of Law, Medicine and Ethics 35(1):187–196. Kopelman, L.M., & T. Murphy (2004). Ethical concerns about approval of risky pediatric studies. Pediatrics 113(6):1783–1789. Kopelman, L.M., & M.G. Palumbo. (1997). The U.S. health delivery system: inefficient and unfair to children. American Journal of Law and Medicine, XXIII(2–3):319–337. Krause, H.D. (1986). Family Law in a Nutshell (2nd ed.). St. Paul, MN: West Publishing Co. Mackie, J., H. Kuhse, J. Richardson, & P. Singer. (1996). Allocating healthcare by QALY: the relevance of age. Cambridge Quarterly of Healthcare Ethics 5:534–545. Maynard, A., & K. Bloor. (1996). Introducing a market to the United Kingdom’s National Health Service. New England Journal of Medicine 334:604–608.

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McDonough, J.E., C.L. Hager, & B. Rosman. (1997). Health care reform stages a comeback in Massachusetts. New England Journal of Medicine 336(2):148–151. New York Times. (March 26, 2010). Health care reform. Accessed May 9, 2010. http://topics.nytimes.com/ top/news/health/diseasesconditionsandhealthtopics/ health_insurance_and_managed_care/health_care_ reform/index.html Newacheck, P., D.C. Hughes, Y.Y. Hung, S. Wong, & J.J. Stoddard. (2000). The unmet needs of America’s children. Pediatrics 105(4):989–997. Pear, R. (Sept 24, 2000). 40 states forfeit health care funds for poor children. New York Times. 1.1. Rawls, J. (1971). A Theory of Justice. Harvard University Press. Rawls, J. (1993). Political Liberalism. New York: Columbia University Press. Schroeder, S.A. (2001). Prospects for expanding health insurance coverage. New England Journal of Medicine 344(11):847–851. Starfield, B. (1991). Childhood morbidity: comparisons, clusters, and trends. Pediatrics 88(3):519–526. Starfield, B. (2000). Is U.S. health really the best in the world? Journal of the American Medical Association 284(4):483–485. The Economist. (June 25, 2009). Reforming American health care: Heading for the emergency room. Accessed May 15, 2010. http://allcountries.org/ health/usa_health_care_2009_economist.html U.S. Title XXI Children’s Health Insurance Program, from the Balanced Budget Act of 1997 (P.L. 105– 33)—August 5, 1997. U.S. Department of Health and Human Services (DHHS). Healthy People, National Health Promotion and Disease Prevention Objectives. Full report with commentary. Publication No. (PHS) 91–50212, 1992. U.S. General Accounting Office (USGAO): Report to the Honorable John McCain, U.S. Senate. Medicaid: Demographics of Nonenrolled Children Suggest State Outreach Strategies. March 1998. GAO/HEHS 98-93. U.S. 45 C.F.R. 46 and see U.S. Department of Health and Human Services: March 8, 1983, Additional protection for children involved as subjects in research. Federal Register 48(46), 9814–9820 U.S. Census Bureau. People and Households, Health Insurance Data, Income,Poverty and Health Insurance Coverage, 2010, Highlights:2010. http:// www.census.gov/hhes/www/hlthins/data/incpovhlth/ 2010/highlights.html World Health Organization (2000). “World Health Organization Assesses the World’s Health Systems.” World Health Report. http://www.who.int/whr/ 2000/media_centre/press_release/en/

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28 Premature and Compromised Neonates IAN R. HOLZMAN

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neonatal intensive care unit can be a foreign and rather unreal environment. Not unlike other intensive care units, it is filled with monitors, alarms, flashing lights, and frenetic movement, but it also has rows of doll-like patients, as little as 1 pound, enclosed in plastic cocoons or splayed out on warming trays. The patients are often barely visible below the tubes, tape, and eye patches. It is in this setting that we confront the complex issues of resource allocation to infants with a wide array of problems—infants who are in no way responsible for their own decisions and may never reach a point of being held responsible. In this chapter I will present an overview of the technical information necessary to understand the health care allocation issues relating to newborns and then present the complexity of ethical problems surrounding both personal and societal decisions for this unique population. It should not be surprising that the care of small and sick neonates has been a focal point for legislative and judicial intervention as well as fertile ground for discussions of disability rights. For convenience, I have subdivided the salient problems into three separate areas: management at the lower limits of viability (the tiny baby problem), discontinuing intensive care support for a neonate, and the problems associated with infants having multiple congenital anomalies. The lowest limit of viability is a moving target with changes every decade or two as to how small is too small. Despite this, little progress has been made in decreasing the potential for future disabilities in these tiny infants. Determining when (or if) continued intensive care (once begun) should be halted is a complex issue that places society, health care professionals, and families in potential conflict over economic and religious issues. Similarly, those infants born with multiple serious abnormalities force health care providers

to question whether attempting to “fix” everything is always the appropriate decision. Neonatal medicine has witnessed enormous changes during the past two decades (Gargus et al., 2009). Electronic miniaturization and computational speed have led to extremely sophisticated respirators that can sense and control multiple facets of breathing in the tiniest of infants. Whole new methods of breathing, especially the use of high-frequency respirators that move gases 600 times a minute, as well as the use of nitric oxide gas that selectively increases blood flow to the lungs have had a major impact. For many small babies we now are able to manage their breathing without the use of an endotracheal tube; instead we supply airway pressure through tiny prongs inserted into the nares. A new focus on nutrition for even the smallest and sickest infants has led to infants who are stronger and better able to tolerate other medical problems. Obstetricians are now able to provide prenatal treatments, especially lung-maturing steroids, which vastly decrease neonatal morbidity, and prenatal diagnosis is the norm rather than the exception. The universal use of exogenously administered lung surfactant for lung maturation has also lessened the respiratory complications in these infants. All of these improvements have led to survival of babies as small as 1.5 pounds and as much as 16 weeks early (Stephens & Vohr, 2009). In addition, the success of assisted reproductive technologies has led to an increasing number of multiplegestation premature births, with the peak being reached between 2004 and 2005 (National Vital Statistics Reports, 2009). The range of therapeutic options for infants with complex congenital anomalies, including fetal surgery, extracorporeal membrane oxygenation (ECMO), and transplantation, has greatly expanded. Utilization of these new technologies promises, at the least, improved survival.

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As in all of medicine, these changes have not come without enormous economic consequences— neonatal intensive care units, equipped and staffed to manage the smallest and sickest infants, are now established entities in the majority of hospitals, and an increasing array of services are available for graduates of intensive care (Spittle et al., 2007). Within pediatrics, the largest percent of physicians who choose a subspecialty decide to train as neonatologists. Despite this decades-long trend, employment opportunities continue to be widely advertised, suggesting a continued call for neonatal care services. It has been estimated that the total neonatal intensive care resources expended in the United States are between $2 billion and $4 billion dollars per year (Stolz & McCormick, 1998), and there are a number of other analyses of how these dollars are spent (Rogowski, 1998, 1999; St. John et al., 2000). There are at least 18,000 higher-acuity neonatal beds (levels 2 and 3) in the United States (Martin et al., 1998). But we also know that infants born earlier than 25 weeks of gestation account for only 5.4% of the charges (Stolz & McCormick, 1998). The majority of the costs are not for the smallest infants at the limits of technology, yet overall neonatal care costs constitute a significant portion of child health care costs (Stolz & McCormick, 1998). Furthermore, costs of neonatal care for tiny infants pale when compared to those for many adults with serious illnesses (Tyson et al., 1996; Lantos et al., 1997). Nevertheless, the costs of neonatal care are probably disproportionately distributed to the public sector because the risk of premature births affects the inner-city, African-American population significantly more than the rest of the nation (Muglia & Katz, 2010), and these premature African-American infants are less likely than full-term babies to receive standard care (Howell et al., 2010). It has also been shown that hospitals with a higher proportion of insured patients have better neonatal resources than similarly situated hospitals (with similar teaching status and ownership) that have fewer privately insured patients (Glied & Gnanasekaran, 1996). Economic analyses are also available for the cost of high-technology care for one of the more serious congenital anomalies, diaphragmatic hernia. The hospital cost for each survivor of surgery who requires ECMO is $365,000, and professional fees account for approximately 23% of the total costs (Metkus et al., 1995). Over the past 30 years there has been a dramatic decline in the weight of newborns

considered “appropriate” for delivery room resuscitation—from around 1,000 grams (or 12 to 13 weeks early) to 500 grams (or 16 to 17 weeks early). This change is the result of a complex mixture of advances in medicine and philosophical changes in the mindset of the obstetricians and neonatologists who care for the mothers and babies. A recent publication from Japan has set new lower limits of survivability, with as many as 44% of infants at 22 weeks of gestation discharged alive from a neonatal unit (Itabashi et al., 2009; Meadow & Lantos, 2009). A discussion of how this change occurred is beyond the scope of this paper, but suffice it to say that a similar analysis could have been applied in 1975 to decisions for babies a month more mature at birth than those today. Saving 1,000-gram babies was then considered a miracle. Now in most medical institutions in Japan, all infants born at 22 weeks or later are provided aggressive neonatal intensive care (Iijima et al., 2009). It remains unclear whether the longterm outcome of these infants is similar to those whose birth weight is between 500 and 750 grams, a group studied longitudinally for over two decades. Because we can’t predict the outcome now, it is difficult to make meaningful recommendations to families (and physicians). We are now technically able to resuscitate a tiny premature infant who falls below our present operational limit—that is to say, the medical equipment (endotracheal tubes, intravenous lines, monitors) can be used for infants as small as about 400 grams (14 ounces) at birth or 18 weeks early. If it could be agreed that there is some weight or gestation below which it is not technically possible to provide care, should we NEVER try? Should there be an attempt to develop equipment for even smaller babies? The argument to continue to try to push the limits of our abilities is based upon the success of such a philosophy during the past 25 years. It could be paraphrased as “no pain, no gain.” Few practitioners view resuscitation of the tiniest infants as experimental; rather, they see it as giving the babies and their families a best effort to save the life of child. Some neonatologists genuinely believe that giving every baby, no matter how small or young, a chance at survival is what doctors are required to do—any less would be playing God and deciding who should live and who should die. The reality is, though, that the overwhelming majority of infants who are less than 500 grams at birth (excluding those who are small and poorly grown but of more advanced gestational age,

Premature and Compromised Neonates because such infants are more likely to survive) will not survive in neonatal units in the United States and Western Europe. That isn’t to say such survival statistics could never be achieved, only that, for a complex mix of societal, philosophical, and technical reasons, that goal is not at present obtainable. Attempts at keeping such tiny infants alive are experimentation; the physician knows survival is unlikely but believes that employing an innovative approach might allow this particular infant to survive and generate new knowledge and should be presented as such (Peabody & Martin, 1996; Paris et al., 2000). The results from Japan on survival in these tiny infants may or may not be transferable to other countries, but to attempt to do so without recognizing the implications for the infant and family would be inappropriate. If all such attempts are experiments, what is their proper place within a just scheme for allocating medical resources? In a climate of unbridled autonomy where patients demand any and all treatments (Paris & Schreiber, 1996b) it might seem simplest to acquiesce to either the parental or physician demand to try to keep the smallest of infants alive. If, as argued by Tooley (Tooley, 1983) and Englehardt (Englehardt, 1978), newborn infants have no independent interests or rights, then the wish of the parents to try to save a 400gram infant should be honored. Yet, if we accept that such treatment is experimental, can we really require every neonatologist to “experiment” on every small baby when the parents demand it? Regardless of how one views the moral status of such tiny infants, their vulnerability as research subjects seems unquestionable. Decisions to employ active intervention for infants who will not survive should only happen in a setting where protocols for the acquisition of knowledge and protection of subjects are in place and after informed consent is obtained (Paris & Schreiber, 1996a). This discussion of the limits of viability has focused, to this point, on whether there is a mandate to resuscitate the very tiniest of infants. We have not addressed either distributive justice or economics. Yet the incidence of prematurity in the United States falls disproportionately on the urban poor (and especially the urban African-American poor). The reasons for this higher incidence among urban African-American women are complex and only partly understood. Certainly inadequate early prenatal care, poor nutrition, smoking, and unwanted conceptions are part of the story. Yet there is some greater cultural-social or genetic explanation that has evaded researchers, since

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attempts to correct the more obvious causes have not met with great success (Hogue & Hargraves, 1995). Any decision to limit care for infants at the margins of viability would fall most heavily on that population. Surprisingly, the reality is that decisions to be aggressive in the resuscitation of tiny babies have never been linked to experimentation on the poor. Possibly, the tiny infants of our poorest families are not resuscitated as aggressively as infants from other social strata, but it seems equally probable that requests for aggressive care (and physician fears of “not doing everything”) are more likely to be voiced by people from some, but not all, sectors of our population. Family religious beliefs may play a role in parental requests for aggressive care, and the myriad of cultural differences, expectations for the future of a given child, and trust in the “words” of a physician contribute to the aggressiveness of resuscitation at the limits. The state of Oregon considered the concept of setting a lower limit of birth weight below which care would not be reimbursable (Bodenheimer, 1997). Because the Oregon plan was devised to redistribute public monies for health care in a more equitable manner, the poor would be the group not offered resuscitation for their tiny neonates. While there may be an economic justification for such a policy, it is hard to see it as just. The idea that neonates from poor families, as a distinct group of U.S. citizens, should be denied access to medical treatment requires careful examination. Issues concerning the lower limits of neonatal viability often overlap decisions concerning “turning off respirators.” Many neonatologists have adopted a policy of aggressively resuscitating small infants (although not necessarily at the lowest limits of viability) and then discontinuing support, if parents agree, when medical factors indicate a poor prognosis (Kinlaw, 1996). These factors might include severe lung disease, massive bleeding into the brain, overwhelming infections, or bowel necrosis. On the surface this approach seems to offer a reasonable compromise among many competing interests—the infant’s, parents’, health care workers’, and society’s investment in health care. But there are problems. Parents confronted with the birth of a tiny premature infant are rarely well informed or unemotional. Physicians tend to be overly optimistic or pessimistic early in the care of a sick infant and must counsel families with limited information; meaningful outcome data must take into account the totality of the neonatal intensive care course. It is not always obvious what

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the underlying justification for discontinuing support might be. If it is clear that the infant will die soon (but not soon enough), then the decision seems to involve consideration of compassion and respect for the infant and family. The arguments are not different than those marshaled by adults who choose to die without the intrusiveness of respirators and feeding tubes. While the neonate cannot express such wishes, both parents and health care workers together would seem to be appropriate surrogates. When death is likely, a decision to withdraw support must be based upon considerations of the burdens of living. Justifying the discontinuation of treatment by the potential for a future life of misery will apply only to very few infants. For those who will develop into minimally sentient beings—blind, deaf, unable to make contact with other humans, loss of cortical function—it is hard to imagine that living per se is unpleasant. Adults who have been in prolonged coma and then awaken do not announce that being fed, bathed, clothed, and cared for by others was a horror. For those infants who are likely to be aware of their surroundings but will have years of painful procedures, incomprehensible to them, with no likelihood of an end to their pain and suffering, an argument could be made that death is not an irrational choice. In many cases, decisions to discontinue support arise from the perceived burden to the family (and in the public policy arena, to society) rather than the infant. It is easy to construct arguments in support of the parents’ critical role in decision-making (Peabody & Martin, 1996)—they are responsible for their child. It is less clear why parents are allowed to choose death rather than a complicated future in the case of neonates while a similar choice is not acceptable for their older children who might be stricken with complicated illnesses. If society were more supportive of the severely disabled and provided the requisite financial and social assistance necessary to cope with a medically devastated neonate, would it be less acceptable to cede “quality of life” a preeminent position? Decisions concerning which infants will be managed aggressively from birth and which infants will have life support discontinued have been the focus of regulatory and judicial intervention in the United States during the past two decades. The Child Abuse Prevention and Treatment Act (CAPTA), also known as the Baby Doe rules, have been in effect since 1984 and mandate maximal treatment for all infants unless they are irreversibly comatose or will die imminently. There has

been only one appellate-level state court decision concerning the CAPTA rules, and it supported the resuscitation of an infant despite parental wishes. In 2002, a U.S. federal law was enacted in order to protect infants born alive at any gestation. While it did not categorically mandate resuscitation, it did require a “screening exam” for any such infant and a requirement to put in place some care plan (admit, stabilize, transfer) if it were determined that the infant was alive. It should be clear that considerations of family wishes and what might be best for the infant are in clear conflict with the regulations and legislation briefly summarized above. A survey of California neonatologists indicated overwhelming disapproval of the law, and only 6% felt it should be enforced (Partridge et al., 2009). Loretta Kopelman has been a strong and convincing advocate of using a best-interests standard rather than using the CAPTA rules when making decisions for infants (and others lacking decision-making capacity). Given sound information as a basis for assessing the incapacitated infant’s interests, being held to a minimum threshold of acceptable care, and making medical decisions compatible with moral and legal duties to those who can’t make their own decisions are the basis for making a best-interest decision (Kopelman, 2009). Mercurio broadens the discussion of using the best-interest standard by asking whether there is a place for considering the interests of others beyond the patient. Most importantly, should we consider what might be in the parents’ interest (Mercurio, 2006)? A decision to aggressively resuscitate a tiny premature baby may well present a family with a lifelong responsibility to care for a child with extensive medical and developmental needs. To add the family’s interest into decision-making obviously adds significant complexity. A much more in-depth knowledge of the family’s structure and beliefs might be required before making a decision. Once the interest of others enters the calculus for decision-making for neonates, it becomes problematic to speak of the patient’s best interest. Is there truly a “best” interest for the infant that coincides with that of the parents? Would it not be more transparent to determine which outcomes are unacceptable and avoid interventions that are more likely to cause an unacceptable outcome for the patient and, when relevant, the patient’s family? There is no evidence that the majority of neonatologists in the United States are strictly

Premature and Compromised Neonates adhering to either the Baby Doe rules (CAPTA) or the Born Alive legislation. Most neonatal centers set a gestational age at which parents are given the ultimate decision-making authority as to whether an infant should be resuscitated and/or life support should be discontinued. The issues around disabilities and how we view them are obviously germane to any discussion of neonatal medical care (Landsman, 2009). Our language in this area clearly highlights the issue. We call some children “normal” and others “disabled.” We normally use the medical model that “defines disability as a permanent biological impediment and positions individuals with disabilities as less able than those who can recover from illness or who are non-disabled” (Gilson, 2000). Said another way, “The medical model of disability portrays disability as a pathology located within the body or mind of an individual; the power to define and treat disabled people or their caregivers to seek expertise” (Landsman, 2009). Once the enormity of the task, to the family and society, of rearing a profoundly disabled neonate is brought to bear, issues of health care allocation come to the forefront (Emanuel, 2000). The long-term costs of caring for a handicapped infant are obviously large and decisions about allocation in a democracy are not easy to make (Goold, 1996). In any specific case, physicians rightly feel uncomfortable about factoring in the cost of present and future care when a decision to end a life is before them. Parents are similarly uncomfortable but must consciously or unconsciously add financial burdens to their calculus. Without equal access to support (in the broadest sense) for their disabled children, it seems dangerous to give much weight to considerations of family burden when deciding to discontinue care for a neonate. While decisions about the appropriateness of intervention or continued support for extremely premature infants have been in the forefront of public discussion and writing, neonatologists (and other pediatric subspecialists) are also often faced with decisions concerning infants with multiple anomalies. The increasing availability of organ transplantation services (although not organs) is forcing neonatologists to reconsider which conditions are truly fatal. The possibility of heart transplants for infants born with incomplete development of the left side of their heart (hypoplastic left heart syndrome) created concerns for the availability and appropriateness of heart donors, especially the potential use of hearts from anencephalic infants (Robertson, 1999). Of more

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immediacy to neonatologists both then and now is whether parents have the right to refuse either palliative surgery (Norwood et al., 1980) or a transplant for their infant. The surgical treatment requires multiple visits to the operating room over the first few years of life, and both survival and intact survival have not been high. Outcomes have improved, although long-term outcome remains a question. The argument for respecting a family’s wish not to have their infant’s heart treated surgically turns on the reality of a low surgical success rate coupled with multiple major operations and an unknown future survival. Because surgery seems like an option many would not choose for themselves, not opting for that course for their sick infant seems reasonable. With the improvement in surgical technique, the choice of “no treatment” is probably now only infrequently offered to families. True parental authority to decide on their child’s future has given way to the imposition of the medical establishment’s imperative that surgery is the norm. Transplant, on the other hand, remains an optional neonatal therapy. Because the availability of hearts is so low, to do otherwise would raise expectations of success that many would consider cruel. The transplantation of other solid organs (liver, lung, kidney, intestine) raises similar considerations to that of hearts. The lack of organ availability “allows” physicians the comfort of leaving the choice to families. Were there an instant and magical increase in organ availability, would physicians consider such treatment optional for infants? If the success rate were reasonably high (40%? 50%?), what would the justification be for allowing infants to die when half could live? If life with a transplanted organ was sufficiently bearable (no need for repeated surgery, no unrelenting pain, no constant danger of serious infections, no bouts of organ rejection) and there was a reasonable chance of many years of life, such treatment would be considered an infant’s right. If the prospects for success were good, any other option could only be justified by society’s determination that such expensive therapy was not in its best interests, that its health care dollars could be better spent. The above discussion has focused on infants with a single need, a heart or liver not properly functioning. Some children, though, are born with a complex group of defects—a syndrome that may or may not be well described. Many syndromes include abnormal brain development and function, but others involve primarily cosmetic

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issues as well as multiple partially functional organs. There may be shortened, deformed legs, abnormal kidneys, and a deformed and bent spine. No single anomaly is necessarily fatal, but the group of defects may herald enormous health issues for the child and future adult. When the group of abnormalities fits a welldescribed syndrome with a known prognosis, the considerations usually focus on the likelihood of a lifespan beyond the first year or two. For some well-defined genetic syndromes such as trisomy 13, the underlying disruption of normal cellular function seems to preclude any hope of growth and development. While there are always single cases of long-term survivors, albeit severely disabled, such cases are distinctly uncommon. This should be clearly differentiated from a trisomy 21 or Down syndrome patient, where the prognosis for a long and happy life is much better. Few, if any, physicians would advocate multiple surgical attempts to repair heart or other organ defects in a child with trisomy 13. These “treatments” would have no coherent purpose and should be considered harmful interventions. The range of conditions in which surgeons have felt operative intervention is not indicated is fairly wide and has included various abdominal wall and urogenital defects, diaphragmatic hernias, and significant intestinal tract anomalies (Hazebroek et al., 1993; Caniano et al., 1995). The more difficult decisions involve those infants whose prognosis and syndrome are unknown or, at least, not clear. Often the concerns about an infant’s potential for mental development become paramount and drive the decisions about interventions. Such discussions often begin with the invocation of “quality of life” as a reason to discontinue care. Wouldn’t it be unfair to keep such a child alive? On the other hand, for a child who is likely to be aware of its surroundings and experience a painful future never being able to understand the purpose of the imposed interventions, there is much to be said for a non-aggressive approach. On the other hand, mental disability, per se, does not equate with a poor quality of life. In reality, the main burden of raising a child with a mental disability is on the family and society. Decisions that have an enormous impact on both must be carefully examined to ensure they are being decided justly (Emanuel, 2000) and that the decisions reflect our respect for life and the fabric of society, particularly in this era of managed care. When there are extremely complex decisions about whether to begin a prolonged course of

treatments for multiple anomalies, any one of which could be repaired, it would seem that a course of action should be undertaken that weighs the desires of the family (either for or against aggressive treatment) and the interests or imagined desires of any child to have a life with some moments of pleasure and value. If the totality of defects makes such a future unlikely or if the mortality from repeated attempts to “fix things” is extremely high, then a decision not to proceed should be acceptable. The ethical problems faced both by health care workers in neonatal intensive care units and the families of small and sick neonates are a microcosm of those in the rest of medicine in the 21st century. Technological advances such as the temporary use of an artificial lung (ECMO) and a portable heart as well as organ transplants have allowed medicine to offer life where only a few short years ago none was possible or expected. Neonatal patients in this drama are truly incompetent, with no past on which to base future wishes. Their families must struggle with a desire to have a child and, at the same time, a wish not to have or give a future of misery. Caught between these wishes are physicians and nurses who want to save lives but without causing pain and who are also fully aware that the ultimate responsibility to care for the child after discharge will be borne by the family. For the tiniest babies, at the limits of viability, society and physicians will have to draw some lines (Botkin, 1990). It is possible to make decisions that are just, fiscally sound, and respectful of infants and families, when we approach them with the realization that the outcomes of the intervention are unknown or uncertain and must only be performed with full disclosure and with the real support of society. For those infants who are not at the lower limits of viability but who reach the point at which discontinuation of support is proposed, there must be a careful weighing of the competing interests—the child’s future, the parents’ concerns and potential burdens, the goals of the medical treatment, and the need for a just distribution of health care. The costs of the treatment and home care will be an issue during the child’s acute neonatal illness and for the remainder of his or her life. Infants born with complex birth defects and failing organs bring to the forefront the cutting edge of medical science at a time when the economics of health care are in flux. For some infants,

Premature and Compromised Neonates decisions to proceed are unquestionably experimental and should be treated as such. For others, physicians and families must decide whether aggressive and complicated treatment serves the child, the family, and society well. Such discussions can only occur with full and open disclosure of all the facts (as unclear as they may be) and an examination of what the future for that child might be, uncolored by our medical biases. Such decisions, in the abstract, must also be opened to the general public, where a debate on our society’s commitment to its youngest members can occur. While none of these decisions are ever easy, attempting to make them with compassion, justice, and knowledge is probably the most we can expect.

References Bodenheimer, T. (1997). The Oregon health planlessons for the nation. New England Journal of Medicine 337:651–655, 720–723. Botkin, J.R. (1990). Delivery room decisions for tiny infants: An ethical analysis. Journal of Clinical Ethics 1:306–311. Caniano, D.A., F.W.J. Hazebroek, K.E. DenBesten, & D. Tibboel. (1995). End-of-life decisions for surgical neonates: Experience in The Netherlands and United States. Journal of Pediatric Surgery 30:1420–1424. Emanuel, E.J. (2000). Justice and managed care: Four principles for the just allocation of health care resources. Hastings Center Report 30:8–16. Englehardt, H.T. (1978). Ethical issues in aiding the death of young children. In Beneficent Euthanasia, ed. M. Kohl. New York: Prometheus Books, p. 78. Gargus, R.A., B.R. Vohr, J.E. Tyson, P. High, R.D. Higgins, L.A. Wrage, & K. Poole. (2009). Unimpaired outcomes for extremely low birth weight infants at 18 to 22 months. Pediatrics 124:112–121. Gilson, S.F. & E. DePoy. (2000). Multiculturalism and disability: A critical perspective. Disability and Society 15:207–218. Glied, S.A., & S. Gnanasekaran. (1996). Hospital financing and neonatal intensive care. Health Services Research 31:593–607. Goold, S.D. (1996). Allocating health care: Cost-utility analysis, informed democratic decision making, or the veil of ignorance? Health Politics, Policy and Law 21:69–98. Hazebroek, F.W.J., D. Tibboel, M. Mourik, A.P. Bos, & J.C. Molenaar. (1993). Withholding and withdrawal of life support from surgical neonates with lifethreatening congenital anomalies. Journal of Pediatric Surgery 28:1093–1097. Hogue, C.J.R., & M.A. Hargraves. (1995). Preterm birth in the African-American community. Seminars in Perinatology 19:255–262

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Howell, E.A. I. Holzman, L.C.Kleinman, J.Wang, M.R.Chassin. (2010). Surfactant use for premature infants with respiratory distress syndrome in three New York City hospitals: discordance of practice from a community clinician consensus standard. Journal of Perinatology 30:590–595. Iijima, S., H. Arai, Y. Ozawa, Y. Kawase, & N. Uga. (2009). Clinical patterns in extremely preterm (22 to 24 weeks gestation) infants in relation to survival time and prognosis. American Journal of Perinatology 26:399–406. Itabashi, K., T. Horiuchi, S. Kusuda, K. Kabe, Y. Itani, T. Nakamura, M. Fujimura, & M. Matsuo. (2009). Mortality rates for extremely low birth weight infants born in Japan in 2005. Pediatrics 123: 445–450. Kinlaw, K. (1996). The changing nature of neonatal ethics in practice. Clinics in Perinatology 23: 417–428. Kopelman, L.M. (2009). Disputes over moral standards guiding Treatments for imperiled infants. Seminars in Perinatology 33:372–376. Landsman, G.H. (2009). Reconstructing Motherhood and Disability in the Age of “Perfect” Babies. New York: Routledge. Lantos, J.D., M. Mokalla, & W. Meadow. (1997). Resource allocation in neonatal and medical ICUs, epidemiology and rationing at the extremes of life. American Journal of Respiratory & Critical Care Medicine 156:185–189. Martin, G.J., K. Gattshall, F. MacPherson, & S. Tiffany. (1998). Future financial neonatal shock. Pediatric Clinics of North America 45:619–634. Meadow, W., & J. Lantos (2009). Moral reflections on neonatal intensive care. Pediatrics 123: 595–597. Mercurio, M.R. (2006). Parental authority, patient’s best interest and refusal of resuscitation at borderline gestational age. Journal of Perinatology 26: 452–457. Metkus, A.P., L. Esserman, A. Sola, M.R. Harrison, & S.N. Adzick. (1995). Cost per anomaly: What does a diaphragmatic hernia cost? Journal of Pediatric Surgery 30:226–230. Muglia, L.J., M. Katz. (2010). The enigma of spontaneous birth. New England Journal of Medicine 362:529–535. National Vital Statistics Reports. (2009). 57 (Number 7). Norwood, W.I., J.K. Kirklin, & S.P. Sanders. (1980). Hypoplastic left heart syndrome: Experience with palliative surgery. American Journal of Cardiology 45:87–91. Paris, J.J., H.M. DeLisser, & R.C. Savani. (2000). Ending innovative therapy for infants at the margins of viability: Case of twins H. Journal of Perinatology 4:251–256.

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Paris, J.J., & M.D. Schreiber. (1996a). Parental discretion in refusal of treatment for newborns a real but limited right. Clinics in Perinatology 23:573–581. Paris, J.J., & M.D. Schreiber. (1996b). Physicians’ refusal to provide life-prolonging medical interventions. Clinics in Perinatology 23:563–571. Partridge, J.C., M.D. Sendowski, E.A. Drey, & A.M. Martinez. (2009). Resuscitation of likely nonviable newborns: Would neonatology practices in California change if the Born-Alive Infants Protection Act were enforced? Pediatrics 123:1088–1094. Peabody, J.L., & G.I. Martin. (1996). From how small is too small to how much is too much. Clinics in Perinatology 23:473–489. Robertson, J.A. (1999). The dead donor rule. Hastings Center Report 29:6–14. Rogowski, J. (1998). Cost-effectiveness of care for very low birth weight infants. Pediatrics 102:35–43. Rogowski, J. (1999). Measuring the cost of neonatal and perinatal care. Pediatrics 103:329–335. Spittle, A.J., J. Orton, L.W. Doyle, & R. Boyd. (2007). Early developmental intervention programs post

hospital discharge to prevent motor and cognitive impairments in preterm infants. Cochrane Database Systems Review (2):CD005495. St. John, E.B., K.G. Nelson, S.P. Cliver, R.R. Bishnoi, & R.L. Goldenberg. (2000). Cost of neonatal care according to gestational age at birth and survival status. American Journal of Obstetrics & Gynecology 182:170–175. Stephens, B.E., & B.R. Vohr. (2009). Neurodevelopmental outcome of the premature infant. Pediatric Clinics of North America 56:631–646. Stolz, J.W., & M.C. McCormick. (1998). Restricting access to neonatal intensive care: Effect on mortality and economic savings. Pediatrics 101:344–348. Tooley, M. (1983). Abortion and Infanticide. New York: Oxford University Press. Tyson, J.E., N. Younes, & L.L. Wright. (1996). Viability, morbidity, and resource use among newborns of 501 to 800 gram birth weight. Journal of the American Medical Association 276:1645–1651.

29 Age Rationing Under Conditions of Injustice LESLIE PICKERING FRANCIS

I

n the face of rising health care costs and stagnant or falling tax revenues, pressures for rationing health care on the basis of age are extensive. Many of the same arguments are deployed to support rationing on the basis of disability (although parallel arguments favoring disability are less frequent, except in the case of those disabled in the line of military or other public duty). Rising percentages of the population who are old, and especially who are over the age of 85, together with their health care needs, increase these agebased pressures. As health care reform slouches1 towards implementation in the United States, these pressures have intensified. This chapter argues that rationing access to health care on the basis of age alone cannot be justified, at least in a world of imperfect justice. Reasons that would appear to support age rationing either do not support it, or gain plausibility from considerations other than age but only contingently connected to it, if they are connected at all. The chapter concludes with suggestions about how the very real problem of rising health care costs can be addressed ethically.

A PRACTICAL EXAMPLE: MEDICARE AND MEDICAID I N T H E U N I T E D S TAT E S To give concrete shape to the discussion, an example from the U.S. may be helpful. The U.S. has two federally supported programs of health insurance, Medicare and Medicaid. Medicare is an entirely federal program, financed by a federal payroll tax (2.9%, to be increased on high-income tax payers in 2013) on those who are working. Eligibility for Medicare depends on age (65) or long-term disability, coupled with having paid into the Social Security system for the requisite number of qualifying quarter-years (40 by self or spouse, in the case of eligibility on the basis of age). Medicare eligibility is “all or nothing”; Medicare benefits are

not adjusted based on how much an individual has paid into the system. Medicare benefits are not means-tested; rich and poor receive the same benefits. However, premiums are required for enrollment in the parts of Medicare that cover outpatient care and medications; these premiums rise with income (and are paid by Medicaid for those who qualify). Medicare thus represents an income transfer from the working to the nonworking, although the non-working elderly will have paid the tax for the equivalent of at least 10 prior years, and to some extent an income transfer from lower-income to higher-income taxpayers. Medicare does not cover those among the elderly who have not paid into the Social Security system for the requisite number of quarters, most likely recent immigrants without a lengthy work history in the U.S. and individuals employed in underground economies such as domestic work or agriculture. Although Medicare provides coverage for a great deal of care, it also excludes much. Medicare covers care that is “reasonable and necessary” for the diagnosis and treatment of injury or illness or the “improvement” of function.2 Medicare does not distinguish care based on its cost; the test for coverage is what is reasonable and necessary, not what is lower in cost. Medicare does not cover treatment such as physical therapy unless it will improve function. It does not cover dental care.3 Medicare also does not cover long-term nursing home care or more than a very limited amount of home care. Medicaid is a federal–state partnership that enrolls patients on the basis of categorical eligibility (age, blindness, disability, and pregnancy or young age) and need. Although Medicaid eligibility would be expanded under the reforms of the Affordable Care Act, poverty alone is not at present sufficient to confer eligibility for Medicaid. Medicaid is financed by a combination of federal

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and state tax revenues in a match based on comparative state wealth. Within certain federal constraints, states can set eligibility standards for Medicaid and experiment with program design. Federal Medicaid funds cannot be used to pay for Medicaid for legal residents who have not become citizens (with exceptions for specified groups of refugees); if states wish to add lawful permanent residents or others to their Medicaid programs, they must rely on state funds only. For so-called “dual eligibles” for Medicare and Medicaid, Medicaid picks up many health care expenses that Medicare does not pay for. The result is that Medicaid is the primary source of funding for nursing home care in the U.S., and significant portions of state Medicaid budgets go towards this care.4 (This is skilled or custodial nursing care; Medicaid does not fund residential assisted living facilities.) In many state Medicaid budgets, nursing home care competes for dollars with basic Medicaid, as well as with optional Medicaid programs such as expansion of coverage to nondisabled adults or provision of services that are deemed “optional,” such as dental care. A primary goal of health reform in the U.S. is expanding access to health insurance. For the poor and near-poor, especially children, expanding eligibility for Medicaid is a core strategy. This strategy will provide federal dollars but will also require states to pay their share of the matching funds. States facing significant revenue shortfalls thus are trying to figure out how they can expand coverage and continue to pay for the Medicaid services that they are already providing. States are cutting services and imposing increasingly restrictive forms of care management. It is difficult for states to figure out how to reduce the costs of nursing home care, especially given growing numbers of patients over the age of 85 or even 90. The result is that squeezed Medicaid budgets are relentlessly cutting Medicaid benefits for the poor and the near-poor, especially children. In the view of some critics, age (and disability) rationing of health care is the only reasonable solution to this apparent conundrum. If the poor and near-poor, especially children, are to receive increased access to health insurance, something must give. One target in the Medicaid program is nursing home care, over half of which goes to the elderly. For working adults who see a nearly 3% payroll tax for Medicare, a target may be Medicare itself, especially as Medicare does not at present allow costs to be taken into account in determining which benefits are to be covered.

The fragmented structure of U.S. health care financing may invite targeting Medicare and Medicaid. In the U.S., the major types of health insurance coverage are Medicare, Medicaid, the Veterans Administration, and myriad forms of private insurance, each with different coverage designs. Working adults paying the separate Medicare tax, and contemplating the pressures Medicaid places on general tax revenues, may understandably be perturbed if they themselves are uninsured or under-insured and fear inability to meet their own or their family’s needs for care. Unless, however, reasons of justice can be shown to support such structural differences in access to health care, objections should be directed against these limiting structures, rather than against access for the elderly or the poor or people with disabilities. Ethical arguments offered in support of rationing against age include fair shares (the elderly have already had their fair share of the good of life), outcomes (the elderly will benefit less than the young, in terms of length or quality of life), and impartial rational choice (it is not rational to prefer a smaller increase in the chance of a much longer life over a greater increase in the chance of a “normal” lifespan, in the absence of knowledge about actual life chances). “Age rationing” may go in the other direction as well, in favor of age as with Medicare; arguments for more favorable treatment of the elderly include desert (they’ve earned it), social contribution (they have given much to us), and expectations (they’ve come to count on it). In what follows, I argue that none of these arguments is a convincing reason to support age rationing, for or against. Some of these considerations are, at best, only contingently connected with age. Years-to-death is an example. Although in aggregate the number of years of life remaining for those age 65 is on average lower than the number of years of life remaining for those age 25, such aggregate statistics do not represent the expected years of life for any given person in particular circumstances. Particular 25-year-olds may face disease, natural disaster, social violence, or risks of service in war. Particular 65-year-olds may have 30 or more years of life remaining. In addition, the apparent plausibility of some of these arguments rests at least in part on the failure to appreciate the significance of circumstances of imperfect justice, what have been called “partial compliance” circumstances. As John Rawls, who introduced the term, explained it,5 partial compliance circumstances are those of natural

Age Rationing Under Conditions of Injustice limits and social injustice. In addressing issues of justice in health care, we do not start with a clean slate; we start with the fact that people have already lived their lives to date in the circumstances in which they find themselves. These circumstances include the “natural lottery” of genetic features and in utero exposures and the physical and social circumstances of upbringing, environment, and adult life. Some people will have been relatively fortunate, but others will not have been so fortunate. In the face of such compromised circumstances, I argue, opportunities and context matter greatly from the perspective of justice. Health care is a central opportunity good in this sense because it enables people to survive, to recover function, to be stabilized in the face of decline, or to experience slowing of what may be inevitable changes for the worse. If we consider health care as a central opportunity good, we can make some headway on the problem of health care costs, or so I conclude.

A R G U M E N T S F OR A G E - B A S E D R AT I O N I N G : FA I R S H A R E S The elderly, it is said, have had more of the good of life, “fair innings” in British parlance.6 It would seem to follow, for a certain sort of egalitarian at least, that they should have lower priority when it comes to fulfilling health care needs. So Daniel Callahan contends.7 There are several versions of this argument, depending on the understanding of the goods to be distributed in roughly egalitarian fashion. One is that life has intrinsic value, and the elderly have had more of this good, so they should take a back seat in terms of lifeprolonging therapies to those who have had less of this good. Another version sets aside whether life itself has intrinsic value, and argues instead that life is a precondition for meaningful opportunity, a kind of opportunity for opportunity, and therefore those who have had longer lives have had more opportunity in this sense. Yet another version holds that those who have lived longer lives have had more opportunities. In partial compliance circumstances, however, none of these arguments is convincing. By definition, the elderly will have had more of life than those who are younger. Like William Faulkner’s Dilsey, they have “endured.”8 Some, however, will have endured more than others: poverty, tragedy, disappointment. To support age rationing per se, this view must be that it is life itself, something good, that matters for distributive purposes (or

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that outweighs other goods). If life matters because of the goods experienced within it, however, this view does not support age rationing of health care. Instead, it supports rationing on the basis of the goods experienced within a life, a view on which the relatively fortunate should get less, even if they are comparatively young. If it is equality with respect to the sheer length of life that matters, rationing on the basis of age would appear to be justified on egalitarian grounds. However, it is worth reflecting on whether life itself, rather than the goods it makes possible, should be the concern of those who favor such roughly egalitarian distributions. Clearest support for this view rests in the claim that life has intrinsic value, coupled with support for roughly equal distribution of goods with intrinsic value. If life itself has intrinsic value, it is hard to see how one life could be balanced against another, even if the former is longer (or shorter) in length than the latter. This form of support for the value of life itself thus may be inconsistent with the egalitarian tradeoff of choosing longer over shorter life as a basis for age rationing. Other reasons may support taking length of life as the good to be distributed equally, but these too would need to be developed in a manner that is consistent with longer-to-shorter tradeoffs. Yet, if life is regarded as an opportunity itself, or as the precondition for opportunities, then what matters is not just life itself, but what meaningful opportunities people have within it. Some will have had extraordinary opportunities—and wonderful experiences with them—but others will not have. In some cases, the experience of these opportunities will correlate with age, but in others they will not. Feminist writers have pointed out, for example, that age rationing may seem little more than a cruel joke on women who have sacrificed for their children, their aged parents, their husbands, and who are finally in a position where they can care for themselves.9

A R G U M E N T S F OR A G E - B A S E D R AT I O N I N G : OUTCOME BENEFITS A second common argument for age rationing is outcome-based: the elderly may have less to gain from access to health care and hence greater benefits will be gained by distributions that favor the young. These arguments may rely on either objective measures of benefits or measures in terms of the preferences of those who will experience them. They may be made at the micro level,

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in comparisons between individuals. Or they may be made at the macro level, in terms of benefits to be achieved overall by a particular policy. At the micro level, it has been argued that those who are older should take lower priority for organ transplants, or that they should be “matched” with older donors (whose organs presumably may prove less successful in the longer term).10 To the extent that it is true that less benefit overall will be produced by care for an older person than care for a younger, this is a probabilistic and contingent judgment. How much individuals will gain as benefits objectively measured from health care—in length of life, improvement or stabilization, or alteration of the course of decline—depends significantly on their conditions, not on their age per se. The subjective value attached to these benefits is similarly dependent. Some who are young will gain relatively little; some who are old will gain comparatively more. Just as for objectively measured benefits, there is no a priori reason to believe that subjective benefits are greater earlier rather than later in life. Indeed, quite early on in life subjective perceptions of benefits may be less than later. Moreover, the perception that life is nearing its end—a perception that may occur whenever mortality is near—may serve to augment the benefits perceived to come from experiences that remain. On the macro level, the argument is that policies that favor the young over the old will produce greater benefits overall. These arguments have been deployed based on both objective and subjective measures of benefits. Consequentialists, such as Julian Savulescu, have defended versions of this approach.11 Many critics of this view, including even some consequentialists, have deplored its likely impact on groups such as the elderly or people with disabilities.12 The theoretical literature in this area is rich and complex; how these theoretical issues are addressed is critical to the overall plausibility of consequentialism. Discussions address core theoretical issues in the formulation of consequentialist positions, such as whether the good in question is welfare, preference-satisfaction, opportunity, or something else; and whether the position should be taken to be maximizing, “satisficing,” or reasons-providing, or formulated in another way. Resolving these issues is far beyond the scope of what can be accomplished in this brief discussion. Instead, I want to point out that however these issues are resolved, the facts, even in the aggregate, do not

support rationing on the basis of age as the primary or unique form of rationing for health care. Suppose we grant for the sake of argument that outcome-based theories will need to single out groups that have poorer outcomes in terms of resources expended and so will warrant lower priority in access to health care, or at least to certain forms of health care. Although the elderly may be among these groups, the elderly are unlikely to be the only such group. Surely younger people with very expensive care needs and limited benefits (however benefits are measured; these groups will be different depending on the answer to this theoretical question) will be at least as likely to be de-prioritized as the elderly are from the perspective of aggregate consequentialist measures. Consequentialism in one of its formulations may be the most justified way to approach the distribution of access to health care—I leave this basic question for a different forum—but if it is, the aged will not be uniquely left aside.

A R G U M E N T S F OR A G E - B A S E D R AT I O N I N G : I M PA R T I A L R AT I O N A L CHOICE AND THE P R U D E N T I A L L I F E S PA N A P P ROAC H Norman Daniels has famously argued for age rationing as a matter of impartial rational choice.13 Daniels’s view is Rawlsian: if we do not know our circumstances with respect to health, we would choose health care for ourselves that attempts to further the normal opportunity range over a lifespan, rather than care extending life beyond that range. Daniels calls this the “prudential lifespan” approach: individuals who are prudent would choose to allocate their resources to improve their chances of a normal lifespan. They would not gamble on “extra-long” life, at the possible risk of their youth. This is not the same as a “fair innings” argument, as it does not rest on comparative allocation of goods across lives. Rather, it represents a fair process for considering when, if ever, age rationing is permissible in the face of scarcity. For Daniels, it is permissible when it is what individuals would choose for themselves, as a matter of impartial prudence. Perhaps Daniels is right in the abstract, both about what makes for a fair process of choice and about what people choosing under these constraints would actually find prudential. Even so, the relevance of this approach to the justification of age rationing as a matter of actual health policy

Age Rationing Under Conditions of Injustice can be questioned. In the real world, we do not have the luxury of choosing a health care system for a complete life, at least for those who are already in the middle of life or nearing life’s end. Instead, we must consider how to apply whatever system turns out to be in place to a wide variety of individuals, some of whom will have enjoyed relative wealth and good health care over a lifespan but others of whom will not have been so fortunate. The problem is that Daniels considers age rationing as a problem of ideal theory, arguing that age rationing is justified as a choice made within individual lives, not among lives. Choosers behind the veil of ignorance can expect that earlier benefits will follow them across a lifetime. For choosers in the real but imperfect world, this is simply not the case. Considered in the context of partial compliance theory, the problem of age rationing is not a matter of individual prudential allocation. Instead, it is a problem of what to do with respect to health care in an imperfect world. In such imperfect circumstances, considerations such as past losses, vulnerability to decline, or plans based on legitimate expectations may matter in ways they would not in ideal circumstances. These considerations, and more, arguably come into play in decisions about health care allocation in an imperfect world. I will return to them at the end, after discussion of considerations that may be thought to count in favor of age.

A R G U M E N T S AG A I N S T A G E B A S E D R AT I O N I N G : D E S E R T OR CONTRIBUTION Arguments sometimes advanced in favor of distributing to the elderly are that they are more deserving or that they have made greater contributions than others have. These considerations, too, are only contingently connected with age. Some of the elderly will have lived especially meritorious lives, or made contributions, but others will not have done so. In addition, it is questionable whether the kind of desert or contribution put forth in these arguments is justly linked to access to health care. To the extent that health care is an opportunity good—that is, to the extent that it is needed to enable people to develop their skills and talents— it should be seen as the progenitor, not the outcome, of desert or contribution. To take a very simple example, children with vision impairments need eyeglasses to learn in school. Without a meaningful opportunity to learn, they will be

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disadvantaged (or perhaps unable altogether) in achieving desert or in making contributions. More generally, on any achievement-based account of desert or contribution, sufficiently young children will not qualify at all. (There are accounts of “contribution” that are minimally or not at all achievement-based, for example the view that people with cognitive disabilities contribute in virtue of the relationships they have with others.14 These views will not sort out on lines that correlate with age, however.) Some versions of the contribution argument might be thought to support particular entitlements for the elderly, perhaps against a background of opportunity as part of a mixed theory. One version is that people who have previously made payments towards later health insurance should be provided with it. A version of the contribution argument is sometimes used in support of the current structure of Medicare in the U.S. Some advocates on behalf of the elderly argue that this structure properly reflects entitlement on the basis of payment of the Medicare wage tax. As it stands, this argument is mistaken about the facts of contribution into Medicare, which do not reflect actuarial costs of the insurance. Instead, Medicare is cross-subsidized by a tax on those currently working. That Medicare doesn’t track the costs of contribution is exacerbated by the fact that Medicare for the most part does not take costs into account in making decisions about what care to fund. This version of the contribution argument applied to Medicare may gain plausibility from a different point. Individuals paying the Medicare tax believe that when their turn comes, Medicare will be available for them, and they are led to believe this as a matter of U.S. policy. As a result, they reasonably plan their lives on the assumption of health insurance in old age, at least of the form provided by Medicare. The disappearance of Medicare would leave them vulnerable to unexpected loss. Unexpected losses such as this may be a concern of transitional justice, even if they would not be taken into account by ideal justice. Another version of the contribution argument is based on special sacrifices. Members of the military wounded in the line of duty, police officers or firefighters injured protecting the public, or workers harmed by jobs providing essential public services, might all be thought to have special contribution-based arguments for health care.15 Assuming that such sacrifices are the basis for special rights claims, there is still no reason to

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think that they are correlated with age. Indeed, those who have survived to older ages may be those who avoided precisely the risks that are thought to warrant access to health care on the basis of contributions.

A R G U M E N T S AG A I N S T A G E B A S E D R AT I O N I N G : E X P E C TAT I O N S One further argument that might be offered in terms of rationing for age, at least in the form of the U.S. Medicare program, is that the elderly have come to count on age-based health insurance. The elderly have relied on the presence of Medicare and thus have not saved for health care in later life in the way they might have otherwise done (assuming they had the resources to save). Given the structure of health care financing in the U.S., it is probably true that many of the elderly do have expectations with respect to health insurance that many or perhaps even most non-elderly do not. I have argued elsewhere that expectations are part of the moral landscape that partial compliance theory must take into account in how to make progress towards improved justice.16 Respecting expectations respects individuals as choosers and managers of their lives. To the extent that they are legitimate—reasonable, not grounded in unjust acts, and encouraged by actors with apparent authority—expectations do bear moral weight. Even if expectations bear such moral weight, however, it does not follow that the weight they bear is conclusive. What many (but not all) of the elderly have come to count on is one aspect of the partial compliance picture. Expectations compound, but do not supplant, a moral landscape of disappointment and delight, ill luck and good luck, maltreatment and privilege. Expectations may belong disproportionately to the elderly— and so favoring them may favor the elderly—but they must be fitted into the overall account of justice in partial compliance contexts. J U S T I C E I N H E A LT H C A R E : MEANINGFUL OPPORTUNITY FOR ALL Suppose that we step back to consider age more generally in the context of the problem of how to structure access to health care in a partial compliance world, a world of difference in natural good or ill fortune, differing social circumstances, and imperfect justice. Health care is, as stated above, primarily an opportunity good. That is, it is not a

good that people value for its own sake; rather, it is a good because of what it enables: survival, stabilization, function, or improvement. Opportunity goods matter because of what they enable people to avoid, experience, become, or accomplish. In a partial compliance world, health care of a wide variety of kinds—from organ transplants, to physical therapy, to nursing support—opens opportunities for people to lead the kinds of lives they want. How health care functions in this respect will vary with the context. Suppose, then, that access to health care is thought of in terms of opportunities in contexts of partial compliance. It might be thought that age rationing would be the result, if there is more to foster by way of opportunity earlier than later in life. Theories of justice that rest on opportunities often do take on a child-centered appearance, arguing for sharing the costs of education for children and young adults, or for including poor children but not their equally impoverished parents in U.S. Medicaid programs. Thus it might seem that an opportunity-based approach to justice would support age rationing. One explanation for this may be the thought that justice requires opportunities only for those who cannot provide them for themselves, the paradigm case of which is young children. Even if this thought is granted, so that people are held responsible to pay to the extent that they can for opportunity goods, in partial compliance contexts this ability will vary with the context. Poor parents, just as much as poor children, may be unable to find work or to work, or to purchase health care at a price that is affordable or indeed at any price at all. More generally, it might appear that opportunities are for the young, not for the old. But why should this be so? Opportunity goods enable people to experience, to act, or to develop. They also allow people to forestall decline, closure, or ultimately death. There is thus no necessary connection between opportunity goods and youth, despite what is commonly thought. How, then, can societies face the challenge of rising health care costs and diminishing resources? One way is to start by reframing the question to ask what forms of health care make a difference for people to exercise opportunities in the contexts in which they live. In other words, what is meaningful access to health care? Reframing the question in this way doubly changes focus: to what matters to people, in their actual circumstances. There are ways in which health care in the

Age Rationing Under Conditions of Injustice U.S. does not address these questions, and may cost more as a result. Let me close with three examples of this that affect the costs of U.S. Medicare and Medicaid. The first example is the preference for institutionalized care. Medicare does not cover longterm care. Medicaid programs cover nursing home care but in many cases do not provide inhome services that are needed for people to remain in the community. The concern that covering home care services will increase costs because more people will qualify for these services is short-sighted, if it increases overall costs of institutionalization. A second example is that Medicare conceptualizes care in terms of whether it will increase function, rather than stabilizing or slowing decline.17 For example, Medicare will not pay for physical therapy unless it brings improvement in a patient’s condition. But physical therapy may be critical to maintaining function or preventing decline. These can be as important to the opportunities people have as functional increases. Not incidentally, they may also be a way of reducing the apparent need for institutionalization. Finally, Medicare in the U.S. does not consider costs per se in deciding what care to fund. Indeed, under the Medicare statute the coverage question is supposed to be determined by what is “reasonable and necessary” in the Medicare population. Considering costs is consistent with opportunity—or, indeed, with the ability of health care to meet other values. To the extent that we fail to do this in the U.S., we unfortunately deliver health care in a manner that places pressure on the ability of the health care system to otherwise provide opportunities for people in the circumstances of their lives.

CONCLUSION This chapter has criticized standard arguments that are supposed to support using age as a factor in the distribution of access to health care. It has also argued that attention to opportunity does not require institutional choices that count against the elderly. Attention to opportunity suggests attention to factors other than age that might reduce costs, such as attention to forms of care that reduce the likelihood of institutionalization or promote possibilities for self-management. These forms of care may reduce costs. In addition, there is no reason to think that forms of care that are more expensive also increase opportunity; indeed, we

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may find that less expensive forms of care are equally opportunity-promoting for those who receive them. To be sure, in circumstances of genuine scarcity, not all problems will be solved. In such partial compliance circumstances, there will be choices to be made. But, then, it is in the nature of partial compliance theory to be messy. In partial compliance contexts, this chapter has argued, there are no convincing arguments to single out age for disadvantageous treatment.

Notes 1. William Butler Yeats, “The Second Coming.” The full couplet reads: “And what rough beast, its hour come round at last Slouches towards Bethlehem to be born.” 2. Social Security Act §1862(a)(1)(A), 42 U.SC§ 1395y(a)(1)(A) (2011). 3. Social Security Act § 1862(a)(12), 42 U.SC § 1395y(a)(12) (2011). 4. Kaiser Family Foundation, Commission on Medicaid and the Uninsured, Fact Sheet (March 2011), http://www.kff.org/medicaid/upload/2186–08.pdf, last visited Feb. 13, 2012. The latest report is that 43% of long-term care in the United States is paid for by Medicaid. 5. Rawls, J. (1971). A Theory of Justice, pp. 245– 246. 6. Williams, A. (1997). Intergenerational equity: an exploration of the “fair innings” argument. Health Economics 6(2):117–132. 7. In False Hopes. New York: Simon & Schuster, 1998. 8. In The Sound and the Fury (introducing a character who is the descendent of slaves). 9. John Hardwig makes this point about parents in Hardwig, J. (1997). Is there a duty to die? Hastings Center Report 27(2):34–42. 10. A 2000 study contended that kidneys from older donors may do less well in younger recipients than in older recipients; the explanation may be a combination of reduced organ function and the more active immune systems of younger patients. Waiser, J., et al. (2000). Age-matching in renal transplantation. Nephrol Dial Transplant 15(5):696–700. Later studies contend that survival rates are lower among recipients of grafts from older donors, among all recipient ages. Lakarani, M.M., S. Assari, & M.H. Nourbala. (2009). Improvement of renal transplantation outcome through matching donors and recipients. Ann Transplant 14(4):20–25. Keith, D., et al. (2004). Effect of donor recipient age match on survival after first deceased donor renal transplantation. J Am Soc Nephrol 15:1086–1091.

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11. Savulescu, J. (1998). Consequentialism, reasons, value and justice. Bioethics 12(3):212–235. Savulescu defends a version of consequentialism that is welfarist, maximizing, and reasons-based. 12. E.g., Harris, J. (1999). Justice and equal opportunities in health care. Bioethics 13(5):392–404. 13. Daniels has defended what he calls the “prudential lifespan” approach in a number of writings. Daniels, N. (2010). Justice between adjacent generations: further thoughts. In J. Fishkin & R. Goodin, eds., Population and Political Theory. Malden, MA: John Wiley & Sons, pp. 135–155; Daniels, N. (1988). Am I My Parents’ Keeper? An Essay on Justice Between the Young and the Old. New York: Oxford University Press; Daniels, N. (1985). Just Health Care. New York: Cambridge University Press.

14. E.g., Kittay, E.F. (2005). At the margins of moral personhood. Ethics 116:100–131 (arguing for the role of social construction in identity). 15. Allen Buchanan has made this argument in Buchanan, A. (1984). The right to a decent minimum of health care. Philosophy & Public Affairs 13(1):55–78, p. 67. 16. Francis, L.P. (1997). Elderly immigrants: what should they expect of the social safety net? The Elderlaw Journal, 5(2):229–250; Francis, L.P. (1992). Consumer expectations and access to health care. University of Pennsylvania Law Review 140(5):1881–1917. 17. Social Security Act §1862(a)(1), 42 U.SC 1395y(a)(a)(A) (2011).

30 Health Care for Soldiers FRITZ ALLHOFF

INTRODUCTION This volume explores issues of social justice as it pertains to the distribution of health care. The exploration is wide in scope, but the third part thereof asks what we owe to specific populations. In this essay, I shall consider what health care should be afforded to soldiers, or, similarly, what soldiers should reasonably be able to expect from society upon returning home from the battlefield. For the purposes of this essay, I shall assume that soldiers on military deployment are to be cared for by military medical personnel, and I shall further assume that military medicine is adequate to serve the needs of our deployed soldiers. This is not to defend a substantive thesis regarding the status of military medicine, but is rather only to delimit the present project in terms of focusing on medical care at home rather than in the field. To be sure, there are important ethical dimensions of treating our soldiers in the field, but they fall outside of the scope of this essay.1 As a methodological note, I will not suppose that soldiers have a right to health care, and for various reasons. First, some of us do not believe in rights to health care, whether in general or for soldiers in particular. Many of the other contributors to this volume disagree,2 but that debate is carried out in their essays. Regardless, supposing that soldiers have a right to health care will not engage the position of the person who does not believe in rights to health care; it offers a stronger dialectical position not to make this supposition in the first place. Second, whether soldiers have a right to health care is really neither here nor there with regards to a more tractable and pragmatic question, namely whether soldiers should receive prioritized health care (i.e., as against civilians3). To expand slightly on this point, there are all sorts of reasons that we might prioritize health care for our soldiers. One candidate answer is that they have a right to it, or at least a greater right

than civilians (e.g., given limited resources). But there are all sorts of other candidate answers as well. For example, maybe soldiers deserve prioritized health care; this desert need not suggest any sort of right. (Consider that we deserve courtesy from each other but have no rights violated when courtesy is not extended.) Or else maybe we should just be the sort of society that takes care of its fighting forces by giving them prioritized care. A failure to live up to this sort of duty or obligation would fail to display sufficient gratitude for all that our soldiers risk, and it would fail to show them the respect that they deserve. Alternatively, we can propose that soldiers are owed prioritized health care under a sort of social contract: they defend us and, in exchange, we take care of them after they come home. This is, again, not necessarily rights-based, but rather is just part of the deal that we (implicitly or explicitly) ratify when sending them off and into harm’s way. Finally, there are straightforward consequentialist reasons why we should provide for our soldiers. To wit, it would be hard to recruit soldiers—and therefore to maintain an effective fighting or defensive force—if the post-service provisions for their care were inadequate. Soldier morale (cf., efficacy) could also be diminished if soldiers feared for the status of their health care upon return home; a priority thereof would be one way to allay these fears. In short, there is a wide range of reasons that soldiers might be prioritized for health care, only some of which presuppose rights. To survey the landscape more broadly and so as not to talk past those who do not believe in rights to health care, I shall suppose that all of these reasons are worth exploring. The ensuing discussion will not be neatly subdivided into deontological, virtuebased, social contract, or consequentialist-based approaches to morality, though each of these is important. I shall instead pursue various issues

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topically, and as we proceed, considerations related to each approach to morality will be highlighted. Finally, let us suppose that there are limits as to what sorts of health care society can offer, or at least is reasonably likely to choose to offer. To put it another way, this would be a very short essay if the primary thesis were that soldiers should have unlimited access to the highest-quality health care, as should everyone else. For the question about health care for soldiers to gain any interesting traction, it has to be the case that health care (for civilians) is limited; if everyone gets everything they want and or need, then, a fortiori, there is no reason to talk about priority for soldiers (i.e., we lose an interesting moral question). Maybe soldiers should have more or better health care than civilians, and maybe not. Regardless, if the provisions for civilians are high enough, then the conceptual space within which we can explore a different accommodation for soldiers is eroded. As we move forward, let us therefore suppose that everyone should have access to some quality of health care—without taking a stance as to why or how much—and consider what relationship soldiers bear to this standard. In particular, should soldiers stand at some comparative advantage for health care with respect to civilians?

W H Y S O L D I E R S M AT T E R To motivate the discussion about health care for soldiers, something should be said about why soldiers matter. Or, to put it another way, why are we countenancing a privileged status for soldiers’ care? From the outset, let us take it to be a nonstarter that soldiers should be any worse off vis-àvis health care than civilians; certainly this is a coherent position, though nobody would defend it. Whatever other moral considerations soldiers are due, they are at least due the same consideration as everyone else. This is not to say that soldiers should receive the same priority as civilians at civilian facilities; if there are adequate military facilities, then it might be unfair to the civilians for the soldiers to also have a claim on civilian facilities. For example, imagine that a soldier could go to either a military or civilian facility, yet chooses to exercise priority at a civilian facility despite available care at a military facility. In this case, a civilian might be unnecessarily displaced, so our system should not condone such practices. Rather, the issue is what health care should be available to soldiers somewhere, without taking a stance on where that place is. As it turns out, returning soldiers would most

likely access health care either on a military base or in a Veterans Affairs facility; these facilities are reasonably available given an expansion of outpatient clinics during the 1980s. Nevertheless, the geographic coverage is not perfect and there are cases (e.g., emergency) when soldiers would need to access civilian facilities. At any rate, let us grant that soldiers deserve at least the same access to care that civilians are due, again without taking a stance on where that access should be provided. Let us now return to the main theme of this section: why do soldiers matter? If our society were to entertain privileged health care for some population, why is it that soldiers could make a compelling claim therein? While an extended treatment of the military’s value would take us too far afield for present purposes, a few key points should be uncontroversial. For starters, what is a soldier? For our purposes, let us understand a soldier to be anyone serving in the military. Some definitions draw distinctions between enlisted personnel and officers, though such a distinction is not appropriate in our context; there is no reason to suppose that either class should be treated differently with respect to health care.4 Similarly, some definitions assume that soldiers are in armies, presumably as against some other branch of the military. Again, this is not useful to us, and we shall assume that military branch is unimportant in assignments of health care; all branches have similar moral status for our purposes. More interestingly, we might draw a distinction between combatants and non-combatants. Certain military personnel, such as chaplains and medics, are owed battlefield immunity under the rules of war, which means, ideally, that they are not at risk on the battlefield. Therefore, it is possible that soldiers deserve special consideration given the risks they suffer while, at the same time, some military functionaries are excluded from this consideration (i.e., not all military personnel are soldiers.). However, the non-combatancy ideal is not always met in practice, whether given illintentioned enemies or vagaries of fast-paced conflict. Furthermore, introducing distinctions like this invites us to make even more fine-grained distinctions, such as whether the infantry should be prioritized in relation to their forward-deployed support staff (e.g., cooks). These sort of adjudications could be pragmatically intractable and, regardless, mask the central concern of this essay. Therefore, we shall understand “soldiers” to comprise all those serving in military forces: airman

Health Care for Soldiers or sailor,5 private or colonel, medic or gunner, deployed or deployable. Having now issued some preliminary commentary on what soldiers are, we can turn to their moral significance. As mentioned above, a thoroughgoing defense of the military would be inappropriate for this essay, so our task shall be to focus on common ground. To that end, militaries—and their constitutive soldiers—most obviously exist to defend their countrymen against foreign aggression. (The U.S. Army’s motto is, in this vein, “This We’ll Defend.”) A central premise of just war theory, dating to Thomas Aquinas, is that the use of force can be justified when defending against aggression;6 this premise persists in contemporary treatments as well.7 And, to that end, countries are morally licensed in creating militaries, even when those militaries threaten lethal force against their adversaries. This basic principle, though, can be complicated in so many ways. For example, we can debate what constitutes an act of aggression—that is, an act against which force can be justifiably invoked. If some state begins to amass troops at a border, can this be construed as aggressive (i.e., in the absence of actual force)? Or what if a state just threatens force? The so-called Bush Doctrine purported to expand the use of justified force, at least extending to pre-emptive usages (i.e., against imminent, non-actual attacks) and perhaps to preventive ones as well (i.e., non-imminent, nonactual attacks). There are other ways in which we can understand the roles of militaries to not be constrained by responses to aggression, such as when they are used in peacekeeping or humanitarian capacities. When considering these, it is at least usually the case that a military is not defending its own countrymen against the use of actual foreign force. Rather, it would be defending some third party against the possibility of domestic force, such as would be employed by a tyrant. In these cases, basic just war principles are put into tension with other moral values, such as the right to state sovereignty; this is not to deny that interventions can be justified, but rather to say that the issues are more nuanced. Despite these complications, the central tenet is still (mostly) unassailed: militaries offer a defense against aggression. Figuring out what “aggression” means might take some work, and we can grant that militaries do not always only defend their own citizens (whether in the above cases or others when we consider international coalition forces). To be sure, militaries do not

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always defend at all, as sometimes they aggress. They can aggress for land, for money, for natural resources, for religious expansion; the history of the world is rife with aggressive militaries. But these are militaries that get it wrong, that get away from their core moral imperative to protect. If soldiers should be prioritized for health care, it is in virtue of this core moral imperative. Soldiers protect us from aggression, we who are unable to protect ourselves. In protecting us, they put themselves in harm’s way, or at least they stand to be put in harm’s way.8 In other words, whether on a forward deployment in Iraq or serving as a stateside reservist, soldiers are liable to threat in a way that their civilian counterparts are not. There are ways in which we all face threats (e.g., terrorism), but those threats do not distinguish between soldier and civilian; at the same time, the threats soldiers face against conventional combatants are theirs alone. It is this asymmetry of risk between soldiers and civilians that grounds the moral celebrity of the former. Returning to health care, it bears emphasis that the risks soldiers face are precisely those that health care aims to rectify. Soldiers’ exposure is physical and psychological, and adverse outcomes in either regard are serviceable by health care. In this way, there is a direct link between soldiers and their claim to health care. The situation might be different, for example, if soldiers risked financial loss rather than physical or psychological loss; in this case, we might entertain a proposal that redressed financial harms.9 Because of the symmetry between what soldiers risk and what society might offer them in return, consideration vis-à-vis health care makes more immediate sense. While we will return to this point later, it would be a substantial moral failing if soldiers did not have adequate health care and, therefore, we were to have an inadequate military. To put it another way, our collective defense is an important moral value. While there are certainly limits as to how far we should go to provide for our own protection, it is nevertheless the case that reasonable costs thereof enjoy some sort of prima facie justification. Were health care for soldiers to be so woeful that they were sufficiently disincentivized from signing up for service, this would be bad insofar as our defense would be compromised. So, whatever other moral consideration we extend to our soldiers, let a starting point be that the mere maintenance of a defensive force is a moral value that at least enjoins us to minimally provide for our soldiers’ health.

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W H Y T R E AT T H E W O U N D E D In thinking about our moral obligations to provide health care for our soldiers, a core distinction worth making is whether those soldiers are to be returned to the fighting force. If so, then our moral obligations to them are compounded by the moral status of that fighting force (viz., its defensive value). Thus far in the essay, the question has been whether soldiers should be prioritized for health care after returning home from war. And, while that will remain our primary focus, we can further elucidate that context by considering its contrary, namely what should be done with injured soldiers who can be restored to battlefield readiness. In this discussion, it will be useful to consider an essay by Michael Gross, which bears the same principal title as this section.10 Gross argues that, while military medical ethics emphasizes the return of soldiers to battle, soldiers who are unable to return to battle lack any sort of priority, whether for military or for civilian treatment. And therein lies: [a] fundamental conflict between the prevailing principles of military medical ethics and those of medical ethics in general. Military medical ethics is guided by the principle of military necessity and driven by the principle of “salvage”, that is, the imperative to return soldiers to duty and maintain their health. Soldiers who cannot return to battle fall under the purview of nonmilitary or civilian medicine. Unlike military medicine, nonmilitary medicine is governed by the laws of medical need and focuses its efforts on saving lives and maintaining quality of life.11

In other words, there are to be two categories of soldiers, those that can be returned to combat and those who cannot. Military medical ethics focuses solely on the former camp. For Gross, the more severely injured soldiers (i.e., those who have now lost military value) are relegated to civilian care on the grounds that “military medical ethics . . . can offer no compelling reason to care for those wounded so badly that they will never fight again.”12 Once severely injured soldiers are remanded to civilian care, however, they enjoy no priority insofar as a soldier’s care “cannot come at the expense of [a civilian’s].”13 Gross therefore answers the central question of this essay in the negative; he denies that returning soldiers (i.e., those not going back to war) should be prioritized for health care as against

their civilian counterparts. His reasoning, though, bears notice. Gross envisions a clear division of labor between military and civilian medicine in which the former restores soldiers to battle and the latter saves lives and maintains quality of life. And then, once non-returning soldiers are integrated into civilian health care, they compete with civilians for care on the grounds that all those who are sick or wounded are equally deserving of medical treatment. There are various challenges that can be raised to this reasoning, but let us just focus on a couple given space constraints. First, if we take seriously the line that military medicine is solely concerned with sending soldiers back to battle, what stance should military physicians take toward the critically wounded? Let us imagine a class of soldiers who are seriously wounded and who, regardless of care, will not reappear on the battlefield anytime soon. With immediate battlefield attention, they might be afforded the opportunity to convalesce stateside and, absent such care, they will die. Further imagine some other soldiers with minor injuries; these injuries, if left untreated, will indefinitely preclude these latter soldiers from fighting but, with treatment, they will quickly return to the battlefield. In triage situations, Gross’s account would have us let the first group of soldiers die such that the military force can reclaim the second group for service. To me, this gets the wrong answer; the priority should be on saving lives. Gross’s call to relegate the severely injured to civilian care simply does not work in this case since those soldiers will be dead without immediate care. His argument, though, is predicated upon this division of labor between military and civilian medicine and, in particular, what military medicine is supposed to be doing (i.e., maintaining the fighting force). Whereas Gross sees this function of military medical ethics trumping medical ethics more generally, I see the two sets of values competing against each other; for me, the military physicians are subject to dual loyalties, both to the injured and to the maintenance of the military.14 How the tension is adjudicated has to do with the details of the case, but suffice it to say that the commitments of military medicine—even granting that they are as Gross says—should not always win. Aside from more general intuitions that saving lives is more important than repairing soldiers, there is a second way in which Gross’s position can be challenged. To wit, it is unlikely that any particular triage situation will ultimately make

Health Care for Soldiers the difference between winning and losing a battle, war, or really anything else that matters. The idea is supposed to be that military physicians are meant to restore soldiers to readiness; the reason for that is the former’s professional obligations and the grounding for these obligations, presumably, is the moral value of the ultimate military objective. However, it hardly follows from this that soldiers have supreme moral status. For example, if the soldiers were aggressors in an unjust war, there would be no moral call to get them back on the battlefield, Gross’s invocation of military medical ethics notwithstanding. Alternatively, let us tie together the earlier themes and assume that our soldiers are justly fighting in a just war. Gross would have military medicine treat the wounded—rather than save lives—even if those wounded would not make any difference in the conflict. To me, this gets it doubly wrong. If one side were going to win the conflict regardless, Gross would still have the military physicians treat wounded while the un-salvageable die. Similarly if the side were going to lose the conflict regardless. How likely is it that some individual soldier would make a difference? As above, I submit that it is not likely at all. Instead, military physicians could save lives of the critically wounded, and this would definitely make a morally relevant difference, not the least to the soldier whose life is saved. This discussion does not figure centrally into our essay, but I raise these points to put pressure against Gross’s more general thesis, namely that military medicine should only serve the maintenance of the fighting force; I disagree for the reasons given in this and the preceding paragraphs. Military medicine should be concerned with the integrity of its associated fighting force, and the maintenance of that force is an important function of military medicine. That said, saving lives should sometimes come first. If this is right, then military medicine is not completely insulated from the ethos of civilian medicine, even if the two share somewhat different priorities. For our purposes, the converse issue is the more pressing: is civilian medicine completely insulated from the ethos of military medicine? To some extent, yes: civilian medicine does not care about the maintenance of a fighting force. This is not to say that a fighting force does not matter, but rather is just to say that it is not civilian medicine’s job to carry out that function. For Gross, though, the separation is complete; recall his claim that a soldier’s care “cannot come at the expense of [a civilian’s].”15

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I disagree, and that disagreement motivates the rest of this essay. The central question here is whether civilian medicine should be blind to military status. Gross thinks so, and I disagree. In carrying out this discussion, we shall focus on two broad sets of considerations, pragmatic and moral.

P R A G M AT I C C O N S I D E R AT I O N S In this section, let us consider whether there are pragmatic reasons for civilian medicine to acknowledge military service in determinations of care, whether as pertains to access or quality. In doing so, we now return to the central issue posed at the outset of this essay, namely the focus on stateside—rather than battlefield—care. The soldiers that we herein consider are ones who do not face any immediate return to armed conflict, otherwise their treatment would fall on military medicine. Still, there are several distinctions worth making. In particular, we might acknowledge that our soldiers could still be active duty (e.g., administrative or other detail), yet not salvageable for battle. Or else they could be active duty, injured or otherwise debilitated in some sense completely unrelated to their military service (e.g., diabetes owing to diet). Or else they could be reservists. Or they could be retired. While our definition of “soldier” above was meant to be widely inclusive, that inclusivity now runs together various morally relevant categories. Generally, we might divide health care for soldiers into two types, rectificatory and rewardbased. Rectificatory care restores soldiers from conditions that they would not have found themselves in but for their military service. Acute battlefield injuries are perhaps the most archetypical examples, but post-traumatic stress certainly counts, as could a wide range of other conditions (e.g., bad sunburn from being deployed in a desert). Reward-based care, on the other hand, treats soldiers for conditions not resulting from the military service; the “reward” idea is simply that this sort of extended care is a perk for military service. The various demographics introduced in the preceding paragraph easily map onto these two types of care and, morally, it will be more useful to refer to this simple distinction than to the various reasons that soldiers would be classified in either regard. What, then, are the pragmatic issues worth considering in either case? As mentioned at the outset of this section, one pragmatic issue that

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need not concern us is the restoration of the fighting force; we are assuming that challenge wholly to fall on military medicine. The principal pragmatic issue we should consider is whether soldiers’ priority ultimately makes a difference for our safety. Why would it, especially if these soldiers are not returning to battle? The answer has to do with recruiting in the first place, particularly our ability to constitute a military able to protect us. If soldiers were to have a higher expectation of care, then military service would be incentivized. This is not to say that new recruits would carefully research their prospects for post-service health care, or that improved prospects would make a difference for them all. Rather, the idea is simply that better health care would lead to better recruiting outcomes. (Note that this claim cuts across the distinction between rectificatory and rewardbased care; regardless, soldiers end up with improved health care.) That said, a lot of things would lead to improved recruiting outcomes, including higher salaries. And it certainly cannot be the case that we should do whatever would lead to those outcomes, particularly insofar as there are myriad social projects competing with the military for our support. Here, though, the distinction between rectificatory and reward-based care becomes useful. In that regard, if we deny soldiers rewardbased care, they are no worse off than they would have been had they not joined the military in the first place. Or, to put it another way, the lack of reward-based care does not provide a disincentive for soldiers to sign up, but rather forsakes the opportunity to provide an incentive. There are various reasons to oppose rewardbased care, though I will only mention a couple. First, while soldiers deserve our gratitude and respect, so do many other demographics. Teachers, for example, provide an important service to society, a service bereft of lucrative remuneration. If we thought that soldiers deserved reward-based care, then why not teachers as well? Or other groups? It just gets too messy to try to articulate a simple reason why soldiers stand apart from the rest as pertains to demands on our health care system. Unless, of course, we consider that soldiers—and maybe some other groups, like policemen—are liable to physical attack. But let us set that aside for now, returning to it shortly under the discussion of rectificatory care. Second, if we are going to reward soldiers, why do it through health care? If the motivation is to incentivize their service, there are other ways to

do it. And probably more efficient ones, too; health care turns out not to be of great importance to a healthy soldier, or at least to a healthy soldier who will not be redeployed. Other motivations include increased pay for our soldiers, or special consideration given to veterans when they apply for certain jobs, the latter of which does in fact take place. The point is that there is no obvious reason to pick health care instead of something else as a means of rewarding our soldiers. And, as Gross previously opined, there are probably reasons not to, namely ones having to do with fairness. Even if reward-based care could be defended, there is simply no good reason to pursue it, given a wealth of other (less controversial) possibilities. While we should be circumspect about rewardbased care, rectificatory care makes perfect sense. We shall deal with the moral arguments for rectificatory care in the next section, but let us close this one by considering the pragmatic ones. The possibility that a soldier could be combat-debilitated while, at the same time, not prioritized for rehabilitation at home is a striking one. There are two adverse effects this potentiality has, which we might designate as recruitment and morale. Regarding the first, if injured soldiers are sent home and then not repaired, this will hardly go unnoticed; in fact, the notoriety of oft-troubled Veterans Affairs facilities bears this out. Gross rightly points out that there are no data to suggest a direct relationship between health care and recruiting, though he also acknowledges a reasonable background assumption that recruited soldiers would have access to “adequate” medical care.16 Gross goes on to question how we should interpret “adequate” in this context, though it seems to me that rectificatory— as opposed to reward-based—care is a minimal standard in this regard. Turning to morale, it has to be the case that, all else equal, military units of higher morale are more effective than those of lower morale. Were soldiers to doubt the prospects for rectificatory care, this could only be psychologically damaging. Interestingly Gross cites many examples of units that had low morale despite good medical care, but this just confuses necessary and sufficient conditions: medical care may well be insufficient for high morale while, at the same time, be necessary. And I suspect this is true, especially pertaining to units with high instant death rates (e.g., the bomb squad, for whom health care is ultimately less important) or those convened under certain religious convictions (i.e., those who do not fear— or else celebrate—death may not need heath care

Health Care for Soldiers to be effective soldiers). To be sure, the relationship between health care and morale is not trivial, but it would hardly be unreasonable to expect confidence in rectificatory care to be necessary for most soldiers’ morale. If this is true—and again assuming that our fighting force is morally justified—then we have a prima facie reason to provide such care for our soldiers. Regardless, our case need not hang on pragmatic arguments, so let us now turn to the moral.

M O R A L C O N S I D E R AT I O N S Having now focused the discussion on rectificatory care, why should soldiers be prioritized for it? The obvious answer is that rectificatory care restores soldiers to the state that they were in before suffering injuries through their military service. Assuming that these soldiers will not return to battle—lest military medicine treat them—the options are now to prioritize them under civilian care or not. If they are not prioritized for civilian care, we have sent our soldiers into harm’s way, and then not taken care of them once they came home injured. Such neglect could be ruled out by any number of moral principles, the most basic of which is that of simple reparation. By analogy, consider a simple assault in which A harms B; A thereafter owes reparation to B. The appropriate reparation could be calculated in various ways—this being one of the things that juries do in torts actions—but let us suppose that A at least owes B for medical bills, if not for lost wages, psychological trauma, and so on. This simple analogy becomes attenuated, though, when considering our soldiers; it is not our society that (collectively) harms the soldiers, but rather the adversaries they encounter on the battlefield. Nevertheless, our society bears responsibility for sending those soldiers into harm’s way, even if that responsibility is ultimate rather than proximate. To clean the analogy up a bit, imagine that B works for A and suffers some harm under the latter’s employ, in the regular course of work, and under no fault of B. In this case, A provides for B, perhaps under some form of workman’s compensation insurance. (Workman’s compensation also precludes the worker from suing the employer; note that the Feres Doctrine similarly precludes soldiers from suing the government.17) Soldiers who are injured during service fit this model exactly, and should therefore be provided for. That said, at least a few features of this conception require further explication.

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First, who is it that sends soldiers to battle? Most proximately, it is their commanding officers. Ultimately, though, it is we, through our elected officials who, in turn, are responsible for military leadership and deployment decisions. And why is it that soldiers are deployed in the first place? The answer, ideally, is to protect us. While some of our citizenry might eschew the use of military force, that force is a legitimate outcome of our democratic processes—as are whatever other policy decisions some of us oppose—and therefore a force for which we bear collective responsibility. To say that we, each and every one of us, are not responsible for our injured soldiers is not just unpatriotic; it is also plain false. If our collective agency leads to the return of injured soldiers, we straightforwardly have an obligation to restore those soldiers to health. Second, what does any of this have to do with priority for injured soldiers? Even if we grant the preceding arguments, maybe there are arguments lurking as to how society has a duty to provide for all of its sick and injured; in fact, such arguments appear in various essays throughout this volume. If we accept such arguments, then the imperative to provide for soldiers loses its force since they are no longer set apart from the rest of the citizenry. This line of argumentation misses the mark and explaining why elucidates an important point. Even if society has an obligation to provide for everyone’s health care—an obligation about which I am dubious—the issue is not whether soldiers are accommodated therein, but rather whether there is some additional consideration to be afforded to them. And, of course, there is such an additional consideration, namely that we sent them to war to defend us and they came back injured. So whatever else—if anything—everyone else is owed, soldiers are owed more, thus grounding their priority. Third, it bears notice that soldiers voluntarily sign up for military duty. And presumably this volition attenuates their right to reparation as, for example, their case seems different from the one of (patently unwilling) assault. But what is it, exactly, that soldiers are volunteering to do? In most cases, they are not volunteering to head into the particular situation that leads to their harm; rather, they are ordered to deploy, ordered into battle, and so on. Nevertheless, they sign up for military service knowing full well what the risks are, or at least let us assume so for the sake of argument. Were one inclined to think that this fact compromises soldiers’ claims to medical

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priority—which is not to say that we all do—there are at least two reasons to think otherwise, one theoretical and one practical. Starting with the theoretical, it is useful to consider a famous essay by Judith Jarvis Thomson in which she savages the argument that even raped women are “responsible” for their pregnancies and that, through this responsibility, their moral claims to abortion are mitigated.18 Thomson’s point is that there is something that even raped women could have done (e.g., had a hysterectomy, never left home without a hired army19) but that the mere existence of this sort of “partial responsibility” for the ultimate outcome does not abrogate their moral claims against wrongs. The situation is similar for soldiers insofar as they are ultimately ordered (i.e., forced) to put themselves in a harmful situation, away from their stateside base or rear-deployed station. Surely, though, this has to be a horrendous analogy: soldiers can expect to be put in harm’s way in such a way that Thomson’s raped woman cannot. Maybe, but it really depends on what “expect” is supposed to mean in this context. The U.S. military, for example, comprises approximately 1.5 million active-duty soldiers, plus some 850,000 more in reserve units. Most of these soldiers never find themselves at risk on a battlefield, or even on a battlefield at all. As a simple statistical measure, then, the average U.S. soldier would expect him- or herself not to be at risk. To be sure, soldiers are more likely to be at risk than the average civilian, and they furthermore have no cause for grievance when placed at risk. The point, though, is simply that responsibility for military service does not automatically annul all claims for reparation thereafter any more than does a woman’s venture into public. Furthermore, there is a practical reason to think that responsibility does not undermine claims for priority: many soldiers do not volunteer for military service at all. While the focus of this essay has been implicitly on U.S. servicemen and servicewomen, some of the world’s countries still effect mandatory military service (e.g., Israel, Switzerland, and others). While the U.S. has not had mandatory military service, it has had military drafts (e.g., for the Vietnam War), and some of those draftees might still have reasonable claims for health care. And, as a provocative comment to be left undeveloped, it is at least plausible that the soldiers who do enlist “voluntarily” nevertheless evince some sort of consensual defect, such as would be manifest by soldiers disproportionately

emanating from lower socioeconomic strata and who have fewer meaningful alternatives to military service. In other words, “choosing” to join the military if one’s financial or educational background precludes other options might not be much of a choice at all. It also bears notice that, were enough soldiers not willing to sign up for military service, we would probably effect some sort of conscription. In some sense, then, consent is redundant, if not for particular soldiers (i.e., those who did consent and might have otherwise avoided conscription).

CONCLUSION The central question of this essay has been whether soldiers should be prioritized for health care. To that end, I assumed that soldiers who could be returned to battle would be treated by military medicine; it is therefore only soldiers who cannot be returned to battle for whom this question gains traction. If soldiers cannot be returned to battle, they fall under the purview of civilian medicine, or at least civilian domestic priorities (e.g., Veterans Affairs facilities). Then we can ask whether such soldiers should be prioritized as against their civilian counterparts, assuming that there is limited medical care available. As mentioned from the outset, many will simply attack this assumption, arguing that there should be adequate medical care available for all, perhaps even as a basic human right. If that is true, though, our inquiry evaporates; it is therefore useful to maintain this assumption, even if for no other reason than to explore the moral terrain. Ultimately, I drew a distinction between reward-based care and rectificatory care, wherein rectificatory care treated conditions arising from military service; reward-based care did not. It was then argued that soldiers should be prioritized (only) for rectificatory care, as this care restores them to the state they would have been in had they not bravely chosen to serve in our collective defense. Notes 1. See, for example, Allhoff 2008a, Adams 2008, List 2008. 2. Though see Baumrin 2002. 3. For the purposes of this essay, I shall take “civilians” to be the contrast class to “soldiers.” This might run together various relevant categories, such as the status of military contractors (i.e., civilians working for the military). I leave open whether military contractors are properly conceived of as soldiers; nothing in the remainder of this essay hangs on an answer to this

Health Care for Soldiers question. There are ways in which military contractors deserve the same consideration as (traditional) soldiers (e.g., service to country) and ways in which they might not (e.g., higher remuneration). That said, it is simply less cumbersome to speak of soldiers and civilians than soldiers and non-soldiers, so I adopt the former. 4. Or let us at least suppose this is true outside of battlefield triage situations. For more discussion regarding this context, see Allhoff 2008a and Adams 2008. 5. Interestingly, the common equivalence between “soldier” and “member of the army” means that there is no dedicated word for members of the army that sets them apart from soldiers in other branches of the military. 6. Thomas Aquinas 1948, Question 40, esp. Article 1. 7. See, for example, Walzer [1977] 2006. For how just war theory is challenged by the contemporary advent of terrorism, see Allhoff 2009. See also Allhoff, 2012. 8. It could be noted that there might be various reasons why soldiers enlist or are commissioned; that is, their motives might well be varied. However, this point fails to obfuscate the risks to which they are ultimately subject. 9. In some ways we do, such as when veterans— whose earning power is somewhat curtailed through military service—receive extra consideration for certain sorts of jobs. Maybe, though, the justification for this practice is expressive support for their service rather than any direct financial accommodation. 10. Gross 2008. For a broader reply, see Allhoff 2008c. 11. Gross 2008, p. 3. 12. Ibid., p. 10. 13. Ibid., p. 11. 14. Allhoff 2008b. 15. Gross 2008, p. 11. 16. Gross 2008, p. 6. 17. Feres v. United States 340 U.S. 135 (1950). Soldiers can, however, file claims for disability with Veterans Affairs. 18. Thomson 1971. 19. Ibid., p. 59.

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References Adams, Marcus P. (2008). Triage priorities and military physicians. In Physicians at War: The Dual-Loyalties Challenge, ed. Fritz Allhoff. Dordrecht: Springer, pp. 215–236. Allhoff, Fritz, ed. (2008a). Physicians at War: The DualLoyalties Challenge. Dordrecht: Springer. Allhoff, Fritz. (2008b). Physicians at war: the dual-loyalties challenge. In Physicians at War: The DualLoyalties Challenge, ed. Fritz Allhoff. Dordrecht: Springer, pp. 3–11. Allhoff, Fritz. (2008c). Treating the military’s wounded: reply to Gross. American Journal of Bioethics 8(2):15–16. Allhoff, Fritz. (2009). The War on Terror and the ethics of exceptionalism. Journal of Military Ethics 8(4):265–288. Allhoff, Fritz. (2012). Terrorism, Ticking Time-Bombs, and Torture. Chicago: University of Chicago Press. Aquinas, Thomas. (1948). Summa Theologica, translated by the Fathers of the English Dominican Province. New York: Benziger Books. Baumrin, Bernard H. (2002). Why there is no right to health care. In Medicine and Social Justice: Essays on the Distribution of Health Care, eds. Rosamond Rhodes, Margaret P. Battin, and Anita Silvers. New York: Oxford University Press, pp. 78–83. Feres v. United States 340 U.S. 135, 1950. Gross, Michael L. (2008). Why treat the wounded? Warrior care, military salvage, and national health. American Journal of Bioethics 8(2): 3–12. List, Justin M. (2008). Medical neutrality and political activism. In Physicians at War: The Dual-Loyalties Challenge, ed. Fritz Allhoff. Dordrecht: Springer, pp. 237–253. Thomson, Judith Jarvis. (1971). A defense of abortion. Philosophy and Public Affairs 1(1): 47–66. Walzer, Michael. (1977/2006). Just and Unjust Wars, 4th ed. New York: Basic Books.

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31 Social Justice and Correctional Health Services KENNETH KIPNIS

Where a legislature refuses to fund a prison adequately, the resulting barbaric conditions should not be immune from constitutional scrutiny simply because no prison official acted culpably. . . . [S]tate-sanctioned punishment consists not so much of specific acts attributable to individual state officials, but more of a cumulative agglomeration of action (and inaction) on an institutional level. supreme court justice harry blackmun. concurring opinion in farmer v . brennan 

A

t the deepest level, the ethical conundrums associated with providing health-related services to those held in American jails and prisons are problems of responsibility. To have a responsibility is to be charged with an obligation to attend to some important sphere of concern. Others are counting on your best efforts to bring about good outcomes and avert bad ones. A responsibility is not a mere duty: to turn the lights on at sundown, for example. Those to whom a responsibility has been delegated are expected to exercise judgment. Think of parental responsibility for a child. To be a decent parent is to be responsive to a child’s shifting needs on an ongoing basis. It is not reducible to ticking items off a list. Where parents are unable to manage responsibility for offspring, they are—or at least they should be—“relieved” of their parental responsibilities. State agencies can intervene to protect children against parental neglect: for example, the failure to obtain pediatric care for evident healthrelated needs. The need for such laws is easily appreciated, as are the special vulnerabilities of children. In general, a focus on responsibility can give rise to three types of question. First, one wants to know how the responsibility has come to settle upon those who have it. What is its justification? Second, one wants to know what it requires of those who have it. What is its scope? And finally, one wants to know how it is implemented. What is supposed to bring it about that the defined responsibilities are discharged? When fleshed out,

these three inquiries can help us to make sense of responsibility for prison health care: its justification, its scope, and its implementation. We will explore the juridic status of convicts, taking into account the implications of imprisonment as regards responsibility for the delivery of health care. We will look at circumstances that can impede the delivery of adequate correctional health services and, finally, we will briefly consider strategies for ameliorating the quality of care. It is important to note that this chapter is not an attempt to expose massive patterns of institutional wrongdoing in correctional health services. The literature on that topic is quite vast, and this essay is not intended to add to it. Wardens, correctional officers, doctors, nurses, and prisons and jails are astoundingly varied. And while I have met prison doctors I would readily choose to care for my loved ones, I have also encountered problems that can be as disturbing as they are entrenched. These issues are the focus of the present study. While I do not claim that the shortcomings discussed here are common, they illuminate salient questions about the generic role of health care professionals in correctional facilities and about the resources and authority that should be available to those who take on such responsibilities. This essay is a preliminary effort to map the normative geography of prison health care. While I will offer more questions than answers, the overview will contribute to further inquiry, or so I am hoping. On February 27, 2005, The New York Times began a three-part series on health care in

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New York State correctional facilities.2 Two cases described in that first article can serve as an introduction to the issues raised here. Case 1: Brian Tetrault was 44 when he was charged with taking items from his ex-wife’s home. Having struggled with Parkinson’s disease for several years, he had been taking medications for tremors, pain, and psychiatric problems. Taken to a jail, the medical director saw him on his second day and discontinued five of his medications. On his fourth day in jail, he began to experience the effects of his new regimen. By day 6 he lay in his bunk, soiled with urine and unable to move. His deterioration was charted by the nurses: “Inmate remains very stiff.” “Head arched back, sweating profusely.” On day 8, following a nurse’s phone call to the medical director, Mr. Tetrault was taken to a hospital emergency department. A doctor wrote “I suspect . . . he was not getting his full dose of medication as needed.” On day 11 Brian Tetrault died. Case 2: Victoria Williams Smith, 35 and the mother of a teen-age boy, had been taken to jail after attempting to smuggle drugs to her imprisoned husband. When she complained about chest pains, she was seen by the part-time medical director, a pathologist who had never treated patients in a hospital. Although the EKGs that were ordered indicated abnormalities, the doctor had not followed up. A nurse, unfamiliar with the patient’s record, noted the chest pains and notified the part-time psychiatrist who, without seeing the patient, prescribed a drug for intestinal problems. Ten days after she began complaining about chest pains, Ms. Smith, weeping, told a guard she wanted to go to a hospital. The nurse on duty dismissed the request as an attempt to obtain drugs but, minutes later, Victoria Smith was on the floor shaking. Taken to a nearby hospital, she died from a heart attack in less than an hour. A letter to her husband was later found in her cell: “My chest is tight & burns, my arms are numb. . . I been to the nurse about five times & no body will help me. I need to get out of this jail.”

JUSTICE AND IMPRISONMENT To wonder about social justice is to struggle with assessing the distribution of societal goods and bads. How are we to share the benefits and burdens of social cooperation? Think of seats in a theater. If you have the money and are willing to spend it on a show, you are able to purchase a ticket from the theater owner. Otherwise you will be shut out. Though we think of theater tickets as a market commodity, and though many have

come to celebrate the market as the epitome of justice and efficiency, there are plainly alternative ways of conceiving cultural events. Dramatic performances in ancient Greece could be essentially open, much as parades, public parks, bathrooms, library story hours, and holiday fireworks displays can be for us. While it is common to view the market as a just mechanism for distributing “goods” (the term is common to both economics and ethics), it is evident that when items and services are made available, a social choice can be made whether these will enter a market to be bought and sold, or whether they will be allocated wholly or in part in accordance with principles other than the ability and willingness to pay vendors the going price. While there is much to be said on behalf of markets, when one considers vaccinations, elementary education, and firefighting services, it becomes clear that access need not always be a consequence of transactions between buyers and sellers. There are alternatives.3 Let us call all such arrangements “non-market” systems and briefly consider what might justify them. As can be easily appreciated, the problems taken up in this essay arise out of delivery of health care resources to prisoners, a population that is, in effect, juridically excluded from participating in the market-based mechanisms that distribute much of America’s health care. How are we to understand the justification for non-market arrangements in prisons? Here are some approaches. In some cases, the justification for a nonmarket system involves an appeal to goals that are shared, more or less, by the community as a whole. We may all be more secure if fires are contained as quickly as possible, if property owners do not need to negotiate with the vendors of firefighting services while homes, businesses, and factories go up in flames. Likewise, where prisons become crowded and unwholesome—breeding grounds for infectious illness—the effects of medical neglect would not be confined to those behind bars: most convicts are eventually released. In a second category, the justification of a non-market system can involve an appeal to some right. It is arguable that police protection services, legal services in serious criminal proceedings, and elementary education must be provided where needed, not merely because it is in the public interest that this be done, but, rather, because the beneficiaries of these goods have an entitlement to it. The victim of an ongoing assault has (or surely ought to have) a right to reasonable assistance

Social Justice and Correctional Health Services from a police department. Secondly, it is arguable that children have a right to be taught skills that are essential to a decent life in the complex society we will leave to them. If society does not owe them that as a matter of law, a just society would surely acknowledge such a right. Finally, those accused of criminal wrongs have a right to a defense attorney in proceedings that would be unfairly imposed in the absence of skilled counsel and representation. Errors in police work, prosecution, and adjudication increase the likelihood that undeserved punishments will be imposed upon the innocent. In ensuring that criminal defendants get a fair shake, diligent defense attorneys will make miscarriages of justice less likely. In a third category, non-market mechanisms may be justified, not by identifying some right enjoyed by the beneficiary, but, rather, by an appeal to a duty or a special responsibility that has somehow been assumed by (or delegated to) those designated to provide the good. We may wish to say, for example, that where it is vital to their wellbeing, children should receive medical care, not because they have a basic right to health care—we may believe that no one does—but, rather, because in becoming parents, mothers and fathers come to have a social responsibility to provide that care. The child is what lawyers would call a “third-party beneficiary.” While the duty is owed to the state, the child is the beneficiary of the duty. If I pay you to take care of my dog while I am away, the duty is owed to me even as it is the dog who benefits from the care. I suggested at the beginning that a concern about social justice must focus upon societal goods and bads; burdens as well as benefits. While goods will attract ready takers (giving rise to rationing systems in some cases), many will want to evade the bads. Think of the contested legal “duties” to pay “burdensome” taxes, to be drafted into the military, to wear “decent” attire in public, to tolerate a prison halfway house next door, to undertake “easy rescues” of the precariously placed, to forbear the use of “recreational” drugs, to ride motorcycles without helmets, and to carry fetuses to term. While there are better and worse ways of thinking about each of these issues, together they exemplify some of the controversies that emerge in a democratic polity when it comes to criminalizing behavior. And yet any social order must in some way identify actions and omissions that cannot be tolerated, wrongdoings that are serious enough to warrant official punishment. Three assumptions provide the background for the discussion that follows. We are familiar

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enough with the connection between crime and punishment. Among all of the social bads that society can visit upon its members, legal punishment is among the most burdensome.4 It will be assumed in what follows, first, that punishment is a permissible response to those who have been identified as having committed serious wrongdoings.5 Further, recklessly sidestepping a plethora of counter-examples, qualifications, and objections, I will assume, secondly, that all those so identified have either been properly convicted of serious wrongdoings, or are being properly held in temporary custody pending definitive adjudication.6 Notwithstanding the many shortcomings in this general claim, the methodology used in what follows assumes perfect compliance with a defensible account of substantive and procedural criminal justice. When the elements of criminal offenses are drafted with wisdom and precision; when the police officers, prosecutors, defense attorneys, judges, and juries that implement, interpret, and apply the criminal law take their social responsibilities seriously; and when the public appreciates that the criminal justice system that acts in its name must do so under its gaze and in the light of day: when all these conditions are satisfied, those who are convicted of criminal offenses may be properly consigned to a social status that is intended to be unwelcome. They become convicts. As convicts, they may be subjected to punishment: a societally authorized form of hard treatment. We should not, however, take it for granted that those who are convicted should be sentenced to prison. As a venerable human practice, punishment has taken on an astonishing variety of forms. Chinese magistrates traditionally employed a complex range of punishments. Minor offenses could merit a precise number of lashings with a standardized light bamboo even as the most egregious of crimes could be punished by the execution of an entire family, three generations. Stalin’s labor camps imposed commonly fatal levels of material deprivation. European governments historically imposed gruesome forms of penal torture, England famously transported its felons to Australia, and crucifixion was familiar in the ancient world. There is no necessity to use prisons and, indeed, as social institutions, they are only about 200 years old.7 While more work needs to be done on the nature and justification of imprisonment as a form of punishment, we should not be surprised, in our society, to see retribution take the form of loss of liberty. Those reared in liberal democracies are

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familiar with the celebration of freedom as a preeminent political good. Such societies are, perhaps by definition, informed by the value rational persons are presumed to place on liberty. So the first of John Rawls’ two principles of justice reads: “each person is to have an equal right to the most extensive basic liberty compatible with a similar liberty for others.”8 And Joel Feinberg devoted much of his life to a defense of John Stuart Mill’s liberal presumption in favor of liberty: that, unless there are good reasons to the contrary, individuals should be free to do as they choose.9 Accordingly, where liberty is broadly embraced as a preeminent political good, there are at least two reasons why punishment could take the form of imprisonment—that is, an officially imposed, systematic suspension of liberty. First, the penal deprivation of liberty might be reasonably and broadly supposed to be undesirable enough to deter rational malefactors, at least in the liberal societies where it will be imposed. This risk of unwelcome treatment will give almost everyone a weighty reason to forbear wrongdoing and abide by the law. Second, the imprisonment of those convicted of serious offenses could persuade law-abiding citizens that, so retributed, crime does not pay. It is unlikely that representative citizens will come to believe that wrongdoers can count on “getting away with murder.” Finally, as a bonus, it can be a relief that those who have committed fearful wrongs will, at least for a time, no longer be at liberty to reoffend. Accordingly, it is not unreasonable that those convicted of sufficiently grave offenses be “remanded to the warden’s custody.” In so doing, the judicial system solemnly entrusts prison administrators to carry out the penal sentences imposed by the courts. Along with fines, probation, community service, and the occasional execution, the retributive loss of liberty is, in most places, the most prominent form that judicial punishment takes. At this writing, there are over 2 million persons in American jails and prisons. My third assumption in what follows is that the penal forfeiture of liberty is, here and now, an appropriate form of punishment; that the prison— more or less as we understand it—is an appropriate means of implementing such a punishment. Excepting the few who are sentenced to death, prisons are not where convicts go to be punished. Rather, being held in prison is, in itself, the judicially mandated punishment. So understood, prisons are institutions in which the presumption in favor of liberty is in large measure reversed—that is, unless there are good reasons to the contrary,

inmates should not be free to do as they choose. On this account, prisons are to be understood as social institutions that are constituted for the explicit purpose of systematically constraining the freedom of those convicted of serious offenses. But note that, while liberalism has generated a rich discussion on the ethical limits applicable to personal liberty (drug use, helmet laws, abortion, pornography, etc.) there is no comparable interest in setting the ethical limits applicable to the penal forfeiture of liberty. Much of the work of this essay explores, in a preliminary way, one dimension of this critically important topic. Jurisprudentially, the prison’s implementation of the inverted liberal principle has taken the form of judicial deference to prison administrators and the states that employ them. Adopting a traditional “hands off ” policy, the courts historically gave wardens broad latitude. In consequence, prison management has taken on many forms and has been thought to serve a motley agglomeration of goals and functions, some of which are perhaps derived from the prison’s central retributive mission (as we have described it), others more or less peripheral to it, and finally, some perhaps in conflict with it. Along with the constituting task of implementing the retributive forfeiture of liberty, commentators and critics have spoken of rehabilitation, encouraging repentance, incapacitating convicted wrongdoers, providing educations for future careers in crime, deterring crime in the “free world,” making available a population of tightly controlled research subjects, generating revenues through the use of a monitored involuntary “prison labor” force, promoting institutional efficiency, disciplining a wide variety of peoples who live at the margins of society, serving as a rite of passage for young African-Americans, preventing predatory behavior within the prison, facilitating suffering, managing a surplus labor force, protecting an atavistic enclave of a pre-Civil War social order, and so on. Obviously there is a pressing need for further inquiry on prisons. Which functions might be tolerated? Which should be rooted out? Here we can only gesture toward the troubling terrains that surround the practices of incarceration. There is a profound need for systematic thinking. But notwithstanding the variety of goals, there is one salient feature that sharply narrows the warden’s focus: prisons are, by their very nature, coercive institutions. The inmates there have been arrested, their sentences have been imposed upon them, and, from the moment the prisoner first

Social Justice and Correctional Health Services hears the steel doors slam shut, the most familiar elements of everyday social life are palpably closed off. Accordingly, those remanded to the warden’s custody are presumed to be (1) intent on taking their leave should the opportunity arise, and (2) unenthusiastic at best about deferring to the prison administration’s de jure authority. Thus the liberties inmates must surely forfeit are those that give way to the warden’s core responsibility for prison security: the prevention of escape and riot. In this regard we can point to the military management model, the walls, the razor wire, the locked doors, the armed guards, the regimentation, and the secondary penal systems within the prison. Administratively, physically and philosophically, these familiar elements of prison life betoken an absence of trust. It is within this remarkable setting that correctional health services must operate.

T H E M A N D AT E O F THE CORRECTIONAL H E A LT H C A R E PROFES SIONAL While it is relatively easy to discern the warden’s ethical situation in the context of prison life, the role-responsibilities of the correctional health care professional are not as easily appreciated. Notwithstanding the systematic suspension of liberty and apart from privileges made available by the grace of prison administration, it is useful to distinguish between two types of right that inmates can claim.10 There are, first, “residual rights” that survive the sentence to prison. The general right to legal counsel, for example, cannot be abridged by wardens, though it is commonly contoured to comport with penal regimes. And second, there are other rights that flow from the status of being in the custody of the warden: rights, for example, to food and, more generally, to living conditions that measure up to our “evolving standards of decency.” The Eighth Amendment’s right to be free of “cruel and unusual punishment” is another. A word needs to be said about this Constitutional prohibition of excessive punishment. While the restriction would seem to be reasonable on its face, it clearly requires judgment in discerning the meaning of “cruel and unusual.” The phrase signals a plausible limit that reasonable people would want to place upon the state’s power to visit deliberate suffering upon those coming under its penal authority. Recall that the protection of citizens against the abuse of sovereign power is a

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prominent theme both in the Constitution and in the thinking of the Founders. But there is another line of thought that can be advanced in defense of the provision. While democratic theory holds that the state derives its legitimacy from the consent of the governed, in a deeper sense, those with responsibility for the polity must take care not to discredit their offices and, by implication, the government in whose name they act. Notice that those who commit serious crimes are typically discredited by the conviction and the sentence. They have been “condemned” by the court. Convicts are bad examples, reverse role models so to speak. We are not supposed to like them, much less emulate them. But when it comes to the conviction and punishment of an innocent person, or the infliction of deliberate cruelty on one actually guilty, these carry a risk of discrediting the polity itself and thereby eroding the respect and trust that can be at the foundation of obedience to law. Civil disobedience—the arrest and punishment of people who, like Gandhi and Martin Luther King, are widely viewed as moral heroes—can call into question the justice of the law. Because cruel and unusual punishment can imperil the legitimacy of the state, those with political power are well advised to forbear such measures no matter how much, in the heat of the moment, they may appear to be deserved. The Eighth Amendment can be read as a reminder of that salient political responsibility. While it may well be legitimate, as I have assumed, to deprive the convicted of their liberty, the hard treatment that wrongdoers deserve under such a regime does not include the imposition of other forms of suffering. A systematically imposed forfeiture of liberty is legally sufficient, and anything beyond that may be unjust and unlawful. It is in that determinate context that we can address the role of the health care professional as regards the inmate/patient. Although prison medicine has had a fairly tarnished history in the United States, courts have occasionally scrutinized the source of the duty to treat inmates. In 1926, for example, a North Carolina court opined in Spicer v. Williamson: “it is but just that the public be required to care for the prisoner, who cannot by reason of the deprivation of his liberty, care for himself.”11 An influential 1929 report elaborated on the point: In exacting the penalty which society demands for the infraction of its laws, the state removes the individual from his usual societal conditions

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and places him under conditions which deprive him of the ability to help himself. . . . Having assumed this guardianship, the state is under obligation to care for the needs of the individual while he is deprived of the opportunity to care for himself. . . . Although the state may rightfully deprive a citizen of his usual freedom and social contacts, it is morally and traditionally obligated to care for him when, in case of illness and other forms of disability, he is unable to care for himself. This responsibility is as binding as is that of furnishing food, clothing and shelter to such individuals.12

This insightful (and, I believe, correct) analysis sees the state’s duty to provide health care to prison inmates as a custodial obligation flowing from the prisoner’s juridic deprivation of liberty. In this context, inmates resemble children in a jurisprudential sense: both are in custody. Both are juridically disabled: they are not at liberty to attend to their basic needs. Although there are differences, it is revealing to observe how the legally narrowed liberty rights of children (children can do only what their parents allow them to do) are comparably paired with a reciprocal prohibition against parental neglect.13 Even as they exercise lawful authority over the child, parents have a readily grasped special obligation to provide food, clothing, shelter, and medical care for their young. It is, in part, because children, like inmates, are juridically denied the legal powers needed to provide for themselves, that parents and guardians, like wardens, are properly charged with a legal obligation to make needed medical services available to those in their custody. In jurisprudential terms, the constriction of the standard range of liberty rights is tolerable, in part, because of the presence of special claim rights. Upon emancipation in the case of minors, and upon completion of a prison sentence in the case of convicts, the legal adult and the parolee come to enjoy a greatly enhanced range of liberty rights even as they lose their entitlements to bed, board, and other necessities of life. So understood, the state’s duty to provide health care to inmates flows from the state’s decision to deprive them of their liberty. In 1973 the Supreme Court set out a second and quite different argument for prison health care. Appealing to the Eighth Amendment, the Court ruled, in Estelle v. Gamble14, that: deliberate indifference to serious medical needs of prisoners constitutes the “unnecessary and

wanton infliction of pain” . . . proscribed by the Eighth Amendment. This is true whether the indifference is manifested by prison doctors in their response to the prisoner’s needs or by prison guards in intentionally denying or delaying access to medical care or intentionally interfering with the treatment once prescribed. Regardless of how evidenced, deliberate indifference to a prisoner’s serious illness or injury states a cause of action under Sec. 1983.

Thus, surprisingly and thanks to Estelle, convicted felons are the only population in the United States with something like a Constitutional right to health care.15 Notice that, unlike the North Carolina court in Spicer v. Williamson, the more recent Supreme Court ruling in Estelle v. Gamble grounds the state’s duty to provide health care on the prohibition of “cruel and unusual punishment.” Linking the Court’s thinking to the analysis set out above, it would seem that since “deliberate” indifference to the inmate’s medical needs adds a willful and illicit measure of suffering to that which is incident to the licit penalty of imprisonment (loss of liberty), the warden and all those accountable to that office have consequential duties to respond appropriately to evident medical needs. For wardens, it can be unconstitutional cruelty to withhold needed health care; unlawful to be deliberately indifferent to an inmate’s health care needs. Having formerly been merely an element of good penological practice, responsiveness to the inmate’s medical requirements has evolved into something like a Constitutionally mandated entitlement. But note that failure to provide care becomes a cause of legal action only when it is accompanied by “deliberate indifference.” If vital care can be deliberately denied because it is too expensive or too inconvenient to administer or because of other asyet-to-be-specified reasons, it may be that the Constitutional mandate will come to mean very little. As a matter of Constitutional law, there are as yet no medical conditions that are sufficiently evident and exigent, and no relevant medical treatments that are sufficiently safe, effective, and routinely employed in free-world clinical practice, that they can together give rise to a Constitutional entitlement. The standard set out in Estelle requires only that inmates’ evident health care needs appear on the warden’s radar screen. While this was plainly progress, there is a way to go before adequate health care is available to prisoners as a matter of law.

Social Justice and Correctional Health Services Nonetheless, on either of these two analyses, what brings health care professionals into prison are, first, the legal requirement that prison administrators attend to the serious health needs of inmates, and second (a feature we haven’t considered yet), the background prohibitions on the unlicensed practice of medicine, nursing, etc. As a matter of law, wardens must be responsive to inmates’ health care needs. But—equally as a matter of law—they are generally not licensed to provide medicine and nursing themselves. Accordingly, when we take the duty to make health care available (as in Spicer and Estelle), and add to it the prevailing practices of health care licensure, what precipitates is the warden’s special obligation to retain health care professionals to deliver healthrelated services to those in the corrections setting. Hence the juridic necessity of hiring doctors and nurses to provide health care for inmate/patients.

H E A LT H C A R E PROFES SIONALS IN THE CORRECTIONS SETTING Now, by their very nature, health care professionals are committed to putting the patient’s interests first: striving above all never to harm them, treating decisionally capacitated patients only with informed consent, observing the pertinent standards of professional practice, and protecting patient privacy. At the root of this attentive deference, so antithetical to the prison’s punitive ambience, is the understandable vulnerability that the ill, in or out of prison, experience when compelled to rely on health care professionals. Infirmity can require us to tell uncomfortable truths to our doctors, to open ourselves in ways that, in other settings, would be embarrassing, shameful, and imprudent. This trust in the integrity of health care professionals is an indispensable element of the “therapeutic alliance.” It is largely because of these well-understood professional commitments (coupled with health care professions’ distinctive knowledge and skills) that, first, we as a society have delegated to duly licensed health care professionals the exclusive responsibility to deliver their distinctive services to the community (unauthorized practice being a criminal offense) and, second, that the infirm are as willing as they are to seek out and utilize these specialists. The work of those in correctional health services is importantly different from the practices of health care in the free world. One way to bring this out is to sort out the professional’s normative commitments according to the discrete social

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roles encountered in professional practice. Those of us in higher education have one set of responsibilities toward our students, a second set toward our colleagues, and a third toward those who administer the educational institutions where we work. It is possible to map the normative dimension of a profession’s practice in order to formulate and array the obligations practitioners have towards these stakeholders so that the obligations are consistent with each other. Those who develop professional codes are familiar with the process. In the present context, it is a useful oversimplification to conceive the responsibilities of the generic correctional health care professional as vectored toward three discrete parties. First are the familiar clinical responsibilities for the well-being of the inmate/patients. Here are the familiar clinical obligations toward the inmate/ patient: centrally, formally codified duties of beneficence and non-maleficence toward the patient, within the parameters of the decisionally capacitated patient’s consent. Here certain issues arise that can differentiate prison health care from care in the free world. First, elective medical procedures are typically not offered in prison. But consider whether doctors should remove gangrelated tattoos if an inmate wishes to be rid of them. Consider abortions for women who do not wish to carry their fetuses to term. Another second set of issues arises for patients who do not follow medical recommendations. Self-injurious behavior is not uncommon among inmates. Consider a diabetic who consumes candy bars from the prison canteen, with expensive and life-threatening consequences. A clinician can suspend the inmate’s canteen privileges, enforcing compliance with the doctors’ orders. Such therapeutic care is beyond the power and authority of free-world clinicians. Whether they are ethically permissible is an issue that calls for further work. A second normative vector calls attention to “public health” obligations toward the inmate population taken as a whole. Though various strategies can help to prevent or slow the spread of illness through a population, they can sometimes pit collective interests against the interests of individuals. Can TB tests be administered even when inmate/patients refuse to consent? In extreme cases (e.g., an outbreak of multiple-drug-resistant tuberculosis) health care professionals may need to segregate infected persons, quarantining them. Can the patients also be medically treated against their will? If a prison tattoo artist is spreading hepatitis, there may be a choice between (1) having

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the corrections officers shut the operation down, (2) providing the tattooist with the knowledge and equipment to do the work safely, or (3) engaging the prison population in a conversation about how to manage the risks. Should prisons and jails be smoke-free environments? In that the first “clinical” perspective requires that one be worthy of patient trust while the second “public health” perspective prioritizes the health needs of the group, conflicts of obligation may be inevitable when a single person must discharge both sets of obligations. A third set of obligations is vectored toward the warden and those working under the authority of that office. Although health care providers serve the individual and collective health needs of the inmate population, they are nonetheless working, directly or indirectly, for prison administration.16 We noted earlier how the administrative elements of prison administration betoken an absence of trust in the inmate. Against this background, the health care provider’s foundational duty to nurture the trust and confidence of the inmate/patient will collide with the institution’s prevailing ethic. On one side is the professional autonomy sometimes claimed by those who provide health care to inmates. On the other is the authority of the warden in matters affecting prison security and management. Correctional health care professionals do have obligations that they cannot leave at the prison gate. At bottom, they are doctors and nurses, etc., and their professional obligations attach directly to those roles. Indeed, wardens are required to employ them precisely because, as health care professionals, they are supposed to appreciate the normative requirements of clinical practice and to have mastered the knowledge and skills needed to discharge their essential duties. But even so, these professionals are employed by administrative supervisors whose chief concerns are with prison security rather than health care. As with doctors working in the military and in corporate settings, health care professionals can be an alien presence. While, for the clinicians, the well-being of the patient is the highest priority, at bottom, prisons are not about health care. There is, accordingly, a contested terrain between the claimed prerogatives of health care professionals and the authority of prison administration. Two perspectives are possible. The border skirmishes evidence the difficulty that health care professionals have in accommodating to the corrections setting, which is essentially different from

free-world practice. One can opine that it will take time for the profession to adapt. But, equally (and this is the position I have defended17), the battles can be seen as evidence of unfinished business in the professionalization of correctional health services. As with anyone who plays a vital role, practitioners need the resources and latitude needed to discharge the obligations they take on in their work. The pilots flying for a commercial airline should not take operational orders from the company’s Chief Executive Officer, no matter how powerful he is, and certainly not if he lacks a pilot’s license. Here are five representative issues: 1. Despite administrative prohibition of sexual activity and intravenous injection of illicit drugs, both practices may be common in prisons, along with the accompanying infectious illnesses. Health care professionals are likely to be frustrated in implementing proven public-health strategies (e.g., needle exchange, instruction in the use of bleach for disinfecting needles, and condom distribution). Serious infections may spread because the prison administration prohibits health care professionals from “condoning” drug abuse and sexual contact. 2. Wardens have commonly called upon health care professionals to do body cavity searches to recover contraband. These may be non-consensual and completely unrelated to securing the health-related interests of the inmate/patient. 3. Administrators may, for various reasons, try to obtain access to medical records. 4. Health care professionals may become involved in executions, particularly where lethal injections are used. They may train technicians in correct procedures, oversee the proceedings, and take over if an execution is being botched. All of these are explicitly forbidden by applicable professional codes. Even the bare declaration of death is ethically questionable. For, ordinarily, when death is pronounced, the official judgment confirms that no further life-saving measures are called for. But on death row, subtle signs of life will trigger a duty to administer further boluses of lethal chemicals. The ritual of ending a convict’s

Social Justice and Correctional Health Services life will not be over until a clinician signals that it is. Here doctors and nurses have plainly enlisted in the punitive mission of the prison. They are not practicing health care but, arguably, the very opposite. 5. Finally, there are the issues that arise when inmates become hunger strikers. Sometimes forced feedings may be administered or overseen by health care professionals using procedures that would not be permitted in free-world settings. Sometimes prison doctors will keep hunger strikers informed of their options and prognosis, advising them that when they lose decision-making capacity, health care professionals will not provide nutrition and hydration unless the patient has explicitly authorized it. While, as a matter of medical ethics, it is axiomatic that doctors must honor refusals of treatment by decisionally capacitated adults, including refusals of nutrition and hydration, it remains to be seen whether correctional health care professionals will assert a broad prerogative to practice in accordance with the prevailing standards of their professions. This has been a contentious issue in military medicine, arising painfully in the interrogation of unlawful enemy combatants. The encroachment upon the professional autonomy of the correctional health care professional can take the form of direct subordination to the authority of the warden. Or, more likely, prison administration and staff can make the clinician’s work difficult and unpleasant. Here I would urge correctional health care professionals to draw and defend a line between permissibly conforming to those prison regulations that are reasonably intended to promote prison security, and impermissibly allowing oneself and one’s professional colleagues to become enmeshed in the penal mission of the institution. Once the slippage begins, it may be difficult to regain a professional foothold. In the end, one may have no professional identity left to preserve.

S O C I A L J U S T I C E , H E A LT H CARE, AND PRISONS Justice in correctional health services, as a topic, names a multifocal problem. In an essay as brief as this one, one can only characterize key issues and

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commend strategies that might point toward solutions.

Incarceration as a Juridic Disability In health care, most disabilities are conceived as physical impairments of normal capacity. Others, however, are juridically imposed. Though most children have yet to develop the normal complement of abilities possessed by emancipated young adults, their impediments also include legal disabilities. Minors are not at liberty to enter into binding contracts, get married, leave home without permission, consent to sexual relationships with older adults, drink alcohol, obtain drivers’ licenses, forego education, and so on for many other options freely undertaken by adults. Focusing on health care, it is easy to assemble strategies that adults commonly undertake when they are dissatisfied with medical services. You can look for a different doctor or health care provider, pay out of pocket for treatments not included under whatever coverage you have, complain to organizational supervisors about mistakes and shortcomings in the delivery of health care, and sue health care professionals if you are injured by treatment that falls below some standard. You can move to a place with better services, take a job with an employer who has a better plan, or vote for political candidates who will support desired improvements. These familiar protective measures can protect us against the ravages that can occur when health care is unavailable or inadequate. However for inmates, generally, none of these are options. The two journalistic narratives at the beginning of this paper illustrate what it is to be exquisitely vulnerable to shortcomings in health care, shortcomings that would be inconsequential but for the inmate’s powerlessness. Recall “I need to get out of this jail.” When essential liberties are suspended, liberties we might take for granted, that can cost us our lives. And powerlessness may be only the beginning. While those who administer prisons must delegate health care to those licensed to provide it, it is open to them to retain barely qualified practitioners who are at the end of their professional ropes. Though licensed, they may worry about tarnished pasts and be fearful about displeasing their employer. Often isolated while working inside the prison and with few professional contacts outside (where doctors don’t know what it is like), doctors and nurses may find it easy to become a part of the penal culture of the prison. They may not be called to account when

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adverse events occur and they may discover that they have nowhere to go when clinical medicine has become a charade.

The Social Disvaluation of the Incarcerated Theoretical and practical concerns about social justice are likely to drive an interest in discrimination against socially disvalued groups. To study African-American history is to review the debates about race-based chattel slavery, to learn about the rise of Jim Crow and the saga of the Civil Rights movement. During roughly the same era, women in the United States struggled to remove some of the more oppressive elements of a traditionally patriarchal society. On both fronts, oppressed peoples have worked to reduce discrimination in employment, in the law, and in public accommodations. Many would say these efforts have moved us toward a more perfect union. But discrimination is not just a collection of malleable laws and social practices. It takes its nourishment from deeply entrenched prejudice, eventually yielding an unreasonable readiness to discount the claims and interests of those within the socially disvalued group. One telling marker shows us how everyday duties of decency and fairness can be compromised. For both women, prior to the ratification of the Nineteenth Amendment in 1920, and African-Americans, prior to the adoption of the Voting Rights Act of 1965, the restriction of the right to vote was perhaps the most dramatic way of ensuring that the interests of these disvalued groups would not be given expression in the political process. That African-Americans and women were denied the franchise is perhaps the best indication of the low regard in which both groups were popularly held. We have earlier in this essay called attention to the social processes of defining a range of wrongs as criminal offenses, for apprehending and trying those charged with the commission crimes, for convicting those whose guilt has been established beyond reasonable doubt, and for sentencing them to jail and prison as punishment. This lengthy ritual, from the initial report of an infraction to the eventual release from prison, completes a circle: removing a wrongdoer from society, imposing a proportional punishment, and finally freeing the prisoner back into society. The pivotal event occurs when the accused is condemned: by the jury, by the judge, and, through those offices, by the community itself. The denunciation is palpable and public, and the evidence for it is on the record.

Convicts are a quintessentially stigmatized group. Here it should be noted that almost all states at present bar inmates from voting in elections, and a significant minority of them disenfranchise ex-convicts as well. To the extent that this is so, electoral strategies intended to rectify wrongs and highlight unmet political needs will not be as available to those who have run afoul of the criminal law. To the extent that political obligation flows from the consent of the governed, those who lack the franchise may have, at least in theory, only an attenuated duty to conform to the law. This surely cannot be a desirable result. If someone dared to propose to take the franchise away from Catholics, or Cuban-Americans, or Texans, or women, there would be hell to pay. But that states can disenfranchise inmates and ex-convicts with barely an audible debate: that tells us something about our opinions of these people, about our grasp of democratic theory, and about our readiness to dismiss the claims and interests of those within this socially disvalued group. It would tell us these things even if, after ample democratic deliberation, our reasons for denying the fundamental right of citizenship turns out to be stronger than our reasons for honoring it. This social disvaluation of the incarcerated is the critically important backdrop against which prison health care must be seen. Those who work in prison health care, who administer or oversee prison programs, and who play a role in formulating laws and policies: all of these people need to be mindful of how easy it is for those in authority to tolerate “barbaric prison conditions” when those who must endure them are society’s least deserving.18

The Management of Responsibility for Inmates Recent decades have seen an astounding increase in the size of the American prison population. Popular policies like “truth in sentencing” and the “war on drugs” have accelerated the rate at which convicts entered prison even as longer prison terms have slowed the rate at which convicts left. As our prison populations have grown in size, they have also become older and, in consequence, their health care problems have become more complex and more expensive. If the states and the federal government are having difficulty providing adequate health care to the more than 2 million people who are incarcerated today, the economic burdens of paying for it will only be greater tomorrow.

Social Justice and Correctional Health Services In a different context, hospitals have learned to prepare for disasters by practicing “triage”: a method of queuing patients when there is not enough to provide everyone with what they need. But it would be a mistake to construe a crisis in correctional health services as calling for the rationing of care. Instead we must go back to the beginning: to the point where elected politicians and lobbyists move from a fevered condemnation of vice to the criminalization of some new offense. Assuming that the governmental funds allocated for prisons are not going to be enough to provide a decent minimum for inmates, and assuming that it is indecent to provide inmates with any less, then, barring barbarism, the only solution is to reduce the number of inmates to a level where the available resources are ample to provide the necessary care. After decades of promoting prison as a cure for social ills, criminalizing offenses without tracking the social costs of incarceration, we must, I suggest, apply triage to the substantive criminal law. Given that we are unable to afford criminal sanctions for all of the offenses currently on the books, we might ask ourselves: Which crimes are the most egregious? Which offenders are most likely to pose threats to others? Which categories of convict can be safely released? Which offenses can be dropped from the criminal codes without doing grave damage to the social fabric, bearing in mind that costly and barbaric prison conditions also do grave damage to the social fabric? I began this essay by noting that the dilemmas associated with correctional health services are problems of responsibility. Here the substantive responsibility is to attend to the health care needs of a prison population. Plainly inmates and their loved ones must count on clinicians to use their knowledge, their skills, and their resources to bring about good health-related outcomes and avert bad ones. In the prison setting, health care professional have a critically important responsibility. But more broadly, there is a commonsense ethical principle that is applicable to any who are contemplating a responsibility that has fallen or may fall upon their shoulders: Individuals and agencies may not take on responsibilities that they cannot manage. When the discrepancy between the burdens of an office and the resources available to it reaches a certain point, worthy social practices will become a deceptive pretense. I would suggest, on the governmental side, that officials might declare a partial amnesty and reduce aggregate prison sentences to levels where taxpayers

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can adequately provide for a manageably smaller prison population. But on the professional side, health care personnel may find they lack the needed resources: supplies, medicines, competent personnel, physical space, privacy, and the occupational latitude, the professional autonomy needed to provide for inmate/patients. When a clinical service becomes so poorly supported that it becomes a hazard, when the path leading toward professional renewal has been shut off, and when all that remains is a demoralizing illusion of concerned attention, it may be that withdrawal of services is the only honest option.

A F I NA L WO R D This chapter is not a defense of convicts. My argument began by assuming that those properly convicted of serious wrongdoings deserve to be punished, and that imprisonment, much as we know it, is an appropriate form of punishment. Even if every single person who is currently incarcerated in prison had actually committed some serious crime, we would still need to think hard and critically about the treatment that we, as a society, should impose upon them. It is precisely because it is so obvious that we should disvalue those whom we have placed on trial and solemnly condemned in a court of law that we need to be scrupulously careful about not visiting upon them a fate that is more burdensome than they deserve and more cruel, more barbaric, than we have any right to inflict. AC K N OW L E D G M E N T S The work that has gone into this essay has been intermittently ongoing for more than a decade. Many have contributed along the way. In particular, I am deeply grateful to Kim Thorburn, Diane Rothon, Laura Specker, John Kleinig, Nancy Dubler, and Meda Chesney-Lind. Notes 1. 511 U.S. 825 (1994). 2. von Zielbauer, P. (Feb. 27, 2005). Harsh medicine: as health care in jails goes private, 10 days can be a death sentence. New York Times. 3. Note the many “hybrid” systems. The sale of certain drugs, for example, is restricted to end-users possessing a doctor’s prescription warranting that the drug is to be used for a proper purpose. 4. There are other ways of responding to wrongdoing. See, for example, Golash, D. (2005). The Case Against Punishment: Retribution, Crime Prevention, and the Law. New York: New York University Press.

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5. The classic Kantian argument for punishment is set out by Morris, H. (1968). Persons and punishment. The Monist, 52:475. But see also Murphy, J.G. (1973). Marxism and retribution. Philosophy and Public Affairs, 2:217. There is much useful discussion in Kleinig, J. (2008). Ethics and Criminal Justice. Cambridge, Cambridge University Press, pp. 193–251. 6. I set aside issues involving the incarceration of improperly documented aliens, prisoners of war, and unlawful combatants, and other cases where conviction has not occurred nor is anticipated. 7. While jails have long been used to hold the accused pending trial and punishment, being held in custody was not intended as a punishment in itself. The concept of a “penitentiary” emerged in the 18th century. Though jails are still used as holding facilities for those awaiting trial, they now serve for shorter sentences. Longer sentences call for prisons. 8. Rawls, J. (1971). A Theory of Justice. Cambridge: Harvard University Press, p. 60. 9. Feinberg, J. (1987–1990). The Moral Limits of the Criminal Law, Volumes 1–4. New York: Oxford University Press. 10. Bedau, H.A. (1982). Prisoners’ rights. Criminal Justice Ethics 1:26–41. 11. 191 NC 487, 132 S.E. 291 (1926). 12. National Society for Penal Information, F.L. Rector (ed.) (1929). Health and Medical Service in American Prisons and Reformatories. New York: J.J. Little and Ives. Quoted in L.N. King (2006). Doctors, patients, and the history of correctional medicine. Clinical Practice in Correctional Medicine, 2nd ed. Philadelphia: Mosby Elsevier, p. 6. 13. For an overview of the status of minors, see Houlgate, L.D. (1980). The Child and the State:

A Normative Theory of Juvenile Rights. Baltimore: Johns Hopkins University Press. 14. 429 US 97 (1976). 15. In a society without a general right to welfare, it will happen that the worst-off free citizens may sometimes be able to improve their lot by committing crimes that will send them to prison. Police lore tells the stories of homeless people who smash store windows in the autumn, waiting for an arrest so they can spend the cold winter in jail: “three hots and a cot.” Under extreme need, a promise of imprisonment induces crime. Three responses are notable. (1) Prisons must become truly barbaric, keeping the levels of welfare inside well below those of the worst-off free citizens. (2) Welfare levels associated with the worst-off free citizens outside must be raised so they are higher than those of the incarcerated inside. Everyone, for example, might receive a “get into jail free” card. And (3) This is only a philosopher’s problem. Reasonable people don’t worry about it. 16. In many cases correctional health-care professionals are employed directly by a government agency. In others an agency will outsource health services to some outside organization, often a for-profit corporation. 17. Kipnis, K. (2001). Ethical conflict in correctional health services. In M. Davis & A. Stark, eds. Conflict of Interest in the Professions. New York: Oxford University Press. 18. In the context of this discussion, the reader might reconsider Philip Zimbardo’s famous 1971 Stanford Prison Experiment and the notorious events at Attica and Abu Ghraib. Taken together, these raise deeper questions about the possibility of averting the malignant effects of unchecked authority in prisons. The Stanford Prison Experiment home page is http:// www.prisonexp.org/.

PART IV Dilemmas and Priorities

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32 Are Pre-existing Condition Exclusion Clauses Just? Lessons from Causal and Ethical Considerations Regarding Genetic Testing R O B E R T T. P E N N O C K

THE CURRENT C O N T R OV E R S Y One of the key features of the Patient Protection and Affordable Care Act—the major health care law that President Obama signed on March 23, 2010—was a reform of private health insurance, especially with regard to coverage of individuals with so-called “pre-existing conditions.” The term refers to a health condition that a person has prior to applying for a new health insurance policy. A study by the Department of Health and Human Services estimated that, depending upon the definition used, between 50 to 129 million non-elderly Americans have some type of pre-existing health condition. This represents between 19% and 50% of non-elderly Americans, and of this group up to 1 in 5 is currently uninsured (HealthCare.gov 2010). When an insurer determines that a person applying for a policy has a pre-existing condition, it typically will charge higher premiums, set limits on benefits, or simply deny coverage entirely. The new rules regarding pre-existing conditions in the Affordable Care Act would put an end to such insurance practices by 2014, by which time a system of health insurance exchanges would be implemented and available for all individuals and small businesses. In the interim, individuals who had been denied coverage by an insurer because of a pre-existing condition are able to make use of a special pre-existing condition insurance plan (PCIP). The provision to ban insurance discrimination based on pre-existing conditions was a major centerpiece of the Act, and President Obama especially focused attention on these in his remarks at the bill signing, emphasizing how they exemplified the “core principle that everybody

should have some basic security when it comes to their health care” (Obama 2010). However, no sooner had President Obama’s signature been set than political opponents of the Affordable Care Act began work to undermine it. Republicans pledged to repeal, overturn, or at least gut substantive provisions from the Act. More than a dozen attorneys general, again mostly Republican, immediately filed suits charging that the law was unconstitutional (Stolberg & Pear 2010). Most of these were subsequently dismissed or had their arguments rejected, but as of this writing two federal judges (in Virginia and Florida) have ruled that the so-called “individual mandate” of the Act, which requires individuals to maintain “minimum essential coverage” of health insurance, is unconstitutional. The constitutional challenge to the individual mandate and to the related question of whether it can be severed from the Act will likely have to be resolved by the Supreme Court (HFMA 2010). Insurance companies also challenged the Act, specifically targeting the pre-existing condition provisions. In the days leading up to the bill signing, President Obama had emphasized that “Starting this year, insurance companies will be banned forever from denying coverage to children with pre-existing conditions,” but some insurers argued that the fine print of the Act only said that they had to cover pre-existing conditions if they chose to cover a child, but that it did not require them to write insurance for someone with a pre-existing condition until 2014 (Pear 2010). Many insurers must hope that the Act will be repealed by then, which Republicans again vowed to do following their retaking of the majority in the House of Representatives in the

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November 2010 congressional election (Fox News 2010). In January 2011, the House voted to repeal the law, and in April, as part of the budget deal, Republicans required a new debate and vote on repeal in the Senate as well (Fox News 2011). With this issue of guaranteed medical insurance and pre-existing conditions once again at the center of political debate, this is an appropriate time to revisit one special class of pre-existing conditions—those identified by genetic tests. This particular issue had become especially pressing by the turn of the millennium because of significant scientific advances in the 1990s, in part the result of the Human Genome Project. It seemed as though each week brought news of some new study that found a possible genetic link to some disease. As tests that could identify genes associated with diseases proliferated, individuals faced a problem: if they tested positive for a disease gene, insurers would say they have a pre-existing condition and cancel or deny coverage on that basis. In the United States, cases of individuals being denied insurance by companies because of their genetic risk were among the famous list of cases of genetic discrimination brought to public attention by geneticist Paul Billings (Billings 1993). A study by the U.S. Office of Technology Assessment in 1992 found that half of all private and nonprofit health insurers would refuse coverage to applicants if a genetic test revealed the likelihood of a serious, chronic disease. The same study found that 14% of genetic counselors and nurses had clients who had reported having problems about their health insurance because of genetic test results (Sanders 1993). From the insurers’ point of view, so-called preexisting condition exclusion clauses make good sense and it seemed obvious to them that when a genetic test reveals that someone has a disease gene, this is a proper reason to deny him or her coverage. In an earlier paper (Pennock 2006), I focused on the ethical implications for the future of medical insurance of regarding genes in this manner. Are pre-existing condition exclusion clauses in insurance policies just or unjust? In particular, I considered whether it is just to deny medical insurance to people who test positive for a disease gene on the grounds that it is a pre-existing condition. This chapter recapitulates my previous analysis that focused on some key causal and ethical considerations regarding pre-existing condition exclusion clauses for pre-existing genetic conditions, and then asks what light that special case may shed on the current debate about pre-existing conditions generally.

I argue that we cannot make a general pronouncement about the justice or injustice of pre-existing condition exclusion clauses; in certain circumstances they are perfectly just, in others not. In the second section of this chapter I defend the justice of pre-existing condition exclusion clauses for the sorts of conditions that have historically been excluded under this heading given the traditional conception of insurance. However, there are both conceptual and moral problems with excluding people who test positive for some “disease gene” under this rubric, and I argue that justice requires minimally that people not be denied medical insurance on these grounds. The third section presents a model of the causal relation—the CaSE model—that provides the framework for the argument. In the fourth section, I apply the CaSE model to the case of “disease genes” to show why it is wrong to consider in general the presence of a particular allele (i.e., form of a gene) as being equivalent to having a genetic disease and why, instead, it should be considered in the same light as environmental conditions. This tells us that the argument of the second section of the chapter does not apply as a valid reason to deny someone insurance on the basis of a genetic test alone. However, it does not show that it is wrong to charge higher premiums if a gene increases risk of disease, and this could lead to a situation in which large numbers of people become genetically uninsurable. In the next section of the chapter, I argue from a Rawlsian viewpoint that ethical considerations of justice require the elimination of pre-existing condition exclusion clauses for pre-existing genetic conditions. The final section of the chapter returns to the current debate and discusses what general lessons may be drawn from the resolution of the genetic case.

PRE-EXISTING CONDITIONS Historically, when an insurance company declined to insure people with a pre-existing disease condition, that phrase meant that they already had the disease. A miner who was already diagnosed as suffering from black lung disease, say, could not then apply for insurance for that condition. Such pre-existing condition exclusion clauses made sense in the circumstances under which insurance organizations arose and on the traditional model of what an insurance policy is. The contingencies of the world require us always to act under conditions of uncertainty, and medical insurance arose as a way to deal with

Are Pre-existing Condition Exclusion Clauses Just? uncertainty about one’s future health. A health insurance policy allows individuals to take financial precautions against the possibility of debilitating illnesses and other maladies without all individuals having to tie up significant portions of their resources saving for illnesses that might never occur. Some fortunate policyholders wind up never being sick a day in their lives and so never collect on their policies, but such people have no reason to think that they wasted their money. When they bought their policy they were in the same position as others who bought theirs, none knowing what the future would bring. For anyone who was acting prudently, it made good economic sense to share the risk with others in a similar predicament. The advent of mathematical probability and statistics in the 17th century, originally developed by Blaise Pascal in response to a gambling problem posed to him by Chevalier Meré in 1654, made such decisions under uncertainty more precise. In 1657 Christiaan Huygens wrote the first probability textbook, and in 1662 John Graunt published the first set of statistical inferences, based in part upon mortality records (Hacking 1990, p. 16). Such data and mathematical tools allowed an actuary to differentiate people by groups that had differential risks and thus to assign them different premiums—individuals in groups with lesser risk could then pay less than those who fell in groups that had a greater risk. Some people would be required to pay a higher premium than others, but this sort of differentiation seems morally unproblematic. Prima facie it fits Aristotle’s formal principle of justice, which says that equals should be treated equally and unequals unequally. Furthermore, it looks as though differential risk is the relevant property for the case at hand. If we think of buying insurance on the model of placing a bet in a gambling game, as early statisticians did and as many people still do, this form of differential treatment does seem just. If several people are placing bets together on what will turn up when a pair of dice is thrown with the winner collecting the whole pot, then it would be unfair to require the person who bets on snake eyes to pay as much as the one who bets on seven, since the latter has a higher chance of collecting. Instead, because the latter has a six times greater chance of winning than the former, fairness requires that his initial bet be six times larger. Once the differential probabilities of winning are known, mathematical probability lets gamblers calculate what would be

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fair bets for the different outcomes. Similarly, information about differential risk of illness (or disability, or mortality) among different groups allows the actuary to say that an individual in one or another group has a respectively higher or lower chance of “winning”—that is, collecting an insurance payoff by virtue of becoming ill (or disabled, or dying)—and thus to charge them appropriately different premiums. When we consider insurance in this traditional manner, it also seems obvious that the original sort of pre-existing condition exclusion clause was just. To allow John Doe to join the insurance game and receive a policy for a disease that he already suffered from would be like allowing someone to place their bet after the dice had already been thrown and their number had already come up. In this scenario the pre-existing condition exclusion clause simply prevents someone from being a guaranteed winner. Surely it would be unfair to the other “players” that they pay for those who joined the game only after they had already “won.” It would be like allowing deceased persons’ heirs to sign them up for life insurance policies postmortem. How does this bear upon the issues raised by the new genetic tests? In a straightforward way, genetic tests reduce uncertainty by providing more information. They allow us to take people who previously would have been classified together in the same risk group and to place them into smaller, more homogeneous reference classes. To ignore the information that genetic tests provide would seem to violate the basic principle upon which insurance works. An insurance company spokesman argues the perspective of the insurance industry this way: Insurance is sold to provide financial protection against unanticipated loss. If people who know they will die at an early age are allowed by law to purchase insurance, then they are at an advantage not only over the insurer but over all the other policy holders covered by that company. As a basic principle, insurance is priced so that those at equal assumed risk pay equally for their protection. If that is not the case, the price of all insurance must change. (Lowden 1994, p. 1509)

Here the spokesman was focusing on life insurance, but the same point applies to health and disability insurance. Genetic tests function like a peek at the cards. Losses or wins may no longer be unanticipated, and if the law were to prohibit

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insurers from denying coverage to people who are privy to their genetic information, this would be equivalent to allowing those individuals to legally cheat the odds. Of course, in most cases individuals learn the results of a genetic test in settings where it becomes a part of their medical records and thus is also accessible to insurers. If unfair use of genetic information is going to occur, it is more thus likely that it will be individuals who are at a disadvantage vis-à-vis insurance companies. There are well-documented cases of genetic discrimination against individuals. Probably the most systematic case of this occurred in the 1970s after some states began to require genetic screening for the sickle cell trait. The original motivation for screening was to provide family planning aid to people with the trait, but a National Academy of Sciences panel noted that it led to a situation in which carriers of the gene were “denied jobs and charged higher insurance rates without evidence that the trait placed a person at a higher risk of illness or death” (Hilts, 1993). The unwarranted assumption of insurers seemed to be that simply having the gene meant that one had an increased risk.1 In this case the differentiation was unjust because it involved imposing higher premiums without demonstration of higher risk. However, why would it necessarily be discriminatory to deny insurance to someone who tests positive for a disease gene, assuming that we did have good evidence that it increases the risks? The insurance company position is that it is not unjust to deny insurance in such cases on the same grounds as before, namely because the disease condition was pre-existing. Despite the apparent reasonableness of this position, I want to argue now that it rests on a couple of important confusions in the notions of “genetic disease,” “disease gene,” and “pre-existing condition.” In brief, there is an ambiguity in the notion of a “pre-existing condition”; having a disease gene is not the same as having a pre-existing disease. Furthermore, I’ll argue that there is parity between causal conditions that are genetic and those that are environmental, so that, looking simply at the level of causal interactions, there is no reason to say that “the cause” of a disease is “genetic” and not “environmental.” In a trivial sense, every disease may be said to have a pre-existing genetic component. One must bring in pragmatic considerations before classifying a disease as genetic rather than environmental. To make this argument I will begin by introducing some general considerations about the causal relation; I’ll

introduce the CaSE model as a framework for representing causal relations and then apply it to the case of genetic diseases.

CaSE MODEL OF C AU S AT I O N Causation is an ontic relation—it takes place in the world and involves physical objects, events, properties, processes, and so on. We must distinguish this ontological aspect of the causal relation from the way we speak about causal relations. When we make causal claims we typically speak of causation as though it were a simple two-place relation. We say things like “Pressing your foot on the brake causes the car to slow and come to a stop” or “Striking a match causes it to light.” In the world, however, causation is not so simple. The world is a complex web of intersecting causal processes converging one upon another and diverging again at points throughout space–time. There are other important features of the causal relation (for example, that it involves production and propagation, and that it has an important asymmetry, that it licenses certain inferences), but for our purposes here the critical feature is its web structure—multiple causal factors are required to produce an effect or effects, and those factors themselves are effects with multiple causes. Ordinarily it does no harm to think of the causal relation as we usually do as the two-place relation “C causes E” with only a single factor as the cause (C) and another as the effect (E). In most circumstances explaining to a novice learning to drive that “pressing the brake causes the car to slow down and stop” is all that is required to convey the causal principle. However, the experienced driver knows that it takes more than pressing the brake (C) to stop the car (E), for that may not work if the brake pads are worn, the car is heavily loaded, or the roads are slick. When considering the causal relations involved in stopping when in the car the driver tacitly takes into account these other relevant factors. Clearly, therefore, more information is required to express the causal relation fully and accurately than is included in the single-factor representation. A more sophisticated representation acknowledges that it is always a constellation of factors that makes up the causal antecedent. With this approach we may say that the antecedent of the causal conditional contains multiple independent relevant variables (that it is MIRVed), and it is their combined force that produces the effect. In the car case, besides the pressing of the brake, the

Are Pre-existing Condition Exclusion Clauses Just? antecedent C would have to specify that the brake linings are not worn, that the tires are dry, and many other relevant factors. For the representation to be complete, the antecedent C would have to contain all the factors that are involved in the production of the effect, including negative factors as in the example. Given the effect that I am interested in, such as my coming to a stop in my car at noon yesterday at the intersection of Fifth and Craig, there is a precise answer to the question of what caused it, but that answer is complex and requires specification of far more than the mere fact that I pressed the brake. Having a MIRVed antecedent is more faithful to the ontic relation in that it recognizes equally all the multiple causal conditions that produce the effect, but the approach has a few notable disadvantages. It is rarely practical, since a specification of all the factors could quickly make the representation unwieldy. It also reduces the inferences that one may draw. And it obscures what often appear to be significant differences between the various factors, such as the difference between a triggering cause and background conditions. Also, it does not do as well as the single-factor approach in capturing the way we ordinarily speak of causation. I propose the CaSE model of the causal relation as an alternative representation that incorporates the virtues of both points of view. To accomplish this compromise, the model uses a four-place relation in which the pragmatically highlighted factors of “the cause” and “the effect” are placed in their occasioning context or “situation,” giving us Condition C in situation S causes effect E. This is abbreviated in the acronym “CaSE.” The capitalized letters are placeholders for the ontic causal factors and the lowercase “a” stands in for the pragmatic elements (often expressed in terms of alternatives, for example, C rather than C′, or E rather than E′). In the CaSE formulation all the factors of the MIRVed antecedent that had resided tacitly in the background in the single-factor twoplace relation are put in the situation S. So, for example, if we are talking about the striking of a match (C) causing it to ignite (E), then S would include such relevant factors as there being oxygen present, the match being dry, the air being calm, and so on. When precise specification of the factors is not necessary we sometimes think of S as representing assumed “standard conditions.” The CaSE model thus makes explicit that it is actually a combination of factors that causes an effect, and it also allows us to isolate a particular factor that is of special interest, as we commonly

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do in ordinary causal talk. What we label “the cause” from among the multiple causal conditions is a salient factor that we choose to highlight because, for instance, we take it to be the triggering factor in standard background conditions or because of our particular interest at the time. More generally, from among the multiple relevant causal factors, the one we choose to call C is based on pragmatic considerations and may change depending upon the question we ask or the stake we have in the outcome or the context of the discussion. For example, we are often interested in causal relations because we desire the ability to intervene and to control outcomes and so will typically cite as “the” cause of some given effect that factor that is amenable to our control. In other cases we are interested in unusual or unexpected factors that have significant effects under otherwise standard conditions. For instance, under normal conditions we say that striking causes the match to light. But if striking the match had taken place in what we thought was an airtight, oxygenfree chamber, we would probably say not that the striking was the cause, but rather that the oxygen that had entered unexpectedly through a faulty valve was the cause. The ontic causal factors that conspired to produce the flame are the same in the two cases; only which of them are taken as “background conditions” and which is taken as “the cause” changes. This parsing into cause and conditions is thus a function of pragmatics rather than of ontology. In an analysis of causation it is also common to distinguish between necessary causal factors and sufficient causal factors. In the match example the presence of oxygen was a necessary factor in the relation that produced the flame. Yet, in the second match example, because of the unexpected leak in what was thought to be an airtight valve, the introduction of oxygen was a sufficient factor in the relation that produced the flame. This division between necessary and sufficient factors is common. Nevertheless, we notice that the oxygen was once cited as a necessary factor and another time as a sufficient factor, though in both cases the list of contributing factors was the same. If the necessary/sufficient division reflected some important ontic difference, then it would seem strange that this could happen. Again, the CaSE model suggests that this is a pragmatic difference. In the first example, by reparsing the situational factors (i.e., by conceptually “holding fixed” the striking of the match as part of S), the necessary cause (oxygen) is seen to be also sufficient relative

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to the background situation. In the second example, holding fixed the original setup, the introduction of the sufficient cause (oxygen) is also recognized as having been necessary for the effect.2 In this way we have just reversed what was illustrated in the original examples; how we place the emphasis is simply a pragmatic matter. To illustrate how the CaSE model may represent different pragmatic parsings of causal conditions, let us take a slight variation of Hanson’s classic example of an automobile accident at the intersection (Hanson 1958, p. 54). What caused the accident? In the shop the mechanics say that the cause was worn brake linings. At the station the police officers say that speeding was the cause. At Town Hall, concerned citizens say that a tree branch that partially obscured the traffic light was the cause. And so on. These persons cite things that were among the necessary conditions in the constellation of causal factors that produced the accident, but that were also sufficient given the “normal” or “default” situation assumed by their constituency. Mechanics assume that people may drive fast and that road conditions will vary, and focus on what is within their power to remedy. The citizens recognize that drivers occasionally exceed the speed limit and sometimes fail to have their vehicles in the best condition, and they seek to eliminate unusual environmental hazards that could bring a worst-case possibility into actuality. Shared context of discussion or shared community assumptions usually determine quite clearly what is included in situation S. When discussants do not share common assumptions, it may become obvious in the course of conversation, and they usually take steps to remedy the misunderstanding by making their assumptions explicit.3 On an informal level, therefore, we see that the fourplace relation does seem to be implicitly assumed in our causal talk and that it is brought to the fore when speakers recognize that they are operating with different conceptions of what constitutes standard conditions. To summarize, the four-place CaSE model holds all causal factors as ontically equal for the production of a given effect, while providing a way to recognize the striking feature of causal talk—that of singling out a particular factor as being of special interest. This acknowledges the multiplicity of factors that are involved in the production of an effect and also, by means of the pragmatic element and the slot for placing those factors one takes to be fixed as the background situation, makes explicit the ways we may highlight

one or another of the conditions as “the” cause. It also makes clear that our labeling of some factors as “conditions” and another as “the cause” can change depending upon our interests and pragmatic choices, as can whether a cause is thought of as necessary or sufficient.

C a S E S T U DY O F “GENETIC DISEASE” What does this model of causation tell us about the concept “genetic disease” and the notion of a “disease gene”? A quick CaSE study provides the answer. For any given symptom set there are necessarily both genetic and environmental contributing causes. It is not the gene alone, but the gene in some environmental situation, S, that produces some effect. For example, the gene called “patched” is involved in the occurrence of basal cell carcinomas. The gene works by inhibiting cell growth, but if both copies of patched in a single cell are damaged by ultraviolet radiation from exposure to the sun, then the cell divides unchecked and a tumor—a basal cell carcinoma—forms (Pennisi 1996). Furthermore, if we are talking about some particular gene, G, the other genes in the genome would also have to be included in S, becoming, as it were, part of its environment. If G appeared together with a different combination of other genes it might have a completely different effect. The CaSE model helps make it clear that this is as true for so-called “single-gene diseases” like sickle cell anemia as it is for polygenic diseases. In many cases geneticists have no idea what additional factors are necessary for a gene to express itself. For instance, a gene for Hirschsprung’s disease—an intestinal disorder—was found on chromosome 10 that appears to be autosomal dominant with incomplete penetrance; some people with a single copy develop the disease but others do not (Fackelmann 1993). A disease symptom set is a possible effect, so whether G gets expressed in that way or not will depend upon what happens to be in S. These considerations let us draw a couple of important conclusions. First, it tells us that simply having a particular allele in one’s genome is not the same thing as suffering from a disease. To take an extreme example, it would be absurd to disqualify someone from dismemberment insurance on the grounds that they already had the gene sequence that codes for arms, without which they could never lose an arm. Even having the “chalky bone” mutation that weakens bones and predisposes one to fractures only causes that malady under particular environmental

Are Pre-existing Condition Exclusion Clauses Just? conditions, namely hard and bumpy ones. Furthermore, there is great variability in the occurrence, severity, and course of most genetic diseases. Someone who gets the gene for neurofibromatosis may develop “marked disability of the nervous system, muscles, bones, and skin, while others will exhibit only minor pigmented spots on their bodies” (Gostin 1994, p. 126). Some people with sickle cell anemia “are seriously ill from early childhood and others show only ‘minor symptoms later in life’” (Cranor 1994, p. 131). Indeed, a gene that is neutral or even disadvantageous in one situation may turn out to confer an advantage in another; this is the essence of what it is to be a pre-adaptation. Because of this possibility, critical in evolutionary development, it is important that we remember that it can be misleading to call something a “disease gene”—an allele that causes a disease in one set of circumstances could in theory turn out to confer an advantage in another. By itself, a gene is not “for” anything, let alone some malady, but produces effects only in concert with the other causal factors in which it is situated. What this means is that we must disambiguate two senses of the term “pre-existing condition.” In the initial argument given in support of preexisting condition exclusion clauses for medical insurance we judged that it was unfair to allow people to join the insurance pool after they already suffered from the disease (the condition) for which they wanted to be insured. But having the disease condition in this way is quite different from having the causal conditions that predispose one to developing the disease condition. To say that one has a disease gene is just to say that one has a given allele that under certain conditions increases one’s chance of getting the disease. It is true that having a disease gene is a “pre-existing condition,” but this is so in the latter sense (i.e., a causal condition that in a given situation may develop into a disease) not the former (i.e., the diseased condition itself), which was the sense used in the insurer’s argument justifying genetic pre-existing condition exclusion clauses. Thus, we may not automatically infer that that argument shows that it is ethically acceptable to deny people insurance because they have tested positive for a gene that is a causal precondition for developing a disease. The argument uses the term “pre-existing condition” in two different senses and so is not valid because it commits the fallacy of ambiguity. Indeed, as we shall see, if that argument were the basis for exclusion, then no one would qualify for

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insurance at all unless they didn’t need insurance in the first place. This follows from the second point we should glean from the CaSE analysis, namely that all diseases are “genetic diseases” and all are “environmental diseases” as well in that all have genetic causes and also all have environmental causes. It makes sense to settle on one aspect rather than the other only relative to other causal factors in the situation. Thus, whether we think of a particular disease as genetic or environmental depends upon which of the occurring causal factors we consider to be the background situation. Again, this is a pragmatic and not just an ontic matter.4 Of course, in most cases pragmatic factors will likely tend to one side or the other. We judge individual cases relative to what we take to be a standard set of conditions, and for ourselves typically we will do this relative to what we take to be the normal healthy bodily state under the normal range of environmental conditions that we live. There are several ways that we might choose to define the normal healthy state—a statistical norm relative to a population, a functional norm relative to our evolutionary history, or a value norm relative to some standard of preferences—that correspond to different theories of disease. If the diseased departure from this state can be traced to a change in the corresponding “normal gene state,” then we are likely to call it a genetic disease. If it can be traced to a change in the corresponding “normal environmental state,” we are likely to call it an environmental disease. The story quickly gets more complicated, however, because there may be other features of the situation that may also be of pragmatic interest and thus change which factor we emphasize. We may categorize cases differently depending upon whether and how we can intervene to prevent or cure the disease. Take hemochromatosis, for instance, an adult-onset disease that looks like end-stage liver failure and carries with it a risk of pituitary problems and cardiac failure. The gene that is blamed for the disease is an autosomal recessive. However, because the disease is totally treatable by conventional therapy (phlebotomy to draw off the excess iron store) it is not usually thought of in the category of genetic screening problems, but rather just as a conventional illness. On the other hand, as genetic technologies improve and the promise of efficacious gene therapy becomes more of a reality, some scientists are beginning to call a genetic disease anything that could be treatable with some gene-level intervention.

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These alternative classifications work the same way as singling out one or another causal factor as “the” cause of the car accident depending upon which variables of the situation people’s interests take to be fixed and which is under their purview to modify. There is much more that could be said about the pragmatics of disease classification, but this discussion is sufficient for us to now return to the original question. The foregoing considerations put us in a better position to evaluate the ethical question we originally posed about the justice of pre-existing condition exclusion clauses that deny insurance eligibility for individuals who test positive for some disease gene. Is there a moral reason to come down one way rather than the other in fixing the assumed situation and thereby calling a given disease genetic or environmental? For our purposes in considering the justice of exclusion clauses for medical insurance, the environmental/ genetic distinction makes no moral difference in and of itself. The fallacy of ambiguity that we identified in regard to genetic causal preconditions would equally apply to environmental preconditions. In most cases, having a predisposing causal condition that could cause a disease is not the same thing as suffering from the disease condition itself. This showed us that at a merely ontic level there is a parity between genetic and environmental causal conditions. The parity extends in other relevant ways as well. The most important point of parity involves how changing conditions change risks. Of course, having a genetic precondition for a disease, D, can make a difference, perhaps even a very large difference, in one’s risk of developing D, but this is equally true of environmental causal conditions. Smoking, engaging in certain sexual practices, or living on a flood plain significantly increases one’s chances of contracting various diseases and of dying. There is an exact symmetry between genetic and environmental causal conditions in the sense that either may raise (or lower) one’s risks a little or a lot, depending upon the situation. Thus, if insurance company policy was to have pre-existing condition exclusion clauses for any pre-existing causal factor that increased one’s chances of some D, then they could insure no one at all. But, of course, this would be absurd since the point of insurance is to take precautions against risks. Driving an automobile, living in a city, and working as a coal miner all increase the chances that one will need medical attention. It would not make sense for an insurer to deny insurance on

the grounds that someone had the “pre-existing condition of urban residence” or had already begun working in the mines. Even in cases in which the risks are extremely high of contracting a disease given some genetic or environmental precondition, there may be considerable variability in time of onset, and here too there is parity between genetic and environmental factors. In neither case do we know, as we do when a person already suffers from a disease, whether those factors will develop to the point that the person begins to exhibit symptoms and requires medical care. It can be extremely difficult to predict time of onset of a disease because of the extreme variability of genetic disease, even within the same family (Gostin 1994, p. 126). Even in cases in which the gene could be shown to cause a disease with certainty, with many diseases one still could not say exactly when or even if the onset would occur. A person with the gene marker for Huntington’s or other late-onset disease may never collect any insurance for that malady, if only because he may die earlier in an explosion caused by an oxygen leak. Similarly, someone with the human immunodeficiency virus could die in a automobile wreck before developing any symptoms of AIDS. Even knowing that the effect is inevitable and that it is certain that one could collect on insurance eventually is not in itself a reason to deny insurance because of variability in time of onset. Everyone is going to die, but that is not a good reason to deny someone life insurance; follow that rule and there would not be life insurance in the first place. The main conclusion we should draw from this discussion is that genetic and environmental causal preconditions are on a par. For that reason, it is wrong to deny someone insurance by counting having a “disease gene” as a pre-existing condition. We have misled ourselves in thinking that there is something critically different about genetic causal conditions; probably this is because we have begun only recently to be able to identify and understand genes and we still have only marginal abilities to intervene to control them. Genes still seem mysterious. It has not helped that scientists have done little to discourage the popular press in its tendency to speak of genes as though they alone determine our lives. People have developed an attitude that might be described as “genetic fatalism.” The fatalistic attitude about genes is unwarranted; it is based on a simplistic understanding of the causal web within which a gene is just one factor among many. This over-generalized

Are Pre-existing Condition Exclusion Clauses Just? view of the power of genes can lead people to conclude unjustifiably that testing positive for “a disease gene” is the same as having a disease. The second conclusion we can draw is that under the traditional U.S. system of medical insurance based on the gambling analogy of players freely choosing whether or not they will agree to play, it is acceptable for premiums to reflect differential assumed risk, assessed by a genetic test. Prima facie, it is the degree of risk and not whether that risk is introduced by genetic or environmental causes that should make a difference in insurance rates. That is, the morally relevant consideration is not where the causal inputs came from but rather what their known effects are and how information about those inputs allows one to anticipate differential losses. In a fair game of chance, the price of the bet should reflect the known odds. That is why the case we mentioned earlier of insurers raising rates for people who tested positive for the sickle cell gene was unjust genetic discrimination, because the premium increase was imposed without evidence that carrier risks were indeed higher. It is fair to charge more when risks are higher, but it should not make a difference that the risk is genetic rather than environmental.

THE JUSTICE OF MEDICAL INSURANCE These causal considerations may now be brought to bear on some of our questions involving the justice of pre-existing condition exclusion clauses and medical insurance. One implication of the previous argument is that insurers may charge proportionately higher premiums for greater risks, and we know cases in which the increased risks may be substantial. Indeed, if we maintain a complete parity between genetic and environmental factors, we should even allow insurers to deny insurance to people with a “disease gene,” not by virtue of a pre-existing condition exclusion clause, but simply because the risks and costs (which can be extremely high for diseases like phenylketonuria, Parkinson’s, or cystic fibrosis) make the policy a bad bet for the insurers. Previously these costs were spread out over everyone who was insured since there was no way to subdivide the assumed risk group. But with the advent of genetic testing, the new information allows insurers to refine reference classes. Such groups will often be too small to make the premiums affordable to individuals when the costs are divided. With over a thousand genetic tests already

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available and more being developed every day, this will lead to a situation in which a large proportion of the population simply cannot afford medical insurance. As developing genetic technology pushes us inexorably in this direction, new considerations of justice arise. Would it be just to maintain the traditional system of medical insurance in which only the genetically lucky can afford health insurance? Up to this point we have been considering the question of justice within the current institutional structure of health care. But looking into the kinds of changes brought about by genetic information, we must consider the possibility that the provision of health insurance as traditionally done is simply no longer ethically (or economically) viable. Putting this another way, it may no longer be proper to judge the fairness of insurance on analogy with placing bets in a gambling game as we did before, taking for granted the current rules of the game. Justice may require that we change the rules. An argument in favor of this view may be made on Rawlsian grounds. Briefly, Rawls tells us to think of justice as fairness, and proposes a framework—the Original Position (Rawls 1971, Ch. III)—for evaluating the justice of social institutions. What institutional and legal structures would we, as free, equal, and rational people, agree to set up and be governed by if we had to make that choice from under a “veil of ignorance”? That is, what structures would it be rational for us to agree to if we did not know in advance which personal characteristics, values, position in society, and so on we would have in that society? Naturally, under the veil of ignorance we would be ignorant of the specifics of our genome. We would not know whether we would have genes that confer a high degree of disease risk. Nor would we know whether we would be wealthy enough to afford the high insurance premiums concomitant with high risk under the current system of medical insurance. Given that adequate health is a prerequisite for the pursuit and enjoyment of what one values, health care is a basic good, and it would be in our rational interest to see to it that it was guaranteed to all for such conditions. When we consider the justice of health insurance institutions and rules in light of these considerations, we see an immediate reason to question the earlier analogy to the game of chance. We cannot chose not to be born and we cannot chose whether or not to roll the genetic dice. Though the current system looked fair initially, it

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is unfair from a more global perspective. This conclusion connects with another Rawlsian insight, namely that issues of justice involve compensating for inequalities of life’s “natural lottery” (Rawls 1971, p. 74). We would want to be sure that our access to health care was protected, particularly if we should be born with a predisposition for some disease. This is not to say that we would necessarily decide under the veil of ignorance in favor of universal health care for all disabilities. However, for genetic risks we have inherited, it would be in our enlightened self-interest to require an institutional structure that would guarantee coverage.5

T O WA R D S R E S O LV I N G T H E C U R R E N T C O N T R OV E R S Y In the original version of this chapter I went on to briefly discuss ways in which policies and regulations for health insurance might be modified in light of these causal and ethical considerations, and closed with the following recommendations: In the end, personal, professional and public ethical perspectives have to work together. Scientists and heath care professionals must be aware of both their research duties and their clinical duties. As they push the technology forward they must be careful to explain the utility of genetic tests without the loaded “disease gene” terminology, and be sure that patients understand the nature and implications of the information, so they can assess the costs and benefits. Furthermore, a policy must be developed to change (somehow) the rules of the medical insurance game through either legislative or judicial action so that genetic tests are not used unjustly. Minimally, we can conclude here that the practice of denying health insurance to people with a genetic pre-disposition for disease on the grounds that these fall under [preexisting condition exclusion clauses] is improper. Justice requires that the current system of health insurance be modified in light of these changing conditions. (Pennock 2006, 421–422)

Less than 3 years later, an unusual political meeting of minds resulted in Congress passing (with but a single dissenting vote) and President Bush signing the Genetic Information Nondiscrimination Act (GINA). GINA prohibits discrimination by health insurers based upon an individual’s genetic information (GINA 2008).

Although it may still be too soon to call GINA an unqualified success, it appears that the ban on pre-existing condition exclusion clauses based on genetic information has been implemented without any notable problems; it is now simply a just constraint that affects all health insurers equally. Do the causal and ethical lessons we have learned regarding health insurance for preexisting genetic conditions shed any light on the current ongoing controversy about pre-existing health conditions generally? At first glance, much of our analysis seems to argue against the policy. The pre-existing conditions included in the Affordable Care Act involve all sorts of straightforward disease conditions (ranging from AIDS and Alzheimer’s disease to kidney disease and leukemia), rather than the causal conditions for disease that we focused upon. Indeed, the Act is expressly meant to cover a pre-existing condition even when a person already expresses the disease. That is a circumstance I had argued was unjust; given the historical model that insurance is like a game of chance, it is unfair for someone to enter the game and place his bet after the die had been rolled. Put in more Kantian terms, one might say that it undermines the premises of the system and makes it unworkable if someone can wait to buy a policy until after he contracts a disease. However, my main purpose was to show how the changing conditions brought about by new genetic information were already undermining the premises of the insurance game—injustice resulted whether insurers could use the “inside information” of a genetic test against individuals or vice versa—and that the then-current system had to change. GINA changed the rules of the game with regard to genetic information in the right direction, and the Affordable Care Act changes the game in an even more significant way. One way in which the Act changes the health insurance game, besides the already mentioned general ban on pre-existing condition exclusion clauses, is inclusion of the “individual mandate” requiring everyone to purchase health insurance. Ironically, this current main target of opponents of the Act solves the problem that I had pointed out where individuals could use genetic information but insurers could not. That situation would have allowed people to purchase coverage if they knew their genetic risk was high but to skip coverage otherwise, thus taking advantage of the insurance game. Requiring every individual to carry health insurance resolves that unfair asymmetry.

Are Pre-existing Condition Exclusion Clauses Just? To rule the individual mandate unconstitutional and to sever it from the Act would again produce an asymmetry that would be to the disadvantage of insurers (assuming that the ban on pre-existing condition exclusion clauses were retained), so it is likely that opponents are really aiming to overturn the law more broadly, not just this one point. The second way that the Act changes the health insurance game is equally basic and is almost certainly the main reason for the Republican opposition to the Act, namely the institutionalization of the idea that health care should be universal. The Rawlsian argument given above showed why it was just to require universal health care for diseases caused by genetic factors, but the Act extends this to all diseases and makes it the law. As President Obama articulated it in his signing speech, the “core principle” behind the bill is that “everybody should have some basic security when it comes to their health care” (Obama 2010). Such a principle provides a general ethical framework but leaves many issues still to be resolved. The guarantee of “basic security,” for instance, may be seen as a variation of Tom Beauchamp and James Childress’ reasoned proposal for a two-tiered health care system that would provide a public guarantee of a “decent minimum” of health care and allow for optional private insurance that people can purchase for supplemental coverage (Beauchamp & Childress 1994, pp. 348–356). Opponents of the Affordable Care Act charged that it was “Socialist,” but in fact the system of insurance exchanges that it sets up is an attempt to forge a political compromise between public and private insurance, and this is not the place to delve into such matters. The pressing ethical question that remains open by Obama’s core principle is the same that was left open regarding Beauchamp and Childress’ concept of a “decent minimum,” namely what “basic security” comes to with regard to health care. Ethicists now need to focus attention on whether there are principled ways to sort out what conditions and what level of health care should fall under this rubric and what should be properly left to individuals on their own. The CaSE model of the causal relation and causal equivalence of genetic and environmental factors that was discussed above provides at least a few steps forward in thinking about such questions. Both genetic and environmental causes affect one’s chance of contracting an illness and, epistemically and ontically, there is no difference between the respective probabilities. Thus, just as

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the Rawlsian argument given above showed why pre-existing condition exclusion clauses for genetic pre-existing conditions are unjust, other things being equal, it should give the same conclusion for many environmental conditions. A morally relevant asymmetry remains in other cases. While any pre-existing genetic factors an individual may have are the result of the genetic lottery, many environmental factors are within one’s control. As we noted, whether or not a factor is under our control is relevant to our ethical deliberations in the Original Position; some environmental conditions that cause illness may be beyond our individual control just as genetic conditions are, and we would agree to jointly guarantee health care in such cases. We might reasonably find it fair (and thus just), however, to limit care for health conditions that persons may bring upon themselves by their own risky choices. Get lung disease because of air pollution and be covered as a part of basic health care security, but choose to smoke and perhaps you ought to buy a supplemental private policy or be ready to pay for care yourself. (Such judgments under the veil of ignorance would also reasonably change as a function of expected available resources; when societal resources are plentiful, we might agree to provide a higher level of care, but when they are limited, we might be less tolerant of imprudent, foolish, or negligent choices and guarantee less.) Finally, it behooves us to look into the future just a bit further and recognize that, as science progresses, genetic conditions will also come under greater and greater individual control, so even those original ethical assessments will become more complicated. Where does this leave us with regard to the current controversy? With some lessons learned from the previous case of pre-existing condition exclusion clauses for genetic conditions and the precedent set by GINA, we may proceed with a degree of optimism. Although chance is involved in substantive ways in these issues, we should not and need not proceed under the assumption that health care must be evaluated under the ethical framework of joining a game of craps. It remains to be seen whether the Affordable Care Act is a politically viable solution to the ethical complexities of providing just health care, but at least it is on the right track. In working to fundamentally change the rules that govern health insurance, it is building on a rational desire and reasonable conclusion of justice that we should not have to gamble on health care.

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1. In fact, we know that the sickle cell gene has a heterozygote advantage in conferring resistance to malaria, so in some circumstances having the gene actually lessens one’s overall risk of ill health. 2. Of course, we are here speaking not of causes as logically necessary and sufficient, but as physically or productively so, since we are still dealing with ontic causation. 3. As a first approximation we might think of S as a ceteris paribus clause—C causes E, other things being equal. However, S need not include all other things, but just a restricted subset. Specifically it should include those factors that make a difference to, and thus can be taken to be significant in, the production of the effect. The fact that the car in the accident had brake linings that were worn made a difference. The fact that the driver had on a vest with a worn lining did not. The former factor gets included in the specification of S. The latter is irrelevant and is omitted. Situation S should thus include all and only those factors that are causally relevant (that is, actually make a difference) for the production of the given effect E, relative to the factor of interest, C. 4. Other philosophers have mentioned that there may be pragmatic reasons for picking out a gene in some contexts as “the” cause of a disease. For example, in his useful article “Genetic Causation,” Carl Cranor writes, “The fact that a complex set of conditions is sufficient to produce an event does not detract from drawing attention to one of the contingencies as ‘a’ or ‘the’ cause for certain purposes. What matters is the context and the purpose and that we do not lose sight of the complexity of the processes involved” (Cranor 1994, p. 131). What the CaSE model shows is that pragmatic partitioning of causal factors is a general feature of the causal relation that must be recognized for all causal claims, so its application to questions having to do with “genetic diseases” is to be expected. 5. Interestingly, Alexander Lowden, who had argued for the insurance companies perspective, appears to accept this idea. His concluding argument against legislation that would have limited insurance company’s use of test information is that such legislation “will add to the cost of a product that should be available to all” (Lowden 1994, p. 1510).

References Beauchamp, T. L., & J.F. Childress. (1994). Principles of Biomedical Ethics (4th ed.). Oxford: Oxford University Press. Billings, P.R. (1993). Genetic discrimination. Healthcare Forum Journal 36(5):35–37. Cranor, C. F. (Ed.). (1994). Are Genes Us? The Social Consequences of the New Genetics. New Brunswick, NJ: Rutgers University Press.

Fackelmann, K.A. (1993). Gutsy genetics: hunting down a gene for a children’s digestive disorder. Science News 174–175. Fox News (Nov. 3, 2010). Republicans capture house in historic wave: claim “mandate” to shrink government. http://www.foxnews.com/politics/2010/11/03/ republicans-capture-house-historic-wave-make-gainssenate/ Fox News (April 9, 2011). Budget deal guarantees Senate vote on repeal of Obama health care law. http:// www.foxnews.com/politics/2011/04/09/budget-dealguarantees-senate-vote-repeal-obama-health-carelaw/ GINA (2008). Genetic Information Nondiscrimination Act (GINA) of 2008. http://www.genome.gov/2451 9851. Gostin, L. (1994). Genetic discrimination: the use of genetically based diagnostic and prognostic tests by employers and insurers. In R.F. Weir, S.C. Lawrence, & E. Fales (Eds.), Genes and Human Self-Knowledge: Historical and Philosophical Reflections on Modern Genetics. Iowa City : University of Iowa Press. Hacking, I. (1990). The Taming of Chance. Cambridge: Cambridge University Press. Hanson, N.R. (1958). Patterns of Discovery. Cambridge: Cambridge University Press. HealthCare.Gov. (2010). At Risk: Pre-Existing Conditions Could Affect 1 in 2 Americans: 129 Million People Could Be Denied Affordable Coverage Without Health Reform. http://www.healthcare. gov/center/reports/preexisting.html HFMA (Dec. 15, 2010). Legal Challenges to the Affordable Care Act. http://www.hfma.org/Templates/ InteriorMaster.aspx?id=24263 Hilts, P.J. (Nov. 5, 1993). Genetic testing can lead to discrimination, science panel warns. Austin American-Statesman, p. A16. Lowden, J.A. (1994). Genetic testing. Science 265(9 September), 1509–1510. Obama, B. (March 23, 2010). Obama’s speech at healthcare bill signing. United Press International. http:// www.upi.com/Top_News/US/2010/03/23/Obamasspeech-at-healthcare-bill-signing/UPI-101412693 67118/ Pear, R. (March 29, 2010). Coverage now for sick children? Check fine print. New York Times. http://www. nytimes.com/2010/03/29/health/policy/29health. html?_r=1. Pennisi, E. (1996). Gene linked to commonest cancer. Science 272(5268):1583–1584. Pennock, R.T. (2006). Pre-existing conditions: genetic testing, causation and the justice of medical insurance. In R. Rhodes, L. Francis, & A. Silvers (eds.). Blackwell Guide to Medical Ethics, Chapter 23, pp. 407–424.

Are Pre-existing Condition Exclusion Clauses Just? Rawls, J. (1971). A Theory of Justice. Cambridge, MA: The Belknap Press of Harvard University Press. Sanders, E. (1993). With gene testing comes fear of insurance discrimination, Austin AmericanStatesman. May 23: A14.

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Stolberg, S.G., & R. Pear. (March 23, 2010). Obama Signs Health Care Overhaul Bill, With a Flourish. New York Times. http://www.nytimes.com/2010/ 03/24/health/policy/24health.html.

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33 Oral and Mental Health Services D AV I D O Z A R A N D J A M E S S A B I N

INTRODUCTION Access to oral and mental health care services has been selectively disadvantaged in the U.S. health system. Yet despite the profound disagreements about how to rectify the situation, there is arguably a strong consensus in our society that health care that responds to important human needs has special importance. A distribution system that leaves a significant portion of our society without access to dental and mental health care is, therefore, seriously defective. The chapter will begin by describing the ways in which access to oral and mental health care falls short of patients’ needs. It will then argue that some aspects of oral and mental health care are as deserving of the special importance accorded to much of medical/surgical care in our society. It will then identify patterns that arguably explain the selective disadvantaging of access to oral and mental health care so that the injustices associated with the disparate treatment may be rectified. Discussing our society’s system of access to health care resources requires an examination of three powerful and mutually reinforcing systems that are principally responsible for the shape of various populations’ access to the several kinds of health care. One of these systems is the complex set of social institutions (economic, legal, etc.) that determine which groups and individuals in our society have what measure of access to various kinds of health care resources. A second system involves the expert judgments made by health care professionals as they diagnose patients’ adverse conditions, make recommendations about appropriate interventions to correct them, and determine whether the interventions have been successful. This latter group may not be seen as distributors of resources, but they are important because they provide the expert judgments for the allocation of health care resources. The third set are the values by which people as patients

(or as the parents or proxies of patients) determine under what circumstances they will actually use their resources to access health care and the extent to which they will be guided by expert judgments. In American society, these determinations are often treated as if they were simply individual decisions controlled by highly personal values. But it is naïve to think of the values involved as independent of or disconnected from broader social systems. Furthermore, once the existence of social patterns of evaluation regarding health care is recognized, it becomes clear that, particularly in a democratic market-driven society, social attitudes about which values and priorities are to guide health judgments are dependent on these same broad currents that set social worth.

I N A D E Q UAT E A C C E S S T O O R A L H E A LT H C A R E In 2000 the U.S. Surgeon General issued a comprehensive report on oral health and oral health care in the United States, Oral Health in America: A Report of the Surgeon General. The report documents dramatic improvements in our society’s oral health during the second half of the 20th century, but it also identifies “profound and consequential disparities in the oral health of our citizens” (U.S. Department of Health and Human Services, 2000a, p. vii). In previous generations, it was taken for granted that people who survived into old age would have lost most or all of their teeth, replacing them with dentures or not at all. But thanks to fluoridation of the water supply in most of the country, plus more effective school-based and public health education programs for oral hygiene and self-care, and increasingly effective dental care grounded in increasingly sophisticated research into the diseases, malfunctions, and injuries of the teeth and the whole craniofacial complex,

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“Most middle-aged and younger Americans [can now] expect to retain their natural teeth over their lifetime and do not expect to have any serious oral health problems” (U.S. Department of Health and Human Services, 2000a, p. 1). The Surgeon General’s Report also documents important shortfalls in oral health and profound inequities in access to oral health care in our society. It notes that Many among us still experience needless pain and suffering, complications that devastate overall health and well-being, and financial and social costs that diminish the quality of life and burden American society. What amounts to “a silent epidemic” of oral diseases is affecting our most vulnerable citizens—poor children, the elderly, and many members of racial and ethnic minority groups. (U.S. Department of Health and Human Services, 2000a, p. 1)

The striking evidence of inadequacy and inequity identified in this report and in its companion GAO Report (U.S. Government Accounting Office, 2000) prompted the Surgeon General to issue a “Call to Action” about oral health in the United States in 2003 (U.S. Department of Health and Human Services, 2003), and the U.S. Department of Health and Human Services to incorporate an array of measures of people’s oral health and their access to oral health care in its decade-long program, Healthy People 2010 (U.S. Department of Health and Human Services, 2000b). Has oral health care in our society improved significantly since 2000 in response to these reports? The short answer to this question is “No.” While several measures of oral health have shown some improvement since 2000, none has reached the target level identified in Healthy People 2010. In point of fact, the baseline data for the 2000 reports, which were the most recent available at the time, were typically from the mid-1990s, and most of the data available in 2010 for measuring improvement since then were gathered in 2004 (Centers for Disease Control & Prevention, 2010). More up-to-date data are intended to be included in the U.S. Department of Health and Human Service’s follow-up program, Healthy People 2020, but they are not available as of this writing (July 2010). The paucity of data about oral health and access to oral health care in the United States and the time lag in its availability are further symptoms of the lower priority assigned to oral health in our society.

As examples of these shortfalls, the percentages of both young children (2 to 4 years old) and children (6 to 8 years old) experiencing dental caries and untreated tooth decay, the two most important measures of oral health in children, have increased. And while the same measures of oral health have improved somewhat for adolescents (15 years old) and the percentage of the total population having an annual dental visit has increased slightly, from 44% to 45%, the percentage of adults (18 years and over) having an annual dental visit has gone down from 51% to 46%, and the percentage of adults with disabilities having an annual dental visit has gone down from 38% to 35% (Centers for Disease Control & Prevention, 2010). Even without the decline, more than half of our population is not receiving oral health care except, if at all, in dental emergency situations. Yet “[w]ith few exceptions, maintenance of oral health through a lifetime requires timely receipt of advice for self-care, preventive therapies, early detection and treatment of problems, and restoration of function” (U.S. Department of Health and Human Services, 2000a, p. 79). In addition, “[t]hose who suffer the worst oral health are found among the poor of all ages, with poor children and the poor older Americans the most vulnerable” (U.S. Department of Health and Human Services, 2000a, p. vii). While the percentage of low-income youth (2 to 19 years old) receiving annual preventive dental services increased from 25% in 1996 to 31% in 2004, two thirds of low-income youth were still without these services (Centers for Disease Control & Prevention, 2010). Similarly, the recent addition of dental sealant technology has greatly improved dentists’ ability to prevent more serious carious infections (“cavities”), especially for children. Thus, “the percentage of children ages 6–19 with dental sealants has been increasing across all ages, races, and incomes. However, the most progress is seen in the groups least in need of care—those in the highest-income groups and those with the lowest disease burden” (Gehshan, 2009, p. 12). There have been some selective advances in access to oral health care since the 2000 reports (based in turn on data from the 1990s). But access to oral health services is still significantly below comparable utilization measures for medical/surgical health care, and there are close correlations between measures of access to oral health care and measures of oral health. With a few exceptions, the disparities in access reported by the Surgeon General in 2000 continue to directly

Oral and Mental Health Services affect oral health, especially for poor children, poor elderly, and persons with disabilities. For example, a 2002 review of access data reports that “children disadvantaged by poverty and minority status had greater likelihood of having cavities and . . . fewer overall and preventive dental visits than their peers.” Instead they “used dental services more often [than their peers] for relief of pain from previously untreated oral conditions.” Since “[t]he percentage of US children who are both minority and low income has increased [since 2000 and] . . . caries rates and poor access to dental services have remained correlated with minority and low-income status over time, disparities in oral health and dental care are expected to continue or worsen” (Edelstein & Chinn, 2009, p. 415). The one bit of good news is that the U.S. Congress’s creation of the State Children’s Health Insurance Program (SCHIP) in 1997 increased the percentage of children from low-income families with public dental coverage from 18% to 41%, and increased annual dental visits by these children from 28% in 1996 to 34% in 2004. (This program, renamed CHIP when reauthorized through 2013 by President Obama in 2009, was extended through 2015 by the Patient Protection and Affordable Care Act (“Health Reform”) in March 2010, after which its coverage for children would become incorporated into Medicaid or be purchased through the projected new “health insurance exchange.”) Whereas 58% of children whose families had private dental insurance had a dental visit in 2004, the figures were only 34% for those with public assistance for oral health care such as CHIP and 28% for those with no coverage (U.S. Department of Health and Human Services, 2005). Moreover, “cost appears to be the overwhelming reason [for this difference], as 61% of parents reported either that they did not obtain care because they did not have insurance or did not obtain care because dental care ‘costs too much’” (Edelstein & Chinn, 2009, p. 418). This finding is strongly supported by research directly comparing insured and uninsured children’s access to health services, including oral health services, in Oregon 6 years after the 1994 establishment of the Oregon Health Plan (Mitchell et al., 2002). Other than the CHIP program for children, however, there is very little publicly funded oral health coverage. “Although over 14 percent of children under 18 have no form of private or public medical insurance, more than twice that

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many, 23 million children, have no dental insurance. Over 15% of persons 18 and older have no form of medical insurance, but 3 times as many, over 85 million persons, have no form of dental insurance” (U.S. Department of Health and Human Services, 2000a, pp. 229–231). The situation for senior citizens is arguably even worse. Since private dental insurance is almost exclusively employment-based, most seniors who have had dental insurance lose it when they retire. For example, in the year 2000, about 77% of dental care for all older adults was paid out of pocket, and less than 1% was covered by Medicaid (Helgeson, 2009, p. 13). According to the Surgeon General’s report, approximately 50% of dental health care is paid for out of pocket, whereas only about 18% of medical/ surgical health care comes from patients’ personal resources. In other words, even though employment-based dental insurance has grown, a huge disparity remains between how oral as compared with medical/surgical health care is paid for. Furthermore, while community health centers, hospitals, and professional schools provide some services, there is almost no safety net for dental care. “At best, the current dental safety net system cares for [only] about 7 or 8 million patients annually” of the 82 million people who are dentally underserved (Bailit et al., 2006, p. 14). The social effects of this shortfall in oral health care are significant. For example, “Oral and craniofacial diseases and conditions contribute to compromised ability to bite, chew and swallow foods; limitations in food selection; and poor nutrition . . . Oral-facial pain, as a symptom of untreated dental and oral problems and as a condition in and of itself, is a major source of diminished quality of life. It is associated with sleep deprivation, depression, and multiple adverse psychological outcomes. . . Self-reported impacts of oral conditions on social function [also] include limitations in verbal and non-verbal communication, social interaction, and intimacy” (U.S. Department of Health and Human Services, 2000a, p. 147).1 In addition, “Oral and craniofacial diseases and their treatment place a burden on society in the form of . . . a sizeable number of days lost from work or school every year for the population as a whole” (U.S. Department of Health and Human Services, 2000a, p. 147). According to the National Health Interview Survey, “there were 3.7 days of restricted activity per 100 employed persons 18 years and older reported in the United States in

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1996 associated with an acute dental condition (U.S. Department of Health and Human Services, 2000a, p. 143).2 In sum, there are serious problems with oral health care in American society, and these correlate directly with inadequacies and inequities in the institutions and systems by which health care resources are allocated, and these problems result in turn in significant costs of many sorts for American society.

I N A D E Q UAT E A C C E S S T O M E N TA L H E A LT H C A R E For many years, mental health care in the United States has suffered from longstanding discriminatory constraints driven by stigmatizing views of mental illness, a devaluing of mental health care in comparison with medical/surgical care, and fear that robust access to mental health care would generate intolerable costs. In this vein, since the advent of health insurance, access to mental health care via insurance has been limited in ways that access to medical and surgical care was not. Insurance typically included greater cost-sharing (through higher copayments and co-insurance) and quantitative limits on mental health services, or else simply omitted coverage for these conditions altogether. In the past decade, however, four factors— vigorous advocacy, better understanding of mental disorders, more effective treatments, and recognition that managed-care techniques could contain costs—have fostered some change in this pattern. But despite these promising trends, discriminatory constraints and inequities persist. If there were reasons to consider mental health care as less important to health than general medical/surgical care, there would be justification for giving mental health lower priority. And if mental health treatment was uniquely less effective than general medical/surgical treatment, that would also provide justification for imposing distinctive limits. But neither of these rationales for disadvantaging mental health holds water. Although advocates had been lobbying for improved access to mental health services for decades, the Surgeon General’s 1999 report on mental health, coming as it did from outside the mental health sector, provided a call to arms (U.S. Department of Health and Human Services, 1999). The report highlighted research on the global burden of disease showing that in the developed world, mental health and substance abuse conditions create more disability than any

other category of illness. A subsequent study of disease burden in the U.S. using disability-adjusted life-years confirmed the same finding (McKenna et al., 2005). Depression has been found to limit well-being and function as much or more than arthritis, diabetes, gastrointestinal illness, and several other chronic conditions; only heart disease created comparable impairment (Wells et al., 1989). And three large population surveys—the Epidemiologic Catchment Area Study (1980s), the National Comorbidity Survey (1990–1992), and the National Comorbidity Survey Replication (2001–2003)—confirmed the wide prevalence of mental disorders. All three found that approximately 30% of the adult population had experienced a mental health disorder in the prior 12 months (Kessler et al., 2005). Although only one third of those with a current mental disorder in the 2001–2003 survey received treatment, that was actually an improvement from the one fifth in 1990–1992. While there is controversy about whether the presence of a disorder necessarily indicates a need for services (Mechanic, 2003), most observers agree that treatment is underused and patients’ needs go untreated as a consequence. For example, primary care physicians report that they have significantly more difficulty finding mental health services for their patients than for any other area of care. Two thirds reported that they were frequently unable to obtain outpatient services for patients they wanted to refer—twice the rate of difficulty than for all other kinds of specialists. Lack of insurance or inadequate insurance was the most common reason cited for the difficulty (Cunningham, 2009). The major impediment to access is the cost of mental health care, arising from lack of insurance coverage or insurance plans with much more substantial cost-sharing for mental health services than for medical/surgical services. But cost is not the only barrier to access. Epidemiologic research shows that although the majority of people with current mental disorders go untreated, over time most will ultimately seek treatment (Wang et al., 2005). The delay among those who ultimately enter treatment is substantial, averaging 6 to 8 years for mood disorders and 9 to 23 years for anxiety conditions! And among patients who initiate treatment, approximately one fifth drop out after one or two visits (Olfson et al., 2009). For some potential patients, especially in rural areas, it is simply difficult to find treatment, because mental health professionals gravitate towards

Oral and Mental Health Services urban areas and the two coasts. Although access is inadequate for all but the wealthy and very well insured, minorities and the poor are most severely affected. In years past the U.S. public regarded people with severe mental illness as hopelessly ill “lunatics,” and sequestered them in isolated asylums. The National Alliance on Mental Illness (NAMI), founded in 1979 by families of patients with severe illness, has emerged as a powerful force for education about treatment, support for patients and families, advocacy for improved therapies and better access to care, and combating stigma. NAMI’s “StigmaBusters” program monitors the media for negative images of the mentally ill. In 2000 it played a major role in persuading ABC to cancel “Wonderland,” a program that in its first episode featured a mentally ill person who shot six people and stabbed a pregnant psychiatrist (Corrigan & Gelb, 2006). Whereas those with psychotic illnesses have been seen variably as weird, hopeless, and dangerous, those with non-psychotic illness have been seen as “worried well” or weaklings. To combat this component of stigma, the National Institute of Mental Health launched the “Real Men/Real Depression” campaign. The Surgeon General explained it this way: “For generations men have been told that they have to act tough. Today we’re saying to men, it’s okay to talk to someone about what you’re thinking, or how you’re feeling, or if you’re hurting. We are attacking the stigma that tough guys can’t seek help. They can and they should” (NAMI, 2003). Passage of the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act in 2008 was the culmination of decades of advocacy. Both senators had family experience with mental illness: one of Senator Domenici’s eight children has schizophrenia, and the late Senator Wellstone’s brother also had a severe psychiatric ailment. The law requires employer health plans with 50 or more employees that provide mental health and substance abuse benefits to do so at the same level as medical and surgical benefits. Another piece of legislation—the Medicare Improvements for Patients and Providers Act— will create (in 2014) parity for outpatient mental health treatment by reducing the required copayment from 50% to the 20% level required for medical and surgical treatment. As of this writing, access to care for people with mental health conditions falls somewhere between oral health access, which is more limited,

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and access to medical and surgical care, which is far more robust.

T H E I M P O R TA N C E O F B A S I C O R A L A N D M E N TA L H E A LT H C A R E A premise of this chapter is that our society recognizes that health care has special moral importance even though we leave a significant portion of our people without adequate access. One line of argument that supports this view is formulated in terms of the special importance of basic health care. This concept depends, in turn, on the concept of basic needs, where the word “basic” has a very specific meaning.3 A need is basic when it is the sort of thing without which no one can reasonably expect to achieve his or her goals, no matter what those goals are. Obviously, for almost all goals, there are preconditions for their achievement, things we “need” to achieve these goals. But the things that are necessary preconditions for the achievement of every goal constitute a limited set of things. These are basic needs. Because basic needs are necessary for any human to achieve any goal, we see them as especially important. This special importance establishes a priority for providing access to these things over all the other things that a society might allocate. Hence basic needs ought to receive the highest priority in our society’s allocation system.4 Oral Health Needs Some dental conditions clearly involve debilitating oral pain and/or prevent or severely limit normal nutrition and speech. Oral health care aimed at correcting these conditions restores essential components of a patient’s capacity for normal human functioning and is, therefore, reasonably considered a basic need. But other deficits of the craniofacial complex are painful and/or interfere with nutrition and speech to a lesser degree. Should oral health needs be considered basic needs only when the deficits are severe enough to make normal functioning simply impossible? This is certainly not how the matter is viewed in regard to medical/surgical needs in our society. Furthermore, as with medical/surgical health care, intervening sooner, when the pain or impairment of function is less, allows experts to control it earlier so as to forestall worse complications and deficits, and thus to use health care resources more efficiently. This is why early intervention is ordinarily included within the

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category of necessary, non-optional treatment in medical/surgical health care. From this point of view, not only emergency treatment of severe pain and severely debilitating conditions, but treatment of conditions that are less far advanced but progressive in analogous ways should also be included in the category of oral health care that is considered a basic need. Similarly, as in medical/ surgical health care, many diagnostic procedures (e.g., oral diagnosis and radiography) are necessary predecessors of oral treatments, and the same is true of patient education for self-care and aftercare, without which appropriate treatments would not be effective. Moreover, since routine dental checkups and prophylaxis are by far the most efficient way to ensure that patients’ oral function is not severely compromised, all of these should be classified, as comparable aspects of primary medical/surgical care are, as basic health care needs. This leads to the conclusion that a health care distribution system like ours, in which access to oral health care is significantly inadequate, is clearly ethically indefensible.

Mental Health Needs As with oral health needs, the question of whether there are mental health needs that should count as basic needs does not allow for a simple answer. Mental illness involving psychosis has long been recognized as a profound disruption of human function, whether seen as the product of inherent defectiveness, malevolent hexes, demonic possession, or the malfunction of a crucial human organ, the brain. Moreover, until the middle of the 20th century, psychosis was regarded as a hopeless condition because health professionals had little to offer by way of treatment. Modern society has been gradually bringing serious mental illness into the framework of mainstream health care, both in understanding of its causes and in seeking to limit its profound impact on people’s lives: Mental illnesses are medical conditions that disrupt a person’s thinking, feeling, mood, ability to relate to others and daily functioning. Just as diabetes is a disorder of the pancreas, mental illnesses are medical conditions that often result in a diminished capacity for coping with the ordinary demands of life. Serious mental illnesses include major depression, schizophrenia, bipolar disorder, obsessive-compulsive disorder (OCD), panic disorder, post-traumatic stress disorder (PTSD),

and borderline personality disorder. The good news about mental illness is that recovery is possible. (National Alliance on Mental Illness, 2010)

As our society comes to see these serious mental disorders as caused by the dysfunction of an organ—the brain—these conditions begin to take on the “legitimacy” of diabetes because, like diabetes and many other medical/surgical needs, they impede achievement of all goals. These conditions create impairments at least as extensive as those created by medical/surgical conditions, about which there is no disagreement regarding insurance coverage (Wells et al., 1989; Druss et al., 2009). Widespread insurance coverage for psychiatric medications and passage of the Mental Health Parity and Addiction Equity Act of 2008 are signs of growing societal acceptance of this conclusion. Accordingly, access to effective treatment for serious mental disorders must be seen as the appropriate social response to basic needs. Bringing other adverse mental health conditions under the medical model, especially if they are not primarily addressed with psychiatric medications, has been more complex. Access to nonpharmacological mental health treatments such as psychotherapy continues to be contested and problematic. Society’s devaluing of psychotherapy and the consequential limitation of insurance coverage for it has been driven in part by underlying views of human nature and the corresponding social views of various psychiatric interventions. The idea that children should be taught fortitude, resilience, and how to keep a stiff upper lip is deeply embedded in U.S. culture. The view that self-management and self-control are fundamental human skills and are sufficient for dealing with life’s troubles is widespread. Woody Allen’s portrayals of hapless losers who whine endlessly to their psychotherapists about disappointment in love and general life failure express the common view of people in need of psychotherapy as a source of comedy. At the same time, there is a significant measure of skepticism as to whether psychotherapy is based on genuine expertise, or should be seen as a high-cost form of “rent-a-friend.” Thus Charles Schultz poked fun at psychotherapy in similar fashion through his character Lucy, who sells commonsense advice for five cents at her psychiatric booth. In addition, there have been some epidemiologic surveys suggesting that almost half of those who obtain mental health treatment do not meet diagnostic criteria for mental health disorders.

Oral and Mental Health Services Recent research on the concern that mental health treatment is grossly overused, however, suggests that this view is a prejudice, not an empirical truth. Druss and colleagues studied 5,692 participants in the National Comorbidity Survey Replication who had received treatment during the previous 12 months (Druss et al., 2007). Consistent with the previous research, 40% of the sample did not initially meet criteria for a current mental health disorder, but more detailed study of the 40% gave a different picture. Half of the group had a previously diagnosed mental disorder, and another quarter had experienced a major stressor, such as death in the family, rape, or divorce. Those with no previous mental health diagnosis and no major stressor accounted for only 2% of the mental health visits, most of which were outside of the health system in the human service or alternative medicine sectors. In other words, as in the case of oral health care, while there is clearly a continuum from more to less serious mental health conditions, it is clear that a substantial proportion of mental health care needs should be regarded as basic, as profoundly inhibiting patients’ ability to achieve their goals.

T H E S O C I A L D E VA L U I N G OF ORAL AND M E N TA L H E A LT H So far we have focused on the allocation institutions that shape access to health care in our society and the priorities that are embedded in them, and we have argued that these priorities are in direct ethical conflict with the fact that certain kinds of oral and mental health care respond to basic human needs as surely as medical/surgical health care do. But a society like ours determines which allocation institutions to put in place and what priorities are embedded in them on the basis of broad systems of social valuing. In this section we aim to identify some of the systems of social valuing that explain this selective disadvantaging of access to oral and mental health care. One sign of this selective disadvantaging is the fact that many people refrain from seeking oral and mental health care. If oral health care and mental health care were as highly valued socially as medical/surgical care, there would be broad, powerful social support for modifying the allocation systems accordingly. Oral Health Care One important contributor to this pattern is the fact that oral health care is not generally associated

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with extending life and avoiding death, whereas extending life and avoiding death are seen as primary goals giving value to medical/surgical care. Holding to this standard does not mean that our society is dispassionate about the pain, dysfunction, and interruptions with daily life that untreated oral deficits produce. In fact, when Oregon sought some measure of public input on health care priorities when preparing to launch its 1994 health plan, “urgent and emergent” dental services (defined as treatment “only for symptomatic dental pain, infection, bleeding or swelling”) ranked #59 out of 678 listed health conditions, and annual “dental preventive services: cleaning and fluoride [treatments]” ranked #104. “Basic restorative” dental services for dental caries [i.e., cavities] and fractured teeth, however, ranked well down the list at #357, tooth loss ranked #473, and severe tooth decay, stabilization of periodontal health, complex restorative work, and removable prosthodontics ranked #498 out of 678 listed services (Oregon Health Plan, 2010). Oral health is clearly dissociated from our society’s energetic efforts to extend life and avoid death, and this fact—strongly reinforced by the fact that ours is largely a death-denying/deathavoiding society, especially in our public culture— translates into a low priority for professional interventions to prevent or rectify oral deficits; this pattern is supported by the widespread but mistaken perception that oral health is simply about teeth. A major theme of the Surgeon General’s report is that “oral health means much more than healthy teeth [bold in the original].” Oral health involves the whole craniofacial complex and its intimate connections with the health of other bodily processes (U.S. Department of Health and Human Services, 2000a, p. 1). It is further reinforced by the fact that medical/surgical care in our society revolves around tertiary hospital care, which also is seen, especially in our public culture and our media, as primarily focused on extending life in the face of illness that threatens death. Oral health care, however, is viewed in our society almost exclusively on the model of primary care, a view reinforced by the fact that it is practiced almost exclusively in offices and clinic settings, not in hospitals. Even though large hospitals often have dental departments and severe accidental injuries are treated in hospitals, the public’s perception is that oral health care is primary care provided in primary settings by primary caregivers. Thus, unlike

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medical/surgical primary caregivers, primary oral health care is not socially viewed as focused on preventing trips to the hospital where lives are extended. One can certainly instead imagine a national health care delivery system wholly focused on primary care for the sake of maintaining a high quality of life. But when the public understanding of even primary care, personal self-care, and healthy lifestyles principally emphasizes their benefits in preventing and forestalling lifethreatening conditions, it is hard to change social priorities. Another related but distinct factor that helps explain the lower priority of oral health care in our society is the view that oral health is something that does not require professional intervention. Good oral health depends fundamentally on self-care, especially in the form of good oral hygiene, and the efficiency of good self-care has been greatly enhanced by the fluoridation of the water supply in most parts of the United States. But over-generalizing this fact, or ignoring it altogether on the assumption that teeth are naturally very strong and therefore require no special attention, leads many people to avoid dental care until severe pain or dysfunction arises. Thus, for many, professional oral health care is not seen as a prerequisite for good oral health. Wide acceptance of this view also explains the low level of protest against inadequate support for oral health care.

Mental Health Care Mental health, like oral health, is typically valued less than medical/surgical care because it too is not seen as a life-or-death issue. When one of us (JES) started medical school in the 1960s, a disparaging riddle went like this: “Question: What is a psychiatrist? Answer: A Jewish doctor who can’t stand the sight of blood.” The point was clear— psychiatrists were not “real doctors.” Another widely told medical joke reflects the same ethos by mocking psychiatrists and general practitioners as ineffective ditherers, in contrast to the boldly active surgeon: A general practitioner, a psychiatrist, a surgeon, and a pathologist go duck hunting. A bird flies overhead. The GP says, “I think it’s a duck, but I’d better run some tests and get a second opinion.” By the time he shoots, the bird is gone. Another bird appears. The psychiatrist says, “It’s a duck, but it looks insecure to me— I wonder if it knows it’s a duck.” The bird gets

away. Yet another bird appears. The surgeon shoots it and turns to the pathologist: “Go see if it’s a duck!”

In the 19th century psychiatrists were known as “alienists.” Their patients were people whose minds had been “alienated.” Their place of practice was the asylum, an “alien” setting, literally walled off from “normal” society. Society held both psychiatrists and patients in low esteem. Although the horror with which society has regarded serious mental disorders has diminished over the years, movies like Psycho (1960) and One Flew Over the Cuckoo’s Nest (1975) suggest that seeing the seriously ill as “alien other” has staying power. The fact that mental conditions have often been seen as a sign of personal weakness has been another force for devaluing mental health care. For many, the conditions have been a source of shame and secrecy. The “Real Men/Real Depression” campaign referred to above is an example of the many efforts to bring mental conditions out of the closet and to “normalize” them. Significant movement has occurred, but deeply held social attitudes change slowly. Reducing stigma and shame remains a work in progress. U.S. culture retains much of the frontier “cando” spirit. Schoolchildren learn that the country was launched by a declaration that we are entitled to “Life, Liberty, and the Pursuit of Happiness.” We are great believers in self-help. Motivational books and videotapes are everywhere. This determination to improve ourselves is largely a positive force for mental health, but it is also an impediment to access for those whose personal healing resources prove inadequate. If we expect ourselves to solve our own problems, why invest public resources in mental health care? Interestingly, in a noted real-world resource allocation process in which mental health care competed with medical/surgical care on a level playing field, the public placed mental health care on a par with obviously important forms of medical and surgical care. In the creation of the famous priority list for the Oregon Health Plan, mental health and substance abuse advocates made a bold decision. If they really believed in parity for these services, they would have to enter the competition for priority and relinquish the security of distinctive, even if inadequate, special budgets. The results were dramatic. When the public was surveyed about which of 23 kinds of health symptoms concerned them most, they ranked problems

Oral and Mental Health Services with alcohol and drugs; difficulties with learning, thinking, or remembering; and frequent episodes of upset or depression among the top five. With regard to individual conditions, schizophrenia ranked just behind asthma and respiratory failure. Attentiondeficit disorder ranked just ahead of hypertension. Chemical dependency ranked four places behind closed hip fracture (Sabin & Daniels, 1997). Thus, the complex history of public attitudes towards mental illness and some measure of skepticism about the validity of psychiatric diagnostic categories and the effectiveness of psychotherapy affect the social valuing of mental health care in ways not shared by oral health in our society. Public valuing of mental health care has benefitted in ways that oral health care has not because of an increase in recent years in appreciation of the profound and debilitating suffering associated with untreated mental health needs. But in both cases the clearly life-affecting disparities in access between medical/surgical care, on the one hand, and oral and mental health care, on the other, stubbornly endure. Affecting change in the relevant social distribution systems, it seems reasonable to conclude, will ultimately depend on directly challenging the defective systems that appear to support them.

CONCLUSION In our view, the argument that a significant portion of oral and mental health needs are basic in the same way that significant portions of medical/ surgical needs are basic is incontrovertible. When basic needs are not satisfied, people are not able to achieve their other needs and aspirations. A health system that selectively disadvantages oral health and mental health is acting unethically on the basis of unsupportable misunderstandings and prejudices about these two forms of health care rather than rational choice. The result is a clear failure of fundamental social justice. We have tried to support this view by showing how public attitudes and the structure of U.S. insurance programs have created systematic access barriers to oral and mental health care. But when oral and mental health needs are assessed alongside medical/surgical needs on a level playing field, devoid of misunderstandings and prejudice, oral and mental health services are not significantly different in their importance to people’s ability to live their lives and pursue their goals effectively. To the degree to which we have seen access improvements for oral and mental health in the past 10 to 20 years, the improvements have

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resulted from persistent advocacy and political leadership based on an accurate understanding of the nature of oral and mental health needs and the results for a society and its people when these are not properly met. Further progress will depend on the same key tools.

Notes 1. Caswell Evans, DDS, MPH, the Project Director of the 2000 Surgeon General’s report, offers this dramatic example: “[In his book Savage Inequalities, Jonathon Kozol] describes the dour condition of oral health of Bronx school children and concludes, ‘Children live for months with pain that grown-ups would find unendurable. The gradual attrition of accepted pain erodes their energy and aspiration’ [p. 21] . . . Although Kozol’s observations were made fifteen years ago, the disparities data imply that in all likelihood little improvement would be found today among similar children in that setting” (Evans, 2006, p. 1181). 2. The National Health Interview Survey is conducted annually by the National Center for Health Statistics, but these 1996 statistics appear to be the most recent specifically on the correlation between oral disease and lost days of work or school. As mentioned above, the low priority associated with oral health in our society also has an adverse impact on the amount of data about its shortfalls that is available for policy planning. 3. This line of argument about a society’s proper ethical priorities can be found, for example, in Chapter 5 of John Stuart Mill’s Utilitarianism (Mill, 1998), in John Rawls’s notion of “primary goods” in A Theory of Justice (Rawls, 1971), in James Sterba’s The Demands of Justice (Sterba, 1980), and in Henry Shue’s Basic Rights (Shue, 1996). But none of these authors formulates the argument specifically in terms of the concept of basic needs, as is done here. 4. This is obviously only a sketch of the complete argument. To fully support the position that basic needs are more important than any other kind of ethical claim that can be offered regarding access, it would also be necessary to address the competing ethical claims and provide adequate reasons for giving them less priority. For more developed versions of this argument, see Ozar (1983) and Ozar (2002) and the works of Mill, etc., mentioned above.

References Bailit, H., T. Beazoglou, N. Demby, J. McFarland, P. Robinson, & R. Weaver. (2006). Dental Safety Net: Current capacity and potential for expansion. Journal of the American Dental Association 137(6):807–815. Centers for Disease Control & Prevention. (2010). DATA2010 . . . the Healthy People 2010 Database, January 2010 edition. Accessed July 6, 2010.

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Corrigan, P., & B. Gelb, (2006). Three programs that use mass approaches to challenge the stigma of mental illness. Psychiatric Services 57:393–398. Cunningham, P.J. (2009). Beyond parity: Primary care physicians’ perspectives on access to mental health care. Health Affairs 28:490–501. Druss, B.G., I. Hwang, M. Petukhova, N.A. Sampson, P.S. Wang, & R.C. Kessler. (2007). Impairment in role functioning in mental and chronic medical disorders in the United States: Results from the National Comorbidity Survey Replication. Molecular Psychiatry 4:728–737. Edelstein, B., & C. Chinn. (2009). Update on disparities in oral health and access to dental care for America’s children. Academic Pediatrics 9(6):415–419. Evans, C.A. (2006). Eliminating oral health disparities: ethics workshop reactor comments. Journal of Dental Education 70(11):1180–1183. Gehshan, S. (2009). Early life cycle. In National Academy of Sciences, The U.S. Oral Health Workforce in the Coming Decade: Workshop Summary. National Academies Press, p. 12. Accessed July 6, 2010, at www.nap.edu/catalog/12669.html Helgeson, M. (2009). Older adults and people with disabilities. In National Academy of Sciences, The U.S. Oral Health Workforce in the Coming Decade: Workshop Summary. National Academies Press, p. 12. Accessed July 6, 2010, at www.nap.edu/catalog/12669.html Kessler, R.C., O. Demler, R.G. Frank, M. Olfson, H.A. Pincus, E.E. Walters, P. Wang, K.B. Wells, & A.M. Zaslavsky. (2005). Prevalence and treatment of mental disorders, 1990 to 2003. New England Journal of Medicine 352:2515–2523. McKenna, M.T., C.M. Michaud, C.J.L. Murray, & J.S. Marks. (2005). Assessing the burden of disease in the United States using disability-adjusted life years. American Journal of Preventive Medicine 28:415–423. Mechanic, D. (2003). Is the prevalence of mental disorders a good measure of the need for services? Health Affairs 22:8–20. Mill, J.S. (1998). Utilitarianism. In J. Gray, ed., On Liberty and Other Essays. New York: Oxford University Press. Mitchell, J.B., S.G. Haber, G. Khatutsky, s. Donoghue (2002). Children in the Oregon Health Plan: How have they Fared? Medical Care Research and Review 69:166–183. National Alliance on Mental Illness. (2003). Real Men. Real Depression. Accessed July 8, 2010. www.nami. org/Template.cfm?Section=Top_Story&template =/contentmanagement/contentdisplay.cfm&Conte ntID=29765&title=Real+Men.+Real+Depression National Alliance on Mental Illness. (2010). What Is Mental Illness: Mental Illness Facts. Accessed July 16, 2010. www.nami.org/Content/NavigationMenu/

Inform_Yourself/About_Mental_Illness/About_ Mental_Illness.htm Olfson, M., R. Mojtabai, N.A. Sampson, I. Hwang, B. Druss, P.S. Wang, K.B. Wells, H.A. Pincus, & R.C. Kessler. (2009). Dropout from outpatient mental health care in the United States. Psychiatric Services 60:898–907. Oregon, State of, Office for Oregon Health Policy & Research (2010). Oregon Health Plan: http://www. oregon.gov/OHA/healthplan, Accessed February 21, 2012. Ozar, D. (1983). What should count as basic health care? Theoretical Medicine 4:129–141. Ozar, D. (2002). Dental Ethics at Chairside: Professional Principles and Practical Applications, 2nd ed. Washington DC: Georgetown University Press, pp. 245–260. Rawls, J. (1971). A Theory Of Justice. Cambridge, MA: Harvard University Press. Sabin, J.E., & N. Daniels. (1997). Setting behavioral health priorities: Good news and crucial lessons from the Oregon Health Plan. Psychiatric Services 48:883–884, 889. Shue, H. (1996). Basic Rights, 2nd ed. Princeton, NJ: Princeton University Press. Sterba, J. (1980). The Demands of Justice. Notre Dame, IN: University of Notre Dame Press. U.S. Department of Health and Human Services. (1999). Mental Health: A Report of the Surgeon General. Bethesda, MD. Bethesda, MD. National Institute of Mental Health. Accessed July 8, 2010, at www.surgeongeneral.gov/library/mentalhealth/ home.html U.S. Department of Health and Human Services. (2000a). Oral Health in America: A Report of the Surgeon General. Rockville, MD: U.S. Department of Health and Human Services, National Institute of Dental and Craniofacial Research, National Institutes of Health, Preface, p. vii. Accessed July 6, 2010, at www.nidcr.nih.gov U.S. Department of Health and Human Services. (2000b). Healthy People 2010, 2nd ed. Washington, DC: U.S. Government Printing Office. Accessed July 6, 2010, at www.healthypeople.gov U.S. Department of Health and Human Services. (2003). National Call to Action to Promote Oral Health. Rockville, MD: U.S. Department of Health and Human Services, Public Health Service, National Institutes of Health, National Institute of Dental and Craniofacial Research. NIH Publication No. 03–5303, Spring 2003. [Accessed July 6, 2010] U.S. Department of Health and Human Services. (2005). The National Survey of Children’s Health, 2003. Rockville, MD; US Department of Health and Human Services. [Accessed July 21, 2010]

Oral and Mental Health Services U.S. Government Accounting Office. (2000). Oral Health: Dental Disease Is a Chronic Problem Among Low-Income Populations: GAO-HEHS-00–72. Washington, DC: U.S. Government Accounting Office, 2000. [Accessed July 6, 2010] Wang, P.S., P. Bergland, M. Olfson, et al. (2005). Failure and delay in initial treatment contact after first

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onset of mental disorders in the National Comorbidity Survey Replication. Archives of General Psychiatry 62:603–613. Wells, K.B., A. Stewart, R.D. Hays, et al. (1989). The functioning and well-being of depressed patients: Results from the Medical Outcomes Study. Journal of the American Medical Association 262:914–919.

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34 Limits of Science and Boundaries of Access Alternative Health Care E . H A AV I M O R R E I M

INTRODUCTION Recent years have witnessed a rapid growth of interest in complementary and alternative medicine (CAM)—approaches to health, illness, and healing that often differ markedly from conventional Western medicine. The range is broad, from spiritual and mind-body approaches, to manual healing approaches, to dietary and nutritional emphases and beyond.1 Eisenberg et al. found that in 1990 Americans spent nearly $14 billion on such alternatives, three quarters of that sum out of pocket. There were more visits to unconventional providers than to all primary care physicians combined, and the people most commonly using alternatives were relatively affluent and well educated.2 By the time Eisenberg et al. revisited the question in 1997, there had been a 47% increase in the number of visits to alternative practitioners, and a 45% increase in spending. The great majority of people declined to tell their regular physicians about their use of alternative care.3 Several years later another study showed that nearly 68% of people used at least one CAM modality during their lifetime, and that this proportion has increased steadily since the 1950s.4 Meanwhile, funding for scientific research into CAM modalities has grown from $2 million in 1992, when Congress established the Office of Alternative Medicine at the National Institutes of Health (NIH), to $50 million when that office became the National Center for Complementary and Alternative Medicine in 1998. By 2003, overall NIH funding for CAM research had increased to over $220 million.5 Commentators point to a variety of factors behind this rising interest. Medical science achieves dazzling rescues for life-threatening illnesses but offers rather less for debilitating chronic illnesses. Moreover, some of the alternatives at

which Western medicine once scoffed are now seen to have merit, including acupuncture, chiropractic, guided imagery, support groups, nutrition, herbs, even leeches.6 Additionally, physicians working under “productivity” expectations have less time for the personal touch many patients deeply desire. Partly through these limits, and partly through headlines trumpeting medical errors and malpractice litigation, physicians’ halo seems a bit tarnished. Across the spectrum of these changes, society faces some interesting issues. On the one hand, many people believe they should have better access to alternative care, and some health plans and even legislatures have expanded financial coverage for patients to visit nonmedical providers.7 On the other hand, with annual costs of health care roughly $2.5 trillion dollars,8 and with millions of Americans soon to be added to the ranks of the insured, many critics caution against wasting money on alternatives that may be quackery.9 As we assess such criticisms and consider whether society should accept or perhaps even fund alternatives, we need to look at a few issues more deeply. In particular, it will be important to examine the view that alternative modalities should be accepted—or more commonly, rejected— on the basis of their scientific validity. As this essay will argue, these critics tend to overestimate the extent to which traditional medical practice is science-based, while potentially underestimating the value of at least some alternative modalities. Instead, a temperate approach should guide our decisions about whether and when society should accept or fund access to alternative health care. This essay does not purport to resolve these difficult issues, nor should it be read as an assault against conventional Western medicine. Rather, the goal is to dislodge a few preconceptions and

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thereby to enable a fresher, more carefully reasoned assessment as we weigh profoundly different healing approaches against one another.

R A D I C A L LY D I F F E R E N T PERSPECTIVES Perhaps the most common complaint about alternative modalities is that they typically embrace metaphysical entities and forces that cannot possibly be evaluated scientifically. For instance, “[i]n many traditional medical systems, the primary explanation for biological phenomena is based on the existence of a ‘vital force,’ an elusive entity designated Qi in China, Ki in Korea and Japan, prana in India, and vital force in Western traditions (e.g., homeopathy).”10 In Chinese medicine, qi is said to move “through the body along invisible meridians. Good health depends on the proper flow of this energy; disease and pain are the result of qi out of kilter.”11 Such invisibles, postulated to be the foundation of both wellness and disease, inherently elude the scientific measurement that is the hallmark of Western medicine, thus inviting some commentators to conclude they must surely be fictional.12 Moreover, critics argue, such fantasies can usually be explained much more straightforwardly. Where that is the case, then “we have wasted a lot of time and effort. The time has been wasted on all the people who have spent years learning falsehoods about acupuncture points and the principles of homeopathy. And the patients have wasted their time, money, and efforts receiving treatments that were not what they were represented to be or were harmful.”13 Such criticisms seem to presuppose that medicine itself is free of metaphysics—that the science on which it relies is the direct, unencumbered product of observation available to all who care to look, leading to conclusions that are available to anyone who cares to be rational. No unseen “Mysterious Forces.” On closer inspection, however, medical science has a rich metaphysic of its own. It presupposes a certain picture of the way the world is and how it functions. That picture has its distinctive epistemology (i.e., its own description of how we identify and gather knowledge), and on the whole is just as unprovable as any spiritual entity or life-force. Several elements are prominent in this implicit picture. First, the world is seen to be finite and sensible. That is, its constituent entities are observable to the senses, and can be measured and counted.

If something can’t be observed, measured, and counted, then it is “off the radar screen,” at least from the perspective of medical science. Second, it is assumed that all people with the requisite sensory capacities have basically the same sensory experiences of the world, so that observations about the world’s phenomena are intersubjectively confirmable. Thus, what I personally experience in association with the words “blue” or “acrid” is essentially the same as your experience. A phenomenon or experience that only one person can perceive is relegated to the domain of anecdote or even illusion, not a fit object of scientific knowledge. Third, the world is deemed thoroughly orderly, and this order persists through time via immutable laws of nature. Ultimately everything can be explained by being subsuming under broad laws of nature, and accurate generalizations will be just as true tomorrow as they are today. Otherwise there would be no point in doing science at all, because we could not build our knowledge over time by relying on yesterday’s observations as we add today’s. In this way, the truths of science are found in reliable patterns, not lone events. Finally, science holds that understanding the laws of nature gives us predictability and control. We can use the forces of nature as tools to make things happen the way we want them to, at least up to the limits of our knowledge and power. Although these precepts are regarded as obvious and immutable truths, such empiricism and materialism14 are no more “provable” than qi, prana, or any other metaphysic. Philosophers have long pointed out, for example, that no argument or evidence can possibly justify our presumption that the world is orderly or that this order must persist over time. Illustrating this “problem of induction,”15 as it is called, they note that we cannot conclude the sun will rise in the east tomorrow by pointing to the fact that it always has done so in the past. After all, the reliability of the past as a predictor of the future is the very issue in question. Neither can we prove that everything in the world is (at least in principle) available to human empirical observation and measurement, because we cannot possibly see what is beyond human vision nor can we hear what is beyond our auditory apparatus, in order to document that “there’s nothing more out there.” The upshot is that, for any healing approach, whether religious, metaphysical, or scientific, certain fundamental beliefs must simply taken as “givens” without any possibility of conclusive

Limits of Science and Boundaries of Access proof, lest we land in an infinite regress of proofsfor-the-proof. Accordingly, on the epistemic plane at least, we are left with a collection of irreducible contrasts. Just as science assumes everything is controlled by natural laws, a religious approach may hold that its healing God is not obligated to follow laws of nature, because the God who made those laws can change or override them at will. For Western medicine, even thousands of years of accumulated experience within a given tradition, such as Ayurvedic medicine, will not count as evidence in the absence of properly controlled trials to distinguish between a law-governed pattern and pure happenstance. In contrast, many alternative approaches are willing to find knowledge in received traditions, in lone events, or in subjective experiences such as personal revelations from a deity. Each perspective then interprets its successes or failures from within the rules and framework of that perspective. The faith healer will confront a failure with “he just needed a little more faith” or “God works in mysterious ways.” He will not conclude, if his patient dies, that “there is no God, after all.” By the same token, the physician whose patient dies will not conclude that “science is bogus.” He will say we just need a little more data or perhaps a better theory. Analogously, where an alternative approach ostensibly cures a patient whom medicine had declared to be incurable— the “miracle” cancer cure—the medical scientist will not conclude the alternative approach is correct after all. Rather, he will question the original diagnosis or call the healing unexplained, with the proviso that one day it will be scientifically accounted for. In this way, conventional medicine stands philosophically more on a par with alternatives than its proponents may recognize. If Western medicine can criticize Chinese medicine or faith healing because it “violates fundamental scientific laws,”16 an alternative approach can criticize medicine for its own failure, e.g., to honor the supreme principles of balance and harmony in the universe. Each criticism is made from within a framework that is itself presupposed to be true.17

MEASURING UP TO S C I E N C E Proponents of conventional medicine have sometimes proposed that alternatives might be acceptable, but only if they measure up to the rigorous standards of science. There are two problems with such a requirement. First, many alternatives are

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not conceptually oriented toward the tidy world of measurability, quantifiability, orderliness, predictability, and control embodied in a scientific approach. To require them to do so would be to distort their essential character. Second, often medical practice itself cannot measure up to its own scientific standards, for reasons of both principle and practicality. Hence, this section will suggest that a rigid demand for thoroughgoing science cannot be met even by medicine, and hence should not necessarily be required of alternatives.

Science and Alternatives From some alternative approaches’ perspective, gathering empirical data is a fundamentally wrong-headed way to search for truth. Spiritual healing, for instance, may emanate from historic teachings or divine revelations that come through opening one’s heart rather than opening one’s eyes, ears, or toolbox. Other kinds of alternative medicine are more amenable to tracking empirical connections between healing inputs and patients’ outcomes. But they do not necessarily lend themselves well to classic science, in which study subjects are narrowly selected to exclude confounding factors, and in which all study subjects receive the same inputs in order to facilitate the cleanest statistical analysis. Homeopathy, for instance, emphasizes highly individualized diagnoses and treatments— not entirely compatible with the standard randomized controlled trial (RCT) in which everyone in a given arm of a study receives exactly the same dose of the same treatment.18 Analogously, acupuncture cannot easily accommodate classical placebo controls without introducing conceptual distortions into its theory and practice.19 Accordingly, to require alternative modalities to meet medicine’s criteria of scientific validity may do them an injustice. A science-style “controlled evaluation of alternative medicine therapies may require its practitioners to undertake a fundamental conceptual shift from a view of patients as requiring individualized treatment that may vary at each session to one in which trial participants are regarded as members of an equivalence class, defined by the diagnosis, who all will be given a standard prescribed treatment.”20 Again, this does not entail that alternatives are excluded from science altogether. More will be said on this below. But it may mean that the science by which they are evaluated may look more like paleontology or geology than like highly controlled laboratory experiments.21

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Science and Medicine If various alternatives do not quite fit with classical bench science, conventional medicine actually shares that difficulty. There are many respects in which medical practice does not, and in important respects can never, meet its own scientific ideal. The reasons are both philosophical and practical. Philosophical Obstacles to Science in Medicine Science’s focus on that which can be defined, observed, measured, enumerated, and statistically analyzed tends to leave out whatever is not amenable to such precision. If something can’t be counted, it doesn’t count. And yet even devoted scientists recognize that this rigorous standard leaves out many factors that can be hugely important in medicine and other human endeavors.22 For instance, one obviously important aspect of health and health care is quality of life. Although various measures are available, none are entirely satisfactory.23 We can itemize and tally the physical impediments in a person’s life, for example, yet we know well that some people with grave disabilities will deem their quality of life to be excellent, as they find joy and meaning in things that able-bodied persons might overlook. As a result, many studies of medical interventions look only at the intervention’s effects on major morbidity and mortality, while those that do assess quality of life (QL) are subject to criticism because the QL measures are so flawed. An even more potent example is the placebo effect. Although placebos usually take the form of a pill, injection, or infusion with no medically active ingredient, the more important factor is the placebo effect—that is, the power of belief, expectation, hope, and trust that comes with the patient’s anticipation of healing. With placebo alone, patients can experience marked improvement in their condition, or can even suffer significant side effects.24 That much is well documented. This effect can be so powerful it will confound virtually any research if not appropriately controlled for. Indeed, evidence indicates that the placebo effect may actually be growing more powerful in recent years.25 Hence, gold-standard science requires double-blinding: where neither the investigator nor the subject knows which treatment he is receiving, it is more difficult for their hopes and expectations to precipitate biological changes that could distort any findings regarding the drug, device, or other intervention under study.26

Interestingly, however, once such carefully controlled research has deemed an intervention effective, placebo tends to be regarded essentially as “nothing,” so that the conclusions investigators draw from their research typically imply that the active intervention is better (or not) than no treatment at all. Sullivan explains the implications: The healing power of the placebo arises from the therapeutic encounter and alters the physiology of the body according to the nature of that encounter. It is unlikely that this power has any single biochemical identity within the body throughout its varied applications. It is thus essentially different from the specific/ pharmacological healing proffered by orthodox medicine. . . . Within placebo-mediated healing, knowing and healing are directly linked. A shift in beliefs is therapeutic. . . . [Thus, p]lacebo-induced therapeutic changes are specifically those successes which are illegitimate for orthodox scientific medicine.27

The result is almost paradoxical. On the one hand, medical science recognizes the extraordinary power of placebo, and must design research around its overwhelmingly confounding effects. Yet in the aftermath of those studies, medicine relegates this avowedly powerful mode of influencing body processes to merely the “art” of medicine. It is not an art that many physicians study or cultivate, and when alternative healers harness it effectively, it is usually disdained as “mere” placebo.28 Reciprocally, if a patient is made considerably better by placebo, a common inference is that the problem must not have been real to begin with. So, one wonders, which is it: a force so powerful it can thwart the best research and overshadow powerful medicinals, or a meager result that alternative modalities produce because they cannot produce genuine healing? Aside from discounting whatever cannot be precisely measured and enumerated, medical science faces other philosophical limits. Ethical constraints, for instance, restrict research topics and methods. Theoretically, the best way to learn how a new drug treats an illness would be to give people the disease—exactly the same strain of the bacterium or virus to each person—and then administer the drug and measure its effects. But such a research design is ordinarily unethical, and so we must find people who already have the illness in question. And then we can only request, not require, them to participate. In the same vein,

Limits of Science and Boundaries of Access randomization is sometimes precluded by patients’ preferences. In studies comparing lumpectomy with mastectomy for breast cancer, women’s refusal to leave such an important choice to chance required modification of the usual randomization procedures.29 Ethical concerns have also constrained testing potentially harmful drugs on children and pregnant women, and have limited the use of placebo (“sham”) arms in surgery trials. Efforts are emerging to improve the rigor of surgical research.30 Similarly, requirements have emerged to test products more thoroughly on women and children,31 because where these populations remain untested, then in essence the intervention is experimental for everyone. Still, such research can only place limited risk on study subjects.32 Accordingly, the rigor of research designs must be attenuated to accommodate other values. In sum, science cannot, even in principle, tell us about everything that is significant in illness and healing. Important factors will always be left out, namely those that aren’t amenable to satisfactory quantification and those that cannot be studied for other reasons, such as ethical constraints.

Practical Obstacles to Science in Medicine Science in medicine also faces practical constraints. For instance, it is impossible to do double-blinded trials in surgery, since obviously the surgeon must see what she is doing. Likewise, differences in skills among practitioners, and evolution of each practitioner’s skills over time, are difficult to control for. The same is true for psychotherapy, which is additionally complicated by variations in the interpersonal chemistry between individual therapists and patients. Research is also very costly, particularly because studies must usually be large in order to attain statistical significance. We cannot afford to study everything that needs scientific evaluation, nor to replicate important results, nor to undertake new studies every time a technology or its use is revised. Further, funding for the great majority of medical research comes either from manufacturers of drugs, devices, and other products, or from government. Thus a research proposal must usually be either commercially or politically attractive if it is to be funded.33 Garas et al. observed this close connection between science and funding in conjunction with clonidine, a very effective and inexpensive drug for congestive heart failure:

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despite multiple efforts, there has been no interest so far from anyone to fund large controlled studies to demonstrate the long-term impact of these alterations on patient outcome. The clinically observed benefits of clonidine in heart failure are known to a small circle of academic cardiologists, but the primary care physicians who treat 90% of patients with chronic heart failure are totally unaware of them.34

As a result of these myriad impediments, many important topics in medicine have never been studied, or are not studied soon enough.35 For instance, as of 1988, a national conference on antithrombotic therapy (anti-clotting treatments used to prevent stroke, pulmonary embolism, and the like) evaluated the scientific foundation for various recommendations on which physicians based treatment. The American College of Chest Physicians found that only 24% of those recommendations were based on appropriately scientific studies, while 55% were based on uncontrolled clinical observations. Ten years later, 44% of the recommendations were science-based, though this was largely because of Food and Drug Administration requirements for the testing of new drugs.36 Similarly, although coronary artery bypass surgery was first performed in 1964, its efficacy was not scientifically evaluated until 1977; likewise, angioplasty to open up clogged arteries in the heart was “performed in hundreds of thousands of patients prior to the first randomized clinical trial demonstrating efficacy in 1992.”37 “When The U.S. Preventive Services Task Force reviewed more than 6,000 studies on 200 clinical preventive practices, it concluded that very few are supported by sound scientific evidence.”38 The now-defunct Office of Technology Assessment “estimated that fewer than 30% of procedures currently used in conventional medicine have been rigorously tested,” and some other assessments conclude the figure is even smaller.39 Aside from these significant limits on the content and scope of scientific research, the translation of research into the clinical care of individual patients deviates even further from science. For one thing, physicians may not always quickly adopt well-documented findings. “In the current health care system, scientific knowledge about best care is not applied systematically or expeditiously to clinical practice. An average of about 17 years is required for new knowledge generated by randomized controlled trials to be incorporated into practice, and even then application is highly uneven.”40

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Additionally, the more pristine the science, the less it is applicable to actual clinical care. This is because, to test strictly for the effects of a specific drug or procedure, study design must be limited to patients fitting a narrow set of eligibility criteria—typically, patients with a minimum of other diseases and medications that could confound the results.41 Once the study is complete, however, its findings are applied to all those complex patients who would never have been eligible for the study.42 Thus, the more perfectly scientific and highly controlled a study is, the less its enrolled subjects resemble the ordinary souls, with their multiple problems, for whom ordinary physicians care. One result of this misfit between the research populations and the broader clinical population is that sometimes even well-researched new drugs and procedures must be quickly withdrawn from the market because of unanticipated problems. Between September 1997 and September 1998, five FDA-approved drugs were removed from the market because of unexpected side effects or interactions with other drugs. For instance, by the time mibefradil (Posicor) was removed, it was known to interact with 26 different drugs.43

Implications Between the dearth of studies and the compromised applicability of existing studies to the care of individual patients, physicians would be hard pressed to claim that their care is exclusively or even primarily a direct application of science to practice. This is not to deny that clinical medicine is science-based in many respects. Physicians are increasingly practicing “evidence-based” medicine, in which the routine care of routine situations is based on the most up-to-date, scientifically validated approaches to a given problem. Additionally, there are many illnesses and injuries for which a broad consensus can guide care. In puzzling situations physicians can also of course refer to their basic knowledge of human physiology, anatomy, and the like, to hypothesize what should, in theory at least, be the right approach for the patient. While important and useful, these strategies cannot entirely compensate for the lack of studies or for the limited applicability of existing studies. In actual practice, “doctors usually rely on a combination of habit and casual intuition, using tests and treatments they are familiar with, have heard good things about, or seem to work in test tubes or laboratory animals.”44

Moreover, treating patients on the basis of hypotheses, absent real research, can be disastrous. Two examples of theoretically attractive interventions can show those hazards. Pulmonary artery catheterization, widely in use for three decades, eventually came under scientific scrutiny as reports began to suggest it may actually do more harm than good.45 Similarly, high-dose chemotherapy with autologous bone marrow transplantation was used to treat breast cancer for more than a decade. There was never any real evidence the treatment would work,46 only a bit of theory and physicians’ desire to do something—anything—to help patients for whom they had little to offer. Not until 1999, when studies were finally completed, did it become evident that the treatment was no better than conventional chemotherapy.47 Numerous treatments in the history of medicine have been widely adopted and then later found to be ineffective.48 The upshot is a mixed review. Medicine can justly pride itself on a wide array of stunning successes, attributable in large part to scientific research. At the same time, science cannot possibly be the sole basis on which physicians care for patients. There is too much that has never been studied and too much that, for many reasons, can never be adequately studied. Much research leaves out or vastly underrates avowedly important aspects of illness and healing, and even the best studies cannot be applied in any straightforward way to individual patients. Physicians’ practices vary widely, in ways that cannot be explained by differences among patients.49 As a further practical reality, physicians’ actual practices often do not implement what science is available. Overuse, underuse, and misuse of recognized treatments is now recognized as a major problem throughout medicine.50 Although best-evidence approaches are steadily improving clinical care, large portions of medicine are not, and never will be, scientific. Interestingly, many practicing physicians have articulated a similar conclusion when protesting managed-care efforts to reduce the variation in clinical practices or to control costs.51 Partly they note that many of the guidelines on which health plans rely are not based on good science.52 But even with scientifically credible guidelines, medicine cannot be practiced by “cookbook,” they argue, because no guidelines can be sufficiently accurate, complete, up to date, and detailed to dictate the care of specific patients; care must be individualized. This becomes, perhaps, the most important conclusion from all the foregoing discussion: medical

Limits of Science and Boundaries of Access research and clinical care, while related, are very different enterprises. While the former can strive for great precision in the strongest traditions of science, the latter will forever be a far more intuitive, use-your-best-judgment, rely-on-experience, kind of enterprise—the “art” of medicine. It is the very sort of cumulative experience-based healing on which many alternatives also heavily rely.

ADDRES SING THE T E N S I O N S : H OW S H O U L D H E A LT H PLANS RESPOND? At this juncture important questions arise concerning how society, and its health plans in particular, should respond to the public’s increasing interest in alternative approaches. Simplistic answers will not suffice since, as observed above, medicine cannot fully conform to its own scientific ideal, and in any case science cannot claim a monopoly on effective healing. A temperate approach thus seems appropriate, acknowledging that there may be more than one way to understand what illness is, and that healing might come through a diversity of avenues. As an initial move, it is important to avoid double standards that would hold alternative modalities to a standard of proof that medicine itself cannot meet.53 When alternative providers emphasize individualizing care they should not be called “unscientific” if, at the same time, clinical physicians who likewise individualize their interventions are approvingly regarded as practicing the “art” of medicine.54 The successes of alternative modalities cannot be dismissed as mere “anecdotes” and “testimonials,” if we accept as authoritative physicians’ statements that “my patients have done well/poorly with this treatment,” or “in my clinical experience X has worked well.” When alternative providers invoke the power of belief and expectation it should not be dubbed “mere placebo,” if at the same time we permit physicians to invoke the “power of the white coat” or to foster “a certain mystique” in the physician–patient relationship. An alternative practitioner is not “peddling false hope” if, in a comparable situation, physicians might paint overly optimistic pictures on the ground that “we can’t take away the patient’s hope.”55 At the same time, even an open-minded approach to alternative treatments does not resolve the challenges that health plans and society now face. If some alternatives offer bona fide help for some patients and some conditions, there is also

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undoubtedly a significant measure of quackery and sheer hucksterism in the current turbulent health care market. Society thus faces an array of questions, such as whether to regulate alternatives, requiring them to demonstrate that they are at least safe if not also effective; whether to license alternative practitioners such as homeopaths or acupuncturists and, if so, how to set the applicable standards; and whether to add any alternative healing modalities to government-sponsored health plans such as Medicare, or to require such coverage in federal employees’ health plans. Such societal issues are beyond the scope of this essay, but it will be useful to explore a related question: how health plans should respond to increasing pressures to cover alternative care. The issues will not be resolved in this brief forum, but a few basic considerations can be suggested. We will first consider benefits and harms, then economic concerns.

Benefits and Harms Perhaps the most powerful reason Western medicine has such pre-eminence is the simple fact that, for many diseases and injuries, its treatments often work well.56 Infectious diseases are a classic example: a pathogen is identified and drugs are developed that literally, dramatically, save a life. Organ transplants, joint replacements, and limb reattachments are but a small sampling from the rest of the list. Still, it is widely agreed that there are many problems, particularly those involving chronic illness, that medicine does not address so well. Moreover, medicine’s treatments sometimes carry a terrible price. One meta-analysis found that more than 100,000 persons die annually from adverse drug reactions in U.S. hospitals, placing these events between the fourth and sixth leading cause of death.57 Many of those drug reactions are not the product of error, but rather are side effects reflecting a known incidence whose possibility has been accepted as part of a risk–benefit assessment. In a related area, a widely cited study by the Institute of Medicine estimated that as many as 98,000 people per year may be dying from medical errors—ranking medical error as the eighth leading cause of death, killing more Americans than motor vehicle accidents, breast cancer, or AIDS.58 To be sure, one cannot blame conventional medicine per se for these errors. And yet health care delivery has become so complex that quite likely some significant level of error will always be a problem, even if that level can be reduced from present levels.

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On the other side of the coin, relatively few data have been gathered regarding the risks of various alternatives, though surely there are hazards. Herbal preparations, for instance, can react with other drugs, although exact profiles have yet to be established. Manufacturing problems can hamper quality, and there may be toxicities that have not yet been precisely identified.59 In the same vein, chiropractic, improperly applied, can potentially cause serious injury. Nevertheless, many alternative approaches, such as acupuncture, homeopathy, biofeedback, or guided imagery,60 use such noninvasive, benign modalities that they pose few obvious risks so long as they do not prompt patients to forego treatments of proven value. At the same time, many patients have found great benefit in alternative treatments—enough value that by the late 1990s they were willing to invest over $20 billion in alternatives, including more than $12 billion out of their own pockets— more than the out-of-pocket expenditures for all U.S. hospitalizations.61 Willingness to pay does not equate with successful outcomes, of course. And yet it is reasonable to suppose that some significant measure of value was perceived, or else these figures would not have risen so markedly from earlier counts.62 If this risk–benefit picture is anywhere near accurate, it is difficult to argue that alternatives should be simply forbidden, or even that people should always be required to try Western medicine first. Autonomous adults are entitled to make their own choices for their own reasons, even if sometimes foolishly.63 In fact, use of alternative modalities generally appears to be quite judicious. Most people still seek out Western medicine where it offers clear, major benefits, and turn to alternatives where medical science has the least to offer—chronic illnesses, disabling conditions, medically incurable diseases, and the like.64 The major exceptions include people with univocal dedication to a faith tradition such as Christian Science. Accordingly, so long as an alternative is not demonstrably harmful or fraudulent it ought, prima facie at least, to be permitted. If various alternatives should still be freely available in the marketplace,65 the more pressing question is whether and under what conditions health plans should cover them.

criteria come to mind. As a first attempt, if one wants to be sure that the common funds health plans use for all their enrollees are not wasted, one might propose that plans should cover only interventions that are shown to be of value by the bestquality science. Such a stiff criterion must quickly be discarded, however. As noted above, many well-accepted areas of medicine, from surgery to psychiatry to epidemiology, do not always lend themselves to classic “gold-standard” RCTs. And much of clinical medicine can make only limited use of RCT science, since ordinary patients are more complex than the narrowly chosen population in research trials. This first criterion would surely save money, but only by denying patients a wide array of helpful care—hardly the purpose of a good health plan. An alternative, looser criterion might require that there be at least some science to substantiate the value of an intervention, or a healing approach, before it will be covered. There is much to recommend this criterion. One reason an empirical, science-based approach is attractive is its intersubjectivity. We needn’t simply trust one person’s report that something works or doesn’t; we can use a fairly clear set of rules for gathering evidence via shared observation, and for discerning which conclusions are warranted by that evidence. We can be reasonably confident that treatments passing such a test will work for many people, even if there is no guarantee. Indeed, the Institute of Medicine issued a report in 2005 recommending additional research and identifying a variety of methodologies that can be acceptable ways of exploring CAM.66 By data on Medline’s indexing services, articles on CAM research increased from fewer than 200 in 1982 to more than 7,500 by 2008.67 When common funds are involved, that intersubjective agreement is appealing, because we want shared resources to be well used. At the same time, it should be recognized that simply obtaining information about relevant research in the area can be challenging.68 In that spirit, a number of studies suggest that, under such a criterion, health plans might have reason to cover a number of alternative modalities, although close attention to mixed evidence would seem to be indicated. Research has suggested that:

Costs and Coverage As we consider whether health plans should cover alternatives, and if so which ones, several potential

*Transcendental Meditation appears to be just as effective as drugs in the treatment of mild hypertension.69

Limits of Science and Boundaries of Access * Spinal manipulation may be the most effective, cost-effective treatment in many cases of acute low back pain, and as well for acute and subacute neck pain.70 * Hypericum perforatum (St. John’s wort) does not appear effective for treatment of ADHD in children and adolescents.71 * Echinacea does not appear to provide statistically significant relief for cold symptoms.72 * Auricular acupuncture appears to be of significantly greater value in treating cocaine dependence than relaxation treatment or “sham” needle insertion.73 * Glucosamine combined with chondroitin does not appear to be better than placebo for symptomatic osteoarthritis of the knee.74 * Individualized Chinese herbal preparations can be of significant value in treatment of irritable bowel syndrome.75 * Herbal remedies such as black cohosh appear to be no better than placebo for relief of menopausal symptoms.76 * A yoga-based regimen is more effective than wrist splinting or no treatment in relieving symptoms and signs of carpal tunnel syndrome.77 * Saw palmetto extract produces similar improvement with fewer side effects in the treatment of benign prostatic hypertrophy, compared with the drug finasteride.78 * Asthma patients who wrote about their stressful experiences in a journal experienced significant, clinically relevant changes in their health status.79 * Horse chestnut seed extract is significantly effective in treating chronic venous insufficiency.80 * Willow bark extract may be safe and effective for exacerbations of low back pain.81 * One particular nutrition regimen can not only stop but reverse some coronary artery disease.82 * Aromatherapy has shown success in treatment of alopecia areata.83 * Remote intercessory prayer appears effective in improving the overall condition of critically ill patients and may be an effective adjunct to care.84

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* Weekly support groups and self-hypnosis were associated with doubling the survival of women with advanced breast cancer,85 and other CAM modalities such as relaxation, acupuncture, and imagery appear helpful generally for patients with cancer.86 Thus, this second, looser criterion would admit a much wider array of care, both conventional and alternative, than the first one. Yet even here, some very helpful modalities might still be excluded. After all, Western medical practice unavoidably goes well beyond the limited number of studies for which scarce research funding is available, and a mandate to provide specific scientific backing for each intervention—even shy of gold-standard RCTs—would obligate us to throw out a substantial portion of day-to-day medicine. Up to a point, such pruning would be desirable. The quest for evidence-based medicine is based on a growing recognition that medical care could and should be more effective, and that ineffective care can cause harm as well as waste resources. Still, a requirement that every intervention have at least some specific scientific support would arguably be hasty. From the bare fact that “there is no evidence” it is simply fallacious to conclude “there is no value.” There is simply not enough money to study everything that merits research, whether conventional or alternative. And so it is certain that some quite clearly useful interventions will never have their value adequately documented. However, once we embrace unsubstantiated conventional medicine, it is not clear on what grounds we can exclude equally unsubstantiated alternative treatments. As pointed out earlier, some alternative modalities, such as spiritual healing, do not lend themselves to standardization and quantification, yet this does not mean they are worthless. We remain in a quandary, then, if our objective is to draw some sort of fairly “bright line” between that which health plans should fund and that which they should pass by. A third criterion might focus on avoiding waste and harm. There is wide agreement that conventional medicine has enormous benefits for most people, and thus is unlikely to waste much money. In contrast, so long as alternatives have only minimal scientific documentation, the argument might go, they should find their own funding. If and when a particular alternative approach gains scientific ascendancy by proving its worth, then health plans can accept it for coverage.

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This approach may sound initially attractive, because it resembles quite closely what most health plans already do. However, its problems quickly become evident. A closer look at conventional medicine suggests that the vast amounts of money it sometimes wastes can make the costs of alternative approaches pale by comparison. During the decade in which 30,000 women received bone marrow transplants for breast cancer, as described just above, some $3.4 billion was spent on this non-beneficial, and often harmful, treatment.87 In the process, additional enormous sums were spent on hundreds of lawsuits that often required plans to pay for the treatment and in some cases levied millions of dollars in punitive damages against plans.88 Many families incurred overwhelming personal debts, sometimes losing their homes and retirement funds,89 to pay for the treatment because doctors said it represented the patient’s best or only hope. In another example, arthroscopy and lavage for osteoarthritis of the knee was once a common procedure, provided to more than 650,000 per year. At $5,000 each, the total cost was $32.5 billion each year. Although uncontrolled studies suggested that it improved patients’ comfort and function, eventually a carefully conducted randomized, placebo-controlled trial, in which both patients and outcomes assessors were blinded, concluded that the procedure was no better than sham surgery.90 Other once-popular, later-disproven treatments tell similar tales of wasted money, from glomectomies for asthma, to photodynamic therapy and organic solvents for herpes simplex infection, to gastric freezing for ulcers.91 To these we can add ongoing instances of overuse,92 such as prescriptions for antibiotics that are either clearly unnecessary or more powerful and costly than the patient’s illness requires. As also noted above, physicians’ clinical practices are seen to vary widely, in ways not justified by differences in patients’ conditions.93 While we cannot be certain “which rate is right”94 for various surgeries, diagnostic interventions, and drug prescriptions, it is safe to suppose that at least some of this variation represents unnecessary care and thereby additional wasted money. Decades of generous fee-for-service funding, combined with defensive medicine and other inflationary pressures, have almost certainly raised medical customs to a level above that which is truly useful. If high-technology Western medicine is thus capable of such size-large, unwise expenditures, it

would be awkward to conclude that alternatives should be automatically excluded from coverage simply because they might waste money. At the same time, a reciprocal point should also be emphasized. The bare fact that an alternative may be cheaper does not mean it should be endorsed, let alone favored. As health plans, and the governments and employers who purchase most of them, face relentless pressures to contain the costs of care, and as more information comes to light about the limited evidentiary basis on which conventional medicine often must practice, the possibility exists that plans will not only cover alternatives, but might even mandate or at least encourage their use in cases where there is no evidence to show a superiority of costlier conventional modalities. However, just as “no evidence” does not mean “no value,” neither can we conclude that, where two interventions that are equally unsupported by evidence, the two must be equally good. Accordingly, perhaps the proper task should not be understood as a need to identify some criteria by which health plans will “correctly” include or exclude this or that healing modality. Rather, the proper task should be for health plans to find ways to shepherd their resources prudently, whether for conventional or for alternative remedies, while maximizing the good those funds achieve.

Promoting Good Care Within Prudent Limits A balanced approach would seem to need several elements. First, plans should leave room for patients themselves to define what constitutes the “good” that health care will provide for them. So long as the evidence is equivocal regarding the benefits and harms of so many modalities, and so long as some of the alternatives that people find very helpful are not amenable to scientific quantification, across-the-board exclusions of alternatives seem inappropriate. Perhaps a reasonable approach might use the test of time. Longstanding traditions with widespread support, such as acupuncture or chiropractic, might be more readily embraced, while giving “overnight sensations” less credence if they cannot provide more substantial evidence of value. Such an approach would essentially be equivalent to the “physician acceptance” standard that many plans currently include for determining whether a new intervention is “medically necessary” or is instead “experimental.” Second, health plans need not all have identical coverage. For a variety of reasons that are

Limits of Science and Boundaries of Access discussed elsewhere,95 plans should be permitted openly to provide varying levels of coverage, ranging from basic care to more generous packages. In this setting, the most basic plans might limit coverage—whether of medical or of alternative interventions—to care that has been reasonably well demonstrated to be safe and effective. Broader packages might include various alternatives, alongside broadening access to less well-proven medical procedures. Third, plans can institute some of the same kinds of cost containment for alternative treatments, ranging from incentive systems to utilization management and fee scales, that they now exert upon conventional medicine. Admittedly, there is hot debate concerning how appropriate these economic measures are. And yet with the rising cost of care, and millions still uninsured, some kind of cost control is as appropriate as it is inevitable. Arguably, patients should play a role in the cost containment that governs their own care. The point will be made only briefly here because it has been detailed elsewhere.96 In a system where patients share in the costs of their own choices, as where patients have high deductibles accompanied by health savings accounts to cover those costs, they have reason to be prudent about the value and the cost of their requests. These financial incentives should not pose barriers to needed care, but they should provide rewards for prudence and an opportunity to consider carefully which care is worthwhile. An array of options have been described, from graduated copays for prescription medications, to health savings accounts,97 to other options. Via whatever plan, the more patients take responsibility for their own utilization management, the less health plans will need to dictate, detail by detail, what they will receive, and the less plans may feel impelled to incentivize physicians to work against their own patients. Where patients have access to alternative modalities, combined with incentives to be prudent, health plans can conduct a further kind of research, assessing which alternatives their enrollees actually prefer, whether those modalities produce favorable outcomes, and how the costs for patients who use alternative treatments compare with those who use only conventional providers. It might be found that a fairly broad access to alternative modalities can actually save money, for instance, if people suffering from somewhat vaguely defined conditions like fibromyalgia find better and cheaper relief from massage than from costly drugs.

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With a combination of prudence and openmindedness, coverage for a reasonable range of alternative approaches might enhance patients’ outcomes and satisfaction without necessarily increasing health care costs.

CONCLUSION This is a time of turbulent transition throughout health care. From within and from outside conventional medicine, traditions hitherto unquestioned are being challenged. And as millions of citizens are expected soon to enter the ranks of the insured, careful shepherding of common resources is imperative. While it is deeply unsettling for many people, wonderful opportunities are also emerging, in which medicine can be improved by its encounters with the strangers from outside, and perhaps even more so by examining its own most cherished assumptions. AC K N OW L E D G M E N T The author acknowledges with gratitude the very helpful comments provided on earlier drafts of this paper by Lawrence J. Schneiderman, M.D., Rosamond Rhodes, Ph.D., and Anita Silvers, Ph.D. Notes 1. A lengthy but still incomplete list would include chiropractic, massage, exercise therapy such as Tai Chi or yoga, acupuncture, coining, cupping, homeopathy, naturopathy, herbal medicine, self-help groups, folk remedies, energy healing, relaxation techniques, guided imagery, therapeutic touch, spiritual or faith healing, nutrition and special diets such as macrobiotics or megavitamin therapy, biofeedback, hypnosis, folk remedies, root medicine, aromatherapy, reflexology, prayer, and purification ceremonies. 2. Eisenberg, D.M., R.C. Kessler, C. Foster, et al. (1993). Unconventional medicine in the United States. New England Journal of Medicine 328:246–252. 3. Eisenberg, D.M., R. B. Davis, S.L. Ettner, et al. (1998). Trends in alternative medicine use in the United States, 1990–1997. Journal of the American Medical Association 280:1569–1575. 4. Kessler, R.C., R.B. Davis, D.F. Foster, M.I. Van Rompay, E.E. Walters, S.A. Wilkey, T.J. Kaptchuk, & D.M. Eisenberg DM. (2001). Long-term trends in the use of complementary and alternative medical therapies in the United States. Annals of Internal Medicine 135:262–268; Chan, E. (2008). Quality of efficacy research in complementary and alternative medicine. Journal of the American Medical Association 299:2685– 2686; Druss, B.G., S.C. Marcus, M. Olfson, T. Tanielian, & H.A. Pincus. (2003). Trends in care by nonphysician clinicians in the United States. New England Journal of Medicine 348:130–137.

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5. Miller, F.G., E.J. Emanuel, D.I. Rosenstein, & S.E. Straus. (2004). Ethical issues concerning research in complementary and alternative medicine. Journal of the American Medical Association 291:599–604, at 599. 6. See below, “Addressing the Tensions.” 7. The state of Washington, for instance, has mandated that health plans cover some forms of alternative health care—a statute that its Supreme Court upheld. See WA Rev. Code § 48.43.045. For cases concerning this statute see Certification v. Regence Blue Shield, 991 P.2d 77 (WA 2000); Washington Physicians Services Ass’n v. Gregoire, 967 F.Supp. 424 (W.D. Wash. 1997). See also Grandinetti, D.A. (1997). “Integrated medicine” could boost your income. Medical Economics 74(8): 73–99, at 74; YaDeau, R. (1996). Cost-effectiveness and complementary medicine. American Journal of Managed Care 2:460; Grandinetti, D.A. (1999). Your newest competitors: alternative-medicine networks. Medical Economics 76(10):44–51. 8. Kaiser Family Foundation. Trends in Health Care Costs and Spending, March 2009; available at http://www.kff.org/insurance/upload/7692_02.pdf. 9. “Roughly a third of unconventional practices entail theories that are patently unscientific and in direct competition with conventional medicine.” Campion, E.W. (1993). Why unconventional medicine? New England Journal of Medicine 328:282–283, at 282. “It is time for the scientific community to stop giving alternative medicine a free ride. There cannot be two kinds of medicine—conventional and alternative. There is only medicine that has been adequately tested and medicine that has not, medicine that works and medicine that may or may not work.” Angell, M., & J.P. Kassirer. (1998) Alternative medicine—the risks of untested and unregulated remedies. New England Journal of Medicine 339:839–841, at 841. 10. Eskinazi, D.P. (1998). Factors that shape alternative medicine. Journal of the American Medical Association 280:1621–1623, at 1621; see also Kaptchuk, T.J., & D.M. Eisenberg DM. (1998). The persuasive appeal of alternative medicine. Annals of Internal Medicine 129:1061–1065. 11. Kanigel, R. (1998). Taking acupuncture seriously. Hippocrates 12(5): 23–24, at 24. 12. “Most alternative systems of treatment are based on irrational or fanciful thinking and false or unproven factual claims. Their theories often violate basic scientific principles and are at odds not only with each other, but with current knowledge of the structure and function of the human body as now taught in our medical schools.” Relman, A.S. (1999). Is integrative medicine the medicine of the future? Archives of Internal Medicine 159:2122–2126, at 2123. Relman continues: “Alternative medicine stands apart from modern science, challenging many of its assumptions and methods and depending for its verification largely

on personal belief and subjective experience . . . alternative medicine teaches that faith in a method will make it effective and that the strongest kind of evidence is the patient’s belief that a treatment is working.” 13. Schneiderman, L.J. (2000). Alternative medicine or alternatives to medicine? A physician’s perspective. Cambridge Quarterly of Healthcare Ethics 9: 83–97, at 91. 14. Eskinazi summarizes the metaphysics of medical science: Biomedicine is founded in part on materialism (in contrast to the vital force explanation). Materialism in this context refers to the theory that “physical matter is the only or fundamental reality, and that all beings and processes and phenomena are manifestations or results of matter.” While biomedicine does not necessarily reject religion or spirituality, it does not routinely incorporate these aspects into diagnosis and treatment . . . . Consistent with this philosophical theory, biomedicine considers biological entities more or less as equal to the sum of their anatomic parts . . . and endeavors to elucidate molecular, physiological, and pathological mechanisms believed to form the basis of biological processes. Allopathic medical treatment often logically consists of interventions chosen to interfere with identified pathological molecular processes.

Eskinazi, D.P. (1998). Factors that shape alternative medicine. Journal of the American Medical Association 280:1621–1623, at 1621–22. 15. Black M. (1967). Induction. In: Edwards P, editor-in-chief. The Encyclopedia of Philosophy. New York: Macmillan Publishing Co., vol. 4, pp. 169–181. 16. Angell, M., & J.P. Kassirer. (1998). Alternative medicine—the risks of untested and unregulated remedies. New England Journal of Medicine 339:839–841, at 839. See also Boozang, K.M. (1998). Western medicine opens the door to alternative medicine. American Journal of Law & Medicine 24:185–212, at 204, defining quackery as any treatment that: “a. is implausible on a priori grounds (because its implied mechanisms or putative effects contradict well-established laws, principles, or empirical findings in physics, chemistry or biology), b. lacks a scientifically acceptable rationale of its own, c. has insufficient supporting evidence from adequately controlled outcome research (i.e. double-blinded, randomized, placebo-controlled trials), or d. has failed in well-controlled studies done by impartial evaluators and has been unable to rule out competing explanations for why it might seem to work in uncontrolled settings.”

Limits of Science and Boundaries of Access 17. As noted by Vandenbroucke and deCraen: “We should be grateful for debates about alternative medicine: They open our eyes to the nature of our reasoning in conventional medicine. We should forever keep an open mind, but, according to the late Petr Skrabanek, not so open that our brain falls out.” Vandenbroucke, J.P., & A.J.M. de Craen. (2001). Alternative medicine: a “mirror image” for scientific reasoning in conventional medicine. Annals of Internal Medicine 135:507–513, at 512. 18. “[H]omeopathic treatments are highly individualized and homeopaths do not comply with orthodox diagnostic criteria. This can create problems when conducting a standard randomized clinical trial.” Ernst, E., & T. Kaptchuk. (1996). Homeopathy revisited. Archives of Internal Medicine 156:2162–2164, at 2164. “Homeopaths often claim that modern trial methods are not applicable to homeopathy” and that “`controlled, randomized, double-blind studies have little significance with respect to homeopathic medical therapy.’” Id., at 2164. “[T]he efficacy of its therapies is intrinsically unmeasurable because therapy for every individual patient is, by definition, unique, an assumption that makes it difficult if not impossible to assemble meaningful study cohorts.” Davidoff, F. (1998). Weighing the alternatives: lessons from the paradoxes of alternative medicine. Annals of Internal Medicine 129:1068–1070, at 1069. 19. Margolin, A., S.K. Avants, & H.D. Kleber. (1998). Investigating alternative medicine therapies in randomized controlled trials. Journal of the American Medical Association 280:1626–1628. See also Shekelle, P.G., S.C. Morton, M.J. Suttorp, N. Buscemi, & C. Freisen. (2005). Challenges in systematic reviews of complementary and alternative medicine topics. Annals of Internal Medicine 142:1042–1047, at 1043. Traditional Chinese medicine does not have the concept of “placebo”, and it is difficult for practical as well as philosophical reasons even to construct a viable concept of “sham” insertion points for the needles. Moreover, within this approach there is no biochemical “marker” for active treatment, “nor is there one that would differentiate an active from a control treatment.” Id., at 1627. 20. Margolin, A., S.K. Avants, & H.D. Kleber. (1998). Investigating alternative medicine therapies in randomized controlled trials. Journal of the American Medical Association 280:1626–1628, at 1627–1628. 21. Kaptchuk, T.J., & D.M. Eisenberg. (1998). The persuasive appeal of alternative medicine. Annals of Internal Medicine 129:1061–1065. 22. For instance, we have little understanding about the nature of consciousness, of how it is that brain, or any other sort of matter, can have awareness. As suggested by one observer, “[n]obody has the slightest

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idea how anything material could be conscious.” Dossey, L. (2000). Prayer and medical science: a commentary on the prayer study by Harris et al and a response to critics. Archives of Internal Medicine 160:1735–1738, citing philosopher Jerry A. Fodor, at p. 1736. Science remains similarly puzzled over other mental/physical issues, such as evidence indicating that psychokinesis—the apparent ability of a human mind to affect physical events at a distance—may be a bona fide phenomenon. “For example, in Foundations of Physics, one of physics’ most prestigious journals, Radin and Nelson reported a meta-analysis of 832 studies from 68 investigators that involved the distant influence of human consciousness on microelectronic systems. They found the results to be ‘robust and repeatable.’ In their opinion, . . . ‘there is no escaping the conclusion that [these] effects are indeed possible.’ While these hundreds of studies do not involve actual prayer, they nonetheless deal with whether human intention can, in principle, affect the physical world at a distance. In recent years, researchers have also studied the effects of mental efforts to change biological systems. Scores of controlled studies have examined the effects of intentions, often expressed through prayer, on biochemical reactions in vitro, on the recovery rate of animals from anesthesia, on the growth rates of tumors and the rate of wound healing in animals, on the rate of hemolysis of red blood cells in vitro, and on the replication rates of microorganisms in test tubes. Testing prayer in lower organisms makes sense for the same reason we test drugs in nonhumans. We share physioloogical similarities with animals and bacteria; if prayer affects them, it may affect us as well.”

Dossey, L. (2000). Prayer and medical science: a commentary on the prayer study by Harris et al and a response to critics. Archives of Internal Medicine 160: 1735–1738, at 1735. 23. For discussion of the difficulties in measuring quality of life, see, e.g., Morreim, E.H. (1992). The impossibility and the necessity of quality of life research. Bioethics 6(3):218–232; Leplege, A., & S. Hunt. (1997). The problem of quality of life in medicine. Journal of the American Medical Association 278:47–50; Morreim, E.H. (1995). Quality of life in health care allocation. In: Encyclopedia of Bioethics, 2nd ed., ed. W.T. Reich. New York: Simon & Schuster MacMillan, Volume 3, pp. 1358–1361; Morreim, E.H. (1986). Computing the quality of life. In: The Price of Health: Cost Benefit Analysis in Medicine, eds. G. Agich & C. Begley. Dordrecht: D. Reidel Pub. Co, pp. 45–69; Testa, M.A., & D.C. Simonson. (1996). Assessment of quality-of-life outcomes. New England Journal of Medicine 334:835– 840; Coates, A., V. Gebski, J.F. Bishop, et al. for the Australian-New Zealand Breast Cancer Trials Group,

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Clinical Oncological Society of Australia. (1987). Improving the quality of life during chemotherapy for advanced breast cancer. A comparison of intermittent and continuous treatment strategies. New England Journal of Medicine 317:1490–1495; Gill, T.M., & A.R. Feinstein. (1994). A critical appraisal of the quality of quality-of-life measurements. Journal of the American Medical Association 272:619–626; Lehman, A.F. (1995). Measuring quality of life in a reformed health system. Health Affairs 14(3):90–101; Smith, A. (1987). Qualms and QALY’s. Lancet 1987; May 16: 1134–1136; Guyatt, G.H., D.H. Feeny, & D.L. Patrick. (1993). Measuring health-related quality of life. Annals of Internal Medicine 118:622–629; LaPuma, J., & E.F. Lawlor. (1990). Quality-adjusted life-years: Ethical implications for physicians and policymakers. Journal of the American Medical Association 263:2917–2921. 24. “The record of medical treatments is largely the chronicle of placebos. When subjected to scrutiny, the overwhelming majority of treatments, old and new, turn out to have no inherent therapeutic activity. And it is worth remembering that treatments now known to be of questionable value, from bloodletting to routine tonsillectomy, rested on compelling theories. Each theory may have been invalid, even wacky, but it made sense at the time. . . . But placebo treatment is not the same as no therapy. Studies have shown that although up to 70 percent of depressed patients improve after taking a placebo, depressed patients rarely improve while awaiting treatment. And in a placebo-controlled study assessing propranolol’s effect on mortality in myocardial infarction survivors, patients who took a placebo regularly (more than 75 percent of the prescribed dose) had half the mortality rate of those who took it less steadily. Finally, a recent study showed that people with schizophrenia who took placebos were less likely to relapse than those who didn’t receive any treatment.” Brown, W.A. (1998). The power of the placebo. Hippocrates 12(6):47–52, at 48–49. See also Jaret, P. (1997). The mind has the power to heal. Hippocrates 11(5):71–77. See also Horwitz, R.I., & S.M. Horwitz. (1993). Adherence to treatment and health outcomes. Archives of Internal Medicine 153:1863–1868; Brody, H. (1980). Placebos and the Philosophy of Medicine. Chicago: University of Chicago Press. 25. By one study of antidepressant medications, the placebo response in 2005 appears to be twice as powerful as it was in 1980. Spiegel, A. (March 8, 2010). The Growing Power of the Sugar Pill. National Public Radio; available at http://www.npr.org/templates/story/story. php?storyId=124367058; Stolk, P., M. ten Berg, M.E.H. Hemes, & T.R. Einarson. (2003). Meta-analysis of placebo rates in major depressive disorder trials. Annals of Pharmacotherapy 37:1891–1899.

26. A further purpose of blinding is also to minimize the chance that the perceptions and the reports of scientists and of research subjects will be shaded by the goals they hold for participating in the research. 27. Sullivan, M.D. (1993). Placebo controls and epistemic control in orthodox medicine. Journal of Medicine and Philosophy 18:213–231, at 223–225. 28. Schneiderman, L.J. (2000). Alternative medicine or alternatives to medicine? A physician’s perspective. Cambridge Quarterly of Healthcare Ethics 9:83–97, at 94. 29. Angell, M. (1984). Patients’ preferences in randomized clinical trials. New England Journal of Medicine 310:1385–1387. 30. Miller, F.G. (2003). Sham surgery: an ethical analysis. American Journal of Bioethics 3(4):41–48; Macklin, R. (1999). The ethical problems with sham surgery in clinical research. New England Journal of Medicine 341:992–996. 31. Merkatz, R.B., R. Temple, S. Sobel, et al. (1993). Women in clinical trials of new drugs. New England Journal of Medicine 329:292–296; Bennett, J.C. (1993). Inclusion of women in clinical trials—policies for population subgroups. New England Journal of Medicine 329:288–292; Freeman, T.B., D.E. Vawter, P.E. Leaverton, et al. (1999). Use of placebo surgery in controlled trials of a cellular-based therapy for Parkinson’s disease. New England Journal of Medicine 341:988–992; Macklin, R. (1999). The ethical problems with sham surgery in clinical research. New England Journal of Medicine 341:992–996. 32. Freeman, T.B., D.E. Vawter, P.E. Leaverton, et al. (1999). Use of placebo surgery in controlled trials of a cellular-based therapy for Parkinson’s disease. New England Journal of Medicine 341:988–992; Macklin, R. (1999). The ethical problems with sham surgery in clinical research. New England Journal of Medicine 341:992–996. 33. The manufacturer of a costly new drug for arthritis is hardly likely, for instance, to do a scientific comparison between its products and copper bracelets. Even a remote possibility of finding such an inexpensive remedy to be effective is enough to discourage such a study from being undertaken. And because copper is so inexpensive, the bracelet manufacturers can’t make enough profit to justify the expense of the research—particularly since they are not required to do any science so long as they make no health claims. Indeed, science is not merely unlikely in such scenarios. History has shown that sometimes even when high-quality scientific trials have been done, their results may not see the light of day if they are unfavorable to the study’s sponsor. See Rennie, D. (1997). Thyroid storm. Journal of the American Medical Association 277:1238–1243. 34. Garas, I., & A.J. Manolis. (1999). The economics of therapeutic advances: the paradigm of sympathetic

Limits of Science and Boundaries of Access suppression in chronic heart failure. Archives of Internal Medicine 2634–2636, at 2635. Others have likewise observed that inexpensive, effective therapies tend to be ignored. See Goodwin, J.S., & J.M. Goodwin. (1984). The tomato effect: rejection of highly efficacious therapies. Journal of the American Medical Association 251: 2387–2390; Goodwin, J.S., & J.M. Goodwin. (1981). Failure to recognize efficacious therapy: the history of aspirin treatment for rheumatoid arthritis. Perspectives in Biology & Medicine 25:78–92; Lederle, F.A., W.A. Applegate, & R.H. Grimm, Jr. (1993). Reserpine and the medical marketplace. Archives of Internal Medicine 153:705–706. 35. As noted by Feinstein, clinical research, as opposed to basic science and laboratory research, has long been looked down upon as being somehow inferior “applied” work. As a result, until recently funding has focused mainly on the latter and not on the former. Feinstein, A.R. (1994). Clinical judgment revisited: the distraction of quantitative methods. Annals of Internal Medicine 1230:799–805. And as noted by other commentators, those who use guidelines “cannot help but notice that guideline developers must often reckon with research that is modest in rigor, discordant, or nonexistent. Although most guidelines are an amalgam of evidence and expert opinion, methods of integrating knowledge and experience into guidelines, particularly when data are sparse, are neither as mature nor as transparent as methods of incorporating research results.” Cook, D., & M. Giacomini. (1999). The trials and tribulations of clinical practice guidelines. Journal of the American Medical Association 281:1950–1951, at 1950. 36. Dalen, J.E. (1998). “Conventional” and “unconventional” medicine. Archives of Internal Medicine 158:2179–2181, at 2179. 37. Dalen, J.E. (1998). “Conventional” and “unconventional” medicine. Archives of Internal Medicine 158:2179–2181, at 2180. 38. Berwick, D.M. (1996). We can cut costs and improve care at the same time. Medical Economics 73(15):180–187, at 186. 39. Relman, A.S., & A. Weil. (1999). Is integrative medicine the medicine of the future? Archives of Internal Medicine 159:2122–2126, at 2125. Another estimate puts the figure even lower. “Richard Smith, editor of the British Medical Journal, [states that] ‘only about 15% of medical interventions are supported by solid scientific evidence. . . . This is partly because only 1% of the articles in medical journals are scientifically sound and partly because many treatments have not been assessed at all.’” Dossey, L. (2000). Prayer and medical science: a commentary on the prayer study by Harris et al and a response to critics. Archives of Internal Medicine 160:1735–1738, at 1736. 40. Committee on Quality of Health Care in America, Institute of Medicine. (2001). Crossing the

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Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academy Press, at p. 13 (citing E.A. Balas & S.A. Boren. [2000]. Managing Clinical Knowledge for Health Care Improvement. Yearbook of Medical Informatics. National Library of Medicine, Bethesda, MD, pp. 65–70). 41. In scientific research, evaluation of diseases and treatments “generally requires a priori hypotheses, randomization (to eliminate selection bias and confounding), homogeneous patients at high risk for the outcome, experienced investigators who follow a protocol, a comparative measure such as a placebo (if ethical), and intensive follow-up to ensure compliance. Under these circumstances, if a treatment proves to be better than a placebo (or a comparative measure), one can be reassured that the treatment can work. However, questions may remain about the ability of the treatment to work adequately in a broader range of patients and in usual practice settings in which both patients and providers face natural barriers to care.” Epstein, R.S., & L.M. Sherwood. (1996). From outcomes research to disease management: a guide for the perplexed. Annals of Internal Medicine 124:832–837, at 833. See also Feinstein, A.R., & R.I. Horwitz. (1997). Problems in the “evidence” of “evidence-based medicine.” American Journal of Medicine 103:529–535; Wells, K.B., & R. Sturm. (1995). Care for depression in a changing environment. Health Affairs 14(3):78–89, at 80. “Clinical trials are not real life. To assess efficacy in as unconfounded a manner as possible, trials sometimes exclude certain patients (e.g., the elderly, the very young, those too sick, or those taking certain other medications). Any special vulnerability to adverse events in those groups will be missed.” Friedman, M.A., J. Woodcock, M.M. Lumpkin, J.E. Shuren, A.E. Hass, & L.J. Thompson. (1999). The safety of newly approved medicines: do recent market removals mean there is a problem? Journal of the American Medical Association 281:1728–1734, at 1733. 42. Epstein, R.S., & L.M. Sherwood. (1996). From outcomes research to disease management: a guide for the perplexed. Annals of Internal Medicine 124:832–837. “The failure to account for the effects of comorbid and associated conditions on the clinical outcome of chronic diseases is reflected in the common disjunction that occurs between the efficacy of an intervention, such as a drug used in a clinical trial, and the lack of effectiveness of the same drug used in clinical practice. For example, as many as 60% to 80% of patients with heart failure have been excluded from clinical trials of angiotensin-converting enzyme inhibitor therapy owing to comorbid and associated conditions that tend to obscure the efficacy of the drug in improving functional capacity or prognosis. This standard practice in research has a rational basis. However, the clinician must treat 100% of the patients

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with heart failure, not just the 20% to 40% who are free of comorbidities and associated conditions. Moreover, the clinical effectiveness of drug therapy is often limited by the very comorbid and associated conditions for which patients were excluded from drug trials.”

DeBusk, R.F., J.A. West, N.H. Miller, & C.B. Taylor. (1999). Chronic disease management. Archives of Internal Medicine 159:2739–2742, at 2740. Regarding coronary bypass surgery, Gellins et al. observed that “only 4 to 13 percent of the patients who now undergo this operation would meet the eligibility criteria for the randomized controlled trials that established its efficacy.” Gellins, A.C., N. Rosenberg, & A.J. Moskowitz. (1998). Capturing the unexpected benefits of medical research. New England Journal of Medicine 339:693–697, at 694. See also Feinstein, A.R. (1994). Clinical judgment revisited: the distraction of quantitative methods. Annals of Internal Medicine 1230:799–805. 43. Friedman, M.A., J. Woodcock, M.M. Lumpkin, J.E. Shuren, A.E. Hass, & L.J. Thompson. (1999). The safety of newly approved medicines: do recent market removals mean there is a problem? Journal of the American Medical Association 281:1728–1734, at 1729. 44. Zugar, A. (1998). New way of doctoring: going by the evidence. Physician’s Management 38(2):41–44, at 42. As Eisenberg notes, “there is sufficient evidence to suggest that most clinicians’ practices do not reflect the principles of evidence-based medicine but rather are based upon tradition, their most recent experience, what they learned years ago in medical school, or what they have heard from their friends.” Eisenberg, J.M. (2001). What does evidence mean? Can the law and medicine be reconciled? Journal of Health Policy, Politics & Law 26:369–381. See also Mold, J.W., & H.F. Stein. (1986). The cascade effect in the clinical care of patients. New England Journal of Medicine 314:512–514; Fisher, E.S., & H.G. Welch. (1999). Avoiding the unintended consequences of growth in medical care. How might more be worse? Journal of the American Medical Association 281:446– 453; Franks, P., C.M. Clancy, & P.A. Nutting. (1992). Gatekeeping revisited—protecting patients from overtreatment. New England Journal of Medicine 327:424– 429; Burnum, J.F. (1987). Medical practice a la mode. New England Journal of Medicine 317:1220–1222; Hardison, J.E. (1979). To be complete. New England Journal of Medicine 300:193–194. 45. Hall, J.B. (2000). Use of the pulmonary artery catheter in critically ill patients: was invention the mother of necessity? Journal of the American Medical Association 283:2577–2578; Rapoport, J., D. Teres, J. Steingrub, T. Higgins, W. McGee, & S. Lemeshow S. (2000). Patient characteristics and ICU organizational factors that influence frequency of pulmonary artery

catheterization. Journal of the American Medical Association 283:2559–2567; Bernard, G.R., G. Sopko, F. Cerra, R. Demling, et al. (2000). Pulmonary artery catheterization and clinical outcomes: NHLBI and FDA workshop report. Journal of the American Medical Association 283:2568–2572. 46. ECRI. High-dose chemotherapy with autologous bone marrow transplantation and/or blood cell transplantation for the treatment of metastatic breast cancer. Healthy Technology Assessment Information Service: Executive Briefings, February 1995. 47. Stadtmauer, E.A., A. O’Neill, L.J. Goldstein, et al. (2000). Conventional-dose chemotherapy compared with high-dose chemotherapy plus autologous hematopoietic stem-cell transplantation for metastatic breast cancer. New England Journal of Medicine 342: 1069–1076; Lippman, M.E. (2000). High-dose chemotherapy plus autologous bone marrow transplantation for metastatic breast cancer. New England Journal of Medicine 342:1119–1120. 48. For example, Roberts et al. “carefully examined the data obtained from open studies at a time when they were considered highly effective by the patients as well as their physicians. They analyzed the use of glomectomies as a treatment for asthma, levamisole as an immunomodulator, photodynamic therapy and organic solvents for herpes simplex infection, and gastric freezing for ulcers. Seventy percent of the almost 7000 patients who participated in these open studies in the 1960s and early 1970s were found to have obtained good to excellent results from these modalities. This report shows that belief and expectancy of patients, and especially of their health care providers, played a critical role in determining the effectiveness of treatments later found to be nonspecific by scientific measures.”

Tausk, F.A. (1998). Alternative medicine: is it all in your mind? Archives of Dermatology 134:1422–1425, at 1423 (citing A.H. Roberts, D.B. Kewman, L. Mercier, & M. Hovell. [1993]. The power of nonspecific effects in healing: implications for psychosocial and biological treatments. Clinical Psychology Review 13:375–391). 49. Though physician practices vary relatively little in situations where strong consensus guides practice, as in the treatment of hip fractures, in areas where there is little consensus, practices vary widely, in ways not correlated with differences in patients’ condition. “The recent Dartmouth Atlas details less than a 2-fold variation in the treatment of hip fractures—30% higher than the national average to 25% below the average—most likely because there is strong evidence about the most effective interventions, and the medical community agrees on this evidence. . . . On the other hand, Wennberg also found an almost 6-fold variation in the rates of carotid duplex diagnostic procedures, from 20 to more than 115

Limits of Science and Boundaries of Access per 1000 Medicare enrollees, due largely to ‘no consensus among physicians about which patients should be screened with carotid duplex.’ In another example, there was a 5.5-fold variation in the use of coronary angiography, from 9.6 to 53.1 per 1000 Medicare enrollees, because ‘physicians disagree about how severe patients’ symptoms must be to warrant’ its use.”

Eisenberg, J.M. (1999). Ten lessons for evidencebased technology assessment. Journal of the American Medical Association 282:1865–1869, at 1866. See Wennberg, J.E. (1986). Which rate is right? New England Journal of Medicine 314:310–311; Chassin, M.R., R.H. Brook, R.E. Park, et al. (1986). Variations in the use of medical and surgical services by the Medicare population. New England Journal of Medicine 314:285– 290; Wennberg, J.E., J.L. Freeman, & W.J. Culp. (1987). Are hospital services rationed in New Haven or overutilized in Boston? Lancet 1:1185–1188; Welch, H.G., Miller, M.E., & Welch, W.P. (1994). An analysis of inpatient practice patterns in Florida and Oregon. New England Journal of Medicine 330:607–612; Wennberg, J.E. (1987).The paradox of appropriate care. Journal of the American Medical Association 258:2568–2569; Chassin, M.R., et al. (1987). Does inappropriate use explain geographic variations in the use of health care services? Journal of the American Medical Association 258:2533–2537; Wennberg, J.E. (1990). Outcomes research, cost containment, and the fear of rationing. New England Journal of Medicine 323:1202–1204; Leape, L.L., R.E. Park, D.H. Solomon, et al. (1990). Does inappropriate use explain small-area variations in the use of health care services? Journal of the American Medical Association 263:669–672; Leape, L.L., R.E. Park, D.H. Solomon, et al. (1989). Relation between surgeons’ practice volumes and geographic variation in the rate of carotid endarterectomy. New England Journal of Medicine 321:653–657; Wennberg, J.E. (1991). Unwanted variations in the rule of practice. Journal of the American Medical Association 265:1306– 1307; Cleary, P.D., S. Greenfield, A.G. Mulley, et al. (1991). Variations in length of stay and outcomes for six medical and surgical conditions in Massachusetts and California. Journal of the American Medical Association 266:73–79; Fisher, E.S., H.G. Welch, & J.E. Wennberg. (1992). Prioritizing Oregon’s hospital resources: An example based on variations in discretionary medical utilization. Journal of the American Medical Association 267:1925–1931; Greenfield, S., E.C. Nelson, M. Subkoff M, et al. (1992). Variations in resource utilization among medical specialties and systems of care: Results from the medical outcomes study. Journal of the American Medical Association 267:1624– 1630; Welch, W.P., M.E. Miller, H.G. Welch, et al. (1993). Geographic variation in expenditures for physicians’ services in the United States. New England

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Journal of Medicine 328:621–627; Miller, M.G., L.S. Miller, B. Fireman, & S.B. Black. (1994). Variation in practice for discretionary admissions. Journal of the American Medical Association 271:1493–1498; Detsky, A.S. (1995). Regional variation in medical care. New England Journal of Medicine 333:589–590; Guadagnoli, E., P.J. Hauptman, J.Z. Avanian, et al. (1995). Variation in the use of cardiac procedures after acute myocardial infarction. New England Journal of Medicine 333: 573–578; Pilote, L., R.M. Califf, S. Sapp, et al. for the GUSTO-1 Investigators. (1995). Regional variation across the United States in the management of acute myocardial infarction. New England Journal of Medicine 333:565–572; Ashton, C.M., N.J. Petersen, J. Souchek, et al. (1999). Geographic variations in utilization rates in Veterans Affairs hospitals and clinics. New England Journal of Medicine 340:32–39; O’Connor, G.T., H.B. Quinton, N.D. Traven, et al. (1999). Geographic variation in the treatment of acute myocardial infraction: the cooperative cardiovascular project. Journal of the American Medical Association 281:627–633; Wennberg, J.E. (1999). Understanding geographic variations in health care delivery. New England Journal of Medicine 340:52–53. 50. For an extensive discussion of the ways in which actual clinical practices can constitute overuse, underuse, and misuse of available diagnostic and therapeutic interventions, see Morreim, E.H. (1999). Playing doctor: corporate medical practice and medical malpractice. Michigan Journal of Law Reform 32(4):939– 1040, at 989–998. See also Chassin, M.R., R.W. Galvin, National Roundtable on Health Care Quality. (1998). The urgent need to improve health care quality. Journal of the American Medical Association 280:1000–1005; Bodenheimer, T. (1999). The American health care system: the movement for improved quality in health care. New England Journal of Medicine 340:488–492; Chassin, M.R. (1998). Is health care ready for Six Sigma quality? Milbank Quarterly 76(4):565–591. 51. In some cases clinicians point out, quite correctly, that the guidelines imposed by health plans sometimes have a very poor scientific basis. And yet other times the protests, based on an insistence that “every patient is individual” and “my patients are different,” amount to a claim that clinical medicine cannot be scientific in any thoroughgoing way. The clinical physician begins to resemble his rival providers in the alternatives. 52. For further discussion on the limits of guidelines’ scientific basis, see Morreim, E.H. (1999). Playing doctor: corporate medical practice and medical malpractice. Michigan Journal of Law Reform 32(4):939– 1040, at 981–989. 53. “[M]ainstream medicine can be criticized for overselling its own scientific legitimacy. ‘It’s reasonable to say that much of existing medicine has not met the

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standards that alternative medicine is being asked to meet.’” Brown, C. (1995). Alternative medicine comes to the OR. Medical Economics 72(17):207–219, at 218–219. 54. As one commentator observed, one view holds that everything that makes an individual an individual is outside of science. This is the art of medicine. However, as an alternate view has noted: “`Art kills. It was the art that gave us purging, puking, leeches, the gastric freeze, all that sort of stuff. There’s a science to the art of medicine.’” Zugar, A. (1998). New way of doctoring: going by the evidence. Physician’s Management 38(2):41–44, at 44. 55. Accordingly, the scorn that sometimes marks medicine’s appraisals of alternative approaches should be avoided. In a variety of instances, derision has been used as a weapon where better-quality arguments are unavailable. Through the 1950s, 1960s, and 1970s, for instance, standard medical textbooks like Harrison’s and Cecil’s treated vitamin therapy with a scornful, dismissive tone, using terms like “massive,” “carelessness,” “useless,” “indiscriminate,” “false,” “indefensible,” “wasteful,” “insidious,” “unnecessary,” “deplored.” Goodwin, J.S., & M.R. Tangum. (1998). Battling quackery: attitudes about micronutrient supplements in American academic medicine. Archives of Internal Medicine 158:2187–2191. Similarly, in the mid-1980s, one article in the New England Journal of Medicine scoffed at the notion of “antioxidants” (Gillick, M.R. [1985]. Common-sense models of health and disease. New England Journal of Medicine 313: 700–703), while another in the same journal pronounced dead the idea that human emotions have a causal role in illness. “[I]t is time to acknowledge that our belief in disease as a direct reflection of mental state is largely folklore.” Angell, M. (1985). Disease as a reflection of the psyche. New England Journal of Medicine 312:1570–1572, at 1572. Subsequent research findings have challenged such dismissals with considerable force. “[O]ne should remain humble about physicians’ own mixture of art and science. Not so long ago, leeches and frozen stomachs were in their domain, and many of their beliefs today must remain tentative.” Delbanco, T.L. (1994). Bitter herbs: mainstream, magic, and menace. Annals of Internal Medicine 121:803–804, at 804. 56. As noted by Paul Starr, medicine’s dominance of the health-care market is also a political phenomenon. Starr, P. (1982). The Social Transformation of American Medicine. New York: Basic Books. 57. Lazarou, J., B.H. Pomeranz, & P.N. Corey. (1998). Incidence of adverse drug reactions in hospitalized patients. Journal of the American Medical Association 279:1200–1205. 58. Institute of Medicine. (1999). To Err is Human: Building a Safer Health System. Washington DC: National Academy Press.

59. Coppes, J.M., R.A. Anderson, R.M. Egeler, & J.E.A. Wolff. (1998). Alternative therapies for treatment of childhood cancer [letter]. New England Journal of Medicine 339:846; Ko, R.J. (1998). Adulterants in Asian patent medicines [letter]. New England Journal of Medicine 339:847; LoVecchio, F., S.C. Curry, & T. Bagnasco. (1998). Butyrolactone-induced central nervous system depression after ingestion of RenewTrient, a “dietary supplement” [letter]. New England Journal of Medicine 339:847–848; Angell, M., & J.P. Kassirer. (1998). Alternative medicine—the risks of untested and unregulated remedies. New England Journal of Medicine 339:839–41; Winslow, L.C., & D.J. Kroll. (1998). Herbs as medicines. Archives of Internal Medicine 158:2192–2199. 60. See supra note 1. 61. Eisenberg, D.M., R.B. Davis, S.L. Ettner, et al. (1998). Trends in alternative medicine use in the United States, 1990–1997. Journal of the American Medical Association 280:1569–1575. 62. In 1990, the estimated total expenditure for alternatives was $13.7 billion, of which $10.3 billion was out of pocket. Eisenberg, D.M., R.C. Kessler, C. Foster, et al. (1993). Unconventional medicine in the United States. New England Journal of Medicine 328:246–252. 63. In the very different case of children, mandates for medicine can indeed be appropriate in cases where the illness or injury is life-threatening, and the ability of medical treatment to help is clear and substantial. Issues regarding children and alternative treatments would take this essay too far afield, however, and will thus at this point be left for another forum. 64. In recent studies, alternative treatments were mainly used for chronic conditions such as back problems, headache, anxiety, and depression. Eisenberg, D.M., R.B. Davis, S.L. Ettner, et al. (1998). Trends in alternative medicine use in the United States, 1990– 1997. Journal of the American Medical Association 280:1569–1575; Campion, E.W. (1993). Why unconventional medicine? New England Journal of Medicine 328:282–283; Eisenberg, D.M., R.C. Kessler, C. Foster, et al. (1993). Unconventional medicine in the United States. New England Journal of Medicine 328:246–252. 65. Exceptions can be made if some particular alternative were shown to be clearly, seriously harmful and without redeeming benefit—just as some drugs are removed from the market when their risks are determined to exceed their potential benefits. 66. Voelker, R. (2005). IOM points to need for more research, regulation in alternative medicine. Journal of the American Medical Association 293: 1178–1180. 67. Chan, E. (2008). Quality of efficacy research in complementary and alternative medicine. Journal of the American Medical Association 299:2685–2686.

Limits of Science and Boundaries of Access 68. Shekelle, P.G., S.C. Morton, M.J. Suttorp, N. Buscemi, & C. Freisen. (2005). Challenges in systematic reviews of complementary and alternative medicine topics. Annals of Internal Medicine 142: 1042–1047. 69. Herron, R.E., R.H. Schneider, J.V. Mandarino, et al. (1996). Cost-effective hypertension management: comparison of drug therapies with an alternative program. American Journal of Managed Care 2:427–437. 70. Micozzi, M.S. (1998). Complementary care: when is it appropriate? who will provide it? Annals of Internal Medicine 129:65–66, at 220–221; Bronfort, G., R. Evans, A.V. Anderson, K.H. Svendsen, Y. Bracha, R. H. Grimm (2012). Spinal manipulation, medication, or home exercise with advice for acute and subacute neck pain: a randomized trial. Annals of Internal Medicine 156: 1–10. 71. Weber, W., A. Vander Stoep, R.L. McCarty, N.S. Weiss, J. Biederman, & J. McClellan. (2008). Hypericum perforatum (St. John’s wort) for attention-deficit/hyperactivity disorder in children and adolescents: a randomized controlled trial. Journal of the American Medical Association 299(22):2633–2641. 72. Barrett, B.P., R.L. Brown, K. Locken, R. Maberry, J.A. Bobula, & D. D’Alessio. (2002). Treatment of the common cold with unrefined echinacea. A randomized, double- blind, placebo-controlled trial. Annals of Internal Medicine 137:939–946; Turner, R.B., R. Bauer, K. Woelkart, T.C. Hulsey, & D. Gangemi. (2005). An evaluation of Echinacea augustifolia in experimental rhinovirus infections. New England Journal of Medicine 353:341–348. 73. Avants, S.K., A. Margolin, T.R. Holford, & T.R. Kosten. (2000). A randomized controlled trial of auricular acupuncture for cocaine dependence. Archives of Internal Medicine 160:2305–2312. 74. Clegg, D.O., D.J. Reda, C. Harris, et al. (2006). Glucosamine, chondroitin sulfate, and the two in combination for painful knee osteoarthritis. New England Journal of Medicine 354:795–808. 75. Bensoussan, A., N.J. Talley, M. Hing, et al. (1998). Treatment of irritable bowel syndrome with Chinese herbal medicine. Journal of the American Medical Association 280:1585–1589. 76. Mangione, C.M. (2006). A randomized trial of alternative medicines for vasomotor symptoms of menopause. Annals of Internal Medicine 145:924–925. 77. Garfinkel, M.S., A. Singhal, & W.A. Katz. (1998). Yoga-based intervention for carpal tunnel syndrome. Journal of the American Medical Association 280:1601–1603. 78. Wilt, T.J., A. Ishani, G. Stark, et al. (1998). Saw palmetto extracts for treatment of benign prostatic hyperplasia. Journal of the American Medical Association 280:1604–1609. 79. Smyth, J.M., A.A. Stone, A. Hureswitz, & A. Kaell. (1999). Effects of writing about stressful experiences on

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symptom reduction in patients with asthma or rheumatoid arthritis. Journal of the American Medical Association 281:1304–1309. 80. Pittler, M.H., & E. Ernst. (1998). Horse-chestnut seed extract for chronic venous insufficiency. Archives of Dermatology 134:1356–1360. 81. Chrubasik, S., E. Eisenberg, E. Balan, et al. (2000). Treatment of low back pain exacerbations with willow bark extract: a randomized double-blind study. American Journal of Medicine 109:9–14. 82. Gould, K.L., D. Ornish, L. Scherwitz, S., et al. (1995). Changes in myocardial perfusion abnormalities by positron Emission tomography after long-term, intense risk factor modification. Journal of the American Medical Association 274:894–901; Ornish, D., L.W. Scherwitz, J.H. Billings, et al. (1998). Intensive lifestyle changes for reversal of coronary heart disease. Journal of the American Medical Association 280:2001–2007. 83. Hay, I.C., M. Jamieson, & A.D. Omerod. (1998). Ramdomized trial of aromatherapy: successful treatment for alopecia areata. Archives of Dermatology 134:1349–1352. 84. Byrd, R. (1988). Positive therapeutic effects of intercessory prayer in a coronary care unit population. Southern Medical Journal 81:826–829; Harris, W.S., M. Gowda, J.W. Kolb, et al. (1999). A randomized, controlled trial of the effects of remote, intercessory prayer on outcomes in patients admitted to the coronary care unit. Archives of Internal Medicine 159:2273–2278. 85. Spiegel, D., H.C. Kraemer, J.R. Bloom, & E. Gottheil. (1989). Effect of psychosocial treatment of survival of patients with metastatic breast cancer. Lancet 334:888–891. See also the effects of psychiatric interventions in prolonging the lives of patients with other malignancies: Fawzy, F.I., N.W. Fawzy, C.S. Hyun, et al. (1993). Malignant melanoma: effects of an early structured psychiatric intervention, coping, and affective state on recurrence and survival 6 years later. Archives of General Psychiatry 50:681–689. But see Spiegel, D. (2001). Mind matters—group therapy and survival in breast cancer. New England Journal of Medicine 345:1767–1768. 86. Adams, K.E., M.H. Cohen, D. Eisenberg, & A.R. Jonsen. (2002). Ethical considerations of complementary and alternative therapies in conventional medical settings. Annals of Internal Medicine 137:660– 664, at 662. 87. Mello, M.M., & T.A. Brennan.(2001). The controversy over high-dose chemotherapy with autologous bone marrow transplant for breast cancer. Health Affairs 20(5):101–118, at 110. 88. Peters, W.P., & M.C. Rogers. (1994). Variation in approval by insurance companies of coverage for autologous bone marrow transplantation for breast cancer. New England Journal of Medicine 330:473–477. See also Ferguson, J.H., M. Dubinsky, & P.J. Kirsch. (1993).

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Court-ordered reimbursement for unproven medical technology: circumventing technology assessment. Journal of the American Medical Association 269: 2116–2121. 89. Hoffman, S. (1999). A proposal for federal legislation to address health insurance coverage for experimental and investigational treatments. Oregon Law Review 78(1):203–274. 90. Moseley, J.B., K. O’Malley, N.J. Petersen, et al. (2002). A controlled trial of arthroscopic surgery for osteoarthritis of the knee. New England Journal of Medicine 347:81–88; Felson, D.T., & J. Buckwalter. (2002). Débridement and lavage for osteoarthritis of the knee. New England Journal of Medicine 347:132–133. 91. Tausk, F.A. (1998). Alternative medicine: is it all in your mind? Archives of Dermatology 134:1422– 1425, at 1423, citing A.H. Roberts, D.B. Kewman, L. Mercier, & M. Hovell. (1993). The power of nonspecific effects in healing: implications for psychosocial and biological treatments. Clinical Psychology Review 13:375–391. 92. Chassin, M.R., R.W. Galvin, National Roundtable on Health Care Quality. (1998). The urgent need to improve health care quality. Journal of the American Medical Association 280:1000–1005; Bodenheimer, T. (1999). The American health care system: the movement for improved quality in health care. New England Journal of Medicine 340:488–492. 93. See supra n. 49. 94. Wennberg, J.E. (1986). Which rate is right? New England Journal of Medicine 314:310–311. 95. Morreim, E.H. (1999). Playing doctor: corporate medical practice and medical malpractice. Michigan Journal of Law Reform 32(4):939–1040; Morreim, E.H. (1997). Medicine meets resource limits: Restructuring the legal standard of care. University of Pittsburgh Law Journal 59(1):1–95, at 47–52; Morreim, E.H. (1995).

Moral justice and legal justice in managed care: the ascent of contributive justice. Journal of Law, Medicine, and Ethics 23(3):247–265; Morreim, E.H. (1995). Diverse and perverse incentives in managed care; bringing the patient into alignment. Widener Law Symposium Journal 1(1):89–139; Morreim, E.H. (2000). Saving lives, spending money: shepherding the role of technology. In: Ethical Issues in Health Care on the Frontiers of the Twenty-First Century, eds. S. Wear, J.J. Bono, G. Logue, & A. McEvoy; Philosophy and Medicine Series; Dordrecht: Kluwer Academic Publishers, pp. 63–110; Havighurst, C.C. (1995). Health Care Choices: Private Contracts as Instruments of Health Reform. Washington, DC: The AEI Press; Kalb, P.E. (1990). Controlling health care costs by controlling technology: a private contractual approach. Yale Law Journal 99:1109–1126; Hall, M.A., & G.F. Anderson. (1992). Health insurers’ assessment of medical necessity. University of Pennsylvania Law Review 140:1637– 1712, at 1689–1693. 96. Morreim, E.H. (2006). Consumer-defined health plans: Emerging challenges from tort and contract. Journal of Health Law 39(3):307–348; Morreim, E.H. (1994). Redefining quality by reassigning responsibility. American Journal of Law and Medicine 20(1– 2):79–104; Morreim, E.H. (1995). Diverse and perverse incentives in managed care; bringing the patient into alignment. Widener Law Symposium Journal 1(1):89– 139; Morreim, E.H. (2000). Saving lives, spending money: shepherding the role of technology. In: Ethical Issues in Health Care on the Frontiers of the TwentyFirst Century, eds. S. Wear, J.J. Bono, G. Logue, & A. McEvoy; Philosophy and Medicine Series; Dordrecht: Kluwer Academic Publishers, pp. 63–110. 97. Morreim, E.H. (1995). Diverse and perverse incentives in managed care; bringing the patient into alignment. Widener Law Symposium Journal 1(1):89–139.

35 Just Expectations Family Caregivers, Practical Identities, and Social Justice in the Provision of Health Care JAMES LINDEMANN NELSON

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he Patient Protection and Affordable Care (PPAC) Act enshrines two laudable goals in its title—securing expanded access to health insurance and trammeling health care spending. Critics, however, have been quick to press the point that it is more likely to achieve the former than the latter. As analysts such as Theodore Marmor, Jonathan Oberlander, and Joseph White have effectively argued, the hopes pinned on comparative effectiveness research, health information technologies, and emphasis on prevention, while all excellent in their own way, are unlikely to derail the growth of health care costs, while the Act’s more focused efforts to rein in Medicare spending would affect, at best, only a relatively small part of the overall health care system. What was perhaps reform’s most promising engine for cost containment—a Medicaid-like program with widely expanded eligibility referred to as the public option—was stripped from the bill in favor of modest eligibility expansion, and even had its most ambitious version been realized, it would likely have covered no more than 10 million citizens (Marmor, Oberlander, & White, 2009; Oberlander & White, 2009). This anemic response to runaway expenses is bad news in general, and bad for reform in particular. It’s hard to see how gains in access to care can be maintained over the long term without the kind of deep economic and philosophical deliberations that are so conspicuously absent from political life in the U.S. It, may, however, be especially bad news for that large and growing portion of the health care workforce that has been pressed into increasingly complex and crucial service without pay, and very often with little or nothing in the way of training, supervision, or other support.

Health care’s voracious hunger for a larger and larger share of the GDP in the 1980s and early 1990s abated throughout much the rest of that decade due in large part to overall economic growth, but importantly also because of a sort of semi-voluntary conscription of tens of millions of unpaid, undertrained health care workers; the vigorous return of health care’s appetite in this century threatens to put greater pressure on this source of free labor and undermine even the inadequate resources on which they now rely. Despite the fact that reform has largely overlooked this sector of the health care industry, there is nothing the least bit marginal about its contributions—the work of some 34 million uncompensated caregivers is estimated by the AARP’s Public Policy Institute to have been worth $375 billion in 2008 (Houser & Gibson, 2008). This “draft” has largely escaped attention because of just who is being pressed into service. Responsibilities have been shifted from professional caregivers working in hospitals and other such sites, to caregiving relatives—family members and close friends—whose effort takes place significantly in patient homes. There is every reason to believe that relying more heavily on family caregivers will continue to be an attractive tactic. Increasingly complex forms of medical technologies are being more or less adapted to home use, and spouses, parents, and children remain inexpensive compared to registered nurses or respiratory technicians. Employment of advanced technologies can now be directed and monitored remotely, via “telemedicine,” speeding the process of turning homes into faux hospitals, and their inhabitants into health care professionals manqué (Arras, 1995; Bauer, 2001). Further, some features of health care reform—those that tend to favor home- and community-based care

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for people with chronic illness and disability— may actually accelerate this trend, without corresponding acceleration in the kinds of support available for caregivers. (Levine, 2009). While reform measures include some attention to providing training for family caregivers, and to issues arising when care needs to be coordinated due to patient shifts from various institutional to home settings and back, even with full funding and skillful implementation, it’s far from clear how adequately these measures will support family caregivers (Levine, Halper, Piest, & Gould, 2010). Support programs are underfunded in comparison to the magnitude of caregiver need (to say nothing of the extent of their contributions). With the excision in late 2011 of the CLASS (Community Living Assistance Services and Supports) Act from PPAC, health care reform’s most innovative idea for providing family support—the chance to purchase government-subsidized long-term care insurance, is off the table, and it seems unlikely that any similar effort will soon emerge (Gleckman, 2011). In a time so caught up with such preoccupations as evidence-based health care and comparative effectiveness research, it might seem natural to explore the kind of impact on the quality of patient care of the progressive deprofessionalization of health care provision. Continuing to divert responsibilities for patient well-being from highly trained and experienced professionals (who have tolerably clear role-related limits to the extent of the services they are supposed to provide), to an amateur population, often otherwise employed, and with no clear and socially recognized limits to their responsibilities, looks very much like a type of covert rationing. Though it does not require that any particular health care service be denied, or any special population be excluded (except, perhaps, those who lack families)—thus avoiding the most visible and controversial forms of rationing—deprofessionalizing a huge portion of the health care workforce achieves cost savings at the risk of a more generally distributed dilution in at least some crucial dimensions of the quality of care available to patients. What we do have plenty of reason to believe is that the consequences for family members being pressed into intense and prolonged caregiving roles are far from benign. In a pithy discussion of the increased role of informal caregivers in the new health economy, Carol Levine provides a bleak summary: “Individuals and families will be under increased pressure to pay more direct costs;

families will be expected to provide more handson, often technologically complex care; undertake greater burdens for longer times; and forego more educational, career and social opportunities” (Levine, 1999a, p. 342). Both questions of possibly decreased quality of care for patients (particularly if construed as a form of rationing) and questions concerning the “increased pressures” on caregiving individuals and families raise issues of distributive justice that remain underexplored by bioethicists. I will focus on the impact of these changes for care providers, in part because they raise philosophically interesting questions about justice and intimacy. Surely, it is only the fact that informal caregivers are typically family members that explains why they are so employed with only the faintest whimpers of protest; even in a culture with a notoriously spotty record of respect for women and people identified with ethnic or racial minorities, the notion that any other group could be expected to take on such tasks gratis is not credible.1 At the same time, at least some family caregivers who shoulder extreme burdens apparently find great value in the provision of hands-on care to those they love, and they are reluctant to turn to whatever alternative sources of care might still be available. Despite some recent attention to the ethical character of intimate associations (e.g., Brighouse & Swift, 2006), we still lack fully mature accounts of what societies may justly expect of families, and of what family members may justly expect of each other. In what follows, I aim to contribute to the development of such an account, and to trace out some implications bearing on whether the “impressment” of families into more, and more intensive, health care responsibilities, is defensible.

A R E FA M I L I E S B E I N G U N J U S T LY D O N E B Y ? Is it consistent with a defensible account of distributive justice to temper health care costs by establishing policies that transfer prolonged or intensive health care responsibilities from professionals to family members? This is a complicated question, in part because the trend has not resulted from some central planning agency that might reasonably be held accountable for the systematic effects of its decisions—in this respect, the “conscription” metaphor employed earlier is misleading. Rather, the migration of increasingly burdensome health care responsibilities from professionals to family members is a function of many decisions made by federal and state governments, by courts,

Just Expectations by different private insurers, and, perhaps, even by those insurance consumers who may have some measure of realistic choice about the kind of coverage to elect. This ambiguity about agency makes it tougher to determine who bears what responsibility for any resulting harms. It hardly seems plausible that any reliance on family for any kind of care constitutes an injustice, and so decisions tending to contribute to this trend incrementally may seem more or less innocent. Acknowledging that it is appropriate to expect families to sacrifice to at least some extent for their needy members introduces what I believe to be the most vexing complication. Assessing the justice of this kind of deprofessionalization of health care provision is caught up with those under-explored questions about what family members are entitled to expect of one another, and what kinds of contributions to social goals such expectations license. Consider, for example, currently dominant understandings of justice. Philosophical reflection about how goods and responsibilities should be distributed is often depicted as a matter of discovering and motivating ways of allocating the benefits and burdens involved in social arrangements that do not run afoul of some special moral character that human beings are thought to have. This special character is often indicated with notions like “inviolability” or “separateness.” John Rawls is fond of both notions; inadequate respect for the “distinction between persons” (Rawls, 1971, p. 27) is at the heart of his objection to utilitarian allocation schemes, and, in one of his memorable ringing phrases, he observes: “Each person has an inviolability founded on justice that even the welfare of society as a whole cannot override” (p. 3). Justice, then, is thought to involve considering people as individuals with certain moral prerogatives that must be respected, even if doing so should make everyone worse off than they otherwise would be. Consider people as members of a large “impersonal” social arrangement, in which the exploitation of variously marginalized groups and individuals endures, and the intuitive appeal of notions such as separateness and inviolability may seem compelling. Consider people as members of families— in which exploitation, while surely present, often coexists with affirmation, caring, and love—and the appeal flags. This shift in our intuitions may reflect the conviction that the relationships between members of tolerably intimate families are significantly different in morally important

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ways from those between people qua citizens of a state, or qua economic agents in a marketplace. In reasonably well-functioning families, people will generally find something more than opportunities to amuse or aggrandize themselves through interchanges with similarly motivated others. Such families are places where selves are, in important senses, formed, maintained, and shared. Individual interests abound in families, but so do shared interests, and even what might be called the interests of the family as a whole (Minuchin, 1974; H. Nelson & J. Nelson, 1995). Acknowledging that such shared and interdefined interests are often importantly characteristic of families does not require allegiance to any strong form of communitarianism, or any overly roseate view of families as homogenous and ideal havens; the presence of joint interests does not exclude the possibility of distinct and often conflicting interests.2 But the significance of such shared interests as there may be calls into questions the suitability of conceptions of distributive justice that are predicated on the primary significance of individuality and distinctness to clarify who is indebted to whom for what. The theoretical emphasis on the “distinctness of persons” is not the only problem in sorting out what family members do and do not owe to each other. Just as one does not have to be a communitarian to acknowledge morally relevant differences between personal relations qua citizen and personal relations qua family members, neither does one have to be a moral particularist to allow that families are rife with morally relevant particulars. Families tend to endure over significant periods of time, involve people in strong emotions, and play important and varied roles in how people understand themselves and others. The patterns of feeling and action, of duties and disappointments, and of what goes beyond both duty and disappointment pertinent to sorting out claims can differ from relationship to relationship within a family, from time to time within one family,3 and certainly from family to family. To know, for example, whether some assignment of burdens and benefits in a family is morally defensible, one is going to have to know a good deal about the particular family under consideration. Despite these difficulties, I want to argue that the shift of health care responsibilities to families does raise questions of justice that are both deeply serious and potentially tractable. There are features of families that make treating them as a standing reserve of labor for the health care

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system morally problematic, and that, in addition, render them particularly vulnerable to exploitation. My argument has two stages. First, I want to call attention to some specific and serious ways in which families tend to be vulnerable to the shifts of health care responsibilities. Second, I will argue that these vulnerabilities are salient from the point of view of distributive justice; there is reason, that is, to see the community as having a duty to deploy its resources to avoid, or at least ameliorate, the harms associated with intensive or prolonged family provision of health care.

T H R E E T H R E AT S T O FA M I L I E S I will employ three considerations to help illuminate what is at stake for families in the current trends in health care delivery. The first is their propensity for exploitation. It follows fairly directly from the ways in which family members in many instances do not regard their own interests as altogether distinct from each other’s. Families do not stand outside those circumstances that theorists from Hume on have recognized as both necessary for, and to necessitate justice (e.g., moderate scarcity of resources, personal interests). At the same time, they are institutions in which other kinds of value than cooperation for mutual gain, and hence other kinds of reasons for action, are extremely powerful. A nation, for example, might come to the reasonable conclusion that supplying the resources needed to satisfy certain citizen’s needs was an unreasonable or even flatly unjust drain on the common pool. Having decided that it need not or even ought not meet such needs, a nation might, in fact, simply let them go unmet; charity (or shame), although playing some role in public policy, is not an overwhelmingly strong motivator. Families might confront similar situations and engage in analogous reasoning leading to the same conclusion. Some of its members may have needs that are simply too great for the others to be expected to fill. But there are also considerations apart from justice—considerations of love, to take a prominent example—that may lead families to provide care over and above what could be expected of them as a matter of justice. This inclination to supererogation within their bounds makes families prime targets for exploitation by policies originating outside them. The second consideration highlights an important feature of the kind of risk that families face. In supplying care that is prolonged and intensive, family members can put in harm’s way what I will

call (following Christine Korsgaard) their practical identities. A practical identity is a “description under which you find your life to be worth living and your actions to be worth undertaking” (Korsgaard, 1996, p. 101). Korsgaard (1996) speaks of people having a “jumble” of such identities (“a human being, a woman or a man, an adherent of a certain religion, a member of an ethnic group, a member of a certain profession, someone’s lover or friend”) and regards these identities as providing reasons and obligations: “Your reasons express your identity, your nature; your obligations spring from what that identity forbids” (p. 101). Some practical identities seem to make more central contributions to our overall sense of self than others; some are more inextricably caught up with our convictions about the worthwhileness of our lives and actions. Further, our grasp on any of our practical identities is surely contingent; misadventure and mortality can take them all away. However, when human agency is involved in wrenching cherished practical identities away from us, the agents are at least presumptively culpable, as they would be for intentionally or negligently causing any serious harm. Reflecting on the importance of practical identities is on point because the kind of intensive caregiving increasingly demanded of families is not merely a matter of shifting resources from one area of an organization’s endeavors to another. Rather, it is likely to involve a restructuring of people’s most basic projects—those activities that are deeply implicated in some of the most fundamental and personally significant ways that people identify themselves. One’s ability to take on and maintain an identity as, say, a breadwinner, a professional, a student, or even a spouse, may be impaired or blocked. Sufficiently burdensome caregiving requirements also threaten to harm the character of both the family itself and its ability to discharge competently a central function: nurturing those capacities required for people to take on and pursue their practical identities. This is clearly the case for children being brought up in families: A family unable to foster the ability of its young to form practical identities, because all its energies are channeled into providing intensive health care or for any other reason, is truly a dysfunctional family. It is not, however, just the young who are vulnerable; a family’s adults, too, depend on each other to maintain their practical identities. Families typically provide some of the crucial material and expressive

Just Expectations resources that enable people to form, consider, endorse, revise, and live out their conceptions of themselves. The significance of practical identities reflects the extent to which people, even in close, interdependent, and intimate families, have distinct identities and basic projects. Indeed, reflection on practical identities calls attention to the way in which families actually contribute in important ways to the distinctiveness of their members. The third consideration I want to examine is the tendency of families to embody patterns of injustice, and for that tendency to be exacerbated by increased caregiving demands. Families are hardly immune from objectionable uses of gender and age as the basis for assigning duties and benefits to their members. The shift of health care responsibilities from professional to intimate realms threatens to worsen these biases. Women continue to be disproportionately assigned primary caregiving tasks, rendering them especially prone to further exploitation in circumstances that involve prolonged or intensive caregiving for family members (Brody, 2006). As women are typically the “least well off ” in families when it comes to having discretionary time and energy after responsibilities at home and in the workplace, social practices that make them still worse off in these respects are particularly suspicious. While all these considerations will figure in the development of my position, I will concentrate on the harm to practical identities, in part because it provides ways of thinking about “distinctness” and the forms of value characteristic of intimate associations, and in part because gender and generational justice issues in families can be vividly appreciated by deploying the notion of practical identities; oppression can be understood in terms of the links between the practical identities out of which goals and values emerge, and the social practices that constrict a person’s ability to form, pursue, and modify those identities.4

THE SOCIAL C O N S T R U C T I O N O F FA M I LY CAREGIVING AND THE CONSTRICTION OF PRACTICAL IDENTITIES In a pair of remarkable articles, Carol Levine has vividly illustrated ways in which these considerations can play themselves out in families confronting serious health care problems. In her New England Journal of Medicine “Sounding Board” essay, “The Loneliness of the Long-Term Care

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Giver,” Levine (1999b) writes of nearly a decade’s experience of being a family caregiver to her husband, gravely injured in a car accident early in 1990. She tells us of her nightmares of disconnections and strained connections with the health care system, nightmares that have haunted her awake, as well as asleep. Despite the fact that she is herself a distinguished bioethicist and health policy analyst, it took Levine years to appreciate that her nightmares stemmed not from any inadequacy of her own, but from a “system” that is decidedly unsystematic, and badly out of order to boot. A chilling sentence occurs early in the essay: “During my nine-year odyssey, I stopped being a wife and become a family care giver” (Levine, 1999b, p. 1587). What is perhaps most striking about this radical shift in one of Levine’s central practical identities is that she does not link it to the pervasive changes in her profoundly disabled husband, but rather to how she herself has been reconfigured by the set of social practices and understandings with which the health care system (and the broader society in which it is nestled) responds to the chronically ill and those whose lives are most closely caught up with the ill. During the weeks of her husband’s stay in the hospital’s intensive care unit, Ms. Levine reports that she remained a wife, treated with “kindness and concern.” Then came something of a liminal period, when her husband’s life was no longer in immediate danger, and she effectively disappeared from the attention of his professional caregivers. When the extent and permanence of her husband’s disabilities became clear, she reemerged into view, but under a decidedly different aspect. She was now only the manager and the hands-on provider of his care. During her husband’s stay in a rehabilitation center (“boot camp for care givers,” Levine labels it) she was initiated into her new role—the performer of “an unrelieved series of nasty chores,” expected to impoverish herself to procure Medicaid funding for the home care needed by her husband. One anecdote is particularly telling: A nurse stuck my husband’s soiled sweat pants under my nose and said, “Take these away. Laundry is your job.” A woman whose husband had been at the same facility later told me the same story—different nurse. (Levine, 1999b, p. 1588)

Mr. Levine was sent home from “rehab” a poorly treated, poorly diagnosed man, profoundly

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physically handicapped, cognitively challenged, emotionally labile—“not the same person in any sense.” And, in at least some important senses, neither was Ms. Levine. I have lingered on this difficulty story because it powerfully shows how deeply the experience of chronic illness and disability can penetrate the lives not solely of patients, but also the lives of those most closely bonded to them. It is not hyperbolic to claim that the Levines’ story indicates how current social practices for providing care to those with serious and chronic illnesses and disabilities can be life-threatening for family caregivers, in a biographic if not a biological sense. It shows how relatives and other bonded intimates pressed into extensive caregiving responsibilities risk the persistence of their central practical identities. It is worth underscoring that this damage is caused not by the flow of funding (although that is surely crucial), but by the way in which family caregivers are portrayed by the health care system with which they interact. In a companion article in Ms. Magazine, Levine gives another, more gender-specific, illustration of disparaging attitudes: When my husband’s prognosis became clear, and the long future stretched ahead of us, I looked for help. None was forthcoming. Even more appalling, the most judgmental responses came from women—nurses and social workers. Some nurses, admittedly overworked, were so resentful of my continuing to work [in her “outside” job] and failing to relieve them of their duties that I had to hire a “companion” to be with my husband in the rehab center until I arrived each day at 4 P.M. to feed him. When he screamed for help (regularly) or was uncooperative (even more frequently), I was blamed. (Levine, 2000, p. 44)

Levine goes on to note that the spouse of another patient, who visited with fanfare and flowers every few evenings, was effusively greeted by the nurses. This patient was a woman, her “wonderful” spouse a man. When Levine noted the discrepancy, a nurse told her: “You don’t realize how rare it is for men to stay involved” (Levine, 2000, p. 44). Carol Levine’s articles distinctively highlight two interrelated dimensions of the damage that family caregivers face. One of these dimensions is material—family caregivers do not generally command the financial resources to enable them to both care for their relative and maintain and develop the range of practical identities they

previously enjoyed. The other is expressive: Family caregivers—particularly women—are caught up in socially enacted narratives that tend to silence the diversity of caregiver identities and emplot them as caregivers plain and simple.5 There is nothing fundamentally idiosyncratic about Carol Levine’s experience. For example, in the United Hospital Fund of New York’s Special Report, Rough Crossings: Family Caregiver’s Odysseys through the Health Care System, the derangement of practical identities caused by family-provided health care is plain in case after case.6 Consider the story of Theresa and Robert Smith and their 18-year-old daughter, Jill, for instance. Jill was struck by a delivery van and suffered severe neurological trauma. She remained in a coma for 2 weeks, and when she emerged, she was unable to speak or control her limbs, bladder, or bowels. Jill needed to be strapped into her bed so that she would not injure herself. When inpatient insurance ran out after the second month, Theresa and Robert decided to care for Jill at home, finding themselves immediately caught up in a grueling caregiving practice that seemed to have no end. They campaigned tirelessly for a range of services for their daughter, including physical, occupational, and speech therapy, nursing care, and equipment. They also tried to secure good home-health aides to help care for Jill. Taking on these responsibilities required significant and systematic changes in the Smiths’ lives. Theresa cut her out-of-the-home job to part time, devoting the rest of her day to Jill’s needs, including overseeing the stream of home attendants who passed into and then quickly out of their lives. In the discussion of this case, we read: Robert received little attention from his wife. During evening meals, which were usually take-out, she would engage him in decisions about Jill’s care, and conflict often erupted. After a long day at the office he didn’t want to think about or second guess his wife’s preferences. Tension grew between them until they seldom spoke. They stopped going out alone together. Their intimate life ended. (Levine, 1998, p. 24)

In the story of the Smiths, the threat to practical identities posed by inadequate material support is plain. And although no one in particular is identified as propagandizing for a narrative of (female) caregiver self-abnegation, it is clear that the Smiths

Just Expectations have imbibed a toxic dose of the culture’s general stories about who draws the lot for caregiving. It is Theresa who cuts back on her job; it is Robert who seems to think that he is effectively released from sharing his wife’s responsibilities. Even the way the story is told seems influenced by these stereotypes. We are informed that “Robert receives little attention from his wife,” when the opposite might seem more accurate—Theresa did try to interact with Robert, but not in the way he preferred, so that he withdrew his attention. The Smiths’ spousal identities, as well as Theresa’s work-related identity, eroded. Most general results point in the same direction. Social scientists studying “the caregiving career” have noted that caregiving not only exerts significant pressure on the array of identities that family members maintain, but does so in a dynamic and steadily expanding fashion. In their study, Profiles in Caregiving: The Unexpected Career, Aneshensel and colleagues (1995) note “[typically] the caregiver role keeps expanding in its demands so that even with adjustments in other areas, it keeps a steady pressure on the boundaries of other roles in the constellation” (p. 37). Thus, even creative accommodation to new demands is not sufficient to ensure that the integrity of a family caregiver’s other practical identities is preserved. At the same time, the stories of the Smiths and the Levines also suggest that families regard the immense burden of intense, prolonged, and exacting care as worth bearing. This willingness can also be understood as a testimony to the importance that people place on the maintenance of practical identities. For if homebased care can erode and transmute family relationships, causing, for example, distinctively spousal identities to fail, alternative institutional care carries dangers of its own. It seems fair— indeed, important—to ask whether the Smiths would have been likely to hang on to any remnant of their identities as parents if their daughter had been institutionalized.

I S T H E R E A R I G H T TO “ FA M I LY C A R E ” ? I have aimed to illuminate various dimensions of harm that intensive and prolonged health care provision can pose to families, while acknowledging that such care can have value to families as well. Yet the kind of goods that many families find in providing care to ill or disabled relatives, and at least some of the social savings to be had from their involvement, do not require that lives and

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identities be as deeply harmed as in the stories retold here.7 More generous and generously available benefits allowing family-care providers respite from their tasks would help; greater acknowledgment on the part of the health care professions and of society of the important and expanding role of family in health care would also help. The imperative to spend resources down to the poverty level to qualify for Medicaid’s long-term care benefits seems a Draconian measure in an affluent society; need, rather than penury, could be the chief eligibility criterion. Family leave provisions, such as those guaranteed by the Family and Medical Leave Act of 1993, could be extended and strengthened (indeed, many Congressional efforts to do just that were marshaled in the Balancing Act of 2009 [H.R. 2047], sponsored by Lynn Woolsey [Democrat of California] which, perhaps tellingly, expired in committee); those who must relinquish or cut down on paid employment for caretaking purposes could be extended taxation and retirement fund support to ease the fiscal cost of substituting one sort of socially significant work for another. In addition, family care providers need information and a sense of connection and appreciation; the Internet might help with these needs. If telemedicine can add to the momentum behind refiguring the health care roles of family members, telecommuting might allow more family members to express their practical identities as workers, and enjoy the stress-reducing benefits that out-of-the-home work apparently can afford.8 Most of these proposals most directly target “material” conditions of the sort that imperiled some of the Smiths’ practical identities; others speak to the “expressive” conditions that damaged Carol Levine, the withdrawal of the community uptake that diluted her social standing as a wife. Changing the social perception of family caregivers is likely to require also changing their material conditions; if greater economic support for family caregivers made it easier for them to continue to lead rich and varied lives, it might be harder to view them as simply and solely the performers of those “unrelieved nasty chores.” The inverse may tend to be true as well: Although caring relatives ought to be cherished by health care professionals as the key allies they have become, such a reworking of attitudes is not likely to take place without a change in the material substrate. Yet life is full of misfortunes, and not all misfortunes implicate questions of justice and injustice. Many of the proposals canvassed above could

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reduce the savings drawn from increased reliance on family caregiving, and tempering health care spending is a crucial matter, from the point of view of justice, as well as of other perspectives. What is it about those misfortunes faced by family members in providing health care to their relatives that distinguishes them from, say, finding one’s self locked into a tedious job owing to an inability to get health care insurance elsewhere? Practical identities can be constrained or withheld if your salary is too small to satisfy your deep interest in contemporary art, or if your vertical leap is too short to play in the National Basketball Association or to dance with the American Ballet Theater. One conditional line of argument that family caregiving should be subvened by social resources is suggested by what seems a ready analogy between caregiving and illness. It is relatively common among bioethicists—and apparently among most of the people of the developed world—to think that health care needs are in some morally significant way among the most important human requirements, more akin to the need for education than to a penchant for collecting 18th-century violins or taking ski vacations. Maintaining my health, curing my illnesses, repairing my dysfunctions, easing my pain, staving off my mortality—all these tasks are caught up with a class of possible misfortunes that it is appropriate to provide for out of a community’s joint resources; health, or at least access to the health system, is a kind of good that a just society will make available to all its members. Among the many misfortunes people face, why is health care reasonably thought to enjoy this special status? One popular argument is that health care aims at securing a primary good—a good that aids us in the pursuit of every more specific vision of the good. I may, for example, pin my hopes on acquiring a gracious home, a prestigious job, and a charming and compliant spouse; you may regard all this as so much fluff, as a frivolous or even an immoral set of goals for a human life, preferring to build communities of resistance to entrenched powers and practices, to undermine patriarchal and capitalist systems. But we will both do better in achieving our aims if we are healthy, and we both have a better chance of being healthy if we have reliable access to health care. Even societies professedly neutral among its members’ conceptions of the good might justify ensuring access to health care by trading on the “plasticity” of the benefit of health.

A related, although distinguishable idea—the notion that health care is key to the maintenance of a “normal opportunity range”—has been prominently advocated by Norman Daniels (1985, 2008). Noting that some people—a rare few, presumably—may hold conceptions of the good that are not abetted by health, he argues that the ability to change one’s plan of life within a range normal for one’s species and to which we are otherwise suited is also rationally regarded as a significant good. If anyone were indifferent to having or lacking that ability, that would presumably be because she had either no interest in how she lived at all, or because she was absolutely convinced that her present plan of life was in no need of assessment or improvement. Holding appropriate allocation of social resources hostage to nihilism seems too strong a requirement, and it is unlikely that assumptions of infallibility are consistent with practical rationality. If the ability to revise one’s plan of life is an especially significant good, then interventions designed to maintain or restore normal species function (e.g., health care) may well be required for one to have that kind of opportunity. Neither notional nor practical revision may be possible if one is seriously ill. Daniels has been working to expand the vision articulated in his germinal 1985 publication to take account of the powerful ways in which social factors other than health care delivery significantly affect people’s health, and therefore their opportunities (Daniels, 2008). The analogous argument for socially supporting family health care provision can be seen as an expansion of similar themes, focusing on the question of what socially influenced factors other than health also affect some of our most deeply important opportunities.9 The argument hinges on the view that the ability to form and maintain a practical identity is as likely to be a primary good as is health. There are close ties between the idea of practical identity and the notion of a normal opportunity range. Illnesses and traumas are not the only impairments in our normal species function that can block our revising (or living out) a conception of the good. Forming practical identities is part of what is normal to our species, and the ability to do so is intimately caught up with our opportunity range. Indeed, one might think of the collection of practical identities open to a person as a way of specifying the range of opportunities normal to our species and to which the individual is otherwise suited. Yet importing the concept of practical

Just Expectations identities here adds something: it helps underscore just why our opportunity ranges are so significant. Seeing opportunities under the aspect of practical identities shows that their importance is not exhausted simply by the number of important things that we can or cannot do, but extends to matters of intelligibility and morality. Our practical identities, as understood by Korsgaard, are key to how we make sense of ourselves as beings for whom moral considerations matter, and whose lives have distinctive kinds of worth. While some practical identities will be less significant to a person than others, the same could be said about the impairments to opportunities caused by different illnesses. Accordingly, what undermines a person’s ability to form or maintain central practical identities is therefore, in general terms, as morally significant as what threatens her health. If the appeal to primary goods or normal opportunity ranges makes the provision of health care a matter of justice, then, by parity of argument, such appeals would motivate a similar conclusion with respect to provision of support for family-based care providers, at least in a society whose health care system relies on exacting, often identitydistorting, forms of family-provided care. It might be argued that, whereas a person cannot simply walk away from her ill body, one can refuse family caregiving responsibilities and their potential risks to practical identities. Such a position, however, both understates our freedom with respect to ourselves and overstates our freedom with respect to our families. Failure to provide care needed by a family member may be, for many people, little more consistent with the maintenance of central practical identities than would be suicide. I conclude that if arguments based on such notions as “primary goods” or “normal opportunity ranges” are successful in showing that access to a reasonable level of health care is guaranteed by an appropriate understanding of distributive justice, then access to a reasonable level of support for families providing burdensome health care is equally strongly supported. In the United States, of course, despite its notional commitment to “fair equality of opportunity,” and notwithstanding the passage of the Patient Protection and Affordable Care Act, such arguments have had only limited political effectiveness, regardless of their philosophical merits. But the conditional argument sketched here is also more ambitious than strictly required to show that “drafting” families to replace health care

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professionals without further ado is unjust. Considerations of ambiguous agency notwithstanding, the increasing constriction of opportunities to form, revise, and live out our practical identities posed by intensive family caregiving is not the result of natural causes. Rather, it results from a collection of decisions to shift costs from government or private insurers to families, an inexpensive and readily available labor source. That some families—or some people within them—may see themselves as having a moral obligation to take on these jobs does not imply that the social arrangements that put them in such positions are acceptable. There are, as I have tried to show, serious considerations justifying socially funded efforts to ameliorate the burdens of family caregivers quite apart from the conviction that we should avoid solving social problems in ways that rely on people’s propensities to allow themselves to be exploited. However, the fact that the particular situation facing American families now is a result of the efforts of morally responsible agents—policymakers, insurers, employers, employees—trying to make their own lot easier needs a positive moral justification that has not been forthcoming. Ignorance about the impact of these decisions is an increasingly implausible plea. At least when prolonged and intense familycare provision is at issue, then, reasonably affluent societies have as stringent a duty to provide families with the kind of support that will make such caregiving compatible with a reasonable chance for caregivers maintaining central practical identities, as they do to provide basic health care. Further, if people in the United States benefit by the kind of care increasingly loaded onto family members—then we have a justice-based reason to keep the provision of that care from being gravely harmful to features of human life that are very widely, very deeply, and very defensibly valued. Sadly, appeals to justice sometimes lack pragmatic clout. Yet where justice flags, prudence sometimes prevails. Many of us will find ourselves called upon to provide prolonged, difficult health care to those we love. We all have reason to ensure that our identities will remain rich and varied, that our lives as caregivers will not need to be lives of heroic sacrifice.10

Notes 1. The preponderance of informal caregiving is still provided by women, so cavalier social attitudes about women’s lives and responsibilities are no doubt part of

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the explanation of how the current situation arose and is maintained. 2. Some theorists of the family are quite convinced, however, that there are no good moral reasons for families not to become more formal, their interchanges governed by contract rather than implicit patterns of understanding and practice. See Okin, 1989. 3. What constitutes “one family” is also up for debate. Late-appearing “long-lost relatives” who assert authority over health-care decisions, and homosexual or otherwise queer partners, are just two fairly prominent instances where who is “really family” is sometimes disputed. 4. More direct discussions of gender justice in families can be found in Okin, 1989, and H. Nelson and J. Nelson, 1995, among other sources; Kittay 1999 is an excellent discussion. For an extended discussion of the relationships among identity, agency, and justice, see Nelson 2001. 5. This analysis is much influenced by Nelson, 2001. 6. The literature on family caregiving and dementia is full of similar stories. For representative examples, showing families seeking ways to both care for and to preserve other significant features of their lives, see J. Nelson and H. Nelson, 1996. 7. A fuller story of the impact on families and on practical identities of intensive tending for ill relatives would require the input of those who have studied family caregiving for disabled children, and of those family members themselves. Some have maintained that families involved in this type of caregiving do not fare notably worse than families otherwise engaged. See, for instance, Ferguson et al., 2000. 8. See Levine, 2000, p. 45. 9. Prolonged, exacting caregiving might itself be seen as one of the social determinants of health. For information on the direct threats of prolonged and exacting care provision to carers’ health, see inter alia, Schulz and Beach, 1999. 10. The original version of the chapter was much indebted to Hilde Lindemann, to Margaret Pabst Battin, and to a rich set of ideas provided by Joel Frader; this revision inherits these debts. Which is not to imply, of course, that my arguments or conclusions would be endorsed by any of these colleagues.

References Aneshensel, C., Pearlin, L., Mullan, J., Zarit, S., & Whitlach, C. (1995). Profiles in Caregiving: The Unexpected Career. San Diego: Academic Press. Arras, J. (1995). Bringing the Hospital Home: Ethical and Social Implications of High-Tech Home Care. Baltimore: Johns Hopkins University Press. Bauer, K. (2001). Home-based telemedicine: A survey of ethical issues. Cambridge Quarterly of Health Care Ethics 10:137–146.

Brighouse, H., & Swift, A. (2006). Parents’ rights and the value of the family. Ethics 117:80–108. Brody, E. (2006). Women in the Middle: Their ParentCare Years, 2nd ed. New York: Springer. Daniels, N. (1985). Just Health Care. Cambridge: Cambridge University Press. Daniels, N. (2008). Just Health: Meeting Health Needs Fairly. Cambridge: Cambridge University Press. Ferguson, P., Gartner, A., & Lipsky, D. (2000). The experience of disability in families: A synthesis of research and parent narratives. In Parens, E., & Asch, A. (eds.), Prenatal Genetic Testing and the Disability Rights Critique. Washington, DC: Georgetown University Press. Gleckman, H. (2011). Requiem for the CLASS act. Health Affairs 30 (12): 2231–2234. Houser, A., & Gibson, M.J. (AARP Public Policy Institute). (2008). Valuing the invaluable: The economic value of family caregiving, 2008 update. http://assets.aarp.org/rgcenter/il/i13_caregiving.pdf. Accessed May 1, 2010. Kittay, E. (1999). Love’s Labor. New York: Routledge. Korsgaard, C. (1996). The Sources of Normativity. Cambridge: Cambridge University Press. Levine, C. (1998). Rough Crossings: Family Caregivers’ Odysseys Through the Health Care System. New York: United Hospital Fund. Levine, C. (1999a). Home sweet hospital: The nature and limits of private responsibility for home health care. Journal of Aging and Health Care 11:341–359. Levine, C. (1999b). The loneliness of the long-term care giver. New England Journal of Medicine 340: 1587–1590. Levine, C. (2000). Night shift. Ms. Magazine 10:44. Levine, C. (2009). Health-care “reform” could overwhelm family caregivers. http://news.newamericamedia.org/ news/view_article.html?article_id=d20eab091af82f1 ad17004c5eaec4eb2. Last accessed April 1, 2012. Levine, C., Halper, D., Piest, A., & Gould, D. (2010). Bridging troubled waters: Family caregivers, transitions, and long-term care. Health Affairs 29(1): 116–124. Marmor, T., Oberlander, J., & White, J. (2009). The Obama administration’s options for health care cost control: Hope versus reality. Annals of Internal Medicine 150(7):485–489. Minuchin, S. (1974). Families and Family Therapy. Cambridge, MA: Harvard University Press. Nelson, H. (2001). Damaged Identities, Narrative Repair. Ithaca, NY: Cornell University Press. Nelson, H., & Nelson, J. (1995). The Patient in the Family. New York: Routledge. Nelson, J., & Nelson, H. (1996). Alzheimer’s: Answers to Hard Questions for Families. New York: Doubleday. Oberlander, J., & White, J. (2009). Public attitudes toward spending aren’t the problem. Prices are. Health Affairs 28(5):1285–1293.

Just Expectations Okin, S. (1989). Justice, Gender, and the Family. New York: Basic Books. Parens, E., & Asch, A. (eds.) (2000). Prenatal Genetic Testing and the Disability Rights Critique. Washington, DC: Georgetown University Press. Rawls, J. (1971). A Theory of Justice. Cambridge, MA: Harvard University Press.

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Schulz, R., & Beach, S. (1999). Cargiving as a risk factor for mortality: The caregiver health effects study. Journal of the American Medical Association 282: 2215–2219.

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36 Justice in Research on Human Subjects D AV I D B U C H A N A N A N D F R A N K L I N G . M I L L E R

INTRODUCTION The history of health research is filled with controversies about the justice or injustice of various studies, from Tuskegee to the HIV perinatal transmission trials in Africa.1 What makes research just? Which theories or principles of justice are appropriate for assessing the ethical propriety of health research? What standards should be used to ensure that benefits and burdens are distributed fairly? Under what circumstances should research be deemed exploitative? This chapter sets out to examine these and other questions. The horror of the Holocaust and the Nuremberg War Crimes Tribunal mark the first widespread public and professional notice of injustices inflicted in the name of medical research. In the aftermath of the brutal Nazi experiments, the Nuremberg Code placed great weight on the principle of respect for human autonomy, and consequently, stringent mandates for informed consent and voluntary participation. These principles were subsequently reaffirmed by the World Medical Association in the Declaration of Helsinki in 1964 (World Medical Association, 1997). Despite these declarations, it was not until the early 1970s that newspaper reports about the ongoing U.S. Public Health Service Syphilis Study at Tuskegee—research that began in the 1930s— provoked sufficient public outrage to force the U.S. Congress to address the ethics of publicly funded health research in the U.S. for the first time (Brandt, 1978; Curran, 1973). In response to the egregious misconduct by researchers at Tuskegee, the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research was convened by Congress in 1974. Their landmark Belmont Report was issued in 1978 (National Commission, 1979). The Belmont Report provided guidelines for the ethical conduct of health research and still stands as one of the most articulate expositions of the

rationale, warrants, and ethical principles that should guide the conduct of health research. Yet the controversies continue. Must potential donors of bio-specimens for genetic testing be informed of all potential tests for different diseases that could conceivably be performed in future research? What if the potential study results have implications that go beyond the individual’s interests, to issues of group identity (for example, are genes associated with mental health problems more common in one ethnic group compared to another)? Another issue: How should society think about proposals to conduct research on less expensive drugs that are likely to be less effective than the current standard of care (e.g., low-dose AZT to prevent perinatal transmission of HIV)? Do the potential benefits to the population outweigh the potential risks to the individual research participants (Buchanan & Miller, 2006)? There is increasing concern about inequities in the global burden of disease. Many people argue that priorities in the allocation of scarce resources for conducting research should be directed towards those health problems that contribute to the greatest proportion of the global burden of disease. Current evidence, however, suggests that 90% of all medical research conducted today focuses on health problems that affect only 10% of the world’s population (Global Forum for Health Research, 2001, 2004). Is there an obligation to conduct research on problems that affect the majority of the world’s population? On whom should that obligation fall? There is growing attention to the social determinants of health—that is, the effect of social factors such as relative income and level of education on health (Marmot, 2004; Wilkinson & Pickett, 2009). Yet the evidence is challenged by normative beliefs about individual responsibility. If justice is fundamentally concerned with the fairness of institutional arrangements, should national governments

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be obligated to make research on the social determinants a priority? How should the cost and quality of evidence provided by large-scale social experiments be compared with the social and scientific value of conducting randomized controlled trials with individuals? What makes research just? After a brief review of two prominent frameworks and key theories of justice, the main body of this chapter is organized into three sections, focusing on justice considerations at the institutional level, that of researchers, and finally the research participants.

PROMINENT JUSTICE F R A M E WO R K S In public debates, it has generally been easier to identify when health research is seen to be unjust than when it should be considered just. Four common types of injustices are subjecting participants to unnecessary and foreseeable harm; exploiting participants, where the researchers or sponsors accrue a disproportionate share of the benefits relative to the participants; unfair inclusion or exclusion of certain categories of participants from the benefits and burdens of research participation; and trust violations (e.g., improper or misleading informed consent). The Belmont Report and recent work by Ezekiel Emanuel and his colleagues have gained prominent attention for articulating frameworks to assess when research may be regarded as just. The Belmont Report recognized two principles of justice to be important in guiding medical research: the distribution of burdens and benefits should be fair, and equals ought to be treated equally (Kahn et al., 1998). As the report states: Who ought to receive the benefits of research and bear its burdens? This is a question of justice in the sense of “fairness of distribution” or “what is deserved.” An injustice occurs when some benefit to which a person is entitled is denied without good reason or when some burden is imposed unduly. Another way of conceiving the principle of justice is that equals ought to be treated equally. (p. 5)

It goes on to declare: Individual justice in the selection of subjects would require that researchers exhibit fairness; thus they should not offer potentially beneficial research only to some patients who are in their

favor or select only “undesirable” persons for risky research. Social justice requires that distinctions be drawn between classes of subjects that ought, and ought not, to participate in any particular kind of research, based on the ability of members of that class to bear burdens and on the appropriateness of placing further burdens on already burdened persons. (p. 7)

In the climate of the times, the Belmont Report concentrated on justice considerations internal to the research process, focusing on protecting research participants from harm and exploitation (rather than its social implications or other possible justice considerations). The recommendations of the National Commission were incorporated into detailed regulations governing research involving human subjects funded by the U.S. government. These regulations, known as the Common Rule (45 CFR §46, Protection of Human Subjects), specify the requirements of independent prospective review by institutional review boards (IRBs), reasonable estimates of foreseeable risks and benefits, and strict adherence to written voluntary and informed consent, including the conditions for which informed consent can be waived (Code of Federal Regulations, 1991). In a major review and synthesis of the most significant historical documents to date, Emanuel and his colleagues (2000, 2004) identified a set of eight standards for evaluating the ethical propriety of health research. The eight criteria that must be met to make research just are: (1) social value, (2) scientific validity, (3) fair subject selection, (4) favorable risk–benefit ratio, (5) independent review, (6) informed consent, (7) respect for enrolled subjects, and (8) community collaboration. Taken together, these eight principles constitute fair terms for inviting human subjects to participate in health research.

Scientific Value Health research is designed to answer scientific questions about the etiology, treatment, and prevention of disease. Without a valuable question or hypothesis, a study is not worth conducting. The risks to volunteers in studies lacking social value cannot be justified, making such research unjust. As the risks of a study increase, the value of the science should be proportionately more compelling. The fact that a study has potential for producing great social value, however, does not imply that grave risks to research subjects are justifiable.

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Scientific Validity To achieve the potential value of health research, studies must be designed with sufficient methodological rigor to provide a scientifically valid test of the hypotheses that can contribute to generalizable knowledge. If the study design lacks rigor, such that it cannot produce valid results, then the risks to human participants cannot be justified. The tensions between methodological rigor and other ethical requirements give rise to many challenging ethical issues—for example, in the use of placebo controls or deceptive research procedures.

Achieving a favorable risk–benefit ratio requires that risks must be minimized. The requirement to minimize risks does not mean that risks must be eliminated, as that would make almost all medical research impossible. Study designs should be reviewed to determine if they could be modified to pose less risk without compromising the study validity. Risk–benefit assessment, however, is complex, involving different dimensions (physical, psychological, social, etc.) and different timeframes. Its determination requires scrupulous judgment by the research sponsors, investigators, and research ethics committees.

Fair Subject Selection Fairness in subject selection typically concerns groups of human subjects regarded as “vulnerable.” Certain types of people are considered vulnerable because their characteristics or circumstances render them less than fully capable of making voluntary, informed decisions about research participation (Levine, 1986). Vulnerable populations include children, because they are dependent on adults and legally incapable of giving informed consent; mentally incapacitated individuals who are incapable of making decisions for themselves; prisoners, owing to the coercive environment of penal institutions; and penurious persons, who may be subject to undue inducement deriving from payment for research participation. As a rule, subjects who are vulnerable to exploitation or undue influence should not be recruited for research unless their participation is necessary to answer valuable scientific questions. But fair subject selection also requires that people are not arbitrarily excluded from research participation. For example, concern about undue inducement of economically disadvantaged individuals should be balanced against concern for avoiding discrimination and depriving participants of appropriate compensation for research participation (Pace et al., 2003).

Independent Review Prospective independent review of research protocols by IRBs was mandated by the U.S. federal government in response to revelations in the 1960s (Beecher, 1966) and 1970s of abuses of research subjects. Self-regulation by investigators was no longer deemed sufficient. Independent review is a key procedural safeguard for protecting research participants from the inherent potential of health research to compromise the welfare or rights of participants. The task of the IRB is to apply the substantive ethical requirements outlined above in their review, modification, approval, and oversight of research protocols.

Favorable Risk–Benefit Ratio Risk–benefit assessment is ethically required to judge whether the risks to participants are justified by the potential benefits of the proposed research. Three dimensions of risk are relevant: probability, magnitude, and duration. What are the chances that the research interventions will harm participants? How serious is the potential harm from the study interventions? How long is the potential harm expected to last if it occurs?

Informed Consent The purpose of informed consent is to ensure the free choice and self-determination of those who enroll in research. This requirement includes two components. First, research subjects must understand what their participation involves: the nature of the study, the procedures to be administered, the risks and potential benefits, alternatives to participation, and the right to decline or withdraw participation without penalty. Second, subjects must voluntarily agree to participate under those conditions. Respect for Enrolled Subjects Clinical research must be conducted with adequate safeguards to protect the welfare and rights of participants. These include procedures to protect privacy and confidentiality, monitoring the participants’ condition, terminating participation in case of adverse events, and informing subjects about risks and benefits discovered in the course of research or reported in the medical literature. IRBs must approve written plans to monitor the condition of participants. Investigators must report

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adverse events to their IRB and study sponsor in a timely fashion to determine whether to modify the study design, change informed consent documents, notify enrolled subjects, or stop the research.

Community Collaboration In later versions of their recommendations, Emanuel and colleagues added an eighth requirement, community collaboration, to address concerns about the potential for exploitation in research conducted in developing countries (Emanuel et al., 2004). According to this standard, researchers should develop a partnership with the host community. This includes involving community partners in determining the importance of the health problem; assessing the research value; planning and overseeing the research; and integrating the study findings into the health care system. It also entails respect for the community’s values, culture, and social practices and assurances that the community will benefit from the research. According to Emanuel and colleagues, research that meets all eight standards should be considered ethically acceptable. Nevertheless, the application of this framework leaves many issues of justice in health research unsettled. For example, this framework offers no guidance for setting priorities for health research. Likewise, in determining whether a clinical trial conducted in a disadvantaged country offers subjects a favorable risk–benefit ratio, what is the relevant standard of care for assessing risks to subjects in the control group? Is it the most effective treatment available in developed countries, or the local standard of care, which may not include medical treatment for the condition under study? Is it permissible for research sponsors in developed countries to test new treatments in poor countries that are unlikely to be accessible to the local populations? Pointing to the underlying problem, Beauchamp and Childress (2001) note that acceptance of a comprehensive and unified theory of justice has proven “elusive” (p. 226). To understand the source of ongoing debates, we present a brief outline of six major theories of justice. THEORIES OF JUSTICE Many controversies today can be traced to differing assumptions about the meaning of justice and the often-implicit invocation of different underlying theories of justice. Gaining a clearer idea of the origins of different views may not resolve these questions, but it will help clarify the terms of the debates.

Utilitarianism The theory of utilitarianism is commonly encapsulated in the axiom of the greatest good for the greatest number. For utilitarians, determining the right thing to do is a matter of assessing the consequences, calculating the costs and benefits of a range of possible actions and choosing that which will yield the best state of affairs. Utilitarians call for a distribution of research resources towards those problems that affect a majority of the population (whether nationally or internationally). They support research on less expensive but less effective interventions, which has the potential for producing greater benefits to the population as a whole with more widespread affordable distribution. They raise questions about how the shortterm benefits of new drugs should be assessed relative to long-term overall mortality trends (e.g., if millions of people experience short-term morbidity relief, is this a reasonable benefit relative to a very small number of excess deaths caused by the same drug?). The most formidable criticism of utilitarianism is that it disregards concern for the dignity and autonomy of the individual, and allows individual rights to be sacrificed in the name of a greater social good. Another criticism of utilitarianism focuses on the intractable problem of reducing all goods to a single metric and achieving consensus on what that metric should be. Egalitarianism Egalitarian theories of justice hold that persons should receive an equal share of social goods, based on fundamental respect for human dignity and the equality of the human condition. John Rawls (1971) presents the most influential egalitarian theory of justice today. Rawls developed his theory by asking what principles people would devise and accept if they did not know where they stood or where they would wind up on the social ladder. Behind this “veil of ignorance,” he argues that people would agree to a social contract based on three principles: a basic liberty principle, a principle of fair equality of opportunity, and a difference principle. The liberty principle holds that each person is to have an equal right to the most extensive system of basic liberties compatible with a similar system of liberty for all. The fair equality of opportunity principle maintains that positions are to be open to all under conditions of equality (i.e., persons with similar abilities should have equal access). It requires the elimination of not only formal discrimination, but also inequalities

Justice in Research on Human Subjects in opportunity that originate from the “social lottery” (such as the individual’s social class background). The difference principle holds that social and economic institutions should be arranged to benefit the least well off as much as possible. In a significant extension of Rawls’s work, Norman Daniels (1985, 2001) argues that if liberal democratic societies have a duty to protect equality of opportunity, then they must also have a duty to preserve the normal functioning of individuals. By impairing normal functioning, disease and disability restrict the range of available opportunities. Therefore, maintaining and restoring normal functioning is essential for protecting fair opportunity to participate in the social, political, and economic life of society. Based on this egalitarian theory of justice, people should have the opportunity to pursue the life plans that it would be reasonable for them to choose were they not ill or disabled. In terms of health research, this view directs attention to addressing the needs of the least advantaged members of society, in order to reduce or eliminate impediments in their ability to participate fully in social life. Daniels (2008b), for example, argues that this understanding of justice obligates research on reducing the social determinants of health and requires industrialized advanced nations to address the health needs of poorer countries. The right of individuals to determine the terms of their participation in research, and how, for example, their biological samples may be used derives from egalitarian theories based on respect for the autonomy of the individual. Several bioethicists have made the case that an obligation to participate in research can be derived from such a social contract and attendant theory of justice (Harris, 2005 Rhodes, 2005). One major criticism of egalitarian theories, in general, and of Rawls’s theory, in particular, is that they disregard the role of moral desert, giving people their due based on the merits of their contribution (Scheffler, 1992). As Samuel Scheffler points out, none of the most prominent contemporary versions of philosophical liberalism assigns a significant role to desert at the level of fundamental principle. . . according to the dominant philosophical defenses of liberalism that are current today, desert has no role whatsoever to play in the fundamental normative principles that apply to the basic social, political, and economic institutions of society. (pp. 301, 304)

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Scheffler traces this lacuna to an uncritical acceptance of a thoroughgoing naturalism [that] leaves no room for a conception of individual agency substantial enough to sustain such a notion. This problem, the problem of the relation between naturalism and individual agency, is of course a descendant of the problem of determinism and free will. (p. 309)

Capabilities Rawls’s theory has also come under attack from those who advocate a more radical egalitarian position (Brighouse & Robeyns, 2010 Robeyns & Brighouse, 2010), generally referred to as the capabilities approach. The most prominent exponents of this theory are Amartya Sen (1999, 2009) and Martha Nussbaum (1990, 1993) (see also Buchanan, 2008; Powers & Faden, 2006; Ruger, 2010). From a capabilities perspective, it is insufficient that social institutions be arranged such that they provide merely the opportunity for individuals to pursue their life plans, because those opportunities are cruel fictions unless people possess the capability to fulfill their plans successfully. Here, the key question of justice concerns what people are actually able to achieve. If people’s abilities are so stunted by existing social conditions that the range of opportunities that they can actually pursue is severely constricted, then that society cannot be just no matter how much people may believe that they have a fair opportunity to pursue the options perceived to be available to them. Rather, a just society is obliged to enable everyone to have the same capacity to pursue the full range of occupations and recreational activities that the most well-off segments of society enjoy, a position that Sen refers to as “substantive freedom.” A familiar example of this line of thinking may be found in the justification for social programs like Head Start. There is widespread acknowledgment that students from vastly disparate social backgrounds cannot be said to have the same opportunity to succeed in school, and hence, society must compensate for evident deficiencies in order to bring everyone up to an equal starting line. Interest in the social determinants of health derives considerable strength from this theory, especially in discussions of the justice of the international order (United Nations Development Program, 2007). Despite its intuitive appeal, Thomas Pogge (2010a) criticizes the capabilities approach for

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failing to provide a publicly defensible standard of justice. Pogge identifies three key problems: (1) the omission of any plausible proposal for how compensation for natural differences could be financed; (2) the intractable difficulty of enumerating the specific capabilities for which differences must be eliminated;2 and (3) the issue of stigmatization, which would follow from any attempt to identify which capabilities should be considered valuable, and which not.

Desert In theories of justice as moral desert, justice means giving people what they deserve, giving persons their due. Here, justice is based on merit: the quality of one’s life should be commensurate with the level of effective effort that one exerts to achieve socially valued goals. Good actions ought to lead to happiness, evil deeds to misery, and that happiness or misery should be consistent with the goodness or malevolence of people’s conduct. Hard work, intelligent choice, and self-discipline should be rewarded, and society bears no obligation to compensate for differences attributable to sloth, stupidity, and self-indulgence (Kekes, 2006). According to moral desert theorists, it is a mistake to assume that everyone is equally deserving of the good things in life, and likewise, that bad things must be borne equally. Theories of moral desert give central place to the idea of individual responsibility, a position that accepts, for instance, that individuals should do what they can to stay healthy and should be held accountable for the decisions that they make. Research and policy pronouncements on the “actual causes of death” (where behaviors such as smoking and overeating are indicted as the cause of heart disease, cancer, and so forth) appeal to principles of moral desert (McGinnis & Foege, 1993; Mokdad, Marks, Striup, & Gerberding, 2004). From this perspective, the phrase “social determinants” is too strong a term; it implies that people are compelled to smoke, overeat, or use drugs, by forces rooted in their social conditions. The moral desert position maintains that the vast majority of poor people of color who do not take drugs deserve to be commended for the decision, while those who do should be held accountable. Two major criticisms have been leveled at this theory. First, critics argue that perceptions of the credit due to individual initiative are, as a rule, vastly overrated. As Rawls states, “One of the fixed points of our considered judgments is that no one

deserves his place in the distribution of native endowments any more than one deserves one’s initial starting point in society.” Rather, such achievements are more properly attributable to the “social lottery.” Second, this theory is inherently teleological—that is, it is based on a particular conception of what a good life is for human beings. A good life is directed at achieving certain given ends that determine which deeds should be rewarded. In contrast, other modern theories of justice take as their starting point that there is little consensus on what represents a good life for human beings. According to these critics, any viable theory of justice must remain neutral as to the value of human ends or goals.

Luck Egalitarianism The final substantive theory of justice discussed here, luck egalitarianism, refers to the attempt to combine and reconcile egalitarian theories with theories of moral desert (Dworkin, 2000; Knight, 2009; Segall, 2010). Here, the essence of justice is limited to the moral imperative to improve the condition of people who suffer from brute bad luck. Justice demands that society should compensate for misfortunes that lie beyond one’s power to control, while at the same time, people should be held accountable for their autonomous freely chosen actions. Controversies about whether alcoholics deserve liver transplants find their origins in questions raised by the luck egalitarian position. Many major health policy debates fall along familiar liberal–conservative lines, according to one’s position with respect to the underlying issue of individual moral accountability (Eberstadt & Satel, 2004). Critics of luck egalitarianism state that the theory falls down on the very issue that it is intended to resolve, namely when actions should be considered to be the result of bad luck and when a matter of individual responsibility. Elizabeth Anderson (1999) claims further that the theory would lead to absurd conclusions, denying people basic entitlements due to momentary lapses of judgment. As she states, “First, it excludes some citizens from enjoying the social conditions of freedom on the spurious ground that it’s their fault for losing them. It escapes this problem only at the cost of paternalism” (p. 289). Given that it is unlikely that the issue of free will versus determinism will be resolved soon, debates about whether justice requires that society compensate for evident inequalities will continue (Wikler, 2004).

Justice in Research on Human Subjects Procedural Justice In light of the many conflicting theories of justice, ethicists suggest that, for many problems, the only fair way to resolve fundamental disagreements may be to invoke fair procedures for making decisions (e.g., democratic majority rule). The next section, on setting research priorities, illustrates the problem of different parties basing arguments about priority on different theories of justice, which leads to seemingly irresolvable impasses, which in turn gives rise to calls for a procedural solution. Common criticisms of theories of procedural justice relate to the problems of reaching agreement on the procedure itself (e.g., simple majority vote?) and specifying the participants who rightly should be involved in making the decision at hand. J U S T I C E O B L I G AT I O N S AT THE INSTITUTIONAL LEVEL In addition to many other important issues of justice, national debates about the Obama administration’s plans for health care reform have raised questions about the use of the scarce limited public resources designated for health research. The recent debut of the National Institutes of Health (NIH) “Road Map” and rollout of new initiatives under the rubric of “translational research” are responses to public pressures about gaining fair evident benefit in return for this significant social expenditure. Similarly, the daunting costs of new medical technologies have generated demands for policy changes in Food & Drug Administration (FDA) regulations governing their approval. Proposed reforms would require that manufacturers of new pharmaceutical products and medical technologies demonstrate their “comparative advantage”—that is, not only that they are effective but that they are at least as effective as available alternatives and/or cost-effective (Callahan, 2009; Institute of Medicine, 2009; Stafford, Wagner, & Lavori, 2009). Should society permit the introduction of new medications that are more expensive but show no greater health benefit than existing cheaper treatments? On what grounds is this standard to be judged fair and reasonable? In this section, we address the issues of just criteria for distributing limited health research funds; the tension between scientific and ethical standards in proposed studies of the social determinants of health; and the question of whether justice demands that priority be given to research focused on inequalities in health in economically developing countries.

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National Research Priorities In 2010, the NIH budget was $30.8 billion. Because funding comes from taxpayer dollars, assessing the justice of its distribution is imperative. The mission of the NIH is “to uncover new knowledge that will lead to better health for everyone,” but all needs cannot be addressed at once. How should fair and equitable concern for the health needs of different social groups be determined? What is fair in setting research priorities? The standard utilitarian position could be understood to require that there should be a strong link between disease burden and the allocation of research funds, with more funding directed towards those problems that account for a greater portion of the burden of disease. Drawing on this line of reasoning, congressional representatives have complained that the NIH spends much more per death from HIV/AIDS than other causes, such as cancer, health disease, or stroke. In response, egalitarians such as Daniels (1985, 2008a) have argued that, because HIV/AIDS strikes people at younger ages, it poses a more significant threat in terms of lost opportunity, and hence, it should take priority.3 In response to these conflicting directives, the NIH has tried to make its decision-making processes more transparent. A 1997 report, Setting Research Priorities at the National Institutes of Health, identified five criteria to guide distribution decisions: (1) public health needs, (2) scientific quality of the research, (3) potential for scientific progress, (4) portfolio diversification, and (5) adequate support of research infrastructure (Institute of Medicine, 1998). Under each area, the report enumerated further sub-criteria. The estimation of public health needs, for example, includes: • The number of people who have a particular disease • The number of deaths caused by a disease • The degree of disability produced by a disease • The economic and social costs of a disease • The need to act rapidly to control the spread of a disease. The Setting Research Priorities document declares that all of these criteria are relevant, and conversely, the use of any one of them alone would lead to unwarranted neglect of some diseases. Allocating funding only according to the number

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of deaths, for instance, would neglect chronic diseases that produce long-term disability and high costs to society, such as mental illness, dementia, and arthritis. A number of concerns have been raised about the adequacy of these criteria (Agres, 2004). One major criticism is that the criteria are so broad that almost any allocation decision can be justified by reference to these terms. Hence, common complaints are that decisions are driven more by scientific curiosity than by practical problemsolving, with undue emphasis on basic science over clinical application, and by politically motivated concessions to well-organized advocacy groups. Moreover, there are inherent tradeoffs in these criteria that cannot be readily reconciled. In this vein, Rebecca Dresser (2001) lists a number of dilemmas: Should the NIH assign highest priority to research on disorders and injuries that cause death, or significant disability? When, if ever, should the agency support studies addressing less serious health problems? How should funding be affected by a prediction that significant advances are unlikely in research on a lethal or seriously debilitating disease? What if studies addressing a less serious condition are believed to have a high likelihood of significantly benefiting people at risk for that condition?. . . When do lesser benefits to the many outweigh greater benefits to the few?. . . in what situations, [does] past neglect require compensatory justice—in other words an “affirmative action” approach to research funding? (pp. 81–82)

In fact, a 1997 report showed little correlation between NIH allocations and disease distribution or the costs to Medicare associated with 66 disease conditions and the 15 leading causes of death (National Institutes of Health, 1997; Gross et al., 1999). Due to the many conflicting considerations, Dresser stresses that it would be a mistake to conclude that such empirical findings demonstrate that the distribution of NIH funding is unfair. The more fundamental problem is that different concepts of justice are being invoked by different parties to the debate. Faced with conflicting and seemingly irresolvable principles of justice, social groups must often appeal to fair procedures to resolve their disagreements. Norman Daniels and James Sabin (1997) describe one such process for making allocation

decisions, a procedure they call “accountability for reasonableness.” Daniels and Sabin developed their proposal to assist priority-setting in medical care settings—specifically, insurers’ decisions regarding coverage of particular medical interventions—but their recommendations relate directly to setting research priorities. They state that the decision-making process will be perceived to be legitimate and fair if the system has four features: One key feature is the provision of publicly accessible reasons, that is, a public rationale, for decisions. A second is that the rationale must constitute a reasonable construal of how to meet the medical [or research] needs of a covered [or affected] population under acceptable resource constraints. A third key feature is that there be mechanisms for considering challenges to decisions that are made and for revisiting those decisions in light of counterarguments. . . [Fourth], there is voluntary or public regulation of the process to ensure that conditions 1–3 are met. (p. 307)

Regarding the fourth point, public regulation, the NIH has acknowledged that its interactions with the public are “generally weak” and professed the need for engaging the public to redress concerns about the fairness of its allocation decisions (Institute of Medicine, 1998, p. 7). If or when public input and oversight expand, the quality of public deliberations will still depend on the ability of its members to recognize their own assumptions about the meaning of justice and to deliberate conscientiously about the cogency of opposing arguments. Brock (1995) has delineated a helpful set of criteria for recognizing potential sources of bias or distortion in public discussions.

Research on Social Determinants of Health Over the past decade, there has been growing interest in and attention to the role of the social determinants of health in affecting the distribution of health in society (Daniels, Kennedy, & Kawachi, 1999; Marmot & Wilkinson, 1999; Wolff, 2009). Heated debates have followed in the wake of these claims. The desire for more definitive evidence has generated a novel problem in thinking about the justice of setting research priorities, one that involves balancing scientific and ethical criteria in deciding which types of studies should be funded. In the modern era, a hierarchy of research designs for assessing the quality of scientific

Justice in Research on Human Subjects evidence has become well established. At the pinnacle of this hierarchy is the randomized controlled trial (RCT), which is universally regarded as the “gold standard” of health research, because other research designs fail to control for various well-known threats to the validity of the research results. To test interventions designed to effect improvements in health at the community or population level, the most rigorous research design requires randomly assigning communities to the different study conditions, in what are called group-randomized trials. The feasibility of conducting group randomized trials, however, is undermined by at least three practical problems. A question of justice comes up about whether it is fair to deny funding to studies aimed at testing interventions targeting the social determinants on the grounds that they fail to meet the same standards of scientific rigor that clinical studies consistently achieve. The most significant challenge in evaluating the quality of proposed studies on the social determinants of health (or disease) is that randomly assigning communities to comparison conditions is generally not possible for pragmatic political reasons. For example, unscrupulous marketing practices are believed by many to contribute to the nation’s obesity epidemic. It is reasonable to hypothesize that restricting junk food advertising may reduce childhood obesity rates, but politically, it is not feasible to randomly assign counties or states to treatment and comparison conditions to test this hypothesis because powerful corporate interests have a vested interest in ensuring that such studies are never conducted. Likewise, public health advocates claim that lack of access to fresh fruits and vegetables and the design of urban landscapes that inhibit physical activity have a major impact. Evidence to support that view, however, is riddled with criticism based on the non-experimental research designs. Another problem is the feasibility of recruitment. Because such interventions are intended to produce effects at the community level (e.g., changes in a particular targeted morbidity rate for a geographic region), statisticians argue that the most appropriate unit of analysis is the community as a whole. Group-randomized trials, however, are highly susceptible to selection biases, differential histories (e.g., significant social events happen in one community but not in another), and contamination due to the inherently small sample sizes (Murray, 2001). That is, if the number of groups is less than 20, odds are that systematic

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differences between groups cannot be overcome by standard randomization procedures. In such situations, the recommended course is to use matched stratification procedures to balance the groups in term of health status, age, etc. Matching can be implemented, however, only if variables that significantly influence community dynamics are known in advance, and only if they can be used in identifying and matching communities. Even with such matching stratification procedures, a few unanticipated events that differentially affect the target communities (e.g., teens killed in a drunk-driving accident) can undermine the validity of the research results. Finally, such studies are expensive. Only a small number of group-randomized research designs have been conducted. The most well known is the COMMIT trial, in which 22 cities were randomly assigned to treatment and comparison conditions in an experiment designed to reduce smoking prevalence (Community Intervention Trial for Smoking Cessation [COMMIT], 1995a, 1995b). The cost of the COMMIT trial has been estimated at approximately $60 million, but unfortunately, as David Murray notes, “The disappointing results for several large trials have led some to question the value of group-randomized trials” (2001, p. 310). Given their high cost and dubious track record, it appears unlikely that any group-randomized community intervention trials will be funded in the foreseeable future. There are other technical scientific issues that we could list, but our point is to highlight the practical difficulties of conducting RCTs to ascertain the effects of suspected social determinants of health. Research proposals are ranked by panels of peer reviewers with heavy emphasis on the rigor of the research design, which is considered scientifically essential to ensure the validity of the study results. To continue the example above, how should a review panel compare studies aimed at testing obesity interventions, where one is designed to assess the effect of restricting advertising and others are designed to provide individual counseling or test new weight loss drugs? If the combination of practical difficulties poses insurmountable barriers to conducting the most rigorous research possible on these social determinants, then it is important to ask whether it is fair that such research proposals simply be rejected, as weaker research designs will inevitably be found to be inferior in competitive rankings. A more equitable solution would be to open allocation decisions to public discussion and allow

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the possibility that categorical funding be designated for research on the social determinants, where more appropriate scientific criteria, such as “weight-of-evidence” standards (like A.B. Hill’s criteria, based on items such as consistency in association, dose-response relationships, etc. [Hill, 1965]) could be used to assess the relative merit of studies of social interventions.

International Research Priorities Another question concerning the justice of institutional practices arises with respect to the distribution of research funds in relation to the global burden of disease (Gostin, 2010). Commentators have coined the phrase the “10/90 gap,” citing data that show that only 10% of all health research funding is directed towards problems that account for 90% of the world’s health problems, which are suffered predominantly in economically developing countries (Delisle et al., 2005; Global Forum for Health Research, 2001). For example, pneumonia, diarrhea, tuberculosis, and malaria together account for more than 20% of the global burden of disease, yet receive less than 1% of the total funds (public and private) devoted to health research. Concerned parties decry the enormous human and economic costs of such misallocation of resources. Although UN reports have generally framed accusations of the injustice of global health disparities in the language of capabilities’ theorists (United Nations Development Program, 2007), concerns about the distribution of research dollars have drawn largely on the standard utilitarian grounds that research resources should be directed towards problems that affect the greatest number of people. Initial reports on the 10/90 gap appeared more than a decade ago, yet there is little evidence to suggest that the argument is gaining traction and the gap is being closed. As above, there are problems in deciding how to measure disease burden. For example, as the prevalence of noncommunicable diseases such as heart disease, diabetes, stroke, etc., has risen globally—a phenomenon known as the “epidemiological transition”—disputes have cropped up about whether research conducted on these common health problems in developed countries should be counted as part of the research directed towards reducing the burden of disease in poor countries. Similar quandaries have come up with respect to where middleincome countries should be counted. Other theorists, however, have questioned whether utilitarian arguments are the most relevant grounds for analyzing questions of justice about this situation.

Many philosophers, Rawls among them, have long held that principles of distributive justice apply only to people who are interconnected in some way. Charles Taylor (1985, p. 289), for example, states that “distributive justice presupposes that men are in a society together, or in some kind of collaborative arrangement.” Here, the purpose of government is to protect the interests of its people, and based on the concept of compatriotism, any presupposed obligation to give equal weight to the interests of all human beings worldwide is unwarranted. Are American taxpayers obligated to support research on problems that do not affect them but only people living on the African continent? A widely accepted principle of justice maintains that it is permissible for governments to be partial by showing special concern for the interests of their own people. This lay feeling may help to explain why the utilitarian case has not gained greater purchase among the general public. In an important counter-argument, Pogge (2004, 2010b) refutes the basic tenet of this position, noting that its validity obtains only in cases where the actions of one group or one nation are not implicated in the diminished state of another. Pogge makes the case that the policies and institutions of advanced industrial nations actively perpetuate and aggravate the miserable health status of people in developing countries. As he states, conditions of life anywhere on earth are today deeply affected by international interactions of many kinds and thus by the elaborate regime of treaties and conventions that profoundly and increasingly shape such interactions. Those who participate in this regime, especially in its design or imposition, are morally implicated in any contribution it makes to ever-increasing global economic inequality and to the consequent persistence of severe poverty. (2010b, p. 13).

In short, a nation’s people bear responsibility for mitigating those disease conditions to which they have materially contributed, in this case by supporting governments that actively perpetuate world poverty. Malnutrition is the most significant risk factor for premature death in poor countries, and the number of chronically undernourished people now exceeds 1 billion, according to the FAO. To those people who claim that they have little say over foreign policy, Pogge (2010b) responds that such resignation cannot relieve citizens of their responsibility. People are implicated

Justice in Research on Human Subjects to the extent that they are unwilling to make the effort to challenge prevailing injustices and form, defend, and implement well-founded alternative policies.

J U S T I C E O B L I G AT I O N S OF RESEARCHERS At the level of individual investigations and the conduct of researchers, the most serious justice consideration remains preventing harm to the participants. People still die in experiments when they should not. Two studies in the early 2000s in the U.S. garnered widespread notoriety and condemnation for causing the deaths of two young participants. Jesse Gelsinger died in a gene transplant study, and Ellen Roche, a lab technician, died in a study designed to provoke a mild asthma attack (Steinbrook, 2002). In 2010, the Starting Antiretroviral Therapy at Three Points in Tuberculosis Therapy (SAPIT) trial in South Africa was stopped early by the Data and Safety Monitoring Board (DSMB) because one treatment arm had a much higher death rate than the other two. Critics rail that the study should never have been approved as designed (Philpott & Schuklenk, 2010). Questions of assessing potential harms and fair benefits are yet more complicated at the level of communities. In 2010, in an unprecedented legal settlement, Arizona State University paid $700 million to 41 members of the Havasupai Indian tribe to “remedy the wrong that was done” by using their blood samples for unauthorized genetic research (Gilbert, 2010). Tribe members believed that they had donated blood for research on diabetes, but investigators subsequently used the samples for unrelated purposes, including studies of the genetic basis of schizophrenia and evolutionary genetics pertaining to the tribe’s geographic origins. The tribe sued the University, claiming that they had not consented to these uses and that the research caused harm to the tribe’s identity and self-understanding. The case raises two important issues. First, it brings up questions about what constitutes adequate informed consent for the research use of stored bio-specimens. Are researchers doing due diligence when consent forms are framed broadly in order to cover the gamut of potential uses? The settlement suggests that broad consent is not acceptable. In response, Mello and Wolf (2010) propose a tentative compromise between the broad blanket approach found in the Havasupai case and the narrow specification of each and

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every imaginable future use. In their “tiered consent” framework, research participants should be “presented with a menu of options from which to choose, which may include general permission for future use, consent only for future uses related to the original study topic, consent for future uses unrelated to the original study topic, and specification that the investigators must obtain specific consent for any future use that differs from the original study” (p. 2). In defense of their proposal, they argue that it strikes the best balance between respecting participant rights to control the use of their bodily tissues, and enabling the advance of science. A more complicated question raised by this case concerns potential harms to socially identifiable groups (McGregor, 2007; Tsosie, 2007). If certain types of research, such as population genomics, have implications for geographically or sociologically defined populations—that is, where the risks and benefits are not borne solely by the individual but are likely to have a broader impact on a community—does the community have the same right to autonomy as the individual in determining its own future (Weijer, 1999; Weijer & Emanuel, 2000)? If so, then how should informed consent be obtained? In clinical research, the process of gaining informed consent is clear. The purpose of the research, its methods, and risks and benefits (if any) are explained and the individual decides whether she wants to participate. But how can this procedure be applied at the community level? We and our colleague Nina Wallerstein (2007) have identified three progressively more stringent standards of community consent: (1) IRB approval, (2) Community Advisory Boards, and (3) community engagement. Although IRBs are required to have at least one community representative, attention to community-level ethical considerations in IRB deliberations is only now emerging. For example, the newly revised voluntary IRB accreditation criteria recommend that IRBs “promote the involvement of community members, when appropriate, in the design and implementation of research and the dissemination of results” (Association for the Accreditation of Human Research Protection Programs, 2009). When individual consent processes are not feasible, however, IRB approval is permissible now only in situations where the risks are deemed sufficiently minimal that individual consent can be waived. While IRB considerations of community impact may be growing, the scope of investigations for

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which individual consent can be waived is currently restricted to relatively innocuous studies (e.g., mass media campaigns) and thus is not sufficient for many purposes. To permit research with potentially more powerful effects on communities, IRB approval alone cannot suffice. There must be a process that serves a comparable ethical function as individual informed consent, where the community as a whole can decide whether it is in their interest to participate, affirm their right to self-determination, and set the terms for avoiding exploitation. The principle of respect for community autonomy acknowledges that the community has a non-negligible stake in the decision to conduct research on its membership. The community must have a say, for example, in determining whether scarce resources are being diverted from more pressing priorities or result in other potentially important opportunities being lost. This right encompasses protection against exploitation, where exploitation is defined as one party taking unfair advantage of another. As Wertheimer (1996) explains, for exploitation to occur, it is not necessary for one party to harm another, only that the benefit to one side be disproportionate compared to the benefit to the other. Given the considerable power of the pharmaceutical and academic health research enterprise, it is critically important to establish a body with sufficient standing to set fair terms of participation and protect against the potential for exploitation (Brody et al., 2005; Emanuel et al., 2004). The community should have the capacity to negotiate fair benefits in return for their participation. The “ancillary duties” of researchers have received increasing attention in recent years, taking up questions about the extent of researcher obligations—for example, to provide medical care for the participants, to offer related health services, like HIV testing and counseling, and to share the results with the community (Belsky & Richardson, 2004; Macklin, 2004). The key point here is that the scope of fair benefits cannot be decided and endorsed by individual participants nor researchinstitution–based IRBs but only by the community itself. One way to accomplish this is to establish a Community Advisory Board. Researchers in the U.S. are making increasing use of “community ethical review boards” in parallel with IRB approval. While the voluntary solicitation of community ethical reviews is commendable, many questions remain, starting with the status and scope of their legal authority and issues of representation: Who can legitimately speak on

behalf of community interests? How should they be selected? What is the scope of their responsibilities? What sorts of decisions (e.g., research methods, budget allocations, personnel, etc.) should they be authorized to make? (Flicker et al., 2007). Given the range of unresolved issues in the functioning of Community Advisory Boards, community advocates have recommended that additional processes should be required to demonstrate respect for the community’s right to selfdetermination. Recommended procedures include interviews with stakeholders and key informants, focus groups, community surveys, community forums, and partnerships with existing community associations (Buchanan & Allegrante, 2007). As these discussions are now unfolding, there is an emerging consensus around a standard that stipulates that the more powerful the intervention and the greater the possibility of exploitation, the more demanding the process of gaining community consent should be in allowing research to be conducted in a given community. The most powerful interventions must implement processes that aim at maximum feasible participation.

O B L I G AT I O N S O F RESEARCH PA R T I C I PA N T S The release of a recent report by the Institute of Medicine (IOM) made national headlines, citing the “state of crisis” of the nation’s cancer trials (Institute of Medicine, 2010; New York Times, April 24, 2010). According to the IOM report, only 40% of studies designed to discover effective cancer treatments are completed. The IOM report identifies many reasons for this faltering system, among them poor public understanding of clinical research and how it affects them. Other reports indicate that an estimated half-billion dollars is spent annually on mass media patient recruitment advertising, yet less than 5% of eligible patients actually enroll (Sung et al., 2003; Young, 2010). Even though virtually everyone consumes overthe-counter or prescription medications, public polls indicate that less than 15% believe that clinical research affects them directly (Getz, 2008). Based on current rates of attrition, from recruitment to screening to enrollment to completion, it was estimated that 19.8 million people needed to respond to meet industry-sponsored needs alone in 2005, while only 2.8 million people volunteered in 1999 (Sung et al., 2003). Irrespective of practical problems with low rates of participation, ethicists have examined the

Justice in Research on Human Subjects normative issue of an obligation to participate in health research (Caplan, 1984; Harris, 2005; Orentlicher, 2005). In the wake of the Nuremberg Trial, the starting point for these discussions was that no one shall be coerced into participating; rather, people must give their autonomous informed consent. From this point, participation came to be seen as something that was not required by duty, but viewed rather as an extraordinary contribution. As Owen Schaefer and colleagues explain, “participation in research is akin to giving blood or donating to charity. Participation is supererogatory—while participants who put themselves at risk or inconvenience deserve praise, those who refuse to participate are not acting wrongly or unethically” (2009, p. 67). Against these views, others have argued that it is unfair for the many to benefit from the sacrifices of the few, noting that this issue should more properly be understood in terms of mutuality, reciprocity and the free-rider problem (Harris, 2005). The question of justice regarding individual participation is most persuasively framed in terms of a social contract. Based on egalitarian principles of justice, each person is required to do her fair share to advance the common good. Because everyone benefits from medical research and everyone, in principle, is the beneficiary of past health research, everyone is obligated to give his or her fair share by enlisting in further studies (Heyd, 1996). Rhodes (2005, 2008) puts forward a hypothetical example in which a society’s legislature passes a bill that would require every resident to perform some research service every 10 years. Such an obligatory system, she explains, could be set up to preserve respect for individual autonomy by allowing people to decide which research projects they want to join. A significant problem for this line of reasoning is growing public mistrust of the medical research system. In a 2008 survey, only 17% of the American public said they believe that clinical research studies are, in general, very safe. A 2007 Harris Poll found that 27% of the public distrusts the FDA “somewhat” or “very strongly.” That same poll found that only 31% of Americans believe that the FDA is effective at ensuring safety, down from 56% in 2004. Only 14% of the American public thinks that pharmaceutical companies are honest (which is comparable to ratings of the tobacco and used-car industries), and more than 70% believe that they put profits before people. Twenty-seven percent said they do not trust them to provide reliable information about drug side

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effects, and 45% said they do not trust the research sponsors to inform the public quickly when safety concerns about a drug are discovered (Getz, 2008). These perceptions create a fundamental problem for the case for a duty to participate. If due diligence in ensuring participant safety cannot be ensured, then an obligation to participate cannot be justified.

CONCLUSION Concerns about justice drive basic controversies about the conduct of health research involving human subjects. A firm grasp of fundamental principles of justice is essential for deliberating well and determining an appropriate balance between the two primary moral obligations of health research: subject protection and knowledge generation. Debates about the justice of health research have evolved from an initial focus on protecting participants from harm to setting research priorities and examining its broader impact on social groups. Debates about justice will continue, with new frontiers opening with respect to environmental justice, health enhancement technologies, and the social implications of genetic testing. To serve justice, sponsors, investigators, and research ethics committees must strive to ensure that both the means and the ends of research contribute to alleviating human suffering and contribute to the common good. Notes 1. The opinions expressed are those of the authors and do not necessarily reflect the position or policy of the National Institutes of Health, the Public Health Service, or the Department of Health and Human Services. 2. “It is obvious that it would be extremely difficult in the contemporary world to reach agreement on the four key points: on the list of valuable capabilities, on how to measure achievements with respect to each listed capability, on the relative weight of the achievements in regard to different listed capabilities, and on the relative value of the diverse overall endowments in respect to overall capability achievement” (pp. 49–50). 3. This position reflects the “fair innings” argument, the idea that everyone should have the opportunity to live in good health for a normal span of years (Nord, 2005; Williams, 2001).

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37 Just Genetics The Ethical Challenges of Personalized Medicine LEONARD M. FLECK

T

he phrase “personalized medicine” has a built-in positive spin. In theory, a simple genetic test could predict whether a particular individual will have a positive response to a particular drug or, alternatively, suffer costly and debilitating side effects.1 Individuals metabolize drugs at different rates. This is largely determined by genetic features of an individual. This is medically important because a fast metabolizer may diminish the effects of a drug and the intended therapeutic outcome. A slow metabolizer, however, may accumulate a higher concentration of a drug, with potentially serious adverse consequences. In the coming age of genomic medicine we will be able to do the genetic testing that will permit more accurate personal tailoring of medications in order to obtain the best therapeutic results. Such testing would seem to be medically and morally obligatory. This judgment does not strike me as being morally controversial. In other areas of medicine, most notably oncology, our emerging knowledge of cancer genetics raises serious ethical controversy. Extraordinarily expensive targeted cancer therapies have recently been developed (with costs in the range of $50,000 to $130,000 for a course of treatment). Most patients who receive these drugs gain relatively little in the way of prolonged life expectancy from them, but some patients might gain substantially more due to a responsive genotype, and genetic testing might help to identify such patients. These genetic tests would yield unvarnished good for both individuals, who would be spared pointless suffering from side effects, and society, which would be spared the enormous waste of limited financial resources.2 Furthermore, the cost of acquiring the complete set of genetic data on an individual has plummeted from about $2.7 billion a decade ago

to about $10,000 in 2010 and $1,000 within the next few years.3 Little attention has been devoted to some very challenging justice issues raised by these advances related to cancer genetics. How should we (citizens and physicians in a just and caring society) determine the precise characteristics of patients who would have a prima facie claim to access very expensive drugs that are likely to be therapeutically beneficial to them because of either the genetic characteristics of the individual or the genetic characteristics of their cancerous tumor? We should be mindful that the average extra weeks or extra months of life4 can cost $100,000 or more per patient. But, as we will see below, those averages often hide wide variations in gains in life expectancy. We might have one sort of moral problem if those extraordinary gains in life expectancy were randomly dispersed across the population of cancer patients being treated with a specific drug (and we had no way of identifying those patients before the fact). But what if those extraordinary gains are linked to patients with a specific genotype? And, what if we have the capacity to test for that genotype before any of these costly drugs are given? These possibilities raise more challenging problems of health care justice.5 What if only a small fraction of patients with a specific end-stage cancer would gain significant life prolongation (2 years or more) because they have a genotype that will respond more strongly to one of these drugs? Should they alone have a just claim to access that drug at social expense? And what if another fraction of that patient group would gain 5 extra months of life, which they would generally see as “worth it” relative to the risks and burdens associated with that treatment? Would they too have a just claim to access that drug at social

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expense, even though (from a cost-effectiveness perspective) the extra life gained might cost five times as much as the life gained by our first group?

FRAMING THE PROBLEM If we had unlimited resources and limited health care needs, there would be no problem of health care justice. We would meet all those needs, no matter what the cost, no matter how marginal the benefit. But this is contrary to fact, as I have argued, along with numerous other health policy analysts (Eddy, 1996; Daniels & Sabin, 2002; Fleck, 2009; Ubel, 2000). We have only limited resources to meet virtually unlimited health care needs. That means choices have to be made; priorities need to be established; the need for health care rationing is inescapable. This is not a trivial problem of justice since, very often, rationing decisions will focus on medical interventions that are extraordinarily expensive whose intent is life prolongation, but whose effects in reality are relatively small gains in life expectancy. The cancer drugs we are discussing in this essay are a paradigmatic example of the sort of medical interventions that will be a focus of rationing decisions. Fojo and Grady (2009) point out that we are paying $800,000 per quality-adjusted life-year (QALY) when these cancer drugs cost $100,000 or more for a course of treatment and yield small gains in life expectancy. They are writing about drugs used to treat non-small cell lung cancer that yield a gain in life expectancy of about 6 weeks. If buying those 6 weeks costs $100,000, what we are saying (in cost-effectiveness terms) is that we are willing to spend $800,000 to gain a full year of life. If every patient with every end-stage cancer6 had a right to this level of care (roughly 600,000 people per year in the U.S.), we would be saying (from a cost-effectiveness perspective) that it was worth $440 billion per year for such modest gains.7 Economists ask whether this is affordable costeffective health care. Health care ethicists ask whether this is either a just or prudent use of limited health care resources, given alternative uses of these resources where we could save more lives and/or life-years at a lower cost.8 Consider the following example. A recent trial of patients with advanced breast cancer compared treatment with paclitaxel alone to paclitaxel plus bevacizumab (Avastin, a targeted biologic).9 Median survival in those two arms was virtually indistinguishable: 25.2 months versus 26.7 months. One could say that bevacizumab increased median

overall survival by 6 weeks. However, when specific genotypes were analyzed. there were very marked median differences in survival. The median overall survival time was 37.0 months for the subgroup with the VEGF-2578AA genotype and 46.5 months for the subgroup with the VEGF1154AA genotype. In addition, if the VEGF genotype of an individual was AA/AA, median survival was 49.7 months. But if the patient’s VEGF genotype was AA/GA, median survival dropped to 30.2 months. And individuals with a VEGF genotype of CC/GG had a median survival of only 21.7 months. Finally, the AA/AA subgroup represented 7.6% of the cohort, AA/GA represented 11.4%, and CC/GG represented 32.9%. About 44,000 women die of breast cancer each year in the U.S. Roughly 35,000 of these women are HER-2 negative, which means they would be candidates for the treatment. If all those women received paclitaxel plus bevacizumab, that would represent a cost of about $3.5 billion for the bevacizumab. So how should we decide who, among all these women, would have a just claim to the therapy that included bevacizumab? What considerations of health care justice ought to determine our judgment in this regard? Should the fact that this is a “last chance” therapy be determinative, or that all these patients are among the “medically least well off,” or that human life is “priceless”? If any of these factors are determinative, then no distinctions will be made among these patients so far as access to bevacizumab is concerned. All of these women are doomed to die because of the advanced nature of their cancer. Bevacizumab will not cure any of them, no matter what their genotype. But if we consider cost-effectiveness alone, then the AA/AA genotype subgroup has the strongest just claim. Each QALY achieved there would cost about $50,000, and aggregate costs would be reduced to about $350 million.10 Would the AA/GA subgroup have just cause to complain if their access to bevacizumab were not socially underwritten? They would only gain 5 months in additional life expectancy, which would yield a cost per QALY of about $240,000. Aggregate costs for bevacizumab would then rise to about $1 billion. This concession will hardly break the bank, given that in 2009 we in the U.S. spent $2.5 trillion on health care, or about 17.3% of GDP. However, the next genotype subgroup on the list, CA/GA, would achieve a median survival of 27.1 months. This group represented 20.9% of that patient cohort and an additional $1 billion

Just Genetics in costs. This group would gain on average only 2 extra months of life above median survival in the paclitaxel-alone treatment group, which yields a cost per QALY of $600,000. To many it might seem reasonable and fair to deny these individuals access to bevacizumab at social expense. We can imagine, however, an egalitarian-based argument from those with this last genotype. In brief, if society is willing to spend $100,000 to prolong the lives of each of those AA/GA individuals (same disease as me) for a very modest gain in life expectancy, then society ought to be willing to spend that same $100,000 for each of us with the CA/GA genotype. We too want as much life as possible of acceptable quality, even if it is a bit shorter than someone else’s. John Harris would make this argument against advocates for the use of costeffectiveness to determine which lives to save. He writes, “So long as people want to live out the rest of their lives, however long this may be, or looks like being, then they should be given the best chance we can give them of doing so and we should not choose between such people on any other grounds, but treat each as an equal.”11 We could add (in the spirit of John Harris) that the $600,000 figure is just a theoretical mathematical calculation. The actual amount of money spent on any of these patients would be the same $100,000, whether the gain is 2 months, 5 months, or 2 years. The moral challenge we are running up against is what Callahan has perspicuously dubbed the “ragged edge.”12 There is no perfectly neat, perfectly reasonable, perfectly just bright line that would distinguish socially worthy from socially unworthy health care expenditures. This is what has the potential to derail the health care reform efforts of the Obama administration because of the need to control health care costs and to accomplish this fairly. Ragged edges mean rough justice. Callahan would assert (correctly) that the “ragged edge” problem is ubiquitous in our health care system. Everywhere we are buying marginally beneficial health care at costs that are greatly disproportionate to those benefits because we are unwilling to draw the lines that would otherwise be necessary, but that generate social controversy. In that respect the cancer biologics are “merely” part of a trend. But they are at the most expensive end of that trend and, in effect, reinforce and legitimate that entire trend. That, in turn, is what threatens the stability and affordability of the Obama administration’s health care reform effort.13 The European Medical Agency recently approved panitumumab (Vectibix) and cetuximab

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(Erbitux) as first-line therapies with chemotherapy for patients with metastatic colorectal cancer “with no mutations in the codon 12 and 13 of the KRAS gene.”14 Both of these drugs are extraordinarily expensive: more than $100,000 for a course of treatment. Neither drug will effect a cure for the cancer. If these drugs are given to everyone with metastatic colon cancer, then the average gain in life expectancy will be a few weeks. If these drugs are given only to patients lacking the specified mutations, some of those patients might gain 2 extra years of life.15 About 40% of these patients have a KRAS mutation predictive of non-response to these drugs. Another 35% to 40% with wildtype KRAS will have an objective response to these drugs. To put all of this in context, about 55,000 patients in the U.S. will die of colorectal cancer in 2010. If all these patients had access to these drugs at $100,000 for a course of treatment, that would add about $5.5 billion per year to the cost of caring for these patients. In theory, several billion dollars could be saved if access to these drugs was restricted to individuals with a genotype that was most likely to be responsive to these drugs (the 35% to 40% with wild-type KRAS). It certainly seems that such a limited choice would be both morally and economically reasonable. Future research will, however, make this more morally complicated. Individuals with wild-type KRAS do not all show the same “objective response.” Only some will achieve maximal gains in life expectancy.16 Others will only gain extra months or a bit more than a year of additional life expectancy. We do not know whether additional genetic factors identified through future research will yield a picture of enhanced median survival comparable to what we described above in connection with advanced breast cancer. Would it be unjust to do the further research that will yield more restrictive access to these expensive drugs for patients with marginally responsive genotypes? What can be said to them, morally speaking, that would justify denying them that desired benefit? What did we say to the patients with advanced breast cancer? Would it be unjust to deny the whole cohort of patients access to these drugs at social expense who would only gain extra months of life (less than a year), especially when current practice often provides aggressive and expensive therapies to many sorts of end-stage patients who will gain only weeks or months of additional life? Should such current practices be given ongoing moral

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authority simply because they are current practice? This is again Callahan’s “ragged edge.” We are faced with “rugged moral terrain” (not just a bump in the terrain) because this sort of issue will become ubiquitous as pharmacogenetics advances over the next decade. The complexity and uncertainty associated with the science and clinical judgment will allow us to achieve no more than “rough justice.” That in turn raises the question of how rough “rough justice” can be and still be “just enough.” Age, for example, appears to be a prognostic marker for a poorer outcome with colorectal cancer: about 70% of deaths from colorectal cancer occur among those more than 65 years old.17 Should we distinguish among older patients who have more or less promising outcomes for purposes of determining who among them should have access to these expensive drugs? And if we were to adopt such a policy for these cancer patients, what should our policies be for patients in their 80s and 90s who today are routinely provided with dialysis and open heart surgery? The same sort of issue has arisen with regard to non-small cell lung cancer, which represents 85% of lung cancers in the U.S. In this case we are talking about 160,000 lung cancer deaths per year in the U.S. Again, if all these individuals had access to $100,000 worth of these drugs, that would add $16 billion per year to the cost of caring for this cancer. What the recent medical literature points out is that epidermal growth factor receptor (EGFR) inhibition is the key to useful treatment for non-small cell lung cancer. The drugs that achieve this are erlotinib (Tarceva) and gefitinib (Iressa), known as tyrosine kinase inhibitors (TKIs). But, more specifically, “numerous studies have now shown that mutations in the EGFR exons 19 and 21 are associated with higher response rates to EFGR TKIs.”18 Shepherd then goes on to write that a number of researchers went “so far as to suggest that EGFR TKI therapy should be limited to patients with mutations.” He added, “Subsequent studies clearly showed that patients with wild-type EGFR could also derive significant survival benefit from treatment even though they had lower response rates compared to patients with mutations [my italics].” There again is the “ragged edge.” If there were a neat division between responders and non-responders identifiable through some form of genetic testing, then we might well be able to make a strong moral and economic case for providing the drug only to the responders. This will be true in some cases.19 But the more common

medical reality seems to be that there is a gradient between the two ends of the spectrum. How can we possibly justly create a bright line that would determine who should have access to these extraordinarily expensive drugs and the medical benefits they seem to promise? As an aside, it should be mentioned that one of the “virtuous” features of some of these targeted therapies is that their side effects often tend to be mild compared to what are often debilitating side effects associated with most chemotherapy today (which makes these drugs even more desirable from the perspective of desperate patients). This leads Ramsey to conclude: “In the United States it is unclear whether selective use of erlotinib that is based on phenotypic or genomic information would be acceptable to clinicians or patients.”20 It might not be. But the companion question that needs to be asked is whether such selective use might be acceptable to taxpayers/insurance premium payers (future possible patients with currently unknown future health needs) and to health care administrators who must live within restrictive budgets. It is not at all obvious that these individuals would give the same answer as clinicians and patients. Again, we ask: How rough can the “rough justice” be that we ought to accept? We might be tempted to say that rough justice is not “just enough” and must be resisted. But what would the alternative be? Surely we should not defend the status quo in the U.S. as being morally preferable. The status quo means that individuals who are fortunate enough to have excellent health insurance provided through an employer would have access to these extraordinarily expensive cancer drugs at relatively little direct expense to themselves. If nothing else, this has the psychological effect of solidifying the idea that they “have a right” to these drugs. This, in turn, makes it all the more difficult to generate sustained political support for health care reform that would be aimed at covering the 50 million uninsured in our society with a reasonably comprehensive benefit package. This is because we could not afford to provide unlimited access to these very marginally beneficial non-costworthy cancer drugs as part of a national benefit package, especially if we were barred from taking account of enhanced outcomes associated with specific genotypes. Health care reform, as noted earlier, will require defining a benefit package that will be guaranteed to all. How should such a benefit package be defined in clinical practice in the light of the “ragged edge” problem? Should such judgments

Just Genetics be made at the bedside by individual clinicians responsive to the distinctive clinical circumstances of an individual patient? If so, what assurances would we have that other current patients in similar clinical circumstances and future possible patients in similar clinical circumstances would be treated justly and not arbitrarily denied very expensive life-prolonging care arbitrarily? We said earlier that “rough justice” was all that we could reasonably expect, given the complexity of our health care system. Would this clinical judgment approach yield outcomes that were within the bounds of “rough justice”? Or would outcomes tied to individual clinical judgment be “too rough,” morally speaking, too arbitrary, too idiosyncratic, or too costly? Should we rely instead for these judgments upon panels of clinicians in a range of specialty areas? Or should we rely upon managers and administrators of health plans and health facilities to trim the ragged edges and establish limits? And what should be the role of patients in making these judgments? Or must we rely instead upon future possible patients who are currently ignorant of their future possible health needs, and therefore better positioned to make such judgments impartially? What I am referring to here would be some broad and inclusive process of rational democratic deliberation (which we discuss below).

PHARMACOGENETICS A N D R AT I O N I N G : ETHICAL OPTIONS The key question that must be addressed in the remainder of this chapter is: What are the just claims of cancer patients to expensive cancer drugs when their genotype predicts only a very modest gain in life expectancy from treatment? Alternatively, what are the just claims of cancer patients to these expensive cancer drugs when they have a genotype that would predict a substantial gain in life expectancy in connection with these drugs? More specifically, is there a “just enough” way of establishing limits with regard to accessing these drugs when there is something approximating a seamless continuum of responses to these drugs from very strong to relatively weak responses? That is, can this specific version of the “ragged edge” problem be addressed “fairly enough”? I will argue that “rough justice” (with its ragged edges) can be achieved and legitimated through suitably managed processes of rational democratic deliberation. We begin with the claim that every patient faced with a potentially deadly cancer has a just

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claim to whichever of these targeted therapies offers some promise of benefit to him or her, primarily in terms of extended life expectancy. The moral justification for this claim might take any of several forms. One would be that these are “last chance” therapies, for patients with a terminal prognosis; they have no other options that are more promising than what these targeted therapies offer. An implicit premise in this argument is that it would be indecent and unjust to deny such desperate patients the only medical intervention that offers any hope of prolonged life. Other rationales can be combined with this one. One such rationale is that these patients are clearly among the “medically least well off,” and consequently they ought to have very high priority for whatever medical interventions might benefit them.21 Of course it can be pointed out that the major problem with these interventions is that they are extraordinarily costly. But the response is that human life is priceless. That is, if we have the medical or technological capacity to save or prolong a human life, then no amount of money should stand in the way of that purpose. That perspective is usually referred to as the “rule of rescue,” which we see acted on whenever an individual has been stranded at sea, on a mountain, and in some other desperate circumstance.22 I have bundled all these apparently disparate rationales together because they all have the same practical consequence. Specifically, they would result in a distortion of our health care priorities that would be unjust, imprudent, and unaffordable. As noted already, if all end-stage cancer patients had a just claim to these expensive targeted cancer therapies, the cost to our health care system in the U.S. would be $50 billion to $60 billion. In theory we could actually afford to do this. No persuasive moral argument can, however, be offered for restricting such social largesse to cancer patients: virtually all end-stage patients would have the same moral right to whatever medical interventions could offer them any gain at all in life expectancy. If extending life regardless of the cost were a moral obligation in some very strong sense, we would be left without resources to provide health care that “merely” improved quality of life as opposed to improving length of life, such as somewhat expensive medications that relieved pain or various technologies that restored functional abilities otherwise lost to disease or accident. An outcome such as this would have nothing to recommend it from the perspective of either justice or compassion.

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To be clear, I am not arguing that considerations of health care justice would never warrant providing patients with terminal diseases “last chance” therapies. There are morally important distinctions that need to be made in this regard. Effectiveness matters. AIDS patients in 1995 were doomed to die within 2 years once they were faced with opportunistic infections as a result of their severely compromised immune systems. But protease inhibitors were discovered in 1996, and, more recently, fusion inhibitors. The cost of fourdrug combination therapy is now about $35,000 per patient per year, but these drugs are very effective in restoring a reasonable quality of life for an additional 10 to 20 years. At some point HIV may mutate around these drugs and render them ineffective. AIDS patients would then be faced with very limited life expectancies, and, very likely, the same kinds of extraordinarily expensive, marginally effective life-pronging interventions as endstage cancer patients. At that point, if we were denying these expensive cancer drugs at social expense to patients who would gain only extra weeks or extra months of life from them, then the same morally relevant considerations would justify comparable denials to end-stage AIDS patients. This same line of argument for providing these expensive cancer drugs will apply to these patients, that they are among the “medically least well off.” For moral purposes, there are many kinds of patients who can be correctly described as being among the “medically least well off.” Some can be treated at very great expense very effectively; that is, they can be provided a reasonable quality of life for many good years. That, of course, removes them from the category of the “medically least well off,” at least as long as a specific therapeutic intervention continues to be provided. Thus, very young individuals may be diagnosed with Gaucher’s disease, which will be fatal if nothing is done for them. But if they receive the drug imiglucerase at a cost of $300,000 per year, their lives will be saved for an indefinite period of time at a cost of $300,000 for each saved year. This is very far outside the range of what is usually thought of as a reasonable cost-effectiveness ratio. What makes the difference, morally speaking, is that these are young lives of high quality that are sustained by this drug for long periods. This is the exact opposite of the outcomes associated with the expensive cancer drugs where the life sustained is of diminished quality for a brief period of time before death.

We should add that the logic of this moral argument does not put at risk the lives of persons with various disabilities, such as individuals who may have become ventilator-dependent quadriplegics as a result of an accident. Those individuals will often incur medical expenses approaching $1 million for the first year after an accident. But again substantial functional restoration is usually possible through intense rehabilitation and reliance upon a range of assistive technologies. If one reasonable basis for determining fair allocation of health care resources is reliance upon a fair equality of opportunity principle (Daniels, 1985), then persons with these sorts of disabilities will have strong just claims to the services and technologies that will protect for them access to a broad range of functional opportunities for many years. Regrettably, that range of opportunities is no longer available to individuals with end-stage cancers. What these individuals do have a strong just claim to is high-quality palliative care that will ease their dying, and often prolong their lives as well (Temel et al., 2010). This brings us to a second type of moral argument that might be invoked by these end-stage cancer patients with a genotype predictive of marginal benefits at best from these costly cancer drugs. They might say, “I do not want high-quality palliative care to ease my dying; I want these drugs that might prolong my living.” This plea is certainly understandable. Respect for patient autonomy is, however, often justifiably constrained by considerations of health care justice. That a patient desperately wants some scarce or expensive form of life-prolonging medical care does nothing to justify that claim so far as health care justice is concerned. To be clear, in the case of non-scarce health care resources, such as these cancer drugs, justice will not absolutely deny access to these drugs for these patients. What justice denies is that access would be at social expense. If individuals have the personal resources to purchase these drugs (without any type of social subsidy), then no weighty moral considerations would justify a policy that denied them access to those drugs. This is because no other patients would have their just claims to these drugs (or other high-priority health care) compromised by allowing the financially well off to buy these drugs. The assumption here is that a fair and reasonable societal judgment will have been made that these drugs for particular types of individuals in particular medical circumstances yield too little

Just Genetics benefit at too high a cost relative to limited social resources. This brings us to the third type of argument that might be advanced on behalf of individuals denied these expensive cancer drugs because they have a genotype only marginally responsive to these drugs. This would be an egalitarian argument. We earlier called attention to Harris (1985), who argued (in effect) that the size of the gain in life expectancy from these drugs was irrelevant to determining who would have a just claim. His view would seem to be that if anyone had a just claim to access these cancer drugs at social expense, then everyone who might benefit with only a few extra days of life would have an equally just claim to access those cancer drugs at social expense. He sees himself as defending a principle of equal concern and respect. In another of his essays (1987) Harris calls our attention to seven individuals who will all die in a matter of days without medical treatment. But if they have treatment, then six of them will live for a year. George, however, can live for 7 years if he has access to a treatment that costs five times as much as the treatment for any of the six other individuals. That means we could save more life-years at a lower cost per life-year saved by saving George and allowing the others to die. Harris then comments, “It does not follow that even if each person, if asked, would prefer seven years’ remission to one for themselves, that they are all committed to the view that George should be treated rather than that they should. Nor does it follow that this is a preference that society should endorse. But it is the preference that QALYs dictate” (Harris, 1987, p. 118). What Harris is rejecting in this passage is the utilitarian principle that he sees underlying the use of QALYs as well as cost-effectiveness analysis. Harris adds to his earlier point, “A society which values the lives of its citizens is one which tries to ensure that as few of them die prematurely (that is when their lives could continue) as possible” (p. 118). Finally, he writes, “The principle of equal access to health care is sustained by the very same reasons that sustain both the principle of equality before the law and the civil rights required to defend the freedom of the individual. They are rightly considered so important that no limit is set on the cost of sustaining them” (p. 122). In theory the principle of equal concern and respect would be satisfied if everyone with endstage cancers were denied access to these drugs. But Harris clearly rejects that view since he sees a

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society such as our own as obligated to save all the lives that can be saved. And in the last quoted passage he clearly rejects the view that monetary considerations should be used to make any distinctions or set priorities with regard to which lives to save. All such distinctions in his view represent disrespect for the rights of some individuals who would then die “prematurely.” Someone might claim that I ought to be more charitable in my reading, that Harris expressed these views in the late 1980s before the vast majority of these expensive lifeprolonging medical interventions had become part of health care today. However, in 2008 Harris (Daily Mail Reporter, 2008) expressed essentially the same views in a newspaper interview when he criticized the National Institute for Clinical Excellence (NICE) for recommending against having the British National Health Service pay for many of the same cancer drugs we are discussing in this essay. He contended there that if such decisions absolutely had to be made, it would be fairer to make them with the toss of a coin rather than the guidelines used by NICE. In commenting on Harris’ views we should note that a reasonable or moderate egalitarianism has much to commend it, morally speaking. But an unqualified egalitarianism is not morally defensible. Individuals with the same health care needs and roughly the same likelihood of having those needs effectively addressed ought to have the same just claims to health care resources. That is, their social status should not justify differential access to those health care interventions, nor should personal ability to pay justify differential access to those health care interventions so long as those interventions are more than marginally beneficial. Likewise, the quality of life of an individual (where we have in mind persons with a range of disabilities) should not justify differential access to these interventions, so long as none of those disabilities diminishes the likelihood of the effectiveness of that intervention below some threshold of marginal benefit socially agreed to and legitimated. Harris would likely not endorse the qualifiers I have added. Nevertheless, I will argue they are reasonable and not unjust. We return to our cancer drugs and the genotype differentials. Ten years ago we knew nothing of those genotype differentials with regard to these cancer drugs, but we did know then that on average these drugs yielded only extra weeks to extra months of life at extraordinarily high cost. We also knew there was a significant range of

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survival around that average, but we had no way of knowing which individual patients might be the fortunate beneficiaries at the upper end of that range. If resources for funding access to these drugs were absolutely restricted, then we could follow Harris’ advice and flip coins or use a lottery system to achieve an outcome that was reasonably just. We would have no justified moral alternatives for doing something other than a lottery because of our prognostic ignorance. This would be a reasonable egalitarianism. But it is doubtful that Harris would actually endorse this idea in the real world. Instead, what he has written suggests that he would demand that the dollars be made available to fund access to these drugs for everyone with a relevant cancer diagnosis. Ultimately, this position takes us back to the claim that human life is priceless and that the need for health care rationing is escapable. But we have already shown that there is nothing realistic or fair in practice about this position (Fleck, 2009, Chapter 3). If we consider one medical condition at a time and ask whether we (in the U.S.) can afford to provide medical interventions to treat that condition for all who have that condition with any degree of effectiveness for whatever it might cost, we will almost always have to answer in the affirmative. But the real world is one in which there are endless health care needs and a correspondingly enormous range of health care interventions that might positively effect a therapeutic outcome for those who have those needs. Making no discriminations among all those needs and interventions in order to protect the integrity of an ideological egalitarianism is neither rational nor just nor affordable. It is impossible to imagine a sort of daily Grand Lottery to determine whose health care needs would be met that day as being either morally or politically acceptable. Reasonable egalitarian commitments must be bounded by some utilitarian considerations (cost-effectiveness and QALYs), by some prioritarian considerations, by some libertarian considerations, and by some sufficientarian considerations. In short, a pluralistic conception of health care justice will be needed to address the real-world complexities of our health care system, and then the most it will be reasonable to expect will be “rough justice with ragged edges.” When Harris advocates that everyone with an advanced cancer have access to these expensive cancer drugs, no matter how minimal the gain in life expectancy, he is in effect saying that he has gotten rid of the morally troubling, potentially

discriminatory, ragged edges. That is, he is claiming that justice requires treating all within a certain class equally. Viewed in a perfectly abstract way, this claim is true enough—but it will have no relationship to the real world. In the real world individuals will have a cancer and some other lifethreatening comorbid conditions. An individual may be at risk of dying from his cancer in 2 years, but what is immediately threatening to end his life in the next 3 months is an advanced heart condition requiring a $300,000 artificial heart transplant. If we are committed to Harris’ strict egalitarianism, then it seems we would be morally obligated to treat both the cancer and the heart disease (or the kidney failure, or the COPD, or the end-stage liver disease, etc.). This is another ragged edge. Diseases overlap in persons in all sorts of complex ways. If we were very strict egalitarians, we would hardly be justified in treating only the lifethreatening heart disease of those with cancer. Again, the logical implication of this position is that the entire expanding universe of health care needs would have to be treated, no matter what the cost, no matter how minimal the benefit. In that way there would be no ragged edges and no risk of morally troubling discrimination. But this is unreal and unwise and unfair (given that we have lots of non-health needs as well). Tradeoffs must be made; health care priorities need to be established. How can this be accomplished as fairly as possible?

J U S T I C E A N D R AT I O N A L D E M O C R AT I C D E L I B E R AT I O N I have argued elsewhere (Fleck, 2009) that given their generality, our moral theories have only limited utility for addressing the very complex problems of fair health care rationing and prioritysetting, such as we face in connection with these cancer drugs and individual genotypes that predict different degrees of responsiveness. What we need to utilize instead are fair processes of rational democratic deliberation. Our general theories of health care justice demarcate the moral space within which these deliberative discussions occur. They function very much like constitutional principles reasonably balanced in relation to one another and always subject to future modification in the light of future experience that would justify their modification. That is, these principles constrain the democratic deliberative process and would de-legitimate deliberative proposals that

Just Genetics violated these boundaries. We recognize that there is considerable moral space within these boundaries, and consequently, for any particular health care rationing problem, there will often be multiple possible resolutions that could be deliberatively endorsed and that will be “just enough.” This will be true with regard to our genotype and cancer problem. Consider the following scenario. We (currently very healthy Americans who have little knowledge of what future serious health vulnerabilities might afflict us) want to control overall health care costs and maximize the health good we accomplish with the dollars we spend on health care. We think of ourselves as moderate egalitarians and moderate utilitarians. We are increasingly aware of what personalized genomic medicine in relation to cancer, and other life-threatening medical disorders, might mean for us, both personally and collectively. We are reflective enough that we can say to ourselves that we would not want to pay $100,000 of our own money for a cancer drug that promised us only an extra 2 months or an extra 5 months of life. We see that money as being better spent on a university education for our grandchildren. But we understand the logic of the “tragedy of the commons.” Our health insurance, whether public or private, is a shared resource. If others feel free to use $100,000 of that resource to gain 5 extra months of life in connection with cancer treatment, then we might be tempted to do the same, since the perception in both cases is that it is “someone else’s money.” That, of course, is a mistake. So all of us who have a right to access that common insurance pool must talk to one another for purposes of identifying reasonable restraints on the uses of those common funds. We are certain that 5 extra months of life is not worth $100,000, but 2 or 3 years of extra life would be worth that as long as it was of reasonable quality. Should we then agree with one another that the 7% of individuals with a particular cancer and a particular genotype who are likely to get 2 or 3 extra years of life from a particular cancer drug should have access to that drug at social expense? I realize that there is only a small chance that I might have the favored genotype for that cancer. But, then again, the chance that I would have that cancer and need that drug is very small as well. We can imagine that technology has moved forward, that we now have available a $1,000 genome test. That is, I can have my complete genome read for that very reasonable sum. I find out that I am

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not among the favored 7% who might have access to this drug for this type of cancer at social expense. What would I see as the practical implication of that knowledge for my currently very healthy self trying to determine with my fellow citizens whether public resources ought to cover the cost of that drug for that favored 7%? I might be tempted to be stingy since I would now know that I cannot be a beneficiary of having access to that drug. Of course, the same will be true of 93% of my fellow citizens. Now I know more than just this one medically relevant genetic fact about myself. I would know at least several thousand such facts, all of which will have only a tiny chance of having any practical medical relevance for me in the future. If I were to think about this in terms of pure medical and economic selfinterest, I might vote down the vast majority of genetically linked funding for specific medical interventions because the likelihood of my benefiting would be small and I would have to pay for benefits gained by fortunate others. And the same thought could motivate most of my fellow citizens to be similarly stingy. Nothing would be funded related to personalized genomic medicine. A result such as that might satisfy the radical egalitarian predilections of someone such as John Harris, but this would not strike me as either a fair or reasonable outcome, and I strongly suspect the same would be true as thoughtful citizens came to this realization through the deliberative process. That is, individuals would remind one another that at least some of these very costly life-prolonging interventions linked to specific genotypes were cost-effective and justly deserving of moderate priority for funding. What do we imagine this deliberative process might look like? We start by emphasizing that this would be a “rational” deliberative process. That means two things. First, these public conversations would be informed by the best medical evidence available at a point in time. This evidence would be presented in a way that was intelligible to most lay people and as unbiased as reasonably possible (free of language likely to precipitate common cognitive errors). Second, the core of the deliberative process would be giving “public reasons” (Rawls, 1993) to one another for the particular health care justice judgments we would be inclined to opt for with respect to a particular rationing issue. Public reasons are the sorts of reasons citizens in a liberal pluralistic democratic society can reasonably give to one another as justifications for one or another public policy.

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These are reasons that are separable from what Rawls (1993) would refer to as comprehensive religious or philosophic visions of what would count as a good life. These reasons are also public in the sense that they must be broader than considerations of personal self-interest. What do we hope to accomplish through this deliberative process with regard to our cancer and pharmacogenomics problem? We would have to create some “bright lines” in place of the “ragged edges” that are the clinical reality. Then we would have to judge how high a priority these targeted cancer therapies ought to have relative to all the other health care needs we have in our society for which there are effective and costworthy medical interventions. We can briefly work through an example. Consider again our earlier paclitaxel/bevacizumab example in connection with advanced breast cancer. Perhaps we could agree that the minimal predicted gain in life expectancy ought to be 1 year at a cost of less than $100,000 per QALY. The “gain” we are referring to would be over and above whatever the next-best treatment reliably offered. If we did come to such an agreement, that would mean that only 7% of women with advanced breast cancer would have a just claim to this cancer therapy at social expense. Would any of the other 93% have a just complaint in being denied access to this treatment at social expense, especially if during the deliberative process they vigorously objected to this rationing protocol? The short answer is negative. We have to keep in mind that the deliberative process is occurring among individuals who are mostly healthy and largely ignorant of what their future possible health care needs might be. Even those with an active and serious disease process are going to be rationally (prudentially) constrained with regard to the vigor of their advocacy for their own current health care needs. Let me illustrate with a very personal perspective. I am Medicare-eligible and I have had surgery for prostate cancer. That might incline me to be an excessively vigorous advocate for every somewhat promising form of prostate cancer treatment out there, no matter what the cost. But this would be imprudent and unjust and unreasonable. It would be imprudent because I know (statistically) that I am vulnerable to many other medical problems associated with advancing age and that there are some costly but very effective therapies available that ought to be funded. And I would want them adequately funded for reasons of prudence and

justice. Further, if I demanded that some number of very expensive marginally beneficial prostate cancer interventions be funded, then millions of others could make precisely the same demands for comparable kinds of therapies whatever their specific medical problems might be. And I am not willing to pay the increased taxes or insurance premiums that would be necessary to fund such an expansion of the medical armamentarium. So there is a consistency requirement, both moral and practical, that gets in the way of my justly demanding that all these marginally beneficial prostate treatments be funded at social expense. There is also another prudential consideration that should come into play. If we collectively send a signal to pharmaceutical companies that we are willing to pay exorbitant sums for marginal benefits from these drugs, then we can expect that these are the drugs they will be economically motivated to deliver. Prudence and justice dictate that we send two other sorts of signals instead. One would be that there will be no market for drugs connected to end-stage disease processes if those drugs cannot deliver more than an additional year of reasonable-quality life for less than $100,000. The second signal would be that we want medical interventions that are costworthy and very effective in much earlier stages of chronic degenerative disease processes so that patients gain more high-quality life-years at a reasonable cost. The tradeoff is that we shorten low-quality end-stages of these degenerative diseases. This is not an abandonment of patients, because we make instead investments in affordable palliative care. If we achieve these sorts of agreements through a fair and reasonable democratic deliberative process, then individuals who disagree with a particular outcome will not necessarily have a just claim for their future possible self with a minimally responsive genotype to some expensive cancer drug. They have certainly not been discriminated against for morally corrupt reasons. Their fate may be unfortunate, but it is not unjust. Again, to illustrate the point, we can imagine Mr. Smith at age 82 with this end-stage cancer demanding access to these drugs at social expense. However, at age 71 Mr. Smith developed life-threatening cardiac problems that effectively responded to some costly interventions that were developed and funded through the dollars that were redirected from marginally beneficial end-stage cancer interventions. In other words, he has gained additional years of life at social expense that he otherwise would have been denied if we had a less just and

Just Genetics less prudent approach to making these rationing and resource allocation decisions. The collective agreement that emerges from a fair and reasonable democratic deliberative process is what yields judgments that are both “just enough” and “legitimate enough.” We can imagine yet another argument that might be offered by those in the 11% group, just below our 7% group. The median gain in life expectancy for that group was 5 months. Again, however, there might be wide variation: perhaps a small number in that group would be capable of achieving an extra year of life or more if they have access to bevacizumab at social expense. Would knowing this as a statistical fact, and with no capacity to identify ahead of time who those individuals might be, morally require that we fund access to bevacizumab for the group as a whole? I would give a negative answer. Yet an actual deliberative process might yield the exact opposite answer, and there might be no compelling moral argument to show that this was morally unjustified. What explains the possibility of such radically different judgments? We are at another “ragged edge.” Those who advocate for either view need to explain to the others what they see as the most compelling justice-relevant considerations supportive of their view. One obvious response from my critic would be that we had agreed to a 1-year-of-life-gained rule. That was what required providing funding for bevacizumab for the 11% cohort. Otherwise, we would be treating unjustly those in the cohort who might gain that year, even if only a tiny fraction of the cohort. My response would be that the rule applied when we had a high degree of medical confidence that individuals would achieve that extra year of survival. We do not know that about any specific individual in that cohort. Should we concede that there is something “less than just” in the view I am defending? I concede that; this is what it means to say that “rough justice” is the best we can hope to achieve in these complex circumstances. Space does not permit delineating all the complex options and tradeoffs that might also have been “just enough” outcomes around cancer and pharmacogenomics. But a quick example of an unjust outcome might be helpful. Compromise is often seen as a fair and reasonable way of addressing complex moral and political problems. We might be tempted to suggest that we should not simply fund that 7% with the most favorable genotype and do nothing for the other 93%. So someone might argue for 50% social funding of these

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drugs for individuals with genotypes that are only marginally responsive. In that way no individual would feel “abandoned.” However, this approach would create serious injustices, since we would be providing social funding for these drugs for wealthier portions of our population. The lower three quintiles of our population would be very unlikely beneficiaries of such a policy. But if the social/economic/moral judgment has been made that these drugs yield too little benefit at too high a cost in specific clinical circumstances, there should be no social subsidy at all for patients in those circumstances for all the reasons given above. There may be scientific reasons for believing some drugs currently yielding only marginal benefits could be tweaked with more research and clinical testing to yield a costworthy version of that drug. If so, clinical trials could be publicly funded, and individuals in the relevant clinical circumstances from all socioeconomic strata would have to be assured access to those trials if they met the relevant clinical criteria. This policy would be “just enough.” Finally, one of the more complex and morally troubling issues that could emerge in the pharmacogenomic era would involve personal responsibility for health. This is a topic worthy of another entire essay. We already have intense current debates about the degree to which individuals should be held accountable for their ill health, especially in connection with the question of whether that responsibility entails diminished just claims to the expensive health care resources that they might need to address their health problems. But if, as expected, we have a $1,000 genome test in the next few years that will yield a complete readout of an individual’s genome, this could impose even more onerous, and arbitrary, demands of responsibility on individuals for ill health, which, in theory, they could have avoided if only they had been more attentive to their genetic vulnerabilities. This is not rugged moral terrain; this is terrain that must be avoided entirely.

Notes 1. For examples, see the following articles: International Warfarin Pharmacogenetics Consortium. (2009). Estimation of warfarin dose with clinical and pharmacogenetic data, New England Journal of Medicine 360:753–764; Mega, J.L., et al. (2009). Cytochrome P-450 polymorphisms and response to clopidogrel. New England Journal of Medicine 360:354–362; SEARCH Collaborative Group. (2008). SLCO1B1 variants and statin-induced myopathy—a genomewide study. New England Journal of Medicine 359:789–799.

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2. Lyman and Hirsch write, “Since treatmentrelated complications represent a major cause of morbidity and mortality in the general cancer population, targeted interventions are designed to minimize toxicity in patients unlikely to benefit, while maximizing treatment effectiveness and cost-effectiveness in those who will. The potential for more targeted, individualized or personalized interventions, tailoring treatments to patients at greatest risk and most likely to benefit, has fostered considerable enthusiasm among patients, clinicians, and researchers.” Lyman, G.H., & B. Hirsch. (2010). Comparative effectiveness research and genomic personalized medicine. Personalized Medicine 7:223– 227. One would not suspect that issues of justice lurked in this rosy scenario. 3. Samani, N.J. et al. (2010). The personal genome— the future of personalised medicine? Lancet 375:1497– 1498. 4. Fojo & Grady, 2009. 5. The most targeted therapy research has been done in connection with cancer, in part because of the commonality of the disease, in part because of the large number of very expensive drugs used in its treatment. But a similar pattern is beginning to emerge in connection with other major diseases, such as rheumatoid arthritis and multiple sclerosis. See Lindstrom, T.M., & W.H. Robinson. (2010). Biomarkers for rheumatoid arthritis: making it personal. Scandinavian Journal of Clinical & Laboratory Investigation 70 (Suppl 242): 79–84; Hughes, L.B., et al. (2009). Recent advances in personalizing rheumatoid arthritis therapy and management. Personalized Medicine 6:159–170; Plenge, R.M., & L.A. Criswell. (2008). Genetic variants that predict response to anti-tumor necrosis factor therapy in rheumatoid arthritis: current challenges and future directions. Current Opinions in Rheumatology 20:145– 152; Niino, M., & H. Sasaki. (2010). Update on the treatment options for multiple sclerosis. Expert Review of Clinical Immunology 6:77–88. 6. The reader should note that I am using the phrase “patients with end-stage cancer” very broadly. In the early stages of clinically testing these drugs they were usually given to patients in very late stages of their cancer. These drugs are now given more often in earlier stages, but that does not seem to have altered in most cases the very small gains in life expectancy achieved. 7. Again, to avoid confusion, Fojo and Grady are not saying that dollar figure would be the actual cost of those drugs for that number of patients. The real dollar figure in that hypothetical scenario would be $50 billion to $60 billion. What we could buy for that would be about 80,000 QALYs. This looks like something of substantial moral significance, but what it represents is about 2 additional months of life for each of 600,000 individuals. I believe that diminishes the moral significance of that number. To put this in another context, if

there are 20,000 lives lost prematurely per year because of being uninsured, and if each of those lives on average represents 20 lost years of high quality, then that represents 400,000 QALYs that could be saved for a lot less money than the $60 billion in the Fojo/Grady scenario. From the perspective of health-care justice (whether egalitarian or utilitarian), these latter lives would seem to have a stronger claim to those resources than those in the end stages of a cancer. 8. C.C. Tigue et al. (2007) write: “Targeted cancer drugs may provide real clinical benefits, but expenditure on cancer care competes with the need for healthcare resources for other patients, such as neonates, burn patients, and the elderly” (p. 114). It is almost impossible to overstate the volume of journal literature that has been generated in the past 5 years regarding the costs of these targeted cancer drugs and the related ethical problems they generate. One fine analysis is presented by Daniel Sulmasy (2007). See also Meropol and Schulman (2007); Elkin and Bach (2010); Sleijfer and Verweif (2009); Meropol et al. (2009); Fojo and Parkinson (2010); Schnipper et al (2010); Leichman (2010); Billett and Reaman (2011). 9. Schneider, B.P., et al. (2008). Association of vascular endothelial growth factor and vascular endothelial growth factor receptor-2 genetic polymorphisms with outcome in a trial of paclitaxel compared with paclitaxel plus bevacizumab in advanced breast cancer: ECOG 2100. Journal of Clinical Oncology 26:4672– 4678. To avoid any misconceptions regarding this study, I have had correspondence with the lead author (Schneider). He informed me that his study alone was not sufficient to justify changes in clinical practice today; more research and more data would be necessary before that could occur. 10. How do we know whether the cost of a QALY is reasonable? The reference point used most often is the cost of a year on dialysis, about $67,000 in 2009. In the U.S. we currently sustain about 470,000 individuals on dialysis at that average cost level. The implicit moral argument is that if we regard that as a reasonable purchase for sustaining the lives of patients with end-stage renal disease, then we ought to be willing to pay at least that to sustain the lives of patients with other end-stage diseases. 11. Harris, 1985, p. 110. 12. Callahan, D. (1990). What Kind of Life: The Limits of Medical Progress. New York: Simon and Schuster, Chapter 2. 13. See Steene, A. (2010). Cancer drug prices in the era of health care reform. Future Oncology 6:647–650. He writes, with reference to the health-care reform legislation passed by Congress in 2009, that “funding this new entitlement without increasing the US $13 trillion deficit will see Congress returning to health reform again and again, scrambling to match words with dollars.”

Just Genetics 14. Ruzzo, A., et al. (2010). Molecular predictors of efficacy to anti-EGFR agents in colorectal cancer patients. Current Cancer Drug Targets 10:68–79. 15. Van Cutsem, E., et al. (2010). Molecular markers and biological targeted therapies in metastatic colorectal cancer: expert opinion and recommendations derived from the 11th ESMO/World Congress on Gastrointestinal Cancer, Barcelona, 2009. Annals of Oncology 21 (Supplement 6):vi1–vi10. 16. See Ortega, J., et al. (2010). Current progress in targeted therapy for colorectal cancer. Cancer Control 17:7–15, at 9. 17. VanCutsem, E., et al., (2010), p. vi2. 18. Shepherd, F.A. (2008). Targeted therapy in the management of lung cancer: is there more hype than hope? Targeted Oncology 3:131–133. 19. The medical literature I have reviewed in connection with KRAS mutations and colorectal cancer seems to state very clearly that patients with these mutations will be “non-responders” to cetuximab, as opposed to “poor responders” (or any other phrase suggesting some degree of positive response). 20. Ramsey, S.D. (2010). Economics and the new generation of targeted therapies for non-small cell lung cancer. Journal of the National Cancer Institute 102:287–288. 21. A critical assessment of this point of view is offered by Dan Brock in his 2002 essay “Priority to the worse off in health-care resource prioritization. In Medicine and Social Justice: Essays on the Distribution of Health Care, eds. R. Rhodes, M. Battin, & A. Silvers. Oxford: Oxford University Press, pp. 362–372. 22. Critical assessments of the appeal to the rule of rescue may be found in McKie, J., & J. Richardson. (2003). The rule of rescue. Social Science and Medicine 56:2407–2419. See Cookson, R., et al. (2008). Public healthcare resource allocation and the rule of rescue. Journal of Medical Ethics 34:540–544.

References Billett, A.L., Reaman, G.H. (2011). What price cure? Pediatric Blood Cancer 57, 908–09. Daily Mail Reporter. (2008). Life-and-death decisions of drugs rationing body are ‘less fair than tossing a coin’, says ethics expert [John Harris]. Accessed 8/6/2010 at http://www.dailymail.co.uk/sciencetech/article-1080212/Life-death-decisions-drugsrationing-body. Daniels, N. (1985). Just Health Care, Cambridge: Cambridge University Press. Daniels, N., Sabin J. (2002). Setting Limits Fairly: Can We Learn to Share Medical Resources Fairly? New York: Oxford University Press. Eddy, D.M. (1996). Clinical Decision Making: From Theory to Practice Boston: Jones and Bartlett.

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Elkin, E.B., Bach, P.B. (2010). Cancer’s next frontier: addressing high and increasing costs. JAMA 303, 1086–87. Fleck, L.M. (2009). Just Caring: Health Care Rationing and Democratic Deliberation, New York: Oxford University Press. Fojo, T., & C. Grady. (2009). How much is life worth: cetuximab, non-small cell lung cancer, and the $440 billion question. Journal of the National Cancer Institute 101:1–5. Fojo, T., Parkinson, D.R. (2010). Biologically targeted cancer therapy and marginal benefits: are we making too much of too little or are we achieving too little by giving too much? Clinical Cancer Research 16, 5972–80. Harris, J. (1985). The Value of Life. Oxford, UK: Routledge and Kegan Paul. Harris, J. (1987). QALYfying the value of human life. Journal of Medical Ethics 13, 117–23. Harris, Daily Mail Reporter, 2008. Hughes, L.B., Danila, M.I., Bridges, S.L. (2009). Recent advances in personalizing rheumatoid arthritis therapy and management. Personalized Medicine 6, 159–70. International Warfarin Pharmacogenetics Consortium. (2009). Estimation of warfarin dose with clinical and pharmacogenetic data. New England Journal of Medicine 360, 753–64. Leichman, L. (2010). On target? off target? why we really do not know. Journal of Clinical Oncology 28, 2937–38. Lindstrom, T.M., Robinson, W.H. (2010). Biomarkers for rheumatoid arthritis: Making it personal. Scandinavian Journal of Clinical and Laboratory Investigation 70 (Suppl 242), 79–84. Meropol, N.J., Schulman, K.A. (2007). Cost of cancer care: issues and implications. Journal of Clinical Oncology 25, 180–86. Meropol, N.J., Schrag, D., Smith, T.J., Mulvey, T.M., Langdon, R.M., Blum, D. et al. (2009). American Society of Clinical Oncology guidance statement: the cost of cancer care. Journal of Clinical Oncology 27, 3868–74. Rawls, J. (1993). Political Liberalism, New York: Columbia University Press. Schnipper, L.E., Meropol, N.J., Brock, D.W. (2010). Value and cancer care: toward an equitable future. Clinical Cancer Research 16, 6004–08. Sleijfer, S., Verweij J. (2009). The price of success: costeffectiveness of molecularly targeted agents. Clinical Pharmacology & Therapeutics 85, 136–38. Sulmasy, D. (2007). Cancer care, money, and the value of life: whose justice? which rationality? Journal of Clinical Oncology 25, 217–22. Temel, J.S., Greer, J.A., Muzikansky, A., Gallagher, E.R., Admane, S., Jackson, V.A. et al. (2010). Early

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palliative care for patients with non-small-cell lung cancer. New England Journal of Medicine 363, 733–42. Tigue, C.C., Fitzner, K.A., Alkhatib, M., Schmid E., Bennett, C.L. (2007). The value of innovation: the

economics of targeted drugs for cancer. Targeted Oncology 2, 113–19. Ubel, P. (2000). Pricing Life: Why It’s Time for Health Care Rationing, Cambridge, MA: MIT Press.

38 Expanded Newborn Screening Contemporary Challenges to the Parens Patriae Doctrine and the Use of Public Resources J E F F R E Y R . B O T K I N, R E B E C C A A . A N D E R S O N, AND ERIN ROTHWELL

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ewborn bloodspot screening (NBS) was originally intended to detect certain congenital metabolic, endocrine, hematologic, and genetic conditions shortly after birth in order to reduce morbidity and mortality from these conditions. It has evolved in recent decades from screening for a few, relatively well-understood disorders with effective treatments to screening for a broad range of disorders, many of which are rare and poorly understood and have treatments of uncertain efficacy. This expansion has been the subject of controversy in the field of public health (Botkin et al., 2006; Natowicz, 2005). Controversy has arisen recently over the management of the blood samples that are left over after newborn screening is completed; these samples are collected and saved as dried blood on filter paper cards and are called residual dried bloodspots (DBS). The evolution of these historically successful programs begs the question of whether there is a need to re-evaluate core assumptions underlying traditional public policy in this domain, and the expanding scope and nature of these important public health programs. State-based newborn screening programs have conducted mandatory screening on virtually every infant born in the United States since the 1960s under an assumption of parens patriae. Parens patriae is a legal doctrine that grants the power and authority to the state to protect those unable to protect themselves, particularly children (Olson & Berger, 2010). While most states enable parents to opt out of NBS for religious or philosophical reasons, parents are not adequately informed of these prerogatives (Rothwell, Anderson, & Botkin, 2010; United States General

Accounting Office, 2003). Currently only Wyoming and the District of Columbia have laws requiring signed parental permission for the conduct of NBS. The lack of a permission requirement, in part, has resulted in poor communication about NBS with new parents and limited awareness about it by the general public. Many states have been reticent to provide information about NBS to parents, in part from fear that parents may decline screening and result in missing child with a disorder. The lack of adequate understanding of these programs and their substantial value has left health departments vulnerable to criticism and lawsuits, particularly over the management of residual samples (Maschke, 2009). As a result, some parents now opt out of newborn screening altogether because of misinformation and misunderstanding about the programs. Consequently, health departments are now caught between the risk of parents declining screening due to awareness of their opt-out options, and the risk of parents declining screening because they have lost trust in the ethical conduct of the programs due to the lack of adequate education. Providing information to parents to enable them to make informed choices about NBS and residual DBS use has become an issue of social justice that is being tested in state and federal courts. Increasingly, commentators are noting the importance of transparency and parents are demanding more information about NBS and expecting to be asked their permission for screening and for the retention and use of residual DBS. If NBS is found to exceed the limits of legitimate parens patriae authority, parents may be allowed to decide to protect their children from perceived

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risks or wrongs. Without accurate information about NBS programs, parents cannot make informed decisions, and thereby may create health risks for their children.

NEWBORN SCREENING PROGRAMS As we explained, newborn screening is conducted by state public health departments to enable the early identification of infants with certain genetic, metabolic, and endocrine disorders. Screening is performed in the first few days of life through blood testing. Several drops of blood are taken from the baby’s heel and placed on a filter paper card that includes contact information for the family and the baby’s doctor and birth information about the baby. The dried blood on the filter cards is sent from the newborn nursery to the state health department laboratory, or a commercial partner, where the blood is analyzed. Results are returned to the primary care provider for the child. In the event of a positive (abnormal) result, the family is notified quickly in order to organize confirmatory testing, a definitive diagnosis, and early intervention. Ideally this testing sequence is conducted within the first 7 to 14 days of life in order to prevent serious complications from several of the conditions that can cause an abrupt deterioration in the child’s health. Galactosemia, for example, can cause a rapid decline and death within the first 2 weeks of life if not identified early and treated. Other conditions, like phenylketonuria (PKU) and hypothyroidism, will cause a progressive and irreversible decline in intellectual function until the condition is treated. Newborn screening began in the early 1960s with an exclusive focus on a single rare but serious metabolic disease, PKU, an inherited disease that occurs in about 1 in 25,000 newborns. PKU is caused by the absence of an enzyme that converts phenylalanine (an amino acid found in many food proteins) to tyrosine. Prior to birth, the mother’s system protects the baby by preventing the buildup of phenylalanine in the fetus. Following delivery, phenylalanine from the infant’s diet builds up in his or her system, causing damage to the central nervous system. When the condition is recognized early, affected infants are placed on a low-phenylalanine diet that can prevent serious intellectual impairment. PKU is the paradigm condition for newborn screening because prompt screening can lead to early intervention that substantially averts serious morbidity.

PKU was recognized in the 1950s as a relatively common and preventable cause of mental retardation (Paul, 1998). Disease advocates quickly endorsed the notion of universal screening for this condition, but there was hesitancy in the medical profession. PKU was not well understood and there was uncertainty about its long-term consequences. There was also uncertainty about how screening would be conducted and who would be responsible for communicating the findings, providing the special diet, and ensuring that identified children would be maintained on the diet (Berry, Sutherland, & Umbarger, 1966; Bessman, 1966; Brosco, Seider, & Dunn, 2006). One of the key technical breakthroughs for advancing NBS was the use of dried blood on filter paper, greatly facilitating the acquisition and transfer of samples to a central laboratory for testing. The adoption of universal screening with the use of a central laboratory facility led to the development of a public health infrastructure for this service. Legislation passed in the early 1960s in Massachusetts established the first state health PKU screening program. This legislative approach, effectively promoted by organizations like the National Association for Retarded Citizens (Berry & Wright, 1967) and other advocacy groups, led to mandatory programs in 43 states by 1975. This model has now been adopted throughout the U.S., its territories and in all countries of the developed world. NBS programs remain state-based programs, and each state has implemented a model for financing newborn screening services within the state health departments. The most common approach is for the state health department to charge birthing centers a “kit fee” for each of the filter paper cards. Hospitals then bill the parents following delivery for conducting the screen. Kit fees range from $15 to $125 per child, although the charges to parents by the hospital may be considerably more. Under this model, health departments provide NBS and the related laboratory services, short-term follow-up, and, often, initial treatment services for affected children financed by the kit fees that are charged to parents by the birth center. Parents of newborns, and their insurance carriers, fund the newborn screening program, fully or in part, under this system. Kit fees are “bundled” into a delivery charge, so all parents or their third-party payers pay for the service even if they chose not to have the screening conducted. Some states do not charge for the kits and others

Expanded Newborn Screening do not charge the full cost of the services. In these states, newborn screening is funded fully or in part out of general state funds as a component of health department services.

E X PA N S I O N O F N B S In the early decades of NBS the number of conditions targeted gradually expanded to include conditions like congenital hypothyroidism, galactosemia, and sickle cell disease. Within the past decade, new technology that allows one test to screen for a wide variety of metabolic disorders has prompted a dramatic increase in the number of screened conditions. The American College of Medical Genetics (ACMG) was commissioned by the U.S. Health Resources and Services Administration (HRSA) in 2005 to provide recommendations for a uniform national panel. The ACMG recommended a core panel of 29 disorders, and this report was endorsed by the Department of Health and Human Services, Secretary’s Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children, the American Academy of Pediatrics, and the March of Dimes. In the 1990s, most states were screening newborns for fewer than 10 conditions. In 2005, only 38% of the over 4 million babies born annually in the U.S. were screened at birth for 20 or more disorders. In 2009, all of the babies born in the U.S. were screened for more than 26 conditions. The number of screened conditions is expected to continue to grow as DNA-based technologies become more efficient. It is estimated that 4,000 newborns with metabolic disorders are identified and referred for treatment each year. While not all of the conditions on the NBS panel are hereditary, most are, meaning that NBS is the largest application of genetic testing in health care. The rapid expansion of newborn screening has led to controversy over the appropriate targets of screening (Botkin et al., 2006; Natowicz, 2005). Many of the conditions on the ACMG uniform panel are rare and remain poorly understood. In addition, for a number of screened conditions, the efficacy of treatment remains uncertain. Controversy has arisen over whether population screening is justified when benefits are not well established and the costs and adverse effects from false positives are part of the outcomes. The principles that originally justified the NBS program include the ability to effectively prevent or treat, in the newborn period, the condition with limited harm and expense.

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RISKS FROM NEWBORN SCREENING As with any health program, the benefits must be balanced against the risks. The primary adverse effect of most screening programs is the generation of false-positive results. Effective screening programs (such as NBS, vision screening, and those for breast cancer and prostate cancer) are designed to be sensitive so that virtually all individuals with a disorder are detected. The specificity of the test—that is, the percentage of people without the condition who test negative—is also a critical consideration. With most tests there is typically a trade-off between the sensitivity and the specificity: choosing a test design with high sensitivity may mean the specificity is relatively low. This approach typically produces many “falsepositive” results, meaning individuals who receive an initial positive result but are found to be unaffected on subsequent evaluation. For most population screening programs in which the target condition is relatively rare, the numbers of falsepositive results on initial screening far outnumber the true positives. The burden of false positives is expected and unfortunate, but acceptable when finding a true positive could avert a great harm. For example, a society may determine that it is acceptable for many women to undergo breast biopsy if the benefits of early detection for the small number of women who have breast cancer are substantial. Similarly, in the context of NBS, it is common for the positive predictive value of a test (the ratio of true positive results to all positive results) to be less than 10%, and sometimes less than 1% (Kwon & Farrell, 2000). For some NBS tests there are 100 false-positive results for every true positive. As the number of disorders targeted increases, so do the total number of false positives and their concomitant adverse effects. As we might imagine, being told that your newborn might have a serious health condition has a substantial impact on parents. Research conducted on the impact of false-positive results has identified substantial psychosocial distress in some parents even after subsequent testing has confirmed normal results (Tarini, Christakis, & Welch, 2006). Mothers who received false-positive results reported higher levels of stress (Gurian, Kinnamon, Henry, & Waisbren, 2006; Waisbren et al., 2003), depression (Tluczek, Koscik, Farrell, & Rock, 2005; Tluczek, Mischler, & Bowers, 1991), anxiety (Bodegar, Fyro, & Larsson, 1983; Clemens, Davis, & Bailey, 2000; Fyro & Bodegard, 1987;

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Sorenson, Levy, Mangione, & Sepe, 1984), and disturbances of the parent–child relationship (Gurian, Kinnamon, Henry, & Waisbren, 2006; Waisbren et al., 2003). Moreover, the consequences of false-positive results and repeat testing extend beyond the parent–child relationship (Sobel & Cowan, 2000). If parents receive a falsepositive result with their first child, this experience can negatively influence future reproductive decisions (Mischler et al., 1998; Tluczek et al., 1992). Illness or the perception that something is wrong with a child can cause other changes in the family, such as overprotection of the child perceived to be ill and of other family members as well (Rolland, 1997). In addition, false-positive results have been associated with unnecessary utilization of health care services (Gurian et al., 2006; Waisbren et al., 2003). The management of expanding NBS programs requires a quick response to initial positive results and efforts to reduce the burdens of false-positive results. NBS programs are now commonly referred to as “systems” because of the complex sequence of elements and entities involved (hospital, health department, newborn primary care providers) from the initial blood draw, through confirmatory testing, to long-term treatment. Those directly involved who must respond quickly and efficiently include clinicians, parents, and public health officials. Knowledgeable responses from informed participants helps to reduce the potential harms associated with population screening efforts.

C H A L L E N G E S TO N B S RESEARCH Research on NBS is essential for designing initiatives to maximize the benefits and reduce the burdens and harms (Botkin, 2005). The low prevalence of these conditions often means that research on a population-screening program must involve a large number of individuals. This is particularly true when the research is designed to evaluate how the NBS system functions to reduce morbidity or mortality and not just to ensure that screening is conducted. Another challenge with NBS research is determining whether and how to engage parents and elicit their informed permission for NBS research. Without an infrastructure for obtaining consent for clinical screening, it is logistically complex to obtain consent for NBS research, particularly when the research protocol might entail sample acquisition at all of the large and small birthing facilities across a state or across the nation. Low recruitment would impair the

ability of the investigators to draw valid conclusions from their studies. The complexity and cost of obtaining informed consent for certain types of important health research could be prohibitive and thus inhibit the successful performance of some studies. Due to the critical need to conduct research on rare pediatric conditions and other public health issues, many states retain the residual bloodspots following screening. These retained bloodspots represent a substantial portion of the state population and are a highly valuable resource for a variety of types of studies, including genetic epidemiology, infectious epidemiology, and prenatal exposure to environmental toxins. While some states destroy the samples after clinical testing is complete, other states save the specimens indefinitely. The residual samples are primarily used to evaluate new NBS modalities, but they can also be used for other purposes that may benefit pregnant women and the general population. Residual samples are generally used only after all identifiers have been removed from the sample. Due to the lack of parental permission for NBS clinical services, there is no informed consent process in most states for sample retention and research use (Lewis et al., 2011). Within the past few years, substantial controversy has arisen over NBS sample retention and use in research. Two states, Minnesota and Texas, have been subject to lawsuits over these practices. Texas destroyed over 5 million stored samples in 2010 to resolve the dispute. Our research on attitudes toward NBS and retained samples has shown that parents and the general public are not aware of either practice. Once informed, many individuals have significant concerns, primarily related to choice and personal control (Rothwell et al., 2010). Therefore, there is a need to provide education about NBS to parents that includes explanations about NBS clinical services and sample retention and research.

PA R E N TA L E D U C AT I O N ABOUT NBS Parent education and active engagement in NBS decisions remains a major challenge. We know that parents want information on this topic but that current educational approaches are largely ineffective. Despite the significant expansion in the scope and complexity of these programs, there have been no innovative, broad-scale, or evidencebased approaches to improve the education of new parents about NBS.

Expanded Newborn Screening The lack of effective education for parents about NBS is an important national problem. At a practical level, parents are key participants and consumers in state NBS programs. Prompt and efficient collaboration between professionals and parents is critical to providing initial screening, confirmatory testing and evaluation, and followup services for affected children. Affected children may be harmed through slow or inappropriate responses by parents (and/or clinicians) to screening test results. And, as noted above, the literature clearly documents that some parents and families experience psychosocial harm through an inadequate understanding of false-positive NBS results. Also, as recognized by the American Academy of Pediatrics, parents have a right to basic information about medical interventions conducted for their children, regardless of the required nature of NBS in most states (American Academy of Pediatrics, 2000). Furthermore, surveys and focus groups document that parents indicate a strong preference for better education about NBS and for this information to be provided prenatally. Twenty-one states require parental education through their newborn screening legislation, and all states prepare educational materials for parents. Key professional organizations, federal agencies, and lay advocacy groups have specifically called for enhanced parental education regarding NBS, suggesting that it be provided prenatally. Recognizing the need for effective NBS education, the American Academy of Pediatrics Task Force on Newborn Screening outlined a national agenda for strengthening state NBS systems and specifically called for the development and assessment of new educational tools for parents and professionals (American Academy of Pediatrics, 2000). Fostering informed participation by parents is a responsibility of screening programs (Matsui, Kita, & Ueshima, 2005; Tu et al., 2004) The Health Resource Service Administration, state program officials, lay advocacy groups, and professional medical societies recognize that adequate education of parents is an important component of a comprehensive approach to screening. Currently state legislation in 29 states requires that information about NBS be given to parents, and 21 states require educational programs for the general public. Some states also require additional information to be provided to parents on topics such as the retention and use of residual bloodspots (Lewis et al., 2011). As previously discussed, the majority of states do not have an informed permission requirement for NBS programs, meaning

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that informational requirements can be met through passive mechanisms such as providing brochures. Most often, the distribution of educational materials occurs during the immediate postnatal period, when new parents need to address other priorities in newborn and maternal care.

A L L O C AT I O N O F RESOURCES WITHIN NEWBORN SCREENING There are other ethical concerns beyond the engagement and education of parents that are raised by NBS. The expansion of NBS raises issues of funding and cost, including opportunity costs. The public health approach to NBS ensures that all newborns in our society have equal access to this health service regardless of insurance or ability to pay. In the early years of the programs, a public health approach was justified in part by a reduction in public costs for disabled children who were provided care in long-term care facilities. Contemporary justifications hinge on the state’s authority given the presumed benefits to children, and the efficiency of statewide programs to promptly identify affected children. As part of their study of Ethical Problems in Medicine and Biomedical and Behavioral Research, the President’s Commission issued a report titled “An Ethical Framework for Access to Health Care.” Their commission sets forth an ethical standard: access for all to an “adequate level” of care without the imposition of excessive burdens. In a Hastings Center report on NBS, Mary Ann Baily and Thomas Murray (2008) maintain that the policies governing NBS are ethical when they are evidence-based, take into account the opportunity cost of the NBS program, distribute the costs and benefits of the program fairly, and respect human rights. Both of these frameworks raise a question about the just allocation of resources in the expansion of NBS. When is NBS an essential health care service for children? There is little debate over the substantial benefits of screening for many of the conditions on the NBS panel, but given the limited resources available for child health, when does expanding a NBS panel justify the additional resource investment? The expansion of NBS raises questions of justice related to the resources that NBS consumes. We will touch on three issues related to allocation of resources: (1) coverage of long-term care of affected children, (2) long-term data collection, and (3) screening that does not involve

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laboratory services. Our goal is not to give a definitive opinion on how these ethical issues should be resolved, but to present the issues that have been identified. As noted above, funding for NBS programs typically comes from NBS kit fees. Kits are sold to hospitals, which in turn charge new parents (or their third-party payers) for the service (U.S. GAO, 2003, p. 14). Some states use funds from other sources, including Health and Human Services, Health Resource Service Administration’s (HRSA) Maternal and Child Health Services Block Grant, direct payments from Medicaid, and other state and federal funds. This approach has been highly successful in providing screening services to virtually all children regardless of ability to pay. The small number of children who are not screened are missed through occasional oversights in the nursery and home births in which the birth attendant forgoes screening services. Children and families are never denied screening based on social or economic factors. NBS services are heavily dependent on an efficient infrastructure that has developed around bloodspot screening. Blood is obtained from all newborns and tested in high-throughput laboratories, and results are disclosed to primary care providers and the family within 2 weeks. However, this approach does not effectively support the larger system of health care for affected children in several respects. A longstanding problem with NBS systems is the lack of support for long-term follow-up and care. The bulk of the resources for NBS go to laboratory services and short-term follow-up. Most programs follow affected children only long enough to make sure they have received a definitive diagnosis and obtained initial treatment services. Most states guide families to where they can receive expert treatment, but treatment is not provided by the screening program. This problem is illustrated dramatically by the example of sickle cell disease screening. It has been known since 1986 that penicillin prophylaxis and immunization are highly effective in reducing mortality in children with sickle cell disease (Gaston et al., 1986). This finding led to the rapid adoption of NBS for sickle cell disease and other hemoglobinopathies. Yet recent research clearly demonstrates that less than half of affected children receive appropriate prophylaxis and immunizations despite the simplicity and low cost of these interventions (Sox et al., 2003; Teach et al., 1998). When long-term care is absent, NBS provides no

benefit to affected children. Some commentators claim that a state mandate for screening implies a mandate for state coverage of treatment services. Others believe that screening is a substantial service in itself, and that screening need not entail treatment services. But it is quite clear that the limited resources available to state public health programs will not be expanded to cover treatment services for conditions detected through NBS. Therefore, it is fair to conclude that at the present time, NBS is only as efficient as the larger health care system in providing services to affected children. In other circumstances, children with some conditions detected by NBS are uniquely disadvantaged by the larger health care system. Conditions like PKU are primarily treated through special diets that are expensive and must be maintained through a lifetime. Yet many third-party payers explicitly limit or deny coverage for medical foods. Families and care providers seeking coverage of medical foods for children with metabolic conditions have waged a longstanding battle against insurance companies (Milner, 1993). Over 50% of families report problems obtaining medical foods and/or having them properly reimbursed (Buist et al., 1994). Currently there is an effort through federal legislation to have medical foods included under basic health care insurance within the Affordable Care Act. Again, the value of a system for early detection of these conditions is reduced by the failure to ensure that families and care providers can meet the special needs of the affected children. Another problem for NBS is the lack of data collection on affected children and their families (Botkin et al., 2009). As noted, state programs typically do not collect data on children following a definitive diagnosis and referral for initial care. Therefore, states do not have data on the longterm outcomes of these children. Further, the rare nature of these conditions makes it difficult for subspecialists to collect data on clinical outcomes, leaving uncertainty about the efficacy of treatment for a number of diseases. Developing a long-term follow-up system is complex and expensive. However, as resources are used to add more conditions to the panel, it is appropriate to ask whether resources should be devoted to ensuring that affected children are provided adequate care and that data are collected to evaluate the efficacy of evolving treatment strategies. A new challenge to newborn screening systems arises from initiatives to screen with modalities beyond bloodspot testing. A recent example is

Expanded Newborn Screening the recommendation of the Secretary’s Advisory Committee on Heritable Diseases in Newborns and Children (SACHDNC) to screen for critical congenital cyanotic heart disease in newborns (http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders/recommendations/ correspondence/criticalcongenital.pdf ). In many newborns congenital heart disease cannot be detected on physical exams alone. These babies may become critically ill or die from the condition within a few days to weeks. Screening with a skin probe that detects low oxygen levels (pulse oximetry) has been shown to be effective. This development led the SACHDNC to recommend that all infants be screened with this technology. Infants detected with low oxygen levels should be immediately evaluated by experts and referrals made to care centers familiar with neonatal congenital heart disease. This recommendation was met with some consternation by state NBS programs. The key questions are about the role of state health departments in this form of screening. Babies who screen positive are identified and cared for within the nursery without the need for state laboratory or follow-up systems. That is, the screening and referrals occur entirely at the point of care. Is it the job of the state to make sure all infants receive this form of screening, or should that be the responsibility of care providers and hospitals? How should this type of screening be paid for when it is mandated by a state? What are the implications for small birthing centers that do not have the screening technology? This challenge of defining new roles and responsibilities will increase if technologies of the future allow more testing to be done immediately at the bedside rather than through large state laboratories.

CONCLUSIONS The progressive expansion of NBS programs calls for review and assessment of today’s policies, especially in light of the limited resources available. Furthermore, the need for more research and associated practices like sample retention need to be considered in the context of broader social goals. NBS programs have largely “flown under the radar” of most parents even though they provide critically important services for the welfare of children. In the past, programs have accepted the practice of operating with only limited parental and public awareness, but this systematic lack of transparency is beginning to harm programs

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through an erosion of public trust. Increasing the engagement of parents with NBS programs will involve unique challenges. We believe that these challenges can be overcome with evidence-based educational interventions conducted in the prenatal period. Parental education about NBS must be designed to reflect how NBS systems have evolved over recent decades. The challenges with respect to the allocation of resources within NBS programs reflect uncertainties over the scope and nature of services provided by the public health component. States have become adept at systems involving sample acquisition, laboratory testing, and disclosure of initial results. However, programs are much less effective in providing parental education and engagement, long-term care and monitoring, and incorporating new screening approaches that are not bloodspotdependent. As our health care system is reformed, it will be important to reassess how this important state public health function coordinates with national public health initiatives and private providers and payers in order to provide effective care for children with these uncommon disorders.

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Diem, K. (2004). Newborn screening—should it be part of prenatal care? American Journal of Obstetrics and Gynecology 190(4):874. Dillard, J.P., Shen, L., Laxova, A., & Farrell, P. (2008). Potential threats to the effective communication of genetic risk information: the case of cystic fibrosis. Health Commun 23(3):234–244. Dolbear, G., & Newell, L. (2002). Consent for prenatal testing: a preliminary examination of the effects of named HIV reporting and mandatory partner notification. Journal of Public Health Mangement Practice 8(3):69–72. Faden, R., Chwalow, A.J., Holtzman, N.A., & Horn, S.D. (1982). A survey to evaluate parental consent as public policy for neonatal screening. American Journal of Public Health 72(12):1347–1352. Fant, K.E., Clark, S.J., & Kemper, A.R. (2005). Completeness and complexity of information available to parents from newborn-screening programs. Pediatrics 115(5):1268–1272. Faulkner, L.A., Feuchtbaum, L.B., Graham, S., Bolstad, J.P., & Cunningham, G.C. (2006). The newborn screening educational gap: What prenatal care providers do compared with what is expected. American Journal of Obstetrics and Gynecology 194(1):131–137. Fyro, K., & Bodegard, G. (1987). Four-year follow-up of psychological reactions to false positive screening tests for congenital hypothyroidism. Acta Paediatrica Scandinavica 76:107–114S. Gaston, M.H., Verter, J.I., Woods, G., et al. (1986). Prophylaxis with oral penicillin in children with sickle cell anemia: a randomized trial. New England Journal of Medicine 314:1593–1599. Gennaccaro, M., Waisbren, S.E., & Marsden, D. (2005). The knowledge gap in expanded newborn screening: survey results from paediatricians in Massachusetts. Journal of Inherited & Metabolic Disease 28(6):819–824. Green, M.J., Biesecker, B.B., McInerney, A.M., Mauger, D., & Fost, N. (2001). An interactive computer program can effectively educate patients about genetic testing for breast cancer susceptibility. American Journal of Medical Genetics 103(1):16–23. Green, M.J., & Fost, N. (1997). Who should provide genetic education prior to gene testing? Computers and other methods for improving patient understanding. Genetic Testing 1(2):131–136. Green, M.J., Peterson, S.K., Baker, M.W., Harper, G.R., Friedman, L.C., Rubinstein, W.S., et al. (2004). Effect of a computer-based decision aid on knowledge, perceptions, and intentions about genetic testing for breast cancer susceptibility: a randomized controlled trial. Journal of the American Medical Association 292(4):442–452. Griffith, J.M., Sorenson, J.R., Bowling, J.M., & JenningsGrant, T. (2005). Assessment of an interactive

Expanded Newborn Screening computer-based patient prenatal genetic screening and testing education tool. Health Educ Behav 32(5):613–626. Griffith, J.M., Sorenson, J.R., Jennings-Grant, T., & Fowler, B. (2005). Development of an interactive computer-assisted instruction (ICAI) program for patient prenatal genetic screening and carrier testing for use in clinical settings. Patient Educ Couns 59(2):199–204. Gurian, E., Kinnamon, D., Henry, J., & Waisbren, S. (2006). Expanded newborn screening for biochemical disorders: the effect of a false-positive result. Pediatrics 117(6):1915–1921. Hayeems, R.Z., Miller, F.A., Little, J., Carroll, J.C., Allanson, J., Chakraborty, P., et al. (2009). Informing parents about expanded newborn screening: influences on provider involvement. Pediatrics [e-pub Aug. 10]. Hiller, E.H., Landenburger, G., Natowicz MR. (1997). Public health policy forum. Public participation in medical policy-making and the status of consumer autonomy: the example of newborn-screening programs in the United States. American Journal of Public Health 87(8):1280–1288. Hunter, A.G., Cappelli, M., Humphreys, L., Allanson, J.E., Chiu, T.T., Peeters, C., et al. (2005). A randomized trial comparing alternative approaches to prenatal diagnosis counseling in advanced maternal age patients. Clin Genet 67(4):303–313. Keulers, B.J., Welters, C.F., Spauwen, P.H., & Houpt, P. (2007). Can face-to-face patient education be replaced by computer-based patient education? A randomised trial. Patient Educ Couns 67(1–2): 176–182. Kim, S., Lloyd-Puryear, M.A., & Tonniges, T.F. (2003). Examination of the communication practices between state newborn screening programs and the medical home. Pediatrics 111(2): E120–126. Kuppermann, M., Norton, M.E., Gates, E., Gregorich, S.E., Learman, L.A., Nakagawa, S., et al. (2009). Computerized prenatal genetic testing decisionassisting tool: a randomized controlled trial. Obstetrics & Gynecology 113(1):53–63. Kwon, C., & Farrell, P.M. (2000). The magnitude and challenge of false-positive newborn screening test results. Archives of Pediatric & Adolescent Medicine 154(7):714–718. Larsson A. & Therrell BL. Newborn screening: the role of the obstetrician. Clin Obstetr Gynecol 2002; 45:697–710. Lewis, M.G., Goldenberg, A., Anderson, R.A., Rothwell, E., & Botkin, J. (2011). State laws regarding the retention and use of residual newborn screening blood samples. Pediatrics 127(4):703–12. Maschke, K. (2009). Disputes over research with residual newborn screening blood specimens. Hastings

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Center Reports 39(4). Retrieved from http://www. thehastingscenter.org/Bioethicsforum/Post.aspx? id=3826 Matsui, K., Kita, Y., & Ueshima, H. (2005). Informed consent, participation in, and withdrawal from a population based cohort study involving genetic analysis. Journal of Medical Ethics 31(7):385–392. Milner, B.N. (1993). Insurance coverage of special foods needed in the treatment of phenylketonuria. Public Health Reports 108(1):60–65. Mischler, E., Wilfond, B.S., Fost, N.C., et al. (1998). Cystic fibrosis newborn screening: Impact on reproductive behavior and implications for genetic counseling. Pediatrics 102:44–52. Natowicz, M. (2005). Newborn screening—setting evidence-based policy for protection. New England Journal of Medicine 353(9):867–870. Nelson, R.M., Botkin, J.R., Kodish, E.D., Levetown, M., Truman, J. T., Wilfond, B.S., et al. (2001). Ethical issues with genetic testing in pediatrics. Pediatrics 107(6):1451–1455. Olson, S., & Berger, A.C. (2010). Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research: Workshop Summary. Institute of Medicine. Paul, D.B. (1998). The Politics of Heredity. New York: State University of New York Press, Albany. Rolland, J. (1997). The meaning of disability and suffering: Sociopolitical concerns. Family Processes 36:437–440. Rothwell, E., Anderson, R., & Botkin, J. (2010). Policy issues and stakeholder concerns regarding the storage and use of residual newborn dried blood samples for research. Policy Polit Nurs Pract 11(1): 5–12. Rothwell, E., Anderson, R., Burbank, M., Goldenberg, A., Lewis, M.H., Stark, L., Wong, B., & Botkin, J. (2011). Concerns of Newborn Screening Advisory Committee members regarding storage and use of residual newborn screening bloodspots. American Journal of Public Health. 101(11):2111–6. Sobel, S.K., & Cowan, D. B. (2000). Impact of genetic testing for Huntington disease on the family system. American Journal of Medical Genetics 90(1):49–59. Sorenson, J.R., Levy, H., Mangione, T.W., & Sepe, S.J. (1984). Parental response to repeat testing of infants with false positive results in newborn screening program. Pediatrics 73:183–187. Sox, C.M., Cooper, W.O., Koepsell, T.D., DiGiuseppe, D.L., & Christakis, D.A. (2003). Provision of pneumococcal prophylaxis for publicly insured children with sickle cell disease. Journal of the American Medical Association 290:1057–1061. Tarini, B.A., Christakis, D.A., & Welch, H.G. (2006). State newborn screening in the tandem mass

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spectrometry era: more tests, more false-positive results. Pediatrics 118(2):448–456. Teach, S.J., Lillis, K.A., & Grossi, M. (1998). Compliance with penicillin prophylaxis in patients with sickle cell disease. Archives of Pediatric & Adolescent Medicine 152:274–278. Tluczek, A., Koscik, R.L., Farrell, P.M., & Rock, M.J. (2005). Psychosocial risk associated with newborn screening for cystic fibrosis: Parents’ experience while awaiting the sweat-test appointment. Pediatrics 115:1692–1703. Tluczek, A., Mischler, E., & Bowers, B. (1991). Psychological impact of false-positive results when screening for cystic fibrosis. Pediatric Pulmonol Suppl 7:29–37. Tluczek, A., Mischler, E., Farrell, P.M., et al. (1992). Parents’ knowledge of neonatal screening and

response to false-positive cystic fibrosis testing. J Dev Behav Pediatr 13:181–186. Tu, J.V., Willison, D.J., Silver, F.L., Fang, J., Richards, J.A., Laupacis, A., et al. (2004). Impracticability of informed consent in the registry of the Canadian Stroke Network. New England Journal of Medicine 350(14):1414–1421. United States General Accounting Office. (2003). Newborn Screening Characteristics of State Programs. Waisbren, S., Albers, S., Amato, S., Ampola, M., Brewster, T.G., Demmer, L., et al. (2003). Effect of expanded newborn screening for biochemical genetic disorders on child outcomes and parental stress. Journal of the American Medical Association 290(19):2564–2572.

39 Justice, Profound Neurological Injury, and Brain Death MICHAEL NAIR-COLLINS AND JAMES M. HITT

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he impairments associated with what’s known as the “vegetative state” (henceforth VS) are devastating. A VS patient, such as the well-known Terri Schiavo, lacks all higher-order cognitive functions; presumably she is completely unaware of herself or her surroundings and cannot engage with her environment in any meaningful way. She has no thoughts, no memories, no purposeful behavior, and will likely never recover, although she maintains the ability to breathe on her own. A brain-dead patient shares these characteristics, except the brain-dead patient also lacks the ability to perform “vegetative” functions such as autonomic regulation of hormones, blood pressure, and ventilation. The brain-dead patient is legally dead, whereas the VS patient is not. Issues of legality aside, these patients have much in common. They both lack (or can be presumed to lack) psychological states, and many would say that the person that once was no longer exists, in both cases. This unusual situation of the presence of some biological function coupled with the absence of psychological function—what presumably makes us persons in any meaningful sense— creates difficult questions regarding the allocation of scarce medical resources. Given the severe impairments and presumed lack of psychological function in such patients, it is natural to wonder: Does social justice demand that resources not be allocated to them? If those resources currently spent on maintaining the profoundly neurologically impaired in what may be termed a “minimal existence” were used elsewhere, they might have a much greater effect in curing or preventing illness, alleviating suffering, and so forth. Is it a fair allocation to spend an inordinate amount (or even any amount) of

resources on patients who many would say aren’t even persons? Several authors have expressed this concern. For example, Brody (1988) writes: Other patients [without VS], who can benefit in substantial ways from access to health care, can be provided the time and resources freed if [the VS] patient dies. Even without a comprehensive theory of justice in the allocation of health care resources, it seems plausible to say that other patients have a greater entitlement to those resources.1

Similarly, in a paper on the aspects of consciousness that should be considered morally relevant in the context of vegetative patients, Kahane and Savulescu mention, in passing, that “considerations of distributive justice may tell against continuing to sustain the life of such a [vegetative] patient at great cost” (Kahane & Savulescu 2009, 13). Dworkin too discounts the value one might attach to a being in VS. In considering what insurance would be prudent to purchase, Dworkin writes, “[i]t would be irrational for almost any twenty-five-year-old to insure himself as to provide for life-sustaining treatment if he falls into a persistent vegetative state” (Dworkin 2000, 313). Perhaps more strikingly, Veatch (1975, 2004) argues that vegetative patients should be considered legally dead, presumably implying that any use of resources on their behalf is unjust. Similar questions arise in the context of the brain dead. Although a brain-dead individual is legally dead, nonetheless certain biological functions do remain, and some states make provisions for “reasonable accommodation” of the views of

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the patient or her caregivers in determining death (and hence, using medical resources on a braindead individual). The New York State Department of Health’s Guidelines for Determining Brain Death (2005, 2–3), for example, includes the following clause: Hospitals must establish written procedures for the reasonable accommodation of the individual’s religious or moral objections to use of the brain death standard to determine death when such an objection has been expressed by the patient prior to the loss of decision-making capacity, or by the next of kin or other person closest to the individual. Policies may include specific accommodations, such as the continuation of artificial respiration under certain circumstances, as well as guidance on limits to accommodation.

The State of New Jersey has provisions that are stronger in this regard, in the 1991 New Jersey Declaration of Death Act: The death of an individual shall not be declared upon the basis of neurological criteria pursuant to sections 3 and 4 of this act when the licensed physician authorized to declare death, has reason to believe, on the basis of information in the individual’s available medical records, or information provided by a member of the individual’s family or any other person knowledgeable about the individual’s personal religious beliefs that such a declaration would violate the personal religious beliefs of the individual. In these cases, death shall be declared, and the time of death fixed, solely upon the basis of cardio-respiratory criteria pursuant to section 2 of this act. (New Jersey Declaration of Death Act 1991, c. 90, s. 5)

Given the large amount of resources necessary to maintain a brain-dead individual—an ICU bed, a ventilator, and a large time commitment from ICU nursing staff—it is plausible to wonder whether social justice demands that scarce resources not be used in such a way. In this chapter we shall explore the issue of distributive justice as it arises in these contexts of profound neurological impairment and brain death. We begin with a brief review of the medical/clinical background on VS, brain death, and related states, and then move to the ethics of health care resource distribution. Ultimately, we argue that a position

of tolerance is the optimal one in these circumstances.

MEDICAL BACKGROUND: C O M A , B R A I N D E AT H , V E G E TAT I V E S TAT E , M I N I M A L LY C O N S C I O U S S TAT E , A N D T H E L O C K E D - I N S TAT E We begin by distinguishing wakefulness from awareness. Wakefulness is linked to arousal, alertness, or the absence of sleep, but its presence does not imply cognition, mental content, or awareness of self or environment. While extremely rough, we trust that the intuitive distinction between being awake but not aware, and being aware of one’s self and environment, is relatively clear. This distinction is the basis for much of what follows. Coma is a pathological state of eyes-closed unresponsiveness; comatose patients have a sleeplike appearance and do not respond to sensory or noxious stimuli. Wakefulness is absent and, presumably, awareness is absent as well. True sleep-like coma almost never lasts for more than 2 to 4 weeks (Bernat 2006, 1181–1182; Plum & Posner 1980, 3), before progressing to the vegetative or minimally conscious state, to recovery, or to death. Brain death is, in essence, a form of coma. In brain death, all functions of the brain have ceased irreversibly. The patient is in a state of eyes-closed unresponsiveness, is apneic, and lacks all cranial nerve reflexes. A brain-dead patient, if mechanically ventilated, can maintain spontaneous circulation, cellular respiration, and spinal reflexes, but cannot carry out brain stem-mediated autonomic functions such as thermal regulation and blood pressure control. It is widely maintained that a brain dead-individual is dead,2 although it is also well understood that some biological functions, such as those mentioned above, do remain. Brain death is not typically described as a form of coma, of course, because comatose patients are alive whereas brain-dead patients are thought to be dead. The non-brain-dead comatose patient who does not recover awareness typically progresses to VS, which is a state of wakefulness in the absence of awareness. The vegetative patient exhibits irregular sleep–wake cycles, lies with her eyes open while awake, and breathes spontaneously. She has preserved autonomic and hypothalamic function and cranial nerve reflexes, but does not exhibit any evidence of awareness of self or environment

Justice, Profound Neurological Injury, and Brain Death through sustained, reproducible, apparently purposeful or voluntary behavior in response to stimuli. Importantly, even though a VS patient may lie with her eyes open, responses to visual cues are absent. Consistent, sustained, reproducible visual tracking is considered evidence inconsistent with VS (Jennett & Plum 1972; Multi-Society Task Force on PVS 1994a, 1994b). Some patients progress, either from VS or directly from coma, to a state of severely impaired responsiveness resembling VS, except that they show some limited evidence of awareness. This is known as the minimally conscious state (MCS). The patient in an MCS, like that in VS, exhibits sleep–wake cycles, spontaneous breathing, preserved autonomic and hypothalamic functions, and cranial nerve reflexes. Additionally, she is able to gesture yes/no answers, show reproducible visual tracking, or reach for or grasp objects in a way demonstrating a cognitive association between the object’s size, shape, or location, relative to the patient (Giacino 2004; Giacino et al. 2002). Thus, the MCS patient does exhibit limited evidence of awareness of self and environment, in addition to wakefulness. Finally, a distinct neurological disorder that is sometimes confused with coma, VS, or MCS is known as the locked-in state. This is not a disorder of consciousness at all; it is instead a movement disorder characterized by nearly complete paralysis. However, the patient does retain the capacity for vertical eye movements and eye opening when asked, and maintains normal cognitive function (Bernat 2006, 1184).

DESCRIPTIVE DISTINCTIONS AND N O R M AT I V E CONCLUSIONS In theory, there is a great difference between the vegetative and minimally conscious patient. While the vegetative patient maintains sleep–wake cycles and some primitive neurological functions, presumably she is also entirely unaware of herself and her surroundings. She lacks all thought and all mental content; she has no goals or desires, no fears, no pain, and no interests whatsoever. The person, the subject of experience or the experiencing self, no longer exists.3 There is, as one might say, “no one there.” By contrast, the minimally conscious patient does show some limited evidence of awareness. She is able to follow some simple commands and respond to her environment in some meaningful

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ways. Therefore we may presume a limited amount of thought or other psychological states, and hence, at least in the psychological sense of the term, we should conclude that the person, that locus of experience or psychological states, exists. The presumed difference between the VS and MCS patient lies in the absence or presence of psychological states, which is a descriptive, nonnormative distinction. However, supposing this distinction to be accurate, the normative concerns about social justice and the distribution of resources mentioned at the outset of this chapter become pressing. Namely, if the VS patient lacks all psychological states, then she feels no pain, has no capacity for awareness of self or others, and has no memory, desires, or thoughts. Therefore presumably she has no interests and is no longer a locus of moral value, at least not in the same way that a non-VS individual is a locus of moral value. As a result, there is prima facie reason to suggest that justice demands that resources not be allocated to the VS patient. On the other hand, there is less reason to suggest this with respect to the MCS patient, since she does enjoy some psychological states, and so presumably has interests, at the very least in not feeling bodily pain, and perhaps she has further interests in fulfilling her goals.4 We need not adjudicate here whether the normative conclusion—that VS patients have no interests and are prima facie entitled to fewer or no resources on these grounds—follows from the descriptive distinction between the presence and absence of psychological states. Instead, we suggest that for this basic argument to direct practical decision-making on resource allocation, there should be at least a reasonable (but not absolute) level of confidence in the claim that patients diagnosed as VS do in fact lack all psychological states. If we cannot make that claim with reasonable confidence, then the normative conclusions suggested above have no practical import in actual decision-making. There are two reasons why we should currently lack such confidence. First, we don’t yet know enough about the many forms of consciousness and their neurological substrates in general, nor the specific pathology of VS in particular, to ground practical allocation decisions.5 Second, the misdiagnosis rate for VS is unacceptably high. We shall begin with the former concern. There are many different aspects of consciousness, and the medical term “awareness” seems to capture a conglomeration of several. Specifically,

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it seems to involve phenomenal consciousness, which involves the qualitative “raw feel,” or the “what it is like to be” a conscious subject having a conscious experience (Block 1995, Nagel 1974). It also seems to capture access consciousness, or the ability to integrate sensory and mnemonic information in the guidance of goal-oriented behavior (Block 1995). Additionally, the medical term “awareness” may involve both transitive consciousness, or consciousness of something, as well as state consciousness, which is a property of conscious mental states, not persons (Rosenthal 1997). By possibly conflating these, it isn’t clear to what the claim “VS patients lack awareness” actually amounts. Thus, more conceptual clarity is needed. Further, the diagnosis of VS is made based on third-person behavioral criteria, not anatomic or neurophysiologic criteria. At its core, the diagnosis is essentially a clinician’s determination of whether a particular patient’s behavioral repertoire is “meaningful” or not. But this is necessarily speculative. A VS patient can grimace, blink, grunt, cry, smile, and move her limbs and eyes. The clinician’s responsibility is to determine whether these behaviors are purposeful or not. But when the patient is unable to communicate, if there is some purpose to any of these behaviors, or if they are in response to some internal stimuli (sadness, an itch, a pain, etc.), it will be impossible for the clinician to determine this. This is not to say that VS patients do in fact respond to internal stimuli, it is simply to say that there is no way to tell from behavioral criteria alone whether they do or don’t. In time, anatomic pathology may assist in diagnostic assessment. At present, however, there are no pathologic criteria available to replace clinical assessment of “purposive” behavior. Hence, not even postmortem autopsy can confirm or refute the diagnosis. Sometimes the cortical cell bodies are destroyed as a result of anoxia secondary to cardiac arrest. Other times there is widespread axonal shearing due to traumatic brain injury, with relative preservation of cortical cell bodies (Bernat 2006). Yet other times there is preservation of both the cortical cell bodies and their axonal connections, but there is damage to the thalamus, such as in the famous Karen Ann Quinlan case (Kinney et al. 1994). Additionally, there are no definitive imaging or electrophysiologic modalities for making the diagnosis of VS. Instead, there is evidence suggesting the relative preservation of normal or close-to-normal neural activity in brain areas responsible for sensory and pain processing in the

brains of patients diagnosed as VS. This increases the uncertainty currently surrounding the diagnosis of VS. Electrophysiologic studies have shown that brain stem auditory evoked responses are typically preserved (Bernat 2006). Cortical somatosensory and auditory evoked potentials may be preserved (Jones et al. 2000, Marosi et al. 1993, Rappaport et al. 1991), showing evidence of intact primary sensory areas (Boly et al. 2004). Other studies have shown preservation of what are known as “cognitive” evoked potentials in VS patients (De Giorgio, Rabinowicz, & Gott 1993; Glass, Sazbon, & Groswasser 1998; Gott, Rabinowicz, & DeGiorgio 1991; Yingling, Hosobuchi, & Harrington 1990). In a recent series of articles, Owen, Coleman, and colleagues have described the use of functional neuroimaging (fMRI) to detect neural activity in clinically diagnosed VS patients. For example, the neural correlates of speech processing are determined using healthy controls, then the activation patterns of VS patients, in response to the same stimuli, are compared to those of the healthy controls, and (some are) found to be statistically indistinguishable (Coleman et al., 2007, 2009; Owen & Coleman 2008a, 2008b; Owen, Coleman, Boly, Davis, et al. 2007; Owen, Coleman, Menon, Berry, et al. 2005; Owen, Coleman, Menon, Johnsrude, et al. 2005). Other neuroimaging studies have documented the preservation of neurological responses in cortical primary sensory areas (Laureys et al. 2000, Laureys et al. 2002, Boly et al. 2004), as well as secondary somatosensory, insular, and anterior cingulate cortices (Kassubek et al. 2003) to a variety of sensory and noxious stimuli in some VS patients. Owen and colleagues report on the case of a clinically-diagnosed VS patient who was asked to imagine playing tennis, then imagine wandering the rooms of her house, while researchers scanned her brain using fMRI. They found neurological activity in the supplementary motor area and the parahippocampal place area, similar to healthy controls, after the instruction to imagine tennis and then wandering her house, respectively (Owen et al. 2006). Building on this methodology, Monti and colleagues were able to replicate this finding, and then, apparently, communicate with a clinically-diagnosed VS patient, who was able to correctly answer a few personal history questions by willfully modulating brain activity, which could then be assessed using fMRI techniques (Monti et al. 2010).

Justice, Profound Neurological Injury, and Brain Death Pain sensation is mediated by subcortical structures (Bromm & Desmedt 1995, Casey 1991). While cortical areas are also involved in pain processing, presumably there can also be intact pain sensation in the absence of cortical sensory areas (as exemplified in stroke and hemispherectomy; Brodal 1981, 89–90, 113–114; Shewmon 2004, 219) and in the absence of cortical limbic areas (Bouckoms 1989; Shewmon 2004, 219). PET studies have shown activation of the midbrain, thalamus, and somatosensory cortex in response to noxious stimuli, both in the presence and absence of somatosensory cortical evoked potentials (Laureys et al. 2002). Crucially, subcortical pain pathways in VS patients are preserved; without a partially functioning brain stem the patient would be dead or brain dead, not vegetative. Thus, there is a range of evidence from different investigative paradigms suggesting the preservation of various neurological functions involving pain and sensory processing in the clinically diagnosed VS brain. Given the above considerations, it is reasonable to adopt the weak position that, at least at this point, we don’t yet know enough. We don’t know enough about psychological states, the many forms of consciousness, or their neurological bases; we don’t know enough about the various neuroanatomic changes and neurophysiologic deficits of VS; and we don’t know enough about which elements of psychological function, pain processing, or sensory processing, if any, are preserved in any individual VS patient. Given this much uncertainty, we conclude that we do not yet have enough confidence in the medical/descriptive claim that VS patients lack all psychological states to ground unilateral treatment withdrawal based on considerations of justice. Even if all of the above uncertainty were clarified, there is a further concern that is perhaps even more pressing: VS is consistently misdiagnosed at a very high rate. Early studies found behavioral evidence of awareness in 37% to 43% of patients diagnosed as VS (Andrews et al. 1996; Childs, Mercer, & Childs 1993). More recently, Schnakers et al. (2009) found a misdiagnosis rate of 41% for patients in VS and 10% for patients in MCS (those misdiagnosed as VS were determined to be in MCS; those misdiagnosed in MCS were determined to have emerged from MCS). With a consistent misdiagnosis rate of around 40% over the past 15 years, it would be irresponsible to assume, because a patient has been diagnosed as VS, that she lacks psychological states.

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For both of these reasons, we conclude that the claim that VS patients lack all psychological states cannot be made with a reasonable level of confidence. As a result, the normative claim that VS patients are entitled to fewer or no resources on the grounds of their lack of psychological states should have no practical import in actual decision-making. It may very well be true, but the level of uncertainty surrounding the diagnosis is far too high to ground resource allocation decisions. Although we acknowledge that there is extreme dysfunction in VS patients, it is more appropriate to provisionally treat VS patients as being in the same moral category as MCS patients, at least until some of the uncertainties discussed above can be sorted out.

COST OF CARE In any allocation scheme, we should weigh the costs against the benefits of proposed interventions. Any intervention that is unlikely to achieve its desired aim yet carries a great cost has low efficacy and therefore is unlikely to be considered justly allocated in situations of scarcity. We discuss the concept of efficacy and its role in resource allocation more fully below; in this section we consider the epidemiology, care needs, and cost of caring for the profoundly neurologically impaired. Epidemiological information specific to VS and MCS is difficult to obtain. As Beaumont and Kenealy (2005, 184) write: To establish valid epidemiological data depends critically on two principal factors: Clear, precise, and universally accepted criteria for the diagnosis of a disorder, stable over time; and adequate systems for the collection of epidemiological data. Neither exists for vegetative state (VS) or for minimally conscious state (MCS).

Nonetheless, we do have some estimates available. Ashwal (2004) estimates worldwide prevalence of VS at 49 per million population (PMP), while Jennett (2002a, 2002b) estimates the prevalence of VS in the United States to be between 40 and 168 PMP for adults, and between 16 and 60 PMP for children. The data on MCS are even less reliable; Beaumont and Kenealy (2005, 188) simply state that “the incidence and prevalence of MCS have yet to be established.” Giacino and colleagues (Giacino et al. 2002), while acknowledging that accurate estimates are unavailable, nonetheless hazard a prevalence estimate of between 48 and

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96 PMP for MCS, for the combined adult and pediatric populations. By way of comparison, the prevalence of stroke in the United States is around 20,700 PMP, and the prevalence of coronary artery disease in the U.S. is about 57,000 PMP (American Heart Association 2010). Thus, VS and MCS are relatively rare conditions, and this limits their overall cost. The difficulties and ambiguities in diagnosing these conditions result in unreliable epidemiological statistics, as mentioned above. It also results in difficulties establishing cost of care estimates, since this depends on reliable diagnostic criteria and reliable epidemiology. However, although precise information specific to VS and MCS is difficult to come by, nonetheless we can consider more general cost estimates based on the kinds of care required, which we discuss below. VS and MCS patients who suffer either a traumatic or nontraumatic injury receive initial care in a hospital, typically an intensive care unit (ICU). The patient may then continue rehabilitation or care in an acute rehabilitation center or in a skilled nursing facility such as a nursing home. Standard medical treatment includes nursing care needs such as hygiene, bowel and bladder care, skin care, and frequent repositioning. Passive range of motion and stretching exercises are needed to prevent rigidity and contractions. A gastrostomy, or feeding tube, is necessary for about 50% of VS patients (Ashwal 2004; Kaliski, Morrison, & Meyers 1985), as normal swallowing may be preserved in others. Pulmonary care is useful to prevent infections although the VS/MCS patient breathes spontaneously and is thus not on a ventilator. Daily costs in a hospital are more expensive than in a long-term care facility. In an ICU without ventilator support (in the United States), the daily cost of care is about $6,667 for the first day, $3,496 for the second, and the mean daily cost is about $3,184 thereafter (the costs are much increased when ventilator support is needed; see Dasta et al. 2005). In contrast, the cost for a private room in facilities with skilled nursing and custodial care ranges from the national average in the United States of $219 daily to a high of $584 daily in Alaska (Metlife Mature Market Institute 2009). As mentioned above, most VS patients progress from coma to the VS within 2 to 4 weeks, allowing a move from intensive care to a skilled nursing facility. This results in a cost of about $146,000 for the first year (including ICU care and nursing facility care) and an average yearly cost of about $79,900 for skilled nursing care

thereafter. We make these estimates based on the national average cost of nursing care and the assumption of 3 weeks of ICU use without a ventilator; they comport fairly well with the findings of one study by Fields et al. (1993), who estimate the cost of long-term, non-acute care for VS patients at about $90,000 per patient per year. This was a mailed questionnaire study, based on a sample of 20 pediatric patients in the United States diagnosed with VS who had been discharged home, and whose primary costs included 10 to 12 hours of nursing care per day. Taking the low and high prevalence estimates from above, based on a population estimate of 304.5 million (U.S. Census Bureau 2008), and using $90,000 per patient per year as a cost estimate, we get a total cost for the combined VS and MCS population (both adult and pediatric) of between $2.9 billion and $8.9 billion per year in the United States. This is a huge expenditure, but by way of comparison, the estimated cost of cardiovascular disease in the United States in 2010 will be $324.1 billion in direct costs (hospitals, medical professionals, medications, etc.) and $503.2 billion when the indirect cost of lost productivity is added to that estimate (American Heart Association 2010). As a word of caution when considering these cost estimates, however, we note once again that they should be considered only partially reliable at best, and are used only to get a very general idea of the amount of cost involved.

JUSTICE AND THE MORAL COMMUNITY Justice involves treating like cases alike or treating similarly situated people similarly. While this formal concept of justice derived from Aristotle is clearly the backbone of all concepts of justice, it is merely formal, in the sense that it provides a form or structure, but lacks meaningful content. Everything in the universe is like everything else in the universe, in some respects. To understand what justice requires in any particular situation, we must understand the criteria for relevant similarity for that particular situation. Different distribution schemes—libertarian, utilitarian, egalitarian, prioritarian, need, urgency, efficacy, and so forth—are at bottom criteria for determining relevant similarity. If two people are similar in need, urgency, and efficacy, for example, then according to Rhodes’ account of clinical justice (Rhodes 2005; 2007, 1186), they are relevantly similar and hence should be treated similarly. By contrast, if two people require different amounts

Justice, Profound Neurological Injury, and Brain Death of resources in order to preserve or restore normal or species-typical functioning so that their opportunities can be equalized, then according to Daniels’ egalitarian, equality of opportunity account (Daniels 2002, Chapter 1), those two should be treated differently, because they are relevantly dissimilar. To understand fair resource allocation in practical terms, we should answer two questions. First: Who gets consideration at all? That is, we start with a pool of potential claimants, without yet prioritizing their claims on health care resources. Second: Given that pool, how do we split it into categories and then prioritize the categories (cf. Beauchamp & Childress 2009, 275–279)? In this way, each member of each category is relevantly similar to every other member of that category, and justice is served when all members of that category are treated alike; however, the categories themselves get ranked in order of priority. This takes into account that resource distribution is relative to supply and demand, and ranks the strength of each group’s claim on resources against one another. One underlying motivation for determining principles of just distribution is the recognition that people have value and their interests matter. The way basic benefits and responsibilities of social cooperation are distributed, including especially resources tied to health care, has a direct effect on people’s life plans and expectations, their ability to pursue their goals, and hence, the satisfaction of their interests. We suggest then that a reasonable starting point is to briefly examine the more fundamental issue of the determinants of human moral worth, or value. Namely: What is it that makes an individual valuable? Examining this question will help in determining the pool of potential claimants on health care resources. We assume that having moral worth is sufficient to place one within this larger pool. We will henceforth use the term “moral community” to refer to the group of individuals that have moral value, and in virtue of which they are potential claimants on health care resources. Given a moral community, a distribution principle splits that community into categories and ranks the strength of their claims on health care resources. We can also consider distribution principles as relevance criteria, because they specify the relevant respects that determine likeness for purposes of fair resource allocation. A complete theory of distributive justice therefore requires both a theory to determine the moral community,

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as well as a distribution principle, relevance criterion, or ranking scheme, which ranks the strength of each sub-category’s claim against every other. Notice that being a member of the moral community gives one standing as a potential claimant but does not guarantee the right to resources, as the distribution principle might rank one’s claims as having less priority than most others.

P O P U L AT I N G T H E MORAL COMMUNITY: THREE CONCEPTS OF M O R A L WO RT H The Kantian view is that rational agents have intrinsic moral value; everything else that has value only does so relative to the value attributed it by a rational agent. To be an agent is to be able to have and give reasons, and to autonomously guide and direct one’s behavior in light of one’s goals and reasons. As a result, rational agents are moral agents, in the sense that they can be held morally responsible. This Kantian view of personhood and moral value is deeply ingrained in our common law traditions, via notions such as respect for privacy, personal liberty, and the right of selfdetermination, as well as culpability, negligence, and malpractice. It is also deeply ingrained in health care ethics, as the well-regarded principle of respect for autonomy. On this view, humans are morally valuable because they have the ability to guide and direct their behavior based on reasons. A different view, grounded in the utilitarian tradition, does not look to agency to confer value, but simply the ability to experience pain.6 Someone who has the ability to have and give reasons is responsible for her actions, and is thus a moral agent and a member of the moral community. A moral patient is a member of the moral community, deserving of consideration by moral agents.7 On this view, living things that have the ability to feel have moral standing and deserve consideration. To compare the Kantian to the utilitarian view, it is important to recognize that, while the Kantian holds the ability to be self-legislating above else as conferring intrinsic moral value, Kant would not claim that non-agents deserve no moral consideration. Rather, for Kant, there is a general duty of beneficence, whereby agents have the obligation of treating non-agent moral patients beneficently. The Kantian would not claim that, for example, a severely demented person should not be treated humanely. There is, however, a very crucial distinction between the Kantian and utilitarian views

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that should not be elided: Simply having the ability to feel pain at all confers moral standing according to the utilitarian view, but not according to the Kantian. Therefore animals, humans with profound mental disability, infants, etc., all have moral standing on the former view. By distinction, the Kantian view of moral value would not assign individuals in the aforementioned categories inherent moral value. A different way of thinking about human moral value derives from a sort of essentialist, exceptionalist view of humanity, which we will call the biological essentialism view. On this view, humans have moral value simply qua biologically functioning human being. Thus, having the human genome and being biologically alive (or even simply maintaining certain biological functions involving the maintenance of internal homeostasis and resisting entropy) confer moral value. This view is not explicitly tied to any particular tradition in moral theory; however, the idea that humans are special, indeed morally special, has been around for as long as humans have, is expressed in the teachings of various religious traditions, and is sometimes expressed in terms of the sanctity of human life, or human dignity. Hence, simply having the human genome and having some (unspecified) level of biological functioning confers moral value on the biological essentialism view. We do not propose here to adjudicate a longstanding dispute between Kantians and utilitarians on such a fundamental issue as the core determinant of moral worth. We also do not propose to challenge or defend the longstanding view that assigns moral worth to a biologically functioning human, and finds expression in some of the world’s major religions and, perhaps, mainstream intuition. Instead, we shall take note of the following. The allocation of public resources is a public policy issue. The overarching goal of such policy is to create a system that all can acknowledge as rational, relevant, and fair, even though we do not all share the same basic worldview or value system.8 There is no consensus on what fundamentally determines human moral worth. However, the three conceptions canvassed above are commonsense, based in venerable philosophical and religious tradition, and widely regarded as relevant and reasonable, even though there is no consensus that any one of them is superior to the others. Therefore we argue that each element— self-determination, capacity for pain, and biological function—is enough to determine “as if ” moral worth. In other words, in the context of

policy that structures a heterogeneous society, it doesn’t matter whether any of these determine actual moral worth. Rather, it is enough to claim that it is sensible to treat an individual that satisfies any of these characteristics as if she were a member of the moral community, on the grounds that reasonable people do in fact do so, and for reasons that all can acknowledge as relevant. We recommend that a quasi-pluralistic approach of tolerance is the optimal one. However, while we acknowledge the reasonableness of some level of difference in our fundamental value judgments, we neither advocate nor accept an “anythinggoes,” subjectivist, nor relativist approach. We do not, for example, advocate ranking life as an overriding value so that it trumps the patient’s wishes or the surrogate’s ability to discontinue life-sustaining care. This makes our theory of the moral community “quasi” pluralist. Patients with the most severe neurological impairments—even brain death—are members of the moral community, on the quasi-pluralist conception recommended here. The MCS patient has some limited capacity for awareness of her internal and external milieu. She is able to respond with meaningful gestures and thereby to communicate her desires. It is not obvious whether we should assume that the MCS patient has the capacity for self-determination in a robust sense, thereby meeting the Kantian’s standard for moral standing, but she clearly has the capacity for pain and other psychological states, thereby meeting both the utilitarian’s and the biological essentialist’s standards. The VS patient is biologically alive and continues to perform a range of biological functions, albeit in the presence of profound neurological disorder. By this circumstance alone she qualifies to be treated as if she were a member of the moral community. Furthermore, we currently lack reasonable confidence in the claim that any individual VS patient is without psychological states, for the several reasons discussed above. Therefore the VS patient may very well have some rudimentary psychological functions preserved, including especially the reception and transduction of sensory and noxious stimuli. If so, this would satisfy the utilitarian’s standard for moral worth as well, though not the Kantian’s. The brain-dead patient is also a member of the moral community. Although legally dead, the brain-dead individual continues to perform various biological functions that serve to resist entropy and maintain homeostasis. These include cellular

Justice, Profound Neurological Injury, and Brain Death respiration, circulation, gas exchange at the alveoli, and many others. As a result, the brain-dead individual is a minimally biologically functioning human, and therefore qualifies to be treated as if she were a member of the moral community, on the grounds that we have mentioned above: Reasonable people do in fact value these individuals as having intrinsic moral worth, and for reasons that all can acknowledge as relevant even though not all will accept these reasons as sufficient. We urge a tolerant, quasi-pluralistic conception of the moral community that makes room for differing fundamental judgments on the determinants of moral worth. A consequence of this view is that even the most severely neurologically impaired individuals (indeed, even the brain dead, who are legally dead) deserve to be treated as if they are loci of intrinsic moral worth, and are therefore potential claimants on health care resources. However, recall that distributive justice requires, in addition to a conception of the moral community, a distribution principle or ranking scheme. This distribution principle will split the pool of potential claimants into smaller categories, and prioritize them according to some ranking scheme. It is consistent with what we have argued here that different principles should be applied in different scenarios (say, in the context of scarce organs for transplant as opposed to relatively abundant resources like some antibiotics).

THE ROLE OF EFFICACY IN RESOURCE DISTRIBUTION There are many different criteria that might be used as distribution principles that categorize and rank the members of the moral community for purposes of health care resource distribution. These criteria are usually based in large-scale theories of social justice, such as egalitarianism, prioritarianism, utilitarianism, libertarianism, and so forth. As above, we will not attempt to arbitrate such large-scale and fundamental theories in a single chapter. Instead, we urge that a focus on consensus and compromise is appropriate in making policy decisions. While there are many entrenched and sometimes opposing views on what constitutes a fair distribution of resources, in situations of scarcity in medicine, the importance of the principle of efficacy is well accepted. When resources are scarce, the assumption behind appealing to efficacy is that, if some particular resource is not likely to help the person to whom it might be

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given, then it should not be given to that person when it might help another. For example, it seems unjustified to transplant a heart into a patient who already has multiple organ failure and is unlikely to survive even with the heart transplant, because by doing so, some other patient with a much higher chance of survival gets denied, and the end result is that both patients die when one could have been saved. However, while the appeal to efficacy during scarcity enjoys widespread acceptance, the principle itself needs explication. Efficacy is the likelihood that a particular intervention will have its desired effect. However, an important and open question is: What should be the desired effect? While assessing the likelihood of a desired medical outcome given some intervention is a non-normative matter for science to grapple with, deciding on what the benefit should be is a normative matter. Embedded within the principle of efficacy in resource distribution is a value judgment about what benefits are the most important. For example, consider the classic battlefield triage case. Many soldiers are badly wounded, and supplies, including the medic’s time and availability, are limited. In this case of extreme scarcity, those who are highly likely to die even if treated are prioritized against, so that the medic is able to treat those who have a reasonable likelihood of survival. The embedded value judgment is that life is the most important good, and if treatment will not have the desired effect of preserving life for some individual soldier, then treatment should not be allocated to her. However, while the preservation of life is an obvious good, there are others that should also be considered. Freedom of movement, the preservation of functional limbs, the preservation of cognitive capacities, and relief of pain are some other moral goods that might be appealed to as components of the principle of efficacy. Indeed, there is an important connection between the concepts of moral worth discussed above, efficacy, and the profound neurological impairments under consideration here. Specifically, whether some intervention made on behalf of a patient with VS is efficacious depends on one’s underlying views about what the goals of treatment are or should be. For example, imagine a VS patient such as Terri Schiavo with severe pneumonia and in need of a ventilator and antibiotics, as compared to a non-VS patient in similar circumstances. A Kantian would argue that the treatments are more efficacious for the non-VS patient than for the VS patient: The interventions are likely to restore or preserve the non-VS patient’s

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capacity for self-determination, but will not do so for Schiavo. On the other hand, the biological essentialist might argue that so long as the interventions have an equal likelihood of preserving biological life and returning each patient to her former state, then the treatment is equally efficacious in both cases. Similar disagreements will arise in the context of MCS and brain death, and between utilitarians and others. Again we appeal to consensus. Just about everyone agrees that preserving life, preserving autonomy, and minimizing pain are each important goals of medicine. Therefore it is appropriate to appeal to any of them as components of the principle of efficacy. The disagreement is not about whether any of these things are important goals of medicine; rather, the disagreement is about which of them is minimally sufficient for moral standing, as discussed above. The Kantian takes only the capacity for self-government to be minimally sufficient, the utilitarian takes the capacity for pain to be minimally sufficient, and the biological essentialist takes biological functioning to be minimally sufficient. But everyone agrees that, if it is possible to preserve life while minimizing pain and preserving or restoring autonomy—in other words, if it is possible to achieve all three—then that is clearly the optimal outcome. For practical allocation decisions, the Kantian would be wrong were she to claim that only preserving autonomy makes for an efficacious medical treatment, but the biological essentialist would similarly be wrong were she to claim that preserving life and autonomy is equally efficacious as preserving life in the absence of autonomy. Instead, the best answer for real-world policy is somewhere in the middle of these two extremes. It is efficacious to treat a VS patient, because doing so can achieve one of the several obvious goals of medicine, which is to preserve life. It is also efficacious to treat a non-VS patient in similar circumstances, because doing so can achieve the goals of preserving life and preserving autonomy. However, if it becomes necessary to compare the efficacy of a given treatment when provided to two patients, one for whom self-determination can be preserved and another for whom it cannot, then it would be more efficacious to treat the former. This is justified on the simple ground that more of the widely accepted goals of medicine can be achieved for the former than for the latter. We now apply these considerations to discuss resource allocation and reasonable accommodation in brain death, VS, and MCS.

B R A I N D E AT H A N D REASONABLE A C C O M M O D AT I O N The concept of death is both vague and ambiguous, and the word “death” has evolved to take on several meanings. Rhodes (2003, 1–7), for example, notes the following: While it may not always have been so, today the word ‘death’ has three distinct senses. ‘Death’ is a rough marker for a complex biological event. ‘Death’ is also an important marker in the social/ legal/political realm. And ‘death’ indicates distinctions in the moral realm.

The biological notion of death involves the cessation of the functioning of the organism as a whole; or, it involves the loss of the integrative unity of the organism. In this context, “functioning” is typically taken to mean the resistance of entropy and the maintenance of internal homeostasis (Bernat, Culver, & Gert 1981; Korein & Machado 2004). The legal definition of “death” is stipulative, and thus true by definition. It reflects sociopolitical, legal, and moral reasons for saying that an individual is legally dead, so that the legal and social status accorded to living humans ceases. Currently, there is international consensus in support of either the whole-brain or brain stem formulation, which states that an individual is legally dead when all functions of her brain (or brain stem) have ceased irreversibly. In every state of the United States except New Jersey and New York, discretion for determining death by either brain death or cardiorespiratory arrest resides with the physician. Family members do not have legal authority to prevent or forestall the determination of death by the brain death protocol. Physicians may of course be sensitive to the concerns, worries, and plight of family members and may choose an option that best fits the family’s situation. Still, the physician remains the final arbiter. By contrast, in New York and New Jersey, the family’s or patient’s prior moral beliefs regarding death and brain death play a more prominent role in the determination and certification of death, and hence in resource usage. In New York, after the determination of brain death but prior to certifying death, if it is known that the patient had moral objections to the brain death standard, the hospital must provide reasonable accommodation (New York State Department of Health 2005).

Justice, Profound Neurological Injury, and Brain Death In such circumstances, New York permits the expenditure of resources on brain-dead patients. The guideline does not permit absolute accommodation, however, as a hospital is not required to continue ventilation indefinitely. In effect, the policy establishes a legal side-constraint on allocation decisions by the hospital or medical team without insisting on an inviolable requirement. The New Jersey Declaration of Death Act (New Jersey Declaration of Death Act 1991) similarly allows family members the discretion for determining death according to cardiorespiratory criteria, based on the moral or religious beliefs of the patient. New Jersey’s legislation favors respecting beliefs about death so that the patient’s family can insist that the hospital continue expending medical resources even when the patient would be determined legally dead according to the brain death protocol. Some seek to expand the New Jersey exemption as a general right (Veatch 1999) and to treat the New Jersey Declaration of Death Act as signaling a new direction for developing public policy (Olick 1991). From the recognition that individuals have alternative conceptions of death, the position presumes that whether a person is dead is a moral rather than a scientific matter. As such, it should be left to the patient’s beliefs which of the two alternatives should be used by the medical profession in determining and certifying death. Our quasi-pluralist conception of the moral community explains and justifies the New York and New Jersey brain death policies. We accept the reasonableness of some religious views that accord moral value to a brain-dead but biologically functioning individual because, implicitly at least, we accept that the biological essentialism view is at least one of a range of reasonable, fundamental views about human moral value; or, it is at least not unreasonable to make this fundamental value judgment. Furthermore, reasonable accommodation is not a radical departure from common practice. Treatment and care continue to be evidence-based, and patient or proxy requests for uncommon treatment (e.g., deep-brain stimulation for prolonged VS patients) or non-standard treatment (e.g., homeopathy) can be refused. Reasonable accommodation forestalls decisions by the hospital or medical team to discontinue or reduce treatment, but need not supplant those decisions. Additionally, we acknowledge the importance of the voices of the medical profession in determining the appropriateness of certain medical

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interventions, such as maintaining a brain-dead individual through intensive life support. Although there are many individual physicians who oppose brain death as a criterion for death, nonetheless no professional medical organization rejects it. By forestalling but not preventing physicians from declaring a patient dead by neurological criteria, which is an accepted and standard practice, New York’s reasonable accommodation policy preserves the integrity of the profession while also acknowledging the reasonableness of different value judgments. While we allow a quasi-pluralist conception of value, we neither advocate nor accept an “anything-goes” approach either. We do not and should not, for example, make accommodations for a religious view that doesn’t accept cardiac death as death. If all biological functions have ceased, we do not make exceptions if someone were to claim that her religion demands that the body be kept on a ventilator or even in a hospital bed. Furthermore, we acknowledge that the legal definition of “death” is a stipulative one that reflects sociopolitical, legal, and moral reasons for saying that an individual is legally dead. As such, there is a value judgment embedded within it, and therefore it is appropriate to allow for reasonable accommodation of other, different value judgments. We therefore argue that it is an appropriate institutional, state, or federal policy to allow individuals to be accorded reasonable accommodation from the brain death standard for death if they or their surrogates object on moral grounds (i.e., if they attach moral value to a biologically functioning human). However, in the face of scarcity, efficacy plays an important role here as it does elsewhere. When an individual doctor or hospital administrator is faced with the choice of either removing a brain-dead individual from a ventilator or ICU bed, or denying that resource to someone else who isn’t brain dead, the choice should always go in favor of the non-brain-dead patient. This is justified on the grounds of efficacy: The brain-dead patient might be maintained in a state of minimal biological function for some brief period of time, but she cannot be restored to rational agency, nor even to a state in which any psychological states occur at all. Since the level of biological functioning is so minimal and cannot be restored to anything near normal functioning, scarce resources would be allocated unfairly if another patient is denied resources in favor of the brain-dead patient, on the grounds of the low efficacy of maintaining the brain-dead patient.

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The “reasonable” in “reasonable accommodation” should be understood in terms of resource availability, and the local hospital administrator should have the final word on when the ICU bed, ventilator, or expert nursing staff are urgently needed elsewhere. If these resources can be used to maintain a brain-dead individual who invokes the reasonable accommodation clause without putting someone else at risk of death or permanent disability, then they should be used for that purpose, and this can be a just allocation of resources. If, however, someone else urgently needs them, then the brain-dead individual should be denied those resources, even if it means removal of the ventilator over objection. This is also just because resource allocation is relative to supply and demand.

R E S O U R C E A L L O C AT I O N FOR VS AND MCS PAT I E N T S Brain death is distinct from VS and MCS, medically, legally, and morally. Medically, the brain-dead patient cannot perform the “vegetative” functions still performed by the VS patient, such as regulation of hormones and blood pressure, control of respiration, or cranial nerve reflexes. The braindead patient is on a ventilator, whereas most VS patients are not. Legally, the brain-dead patient is dead whereas the VS or MCS patient is alive. Morally, there are a range of differences. Because there is so much uncertainty surrounding the diagnosis of VS, both in terms of our understanding of the illness and sensory or psychological functions that may or may not be preserved, as well as the high rate of misdiagnosis of VS, it is inappropriate to treat any individual VS patient as being in a different moral category than the MCS population. That is, we lack a reasonable level of confidence in the claim that any individual VS patient lacks all psychological states. Therefore we ought to take the safer route and treat VS patients as MCS patients for moral purposes. MCS patients are severely disabled but nonetheless experience some psychological states. They respond to stimuli in apparently purposeful ways and they communicate, albeit inconsistently. Therefore we should presume that they experience pain and discomfort at least, and possibly have desires that may be fulfilled or frustrated. This puts the MCS/VS population into a different moral category than the brain dead, since the brain dead do not experience pain and do not have any desires to be satisfied or frustrated.

Therefore the brain dead have no interests, whereas the MCS/VS patient has, minimally, an interest in not feeling bodily pain and possibly also interests in having her desires fulfilled. Since there is this important moral distinction between the brain dead and the nearly brain dead such as the MCS and VS, resources ought to be allocated in a way that reflects that difference. Namely, it should be very easy to prioritize against the brain dead on grounds of the low efficacy of any medical treatment, but less easy to do so against the VS/MCS patient. The VS/MCS patient is legally and biologically alive and possibly a subject of some sensory experiences and other psychological states. Therefore treating such a patient can achieve the goals of providing comfort care and maintaining life, although not preserving autonomy. In situations of extreme scarcity, however, it would be unfair to prioritize against a non-VS/MCS patient so as to treat the VS/MCS patient, based on the same considerations of efficacy. To clarify our claims, we will discuss these issues in the context of two cases that follow. First, recall Teresa Schiavo. This is a young woman in a prolonged, 17-year VS whose family disagreed about the best course of care for her, and their difficult family struggle made its way into the arena of public debate through multiple court cases, gubernatorial and legislative intervention, and widespread media coverage (Caplan, McCartney, & Sisti 2006). The moral and legal questions most often discussed with respect to the Schiavo case involve the sanctity of human life and the right to die, the right to self-determination or non-interference, and more generally, respect for the decisions of legal surrogates. In addition to the above considerations, distributive justice is always relevant. To begin, consider that Ms. Schiavo was in need of supportive care for all of her basic needs. As mentioned above, this includes important nursing care needs such as hygiene, bowel and bladder care, skin care, frequent repositioning, and passive range of motion and stretching exercises. While a feeding tube is necessary for about 50% of VS patients, this was not necessary in Ms. Schiavo’s case, nor was she on a ventilator. These basic care needs can be expensive, as discussed above. Given the severe disability and high cost, does social justice demand that patients like Ms. Schiavo be denied care? We argue that it does not. Ms. Schiavo and other VS patients ought to be provided the standard medical and nursing care mentioned above, with public funds if necessary. As we’ve argued

Justice, Profound Neurological Injury, and Brain Death above, these patients are members of the moral community, or, minimally, they should be treated as if they are members of the moral community. Therefore they are potential claimants on health care resources because they have moral standing. Although there is always some amount of scarcity, the resources required for basic needs mentioned above are not so scarce that, by giving care to Ms. Schiavo and others like her, someone else would have to be denied the very same intervention and thereby be put at risk of death or disability. However, circumstances could arise in which this would change. Imagine for example that Ms. Schiavo contracted severe pneumonia and was in need of an ICU bed and ventilator. Imagine further that the ICU has only one available bed, and at the same time, Ms. Smith, a different patient of the same age, say with a history of asthma but no other major ailments, also contracted pneumonia and needed that ICU bed. (Imagine further that there are no nearby hospitals with ICU space available either.) Some individual physician or hospital administrator must make the difficult decision to give the last ICU bed to either Ms. Schiavo or Ms. Smith, with the consequence that whoever does not get the ICU bed will be sent to a standard unit, and be far more likely to succumb to her pneumonia. This circumstance involves a triage context, where efficacy becomes relevant. By all accounts, after 17 years in a VS, Schiavo’s mental function cannot be restored; her status as a moral agent is forever lost. The best that can be done for her is to preserve biological functioning, and, possibly, maintain a state of relative comfort.9 By contrast, Smith is a moral agent and if the pneumonia is treated aggressively, she can be restored to a state of autonomous agency and preservation of species-typical biological functioning, and her pain from the pneumonia can be alleviated. Both Smith and Schiavo are loci of intrinsic moral worth, both are members of the moral community, and providing health care to each is a matter of justice and desert, not beneficence or charity. However, the reality of limited resources, especially in a micro-allocation context, forces a decision with distressing consequences. Justice demands that like cases be treated alike, but Smith and Schiavo are not alike, at least for this allocation decision. Similarly, if Ms. Schiavo had developed organ failure and was in need of a transplant, she should not have been placed on a transplant waiting list, nor should she have received scarce vaccines, as in

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the recent H1N1 flu virus outbreak. Although she should be treated as a member of the moral community and therefore a potential claimant on resources, in these types of circumstances, resources are so scarce that providing a unit of that resource to one individual means that another individual must be denied that very same resource. Obviously in a very broad sense, giving anyone any care means someone else is missing something, but in a more tangible and direct way, giving the organ to Ms. Schiavo means that that particular organ doesn’t go to the next person on the list, and so on, until the very next person on the list that does not get an organ, dies. Although it would be efficacious to provide a transplanted organ to Ms. Schiavo because it could help to achieve the legitimate medical goal of preserving biological life, it would be more efficacious to transplant that same organ to a different patient who is not in a VS because it could preserve both life and autonomy. Let us consider a more recent case. Ruben Betancourt was a 73-year-old man who, after prolonged oxygen deprivation as a result of complications surrounding surgery, developed anoxic encephalopathy in January 2008. He lapsed into unconsciousness, was placed on a ventilator, and was diagnosed as being in a VS. Six months after the initial anoxic insult, Mr. Betancourt was diagnosed with renal failure and given thrice-weekly dialysis treatments. Six months after that, the treating hospital, Trinitas Regional Medical Hospital in Elizabeth, NJ, advised Mr. Betancourt’s family that they felt that further treatment was medically inappropriate and sought to discontinue dialysis and remove him from the ventilator, which would result in his death. The family sought and received a restraining order in April 2009 from the Superior Court of New Jersey, prohibiting the hospital from discontinuing treatment without the consent of the daughter, Mr. Betancourt’s legal surrogate. The hospital appealed, but before further arguments could be heard Mr. Betancourt died, in May 2009. Trinitas physicians argued that Mr. Betancourt was in a persistent, irreversible VS and would not recover. They further argued that dialysis treatment should be discontinued as further care would achieve no medical goal. As a result, they sought to discontinue all treatment, including dialysis, artificial nutrition and hydration, and ventilation, over the family’s objection. Family members argued that the Trinitas medical personnel were incorrect in their assessment, disputing the claim

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that Mr. Betancourt was in an unresponsive, persistent VS. They argued that he would open his eyes or turn his head in response to certain voices, and would recoil when medical personnel approached, anticipating treatment. They, along with Mr. Betancourt’s nephrologist, also disputed the claim that dialysis treatment was futile or harmful, arguing that it is the standard of care for end-stage renal failure (Betancourt v. Trinitas Regional Medical Hospital 2009). Futility, however, is the inverse of efficacy; thus it is relative to some particular outcome to be achieved. For the goal of discharge or return to Mr. Betancourt’s former state of functioning, dialysis and other treatments are futile; that is, their likelihood of achieving this outcome is vanishingly slim. But on the other hand, dialysis treatments served to prevent electrolyte imbalances that would have resulted in cardiac arrest; they thereby furthered the goal of preserving Mr. Betancourt’s life, for 6 extra months, and so were not futile for achieving this other goal. Thus, whether treatment is futile depends on what is considered an appropriate goal of medical treatment. As above, we suggest that a quasi-pluralist position of tolerance is appropriate here. Both the family and the treating nephrologist felt that the goal of extending biological life was an important goal, and dialysis did help to achieve that.10 However, we may still ask whether this use of resources was just. Dialysis treatment is expensive; one study found the average annual cost of in-hospital dialysis treatments for end-stage renal disease to be $51,252 (Lee et al. 2002). Further, the average cost of a single day in an ICU with ventilator support is over $10,000 for the first day, near $4,700 for the second day, and around $4,000 per day thereafter (Dasta et al. 2005). With this great cost, it is not surprising that Mr. Betancourt’s unpaid hospital bill reached $1.6 million before Trinitas sought to discontinue his treatment over the family’s objection (Toutant 2010). Is it fair to use this amount of resources on a ventilated patient with end-stage renal failure in an irreversible VS, when there are so many others in need of care, and who could benefit so much more? We suggest that it is. Dialysis is certainly expensive, but it is not so scarce a resource that using a dialysis machine to treat Betancourt means that someone else will not get dialysis and hence die. Dialysis is an efficacious (and hence medically appropriate) treatment because it can help to keep Mr. Betancourt alive by preventing

fatal electrolyte imbalances. Given that the family believed Mr. Betancourt would have wanted to stay alive in this state, providing treatment further achieves the goal of respecting the wishes of autonomous agents through respecting their surrogates’ decisions. As we argued above, there is no consensus on what fundamentally determines moral standing, but the three aspects of self-determination, minimization of pain, and preservation of biological life are all widely accepted as relevant considerations in this regard. Since it is reasonable to value biological life, even though not everyone values it in the same way, it is a sensible and fair allocation to use resources in order to preserve life, even in the absence of preserving autonomy. As with Ms. Schiavo, there should also be limits. While we argue that it is just to use public funds to provide ventilation, dialysis, and artificial nutrition and hydration to Mr. Betancourt, it would not be just to put him on a kidney transplant list. In this circumstance, the scarcity of resources is not a scarcity of funds, but a scarcity of kidneys. As we argued with Ms. Schiavo, while it would be efficacious to transplant a kidney into Mr. Betancourt for its likelihood of preserving life for a while longer, it would not return him to a state of autonomous self-determination. By preventing death for some other (non-VS) patient in need of a kidney, on the other hand, the transplant would preserve both life and autonomy, and therefore the intervention would be more efficacious if given to the non-VS patient. Distributive justice therefore demands that patients such as Mr. Betancourt or Ms. Schiavo not be placed on organ transplant waiting lists, because the scarcity of resources in that circumstance is far more acute. Finally, many of these well-known cases revolve around families that claim that the clinically diagnosed VS patient does respond in purposeful ways, opposing the physicians who claim that the patient is permanently unconscious. This occurred in both Ms. Schiavo and Mr. Betancourt’s case. These claims from the family should not be ignored or dismissed as wishful thinking. The diagnosis of the VS is problematic and suffers many flaws, as discussed above. Not least of these flaws, the misdiagnosis rate is around 40%; both Mr. Betancourt and Ms. Schiavo had a 2 in 5 chance of not being in a VS, despite their having received that diagnosis. Further, recall that the diagnosis can be neither confirmed nor refuted by postmortem autopsy, by imaging tests, or by electrophysiologic tests.

Justice, Profound Neurological Injury, and Brain Death The diagnosis is essentially a clinician’s determination that the behavioral repertoire of some particular patient, which can include blinking, grunting, crying, smiling, movement of eyes and extremities, and more, is not “purposeful.” If the family, who spends far more time with the patient, believes that the patient is exhibiting some signs of awareness, this should not be ignored. Of course it might very well be wishful thinking on the part of the family, and the well-trained clinician’s observational skills should ordinarily be trusted more than the non-clinician’s. Nevertheless, as we’ve argued above, there is far too much uncertainty surrounding the diagnosis to assert a stark contrast between the VS and MCS patient; and the MCS patient is a subject of experiences. Given these uncertainties, we should not presume that Mr. Betancourt was completely lacking in all experiences, nor that he lacked all psychological states. A fortiori, we should not base normative conclusions about resource allocation on this uncertain medical/descriptive claim.

CONCLUSION The impairments associated with the nearly brain dead such as those in a vegetative or minimally conscious state are profound, and result in the complete or near-complete loss of all cognitive function as well as total dependence on caregivers for all basic needs. This situation of extraordinary cognitive dysfunction (or complete lack of function), coupled with the presence of some remaining biological function, might plausibly lead one to wonder if it would be unjust to allocate scarce medical resources in the maintenance of such a patient, when there are so many others who could presumably benefit more. Furthermore, using resources to maintain a brain-dead individual— who is legally dead—can plausibly seem even more unjust for the same reason. In this chapter we have argued that this is not so, or at least, it is not always so. Social policy on health care resource distribution should be guided by the understanding that we do not all share the same basic worldview or value system, but nonetheless must decide how to allocate resources in a way that all can recognize as reasonable and based on relevant considerations. One way of doing this is to begin with a pool of potential claimants on resources, the moral community, and then split and rank that pool according to well-accepted principles. While there is no consensus on the fundamental determinants of human moral worth, all three of the components discussed above are

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intuitive, widely endorsed, and based in longstanding philosophical and religious tradition. Since even the most profoundly impaired (including the brain dead) satisfy at least one of those criteria, we argue that they should be treated “as if ” they are members of the moral community, on the grounds of tolerance, the lack of consensus on what determines moral standing, and on the ground that reasonable people do in fact treat them as having moral standing, for reasons that all can at least acknowledge as relevant. Therefore they are potential claimants on health care resources. As a result, resources such as skilled nursing care, antibiotics, and even dialysis ought to be allocated to the profoundly neurologically impaired, should this be the decision made by an appropriate surrogate, and this is a just use of resources.11 However, it is also well accepted that in the face of extreme scarcity of medical resources, efficacy is relevant. While “standard” medical treatments such as those mentioned above can be justly allocated to those with profound neurological impairments, it would not be just to allocate extremely scarce resources to them, such as transplantable organs. In this circumstance, efficacy should be one of the guiding principles of resource distribution. Since it would be more efficacious to transplant an organ into a patient for whom both life and autonomy can be preserved, than a patient for whom only biological life can be preserved, justice demands that the organ go to the former.

Notes 1. In the context of the cited paper, Brody is in the midst of a general discussion of several different ethical questions raised by the vegetative patient, providing a broad overview of different positions that one might take. The position on justice stated above is only one of them. 2. Nair-Collins has argued elsewhere (Collins 2009; 2010b; Nair-Collins 2010) that the orthodox view is mistaken: brain-dead individuals are biologically alive. Many other authors have challenged the orthodox view as well. For the orthodox view, see Bernat 1998; Bernat, Culver, and Gert 1981; and President’s Commission 1981. 3. Some use the word “person” to mean something like rational, autonomous, moral agent, capable of having and giving reasons, of guiding her behavior in order to achieve her goals in light of her reasons, and able to be held morally responsible for her behavior. Such a person would be competent to accept or forgo a medical procedure. Here we use the terms “moral agent” or “agent” to mark this category, and “person” in a weaker sense, as the locus of psychological states, or

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the experiencing self. Thus a severely demented person who still has psychological states (she can feel pain, for example) but is no longer capable of having and giving reasons and pursuing her goals in light of them (etc.) is not an agent, but is a person, on this use of terms. 4. Since the MCS patient is able to follow commands and gesture yes/no answers, thereby communicating, it is reasonable to suppose that she might have some rudimentary goals or desires. 5. As an aside, we should note that we do not base this claim on vague worries about the ineffability of consciousness, nor on the presumed non-reducibility of psychological states, nor on the ancient problem of other minds. We are fully confident that consciousness, intentionality, and all other mental capacities can be eventually reductively explained in naturalistic terms, and in particular, in terms of neurological states. See Collins (2010a) for one of our views on naturalistic explanations of mind. 6. In chapter XVII, section i, paragraph 4, note b of The Principles of Morals and Legislation, Jeremy Bentham writes, “What else is it that should trace the insuperable line [between those who deserve moral consideration and those who do not]? Is it the faculty of reason, or, perhaps, the faculty of discourse? But a full-grown horse or dog, is beyond comparison a more rational, as well as a more conversible animal, than an infant of a day, or a week, or even a month, old. But suppose the case were otherwise, what would it avail? the question is not, Can they reason? nor, Can they talk? but, Can they suffer? [sic] (Bentham 1996, 283)” 7. See McPherson 1984 for a discussion of the moral patient as one who can be helped or harmed by an action, or one who has either rights or interests. The concept of a moral patient is associated with the animal rights literature, as in Regan 1983 and Singer 1975, since it is a category that includes sentient animals. 8. We borrow this basic idea from Rawls’ concept of an overlapping consensus (1996, 2005). 9. Although hers was a case of VS, not MCS, recall that we have argued above that the descriptive/medical distinction between the two is far too tenuous to base any normative judgments on that distinction. Thus we should treat VS cases like MCS cases for moral purposes, and that includes treatment plans that include comfort care and pain control. 10. In their influential account of futility, Schneiderman, Jecker, and Jonsen (1990) argue that treatment for patients in VS is qualitatively futile; that is, some measurable outcome might be achieved, but no benefit to the patient can be appreciated by the patient, since she is unconscious. This depends on, first, the descriptive claim that every patient diagnosed as VS is indeed entirely unconscious, a claim that we believe should be qualified to a more agnostic one of uncertainty about the presence of psychological states, as discussed above. But furthermore, it also depends

on a normative claim about the appropriate goals of medical care. While the views of Schneiderman et al. are certainly among the range of reasonable views on this issue, the preservation of biological life is also among that range. In a pluralistic society, we should be willing to accept different fundamental value judgments, while accounting for constraints of reasonableness and fair use of resources. 11. It is worth noting that nothing that we have said here should be construed as asserting that treatment should be forced upon patients or surrogates who do not wish it.

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Justice, Profound Neurological Injury, and Brain Death Brodal, A. (1981). Neurological Anatomy in Relation to Clinical Medicine, 3rd ed. New York: Oxford University Press. Brody, B.A. (1988). Ethical questions raised by the persistent vegetative patient. Hastings Center Report 18(1):33–37. Bromm, B., & Desmedt, J.E. (1995). Pain and the Brain: From Nociception to Cognition. New York: Raven Press. Caplan, A.L., McCartney, J.J., & Sisti, D.A., eds. (2006). The Case of Terri Schiavo. Amherst: Prometheus Books. Casey, K.L., ed. (1991). Pain and Central Nervous System Disease: The Central Pain Syndromes. New York: Raven Press. Childs, N.L., Mercer, W.N., & Childs, H.W. (1993). Accuracy of diagnosis of persistent vegetative state. Neurology 43(8):1465–1467. Coleman, M.R., Davis, M.H., Rodd, J.M., Robson, T., Ali, A., Owen, A.M., & Pickard, J.D. (2009). Towards the routine use of brain imaging to aid the clinical diagnosis of disorders of consciousness. Brain: A Journal of Neurology 132(Pt 9):2541–2552. Coleman, M.R., Rodd, J.M., Davis, M.H., Johnsrude, I.S., Menon, D.K., Pickard, J.D., & Owen, A.M. (2007). Do vegetative patients retain aspects of language comprehension? Evidence from fMRI. Brain: A Journal of Neurology 130(Pt 10):2494–2507. Collins, M. (2009). Consent for organ retrieval cannot be presumed. HEC Forum 21(1):71–106. Collins, M. (2010a). The Nature and Implementation of Representation in Biological Systems. PhD dissertation, Department of Philosophy, CUNY Graduate Center, New York. Collins, M. (2010b). Reevaluating the dead donor rule. Journal of Medicine and Philosophy 35(2):154–179. Daniels, N. (1985). Just Health Care. New York: Cambridge University Press. Daniels, N. (2002). Justice, health, and health care. In R. Rhodes, M.P. Battin, & A. Silvers (eds.), Medicine and Social Justice. Oxford: Oxford University Press. Dasta, J.F., McLaughlin, T.P., Mody, S.H., & Piech, C.T. (2005). Daily cost of an intensive care unit day: The contribution of mechanical ventilation. Critical Care Medicine 33(6):1266–1271. De Giorgio, C.M., Rabinowicz, A.L., & Gott, P.S. (1993). Predictive value of P300 event-related potentials compared with EEG and somatosensory evoked potentials in non-traumatic coma. Acta Neurologica Scandinavica 87(5):423–427. Dworkin, R. (2000). Sovereign Virtue: The Theory and Practice of Equality. Cambridge: Harvard University Press. Fields, A.I., Coble, D.H., Pollack, M.M., Cuerdon, T.T., & Kaufman, J. (1993). Outcomes of children in a

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Laureys, S., Faymonville, M.E., Degueldre, C., Del Fiore, G., Damas, P., Lambermont, B., Janssens, N., Aerts, J., Franck, G., Luxen, A., Moonen, G., Lamy, M., & Maquet, P. (2000). Auditory processing in the vegetative state. Brain 123:1589–1601. Laureys, S., Faymonville, M.E., Peigneux, P., Damas, P., Lambermont, B., Del Fiore, G., Degueldre, C., Aerts, J., Luxen, A., Franck, G., Lamy, M., Moonen, G., & Maquet, P. (2002). Cortical processing of noxious somatosensory stimuli in the persistent vegetative state. Neuroimage 17(2):732–741. Lee, H., Manns, B., Taub, K., Ghali, W.A., Dean, S., Johnson, D., & Donaldson, C. (2002). Cost analysis of ongoing care of patients with end-stage renal disease: The impact of dialysis modality and dialysis access. American Journal of Kidney Diseases 40(3):611–622. Marosi, M., Prevec, T., Masala, C., Bramanti, P., Giorganni, R., Luef, G., Berek, K., Saltuari, L., & Bramanti, M. (1993). Event-related potentials in vegetative state. Lancet 341(8858):1473–1473. McPherson, T. (1984). The moral patient. Philosophy 59:171–184. MetLife Mature Market Institute (2009). Market Survey of Long-term Care Costs: The 2009 MetLife Market Survey of Nursing Home, Assisted Living, Adult Day Services, and Home Care Costs. Westport, CT: MetLife Mature Market Institute. Monti, M.M., Vanhaudenhuyse, A., Coleman, M.R., Boly, M., Pickard, J.D., Tshibanda, L., Owen, A.M., & Laureys, S. (2010). Willful modulation of brain activity in disorders of consciousness. New England Journal of Medicine 362(7): 579–589. Multi-Society Task Force on PVS. (1994a). Medical aspects of the persistent vegetative state (1). New England Journal of Medicine 330(21):1499–1508. Multi-Society Task Force on PVS. (1994b). Medical aspects of the persistent vegetative state (2). New England Journal of Medicine 330(22):1572–1579. Nagel, T. (1974). What is it like to be a bat? Philosophical Review 83(4):435–450. Nair-Collins, M. (2010). Death, brain death, and the limits of science: Why the whole-brain concept of death is a flawed public policy. Journal of Law, Medicine, and Ethics 38(3):667–683. New Jersey Declaration of Death Act (1991). New York State Department of Health (2005). Guidelines for Determining Brain Death. Available at: . Olick, R.S. (1991). Brain death, religious freedom, and public policy: New Jersey’s landmark legislative initiative. Kennedy Institute of Ethics 1(4):275–288. Owen, A.M., & Coleman, M.R. (2008a). Detecting awareness in the vegetative state. Annals of the New York Academy of Sciences 1129:130–138.

Owen, A.M., & Coleman, M.R. (2008b). Functional neuroimaging of the vegetative state. Nature Reviews Neuroscience 9(3):235–243. Owen, A.M., Coleman, M.R., Boly, M., Davis, M.H., Laureys, S., & Pickard, J.D. (2006). Detecting awareness in the vegetative state. Science 313:1402 Owen, A.M., Coleman, M.R., Boly, M., Davis, M.H., Laureys, S., & Pickard, J.D. (2007). Using functional magnetic resonance imaging to detect covert awareness in the vegetative state. Archives of Neurology 64(8):1098–1102. Owen, A.M., Coleman, M.R., Menon, D.K., Berry, E.L., Johnsrude, I.S., Rodd, J.M., Davis, M.H., & Pickard, J.D. (2005). Using a hierarchical approach to investigate residual auditory cognition in persistent vegetative state. Progress in Brain Research 150:457–471. Owen, A.M., Coleman, M.R., Menon, D.K., Johnsrude, I.S., Rodd, J.M., Davis, M.H., Taylor, K., & Pickard, J.D. (2005). Residual auditory function in persistent vegetative state: a combined PET and fMRI study. Neuropsychological Rehabilitation 15(3–4): 290–306. Plum, F., & Posner, J.B. (1980). The Diagnosis of Stupor and Coma, 3rd ed. Philadelphia: F.A. Davis. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Biobehavioral Research. (1981). Defining Death: Medical, Legal, and Ethical Issues in the Determination of Death. Washington, DC: U.S. Government Printing Office. Rappaport, M., McCandless, K.L., Pond, W., & Krafft, M.C. (1991). Passive P300 response in traumatic brain injury patients. Journal of Neuropsychiatry and Clinical Neurosciences 3(2):180–185. Rawls, J. (1996). Political Liberalism, paperback ed. New York: Columbia University Press. Rawls, J. (2005). Political Liberalism, 2nd ed. New York: Columbia University Press. Regan, T. (1983). The Case for Animal Rights. Berkeley, CA: University of California Press. Rhodes, R. (2003). Death and dying. Encyclopedia of Life Sciences 1–7. Rhodes, R. (2005). Justice in medicine and public health. Cambridge Quarterly of Healthcare Ethics: The International Journal of Healthcare Ethics Committees 14(1):13–26. Rhodes, R. (2007). The professional responsibilities of medicine. In R. Rhodes, L.P. Francis, & A. Silvers (eds.), The Blackwell Guide to Medical Ethics. Blackwell Publishing. Rosenthal, D.M. (1997). A theory of consciousness. In N. Block, O. Flanagan, & G. Guzeldere (eds.), The Nature of Consciousness: Philosophical Debates. Cambridge and London: MIT Press. A Bradford Book. Schnakers, C., Vanhaudenhuyse, A., Giacino, J., Ventura, M., Boly, M., Majerus, S., Moonen, G., & Laureys, S. (2009). Diagnostic accuracy of the

Justice, Profound Neurological Injury, and Brain Death vegetative and minimally conscious state: Clinical consensus versus standardized neurobehavioral assessment. BMC Neurology 9:35. Schneiderman, L.J., Jecker, N.S., Jonsen, A.R. (1990). Medical futility: Its meaning and ethical implications. Annals of Internal Medicine 112(12): 949–954. Shewmon, D.A. (2004). The ABC of PVS: Problems of definition. In C. Machado & D.A. Shewmon (eds.), Brain Death and Disorders of Consciousness. Springer. Singer, P. (1975). Animal Liberation. New York: New York Review/Random House. Toutant, C. (2010). NJ court considers hospital’s right to end treatment for vegetative patient. New Jersey Law Journal, May 10, 2010. U.S. Census Bureau (2008). Monthly population estimates for the United States: April 1, 2000 to

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December 1, 2008. Available at: . Veatch, R.M. (1975). The whole-brain oriented concept of death: An outmoded philosophical formulation. Journal of Thanatology 3:13–30. Veatch, R.M. (1999). The conscience clause: How much individual choice in defining death can our society tolerate? In S.J. Youngner, R.M. Arnold, & R. Shapiro (eds.), The Definition of Death: Contemporary Controversies. Baltimore: The Johns Hopkins Press. Veatch, R.M. (2004). Abandon the dead donor rule or change the definition of death? Kennedy Institute of Ethics Journal 14:261–276. Yingling, C.D., Hosobuchi, Y., & Harrington, M. (1990). P300 as a predictor of recovery from coma. Lancet 336(8719):873–873.

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40 Justice in Transplant Organ Allocation ROSAMOND RHODES AND THOMAS D. SCHIANO

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he combination of steadily improving transplantation survival rates and transplantation becoming an accepted treatment for more lethal medical conditions has increased the demand for transplant organs. While the number of organs donated for transplantation has increased slightly year by year, the percentage of deceased donor organs that are donated for transplantation has remained about the same. Despite national and local efforts to boost organ donation, the numerical increase in organ donation is not large enough to meet the growing demand. For example, in 2011 approximately 10% of the patients on liver transplant waiting lists died1 (United Network for Organ Sharing [UNOS], 2012). This severe shortage of human organs for transplantation has created competition for the deceased donor organs that are donated and made allocation policies highly controversial. The problem of organ scarcity is compounded by the fact that more and more patients require liver transplantation, in large part due to liver failure from hepatitis C, fatty liver disease, and a dramatic rise in hepatocellular carcinoma (HCC). Liver disease is now the ninth leading cause of death in the U.S. The shortage of organs for transplantation has repeatedly moved our society to reconsider its donation policy. We started with a view that organ donation should be entirely optional, that no one should be encouraged to donate the organs of their deceased loved one and no one should be required to make the request. The large proportion of organs that could have been used but were never requested moved legislators to abandon “optional request” and move to a policy of “required request.” Now, whenever there is a suitable organ donor being evaluated for brain death, the hospital is required to contact its local Organ Procurement Organization (OPO) so that a representative can make a request for the donation of transplantable organs from the family.

This change in policy has increased the supply of organs somewhat, but many people still die each year for lack of an organ. Several suggestions for further increasing the supply of organs have been put forward. One option would be to provide an incentive (e.g., payment of funeral costs) to encourage families to donate the transplantable organs of deceased loved ones. Whereas this change could increase the rate of organ donation, people worry that it would both undermine altruistic donation and turn human organs into a commodity. Presumed consent is another policy option that is receiving serious consideration. If some version of presumed consent were accepted, upon the declaration of brain death, a patient’s transplantable organs could be retrieved for transplantation unless the patient had previously documented a refusal of donation. In countries where such policies have been accepted, the change has led to a significant increase in organ donation. Yet some see such a move as coercive undermining of autonomous choice. Without a change in organ procurement policy that would significantly increase the supply of organs, the severe shortage of transplantable organs translates into transplant programs and agencies constantly making difficult decisions about organ allocation. All of these decisions fundamentally involve questions of justice. Because the allocation of transplant organs frequently involves decisions about who should live and who should die, in a dramatic way they involve sorting out multiple different facets of how medical resources should be allocated when all medical needs cannot be met. In this chapter, we shall discuss some of the most vivid dilemmas that arise in the allocation of transplant organs. We shall focus primarily on the allocation of livers because these are life-and-death decisions, and because the policy governing liver allocation has been continually revised to reflect concerns about justice.

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Our aim will be to elucidate the policy and institutional factors that would render a system just, as well as the factors that would tend to make decisions about allocation to individual patients just.

O R G A N A L L O C AT I O N I N T H E U. S . Currently, organ allocation in the United States is administered by the Organ Procurement and Transplant Network (OPTN) in accordance with the 1984 National Organ Transplant Act and with oversight for equitable allocation by the Department of Health and Human Services (DHHS). As of February 14, 2011, there were overall 110,000 persons on solid organ transplant waiting lists; 26,218 patients were transplanted in 2010 and there are approximately 6,200 liver transplants performed annually in the U.S. The mechanism for liver procurement and distribution includes 11 UNOS regions that encompass dozens of local OPOs for organ retrieval and distribution. At present, local patients are given priority for organs procured within the local OPO. When a local recipient is not found, the organs are then shared across the region, and when no recipient is found in the region, organs are made available nationally within the time constraints of effective organ survival without blood supply (i.e., cold ischemia time). When no acutely urgent recipient is identified in the local area, the organ is offered to acutely urgent patients across the region before offering the organ to chronically ill or less severely ill local patients2 (Table 40.1). This system of local priority has created differences in the length of time that patients wait for a transplant organ and has spurred a national debate about changes that should be made to the current system. In her June 1, 1998, letter to Congress, Donna Shalala, then Secretary of Health and Human Services, discussed a significant problem in the way organs are allocated for transplantation in the United States. Describing the effects of the UNOS policy, she explained that: the median waiting times for the two major liver transplant centers in Kentucky were vastly different: 38 days at one center, 226 at the other. Similarly, in Louisiana, the median waiting time at one center was reported to be 18 days, while at another, it was 262 days. In Michigan, the numbers were 161 days and 401 days. Although these numbers do not tell the whole story, they certainly reflect that unacceptable disparities in waiting times exist, even within states. (Shalala, 1998)

TABLE 40.1 UNOS POLICY 3.6 ALLOCATION OF LIVERS JUNE 16, 2000 Adult Donor Liver Allocation Algorithm Local 1. Status 1 patients in descending point order Regional 2. Status 1 patients in descending point order Local 3. Status 2A patients in descending point order 4. Status 2B patients in descending point order 5. Status 3 patients in descending point order Regional 6. Status 2A patients in descending point order 7. Status 2B patients in descending point order 8. Status 3 patients in descending point order National 9. Status 1 patients in descending point order 10. Status 2A patients in descending point order 11. Status 2B patients in descending point order 12. Status 3 patients in descending point order

While many disparities in what people have and get are unavoidable, other disparities can be averted, and while many disparities are ethically unproblematic, others signal serious problems of injustice. Social policies are just when they attend to relevant and important common human concerns and provide for equal treatment of all who are similarly situated. Policies are unjust when they give priority to extraneous concerns and irrelevant differences and thereby give people in relevantly similar situations inequitable treatment. For people who need an organ transplant to live or to live without significant disability, their primary concern is receiving a successful transplant. For people making an equitable allocation of transplant organs, the most appropriate considerations for distinguishing between potential recipients should be the urgency of patient need and the likelihood of success. Beyond those medical standards, patients should be treated equally (Rhodes et al., 1992). Yet a careful examination of UNOS allocation policies reveals that additional agendas inform their positions and practices. Whereas UNOS policies are supposed to provide for the just allocation of deceased donor transplant organs, and they do take significant steps in that direction, the disparities in waiting time suggest that UNOS policies still have some way to go in achieving justice. It is, therefore,

Justice in Transplant Organ Allocation important to appreciate precisely what the focus of a just allocation scheme should be, and why and how UNOS policy falls short of the mark, so that we may consider policy changes that would make for a more just scheme for the future. In this chapter, we examine existing UNOS policies in light of their effects—that is, their creation of the disparity in waiting times for transplantation and their disparate treatment of groups of people who need a transplant organ. We also review considerations that are and should be taken into account in a just policy for organ allocation, highlight factors that should not be given heed, and argue for principles to guide future organ allocation policy. With this agenda in mind, we discuss in turn society’s trust as an essential requirement for the practice of organ transplantation, the crucial transplantation goal of acting for the patients’ good, the principle of equity, considerations of efficacy, irrelevant agendas, and the importance of trust among transplant programs.

T RU S T A N D T R A N S P L A N TAT I O N 3 From the point of view of our society, the training of transplant surgeons, the establishment of centers for organ transplantation, and the national system for organ procurement and allocation are all institutions of medicine, or parts of the institution of medicine. As such, they must function in ways that preserve and promote society’s trust, and the institutions themselves must strive to be trustworthy. The importance of trust in medicine becomes obvious when you consider that doctors and medicine are committed to acting for the good of patients.4 To be permitted to take histories, to perform examinations, to prescribe medication, or to perform surgeries for their patients’ good, doctors must be trusted. In other words, all reasonably farsighted physicians must recognize that in order to practice medicine, they must seek trust and deserve it. Because this rule follows from a reasonable consideration of the basic requirements for medical practice, it is the fundamental moral imperative for doctors. Every physician who considers the context of medical practice cannot fail to acknowledge it. No patient who vividly imagines what is being undertaken would want it any other way. All prospective patients— everyone, that is—wants doctors to be trustworthy.5 And, so, all doctors must accept “seek trust and deserve it” as their moral law, as their creed. In deciding what to do and how to do it they must

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pay attention to promoting trust and not eroding it. In molding themselves as physicians they must focus on making themselves trustworthy practitioners. Trust dictates the necessary model for medical practice and it plays a crucial role in explaining the ethics of transplantation. The concept of trust can tell us a great deal about the characteristics that a transplant program must embody. It can also tell us a great deal about the design of transplant policies and the ethical limits of transplantation.

Professional Competence Because successful organ transplantation involves the collaboration of many individuals working together, a trustworthy transplant program must involve a well-staffed cooperative team of trustworthy individuals. For a transplant program to be trustworthy the members of the transplant team must, of course, be knowledgeable and skilled. Clinicians must be well versed in the etiology and progress of organ failure, proficient in diagnosis, fully informed of the most recent clinical studies of preoperative and postoperative management of their patients, skilled in the assessment of their patients’ likelihood of having a good outcome, discerning in their evaluation of a patient’s anatomy, masters of technical dexterity, skilled in operative cooperation, and accomplished in recognizing and managing bouts of rejection. Transplant teams must include sufficient numbers of physicians with assorted expertise and from various disciplines: medicine, transplant surgery, infectious disease, critical care, and psychiatry. The team must also include an adequate staff of other health professionals: nurses, social workers, nutritionists, even an ethicist. Without professional competence, the team is not deserving of trust. Competence, therefore, is more than a matter of competitive pride, personal curiosity, ambition, or prudence. Being knowledgeable, skilled, and fully prepared is essential to trustworthiness and, hence, a moral obligation. Caring Because patients are more inclined to trust members of a transplant team who they believe genuinely care about their good, team members must also be compassionate. For everyone, ethical conduct involves an emotional component. Beyond the psychological appeal of a caring doctor, physicians, in particular, need to feel caring concern for their patients’ well-being in order to be trustworthy. Caring is a prophylactic against the ethical danger of making clinical judgments that reflect

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self-interest rather than patient interest, and it also protects against the moral hazard of finding good excuses rather than doing what one should. Furthermore, for patients to trust their transplant surgeons and accept the team’s recommendations, they need to believe that their surgeons are acting from caring rather than selfishness (Rhodes, 1995).

Respect for Autonomy To be trusted, members of the transplant team will also have to pay serious attention to the patient’s view of what is good. People like to have their own way, and when decisions are intimately concerned with a patient’s own body and life, differences between alternatives can be tremendously important to the patient. Sometimes a doctor’s view of what is best can be at odds with a patient’s view. In some circumstances a patient will prioritize various factors differently and actually consider the doctor’s choice to be no good at all. Because doctors need their patients’ trust and because patients need to feel confident that their doctors will not impose their personal values and thereby, in the patient’s eyes, cause harm, the patient’s ranking of goods, or respect for patient autonomy, has to be incorporated into the professional commitments of the physician. In sum, for transplant teams and programs to be trusted to a degree that allows them to act for their patients’ good, they are committed to making themselves professionally competent, caring, and respectful of patient values. The importance of these physician characteristics and the actions they dictate is relatively uncontroversial. To appreciate the centrality of trust and trustworthiness in transplantation policy, and the design of transplant organizations and institutions, requires some attentive understanding and creative application of these relevant moral concepts. A P P R O P R I AT E G O A L S F O R T R A N S P L A N TAT I O N Families who donate the organs of deceased loved ones do so out of appreciation of the great good that transplanted organs provide and out of trust that their gifts will be allocated justly. They expect that all those in need of organs will be treated equitably and that deceased donor organs will be allocated according to principles that reasonable people could endorse. Transplant surgery, transplant centers, and institutions responsible for organ retrieval and allocation all exist because

our society acknowledges the great benefit that transplantation provides for those with end-stage organ failure, and because society intends the equitable allocation of its scarce transplant organs. In general, society expects that the focus on the good of patients is the central moral goal of medicine, and in transplantation, society expects that the commitment to the good of individual patients and the good of the pool of potential transplant recipients is the guiding agenda in the establishment of organ transplant programs and the design of equitable organ allocation policies. Individuals each have their own unique conceptions of what is good. Nevertheless, because human beings have common needs, there is a significant overlap in their appreciation of what counts as good. It is reasonable to presume that everyone who is a candidate for an organ transplant sees life, the ability to function, the enjoyment of liberty and pleasure, and the avoidance of disability as good (Gert et al., 1998). Since policies are just when they attend to people equally with respect to their most important human concerns, policies that govern the allocation of vital organs for transplantation must address what is most important to potential recipients. To the extent that receiving a transplant is necessary for organ recipients’ enjoyment of all of the most important goods, the primary good that a just policy must provide is a transplant organ. In the face of the current shortage of transplant organs, the good that policies should promote is, therefore, the increased likelihood of receiving an organ and having a successful transplant. This is not to say that other things are not important to transplant candidates as well. Candidates will want transplant policies and programs to provide respectful treatment, caring attention, honest and clear communication, clean and attractive surroundings, and convenience. These various considerations will have different priorities for different individuals; some factors will be significant to some patients and trivial to others. Yet it is hard to imagine that receiving an organ and having a successful transplant is not the first priority of organ transplant candidates with respect to transplant programs and policies. Indeed, when patients understand the differences among transplant centers and have the option, we see them flocking to the programs with a proven track record of success or traveling to be listed in regions where they are more likely to receive an

Justice in Transplant Organ Allocation organ (UPMC, 1997). In life, when different options offer opportunities for satisfying different preferences, people make choices and they triage their values so they can achieve what is most important to them. Various considerations have different weight in different contexts and what is less important is sacrificed for the sake of achieving what is most crucial. Thus, while having a transplant center close to home may be important to some patients, it is easy to appreciate that even they might be willing to travel farther for the sake of achieving other more important goals. Because of the priority that most accord to receiving an organ and having a successful transplant, reasonable transplant candidates would be likely to endorse policies that tend to increase organ availability and improve the likelihood of transplant success over policies that provide greater convenience, particularly if that convenience should cost organs.

OT H E R G OA L S Others involved in transplant programs and others who are affected by organ allocation policies may very well have different goals and different priorities. In this age of competition among medical centers for market share, there are public relations advantages to announcing that you offer technology at the cutting edge. Hospital administrators may be eager to promote their institution’s high-tech transplant centers because the image is likely to make them generally more attractive to consumers. And when transplantation is also profitable, administrators will be scrambling for a greater revenue share. In addition to hospital interests, politicians stand to benefit from the luster of transplant programs in their district and from the appreciation of local beneficiary medical centers. Furthermore, the convenience and camaraderie of coordinating organ procurement and allocation within a limited circle of people who have experience working together promotes the preference of OPO staffers for sharing organs within local OPO boundaries. And certainly surgeons stand to gain glory, fame, credentialing, stature, and money by performing transplants.6 As bioethicist Arthur Caplan has noted, transplant organ “[s]carcity means that access to the lucrative and prestigious field of transplantation is available only to a relatively small number of surgeons and an even smaller number of hospitals” (Caplan, 1992, pp 311–17). In any discussion of justice in organ allocation policy, these conflicting interests of hospitals,

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OPOs, politicians, and surgeons have to be appreciated in order to assess their claims. The appropriate goals of maximizing organ availability and improving the success of transplantation have to be maintained as the primary agenda. Allocation policies should not make sacrifices to antithetical interests, and policymakers have to be alert to the rhetoric of competing interests, particularly when it masquerades as the voice of patient interests.

EQUITY Transplantation policies do not and should not treat all people equally: everyone is not given equal access to organs for transplantation (e.g., one per person). Transplant organs, which are especially scarce and precious resources, are reserved only for those who need them. Principles for their just distribution aim at achieving equity (rather than equality) by treating relevant differences among those who need a transplant similarly. While there are many differences among candidates, the crucial policy problem becomes specification of the relevant differences and assignment of a relative priority to each of those relevant differences. When a policy gives irrelevant differences significant weight and when that assignment results in unequal treatment of similarly situated transplant candidates, the policy is, on its face, unjust. So far, transplant programs have treated nonmedical judgments about patients as irrelevant differences and have, for the most part, resisted the impulse to make blatant personal or relative judgments about recipient worthiness.7 This attitude reflects medicine’s general commitments to a nonjudgmental regard of every patient and a caring attitude towards each. These are professional commitments because they play an essential role in promoting the community’s trust. We all want our doctors not to judge us harshly and to take good care of us, regardless of who we are and what we have done. For example, in wartime, doctors have a professional responsibility to treat all medically needy soldiers alike, those from their own army as well as enemy soldiers. Medicine’s implicit attachment to these principles of nonjudgmental regard and caring for all enables patients to bring themselves to doctors so that they can receive the benefits that medicine has to offer. These professional positions on the appropriate physician attitude toward patients have translated into the transplant community’s reluctance to judge recipients’ worthiness, recipients’

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behavioral contribution to their present need, recipients’ age, or even the share of good life that the patient has already enjoyed.8 By quantifying severity of disease, UNOS can be seen as attempting to identify and to prioritize only medically relevant differences in need so that transplant candidates can be treated equitably. The system’s stated aim is to establish instruments for making uniform measurement for urgency of need (i.e., “how soon someone will die without the transplant” and “how badly off someone will be without it”) so that patients who are listed for transplantation at different centers can be fairly assessed and compared (Kamm, 1993, p. 234). Although arguments persist about how much weight should be assigned to each consideration, the criteria are intended to reflect differences in urgency of need and they can be validated with clinical data and adjusted to reflect refined understanding. While the specific criteria and standards vary somewhat from organ to organ, because of immunological sensitivities and features specific to the survival of particular organs, these assessment instruments are supposed to quantify medical differences and, beyond these relatively objective criteria, leave priority to fairness as approximated by a rule of first-come-first-serve. In the late 1990s donor livers were prioritized based on the severity of illness as documented by the patient’s Child-Pugh Turcotte (CPT) score, which quantifies the degree of encephalopathy, ascites, albumin, INR, and bilirubin. Prior to relying on the CPT score, overall waiting time was a key factor in allocating livers (Table 40.2). Basing organ allocation on waiting time had inherent

TABLE 40.2 CHILDTURCOT TEPUGH CTP SCORING SYSTEM TO ASSESS SEVERIT Y OF LIVER DISEASE Points

1

2

3

Encephalopathy Absent

None Slight (or controlled by diuretics)

1 or 2 At least moderate despite diuretic treatment 2–3 2.8–3.5 1.7–2.3

3 or 4

Bilirubin (mg/dL) 3.5 INR 3 2.3

United Network for Organ Sharing, available 9/4/01 at .

problems. Some patients were listed years before they would need a transplant in order to give them an advantage when they actually needed a transplant. Thus, patients who were listed longer would be higher on the list than patients who were severely ill but only recently listed. Although the CPT score has proven to be an invaluable tool for predicting postoperative survival in patients with cirrhosis over the past 50 years, after considering the issue of justice in organ allocation, the 1999 Institute of Medicine (IOM) report, Organ Procurement and Transplantation: Assessing Current Policies and the Potential Impact of the DHHS Final Rule, concluded that a more objective allocation system was necessary. They recommended that the system should be based solely on laboratory testing to avoid the subjectivity of assessing degrees of ascites and encephalopathy, and that it should also minimize the emphasis on waiting time. These recommendations led to the adoption of the Model for End-Stage Liver Disease (MELD) scoring system in early 2002. This system is now used in the allocation of livers for transplantation in candidates who are age 12 and older. The MELD score was first developed from a multivariate analysis of patients with cirrhosis undergoing TIPS, a procedure to treat portal hypertensive complications. Studies showed that it could also be used to accurately predict the mortality of patients who are in urgent need of liver transplantation. The MELD score is based on measurements of the patient’s serum creatinine, which reflects kidney function; bilirubin levels, which measure the liver’s excretion of bile; and INR, a measure of the liver’s ability to make blood clotting factor. The MELD score has been evaluated over the past 10 years and has been shown to accurately predict pre-liver transplant survival. The scoring range is from 6 to 40: the higher the score, the sicker the patient. Patients with high scores are higher on the national waiting list and thus more likely to be allocated a transplant organ. Matching a liver recipient to a donor does not require a determination of how alike the human leukocyte antigen (HLA) tissue types of the patient and the donor are to each other. For liver transplantation, organs of donor and recipient need only to have the same blood type and similar size. This means that only the medically relevant factors of blood type, organ size, and MELD score have to be considered in matching donors and recipients. Aside from urgency of need, listing criteria have focused on the medical judgment of likelihood of

Justice in Transplant Organ Allocation efficacy—that is, how likely it is that the patient will survive transplantation and that the organ and patient will remain viable for a reasonable period after transplantation. Efficacy is a relevant consideration because deceased donor organs are scarce and justice requires that they be allocated so as to provide significant benefit. Policies for organ distribution therefore take cold ischemic time into account in order to maximize organ viability. Programs also evaluate patients for the likelihood of their long-term survival and the likelihood of post-transplant organ survival. When a potential recipient becomes so ill that the likelihood of survival is significantly diminished, the patient is not listed for transplantation or is made inactive on the UNOS organ recipient list (e.g., status 7 for liver transplantation). Furthermore, consideration of efficacy also requires that patients be evaluated for the likelihood of their adhering to rigorous post-transplant protocols so that the transplanted organ will not be lost to rejection. Typically, when a patient’s history raises questions about the likelihood of adherence with a schedule of anti-rejection medications and posttransplantation medical monitoring, the patient is further examined and assessed by a psychiatrist or a social worker. Because adherence is an indication of efficacy, it is a reasonable and relevant medical consideration for the evaluation of individual patients.

UNSUPPORTED DISTINCTIONS Transplant policy distinctions that rest on claims about the efficacy of transplantation for groups of patients must be supported by compelling evidence. Differentiation in listing, prioritization, or allocation of organs without an adequate basis of evidence should be eyed with suspicion. Drawing distinctions based on unsupported assumptions about efficacy is likely to create injustice. While UNOS policy and the UNOS Liver Status categories illustrate standard considerations for recipient prioritization, they also illustrate some significant problems in liver allocation that derive from making distinctions without sufficient evidence. For example, regardless of the urgency of their need or the likelihood of their future adherence to post-transplantation regimens, almost all liver transplant programs mandate at least 6 months of abstinence from alcohol and other recreational drug use as well as entry into relapse prevention programs. The 6-month policy mark is an arbitrary standard adopted by

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liver transplant programs. It is, however, based on studies that demonstrate decreased recidivism in patients who have longer periods of sobriety, who have not had previous relapses, who are gainfully employed, and who have strong family supports. This policy accepts the presumption that patients who are labeled “substance abusers,” alcohol and narcotics users in particular, are at a greater risk of non-adherence and losing transplanted organs than other patients. Without evidence of low efficacy for transplantation of alcoholics and addicts, the listing of these patients is restricted by a waiting period and requirements for participation in abstinence support programs that are not applied to patients who are viewed without that belief. At the same time, evidence suggests that substanceabusing patients who are judged likely to comply with post-transplant regimens (including those who return to substance use after transplant) adhere to their required post-transplant treatment and maintain their transplanted organs quite well (Burra et al., 2000; Gerhardt et al., 1996; Mackie et al., 2001; Osorio et al., 1994; Pereira et al., 2000; Tang et al., 1998) Presumptions that persist, even in the face of counter-evidence, smack of unfounded discrimination. Without evidence of a difference in outcomes, holding substance-abusing patients to a different standard from others is not medically justified. Distinguishing between patients in the face of refuted presumptions is ethically untenable. Similarly, the 1996 rule change (starting in 1998) that gave priority to status 1 liver transplant patients (people who suddenly develop acute liver failure [ALF] and are likely to die within a week) over status 2A patients (people with chronic liver failure who have deteriorated to the point where they are likely to die within a week) raises questions of evidence and justice. The argument for the rule change was that patients with chronic illness (status 2A patients) had a lower chance of surviving than patients with acute liver failure (status 1 patients) who had otherwise been healthy. Patients with ALF may have only days to live if not transplanted in an expedited fashion. The implicit justification was that the change in policy would prevent transplanted organs from being wasted on people who had a low chance of survival, and thus allow more people to benefit from transplantation (Showstack et al., 1999). And in an effort to further improve the timely transplantation of patients with ALF, UNOS has more recently changed the allocation of livers for status 1 patients from a local to a broader regional one.

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Yet opponents of the change have argued that the data do not support the distinction. If that claim is true, the change in policy unjustly disadvantages those with chronic illness. In either case, distinctions in patient treatment are justified only by a significant difference in efficacy. Until a significant disparity in outcomes for patients with acute and chronic liver failure can be shown, allocation policy should not distinguish between these potential recipients. Hunches are not enough for medical judgment, and assumptions cannot support policy distinctions for allocation of lifepreserving scarce resources. As Frances Kamm has argued, very small differences may not be significant enough to justify a distinction that will leave some to die while others live or suffer a major disability (Kamm, 2002).

Advocates of local priority also maintain that keeping organs close to their source will increase donation—in other words, that people are more likely to donate organs when they will be used by a needy patient within the local OPO. Again, findings in the IOM study dispute these assumptions. (IOM, 1999, pp. 47 and 71) Without strong evidence for a significant enough difference in outcomes, drawing geographic distinctions between potential organ recipients is unjust because geographic differences are irrelevant. Donna Shalala’s declaration that the disparities in waiting time are “unacceptable” amounts to a charge of injustice. And Robert M. Veatch, a former member of the UNOS Ethics Committee and author of Transplantation Ethics, echoes that assessment. According to Veatch:

LOCAL PRIORITY Another set of questionable efficacy claims are invoked to support the UNOS grant of local priority in organ distribution. Here advocates of local priority point to efficacy advantages of local distribution. They claim that by keeping organs within a local or regional geographic area they can be transplanted with shorter cold ischemia time when they are more viable, thereby improving outcomes. Advocates for local priority also claim that by transplanting organs to patients who are less seriously ill, patient survival is improved. Again, the current evidence does not support these conclusions. Today’s methods of organ preservation allow for periods of cold ischemia time for kidneys and livers that are longer than they had been before the technological advances without a diminution in organ viability (Bretan, 1994; Durand et al., 2008; Pirenne et al., 2001; Stratta et al., 1990) Furthermore, geographic boundaries do not always translate into shorter transport times because the other side of the boundary could actually be closer or take less time to reach than the other side of the region. And, as to the question of an improvement in the number of patients who survive, the 1999 IOM report, Organ Procurement and Transplantation: Assessing Current Policies and the Potential Impact of the DHHS Final Rule, suggests the opposite. According to the IOM study, “as OPO size increases to 9 million people, . . . the number of status 2B and 3 patients receiving transplant could be reduced to allow more status 1 and 2A patients to receive transplants, without an increase in pretransplant mortality for the status 2B and 3 patients” (IOM, 1999, p. 70).

[t]he bottom line is that local priority makes the transplant program inequitable. People who are equally sick, who have equal entitlement to a transplant, and who are equally good candidates will have significantly different probabilities for getting an organ. Because many people die while on the waiting list, a delay in getting an organ equals an increased risk of death. The moral principle of justice requires that people who are equally situated are entitled [to] be treated equally. (Veatch, 2000, p. 375)

The IOM report acknowledges the problem of injustice but defines it in terms of disparities in life risk rather than variations in waiting time. According to the IOM analyses of available data, there was a 5% variation in the transplant rates for status 1 patients in different OPOs, but a 13% variation for status 2B patients and a 35% variation for status 3 patients. After discounting other factors that might contribute to the disparity, the IOM report authors cautiously concluded that “smaller OPOs, by generally transplanting more statuses 2B and 3 patients than larger OPOs, may contribute to a situation in which more severely ill patients are required to wait longer for organs at increased risk of death” (IOM, 1999, p. 73).

SMALL CENTERS AND LARGER CENTERS In light of organ scarcity and concerns about just allocation, the UNOS protective policy stance toward small transplant centers is particularly peculiar. The IOM report addresses the possibility of changes in allocation policy negatively affecting

Justice in Transplant Organ Allocation the viability of small centers and advocates monitoring the situation. It also points out that evidence from changes in New York State suggests that the viability of small centers will not be affected and, further, that there is no reason to believe that closing small centers will adversely affect minority transplant candidates (IOM, 1999, pp. 39–41). Yet concern for the viability of small centers seems to be motivating the debate over national versus local priority allocation schemes, and that attention raises the question of whether smaller transplant centers should be protected. Accepting the view that the appropriate central agenda for national transplantation policy should be increasing the likelihood of patients receiving an organ and having a successful transplant, and the just allocation of deceased donor organs, concern for the viability of small transplant centers should be irrelevant. To the extent that transplantation at small centers diminishes the likelihood for successful transplantation, undermines efficient use of the current organ supply, or impedes future advances in transplantation, policymakers should curtail their activity. There are some data that suggest that more experienced liver transplant centers have more successful results and that there is also a learning curve for new centers. It appears that centers performing 20 or more liver transplants per year may have more successful outcomes than programs performing fewer transplants. This is also the case with live donor liver transplantation, as smaller programs have higher complication rates than more experienced programs, and complication rates decrease as surgical teams gain expertise in the surgical and medical management of transplant patients (Edwards et al., 1999). It will be difficult for the transplant community to move away from protecting small centers because the structure of UNOS governance gives just one vote to each transplant center, regardless of the number of different transplant programs (e.g., liver, heart, kidney) within the center or the number of transplants performed at the center annually. This arrangement leaves the interests of the large numbers of patients treated at large centers seriously underrepresented.

Expertise For a transplant center to be trustworthy, it must have at least two teams of knowledgeable and skilled transplant surgeons because transplantable organs can become available at any time and there must always be a team of surgeons available who

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can perform the transplant. A trustworthy program must also have a well-staffed cooperative team of experienced health professionals to provide the support that ensures good transplant outcomes. Beyond the surgeons, a program needs a full array of physicians with relevant expertise in the pretransplant management of acutely and chronically ill patients, anesthesia, critical care of post-transplant patients, management of infectious disease in immunosuppressed patients, the pharmacology of immunosuppressive medications, and the psychiatric assessment of transplant candidates and their post-transplant support. In addition, a trustworthy program needs the assistance of nurse/transplant coordinators, trained surgical nurses, social workers, and ethicists. Without this requisite framework, a program cannot provide optimal transplantation services. It is hard to imagine that small programs have such resources, and that available resources are practiced enough to provide skilled services and to manage the routine and unusual emergencies that are part of transplantation. It is, therefore, hard to imagine that small centers can match the success of larger programs. In fact, the transplantation literature unsurprisingly documents the fact that highvolume transplant centers have better results than small programs (Belle et al., 1995; Edwards et al., 1999; Hosenpud et al., 1994; Laffel et al., 1992; Lin et al., 1997). Small programs are now required to perform a requisite number of transplants to remain UNOS certified. This may affect their resolve to transplant certain patients. Achieving adequate graft and patient survival is also important for certification. That requirement may influence some programs to “cherry pick” and select patients who can be expected to have better outcomes and reject those with reasonable, but higher, preoperative risks. Thus, patients might not have equal access to transplant services in that particular geographic area.

Efficacy Besides the expertise to perform successful transplantation, programs should also have the wherewithal to maximize the use of deceased donor organs and the skill to enable the program to offer living donation as an alternative when it is appropriate. Extensive experience and familiarity with the most up-to-date studies enable surgeons to make reasonably reliable judgments about the acceptability of deceased donor organs that less experienced surgeons might not dare use. Centers that perform a large number of liver transplants

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can also have a sufficiently large recipient pool to create and administer a second list of less-thanoptimal recipients who would be unlikely to receive a deceased donor organ from the standard pool and who would therefore accept a less-thanoptimal transplant organ from an extended pool of organs that would otherwise be discarded. Because of the severe organ shortage, transplant teams now routinely utilize “extended donor grafts” in an effort to transplant their patients. These grafts typically have varying degrees of steatosis, or fat, have been exposed to viral hepatitis in the past, have longer ischemic times, and may be from older donors. The use of some of these non-ideal organs, such as older donor livers in patients with hepatitis C, has been associated with less ideal outcomes. Most programs would therefore not use these organs under ideal circumstances, but in the hands of experienced surgical teams, they can still offer good long-term outcomes. Also, technically adept and experienced surgeons can judge when a single liver can be split and shared between two recipients, and they have the ability to divide a liver in two and provide half to a different recipient, typically a child. Finally, large and experienced programs have the resources and expertise to discern when it is appropriate to have two teams working simultaneously, one safely removing a lobe of the liver or an entire kidney from a living donor while the other team is ably transplanting the organ into the recipient. All of these techniques extend the organ pool, thereby allowing more patients to undergo transplantation. All of them require resources that are available only in the larger transplant centers. When a deceased donor organ is needlessly discarded because a surgeon was unable to discern its acceptability or because no one who might want it was available, an organ is wasted and thus a waitlisted patient could die. In addition, when a living donor transplant is a reasonable option, and a potential donor is available but the center is not prepared to perform such a transplant, everyone waiting for an organ transplant is harmed. This is the case also with split-liver transplantation. There have been calls to consider splitting every donor liver, even though success rates still lag behind other transplants.

Research Transplantation owes its success to the research that has accompanied its practice. Study findings have enabled the transplant community to develop protocols for improved immunosuppressive therapy.

Studies have led to the improved pre-transplant and post-transplant management of patients, and improved surgical techniques. In sum, research has enabled more patients to benefit from transplantation, and future research promises to improve transplant outcomes even further. Biomedical research draws conclusions from studies of significantly large numbers of subjects. In other words, medical science requires information from many patients to draw its general inferences. Because small centers do not have sufficient numbers of relevantly similar patients, there are many kinds of studies they cannot perform. When patients at small centers are not recruited for studies, precious opportunities for collecting data and learning from it are lost. To the extent that transplantation research improves its success and promotes more effective use of transplantable organs, every patient who receives a transplant outside of a research protocol represents a loss of knowledge that could benefit those who will need transplantation or re-transplantation in the future.

Fairness Current organ allocation policies that allow local priority in organ distribution make it more likely that patients at small centers will receive an organ when they are not urgently ill. Small centers prefer this arrangement because it allows them to transplant healthier patients who are less likely to have a complicated course. As the IOM report concludes, the resulting disparity in treatment of similarly situated needy patients is clearly unfair (IOM, 1999, p. 73). Yet laws recently passed in several states (e.g., Louisiana, Oklahoma, South Carolina, and Wisconsin) prohibit organs from leaving the state if patients in the state can use them. These positions are supported by the rhetoric of local politicians and transplant officials. For example, Governor Frank Keating of Oklahoma complained that the federal government tries to “suck organs” from his state, and Nancy A. Kay, executive director of the South Carolina Organ Procurement Agency, declared that “[o]ur work is based on the giving of South Carolinians. . . . We like to take care of our neighbors here.”9 We recognize that transplant physicians may feel a preference for the patients they know well and advocate for the ones with whom they have established a meaningful doctor–patient relationship. We also accept that people feel more compelled to help those who are near and dear than distant strangers. Yet the usual rule for when it is morally acceptable to acknowledge such priority

Justice in Transplant Organ Allocation is that other reasonable people would not object to this preferential treatment (e.g., the priority we accept for family and friends) (Scanlon, 1998, pp. 158–171). Clearly the controversy over local priority and suspicion about the motives of its advocates suggest that people have good reason for opposing local priority in organ distribution. Furthermore, laws and language that promote geographic localism are divisive and dangerous to a multicultural democratic society. They thwart the generosity of those good Samaritans who donate out of love for their neighbors even when those neighbors don’t live in their own state. They undermine our national spirit of cooperative mutual support for fellow Americans in time of need, and encourage prejudice and discrimination that are anathema to justice in organ allocation and the altruism of organ donation.

ADDITIONAL PROBLEMS F O R J U S T A L L O C AT I O N OF ORGANS The MELD System Although the MELD system has shown utility in predicting survival without transplantation and has allowed a greater number of patients to actually obtain a graft, it seems to compound the allocation problems in a number of ways. First, the MELD system relies upon studies of individual indicators of the seriousness of disease. Liver disease is very complicated and urgency is very difficult to discern. For instance, the presence of hyponatremia portends a worse prognosis in patients with cirrhosis than in other patients. Studies have shown that patients dying on the list with much lower MELD scores (below 15) often have hyponatremia. This difference is not taken into account by the MELD score. Thus, proposals are being considered to include serum sodium to reflect this difference in a future modified MELD score. Similarly, UNOS has recently adopted policies to grant variances to patients with specific liver diseases that might not be adequately prioritized by the current MELD system. Patients with hepatopulmonary syndrome, portopulmonary hypertension, and other conditions in which the severity of disease is not adequately estimated by the MELD score can now be granted exceptions. They are assigned a MELD score of 22, with the ability to increase it every three months if they continue to meet the stringent clinical criteria. Other alterations in the MELD system have previously occurred. Repeated changes in the approach

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to HCC may be the best example of how the MELD system has been adjusted to more accurately reflect urgency of need. Typically patients with HCC have low MELD scores. Without being granted a variance they would not be able to obtain a transplant before the disease progressed to a point where transplantation was no longer feasible. Numerous studies over the years have demonstrated that transplanted patients with HCC meeting specific tumor size criteria have outstanding long-term disease-free survival. Patients with very small tumors were therefore given priority at the advent of the MELD era. Later it was decided that the priority granted to HCC patients disadvantaged patients with more severe, immediately life-threatening chronic liver disease. Because the HCC patients could wait longer on the list for their transplant, the policies were amended so as to give priority only to patients with somewhat larger HCC. Changes in policy of this magnitude should be supported by adequate evidence, not intuition. Numerical ratings give the appearance of objectivity and fairness and the comfort of certainty, but without the requisite validation, we have no way of knowing whether that appearance belies the reality and undermines justice. Furthermore, the MELD system uses small numerical distinctions as the basis for allocating life-saving organs to one recipient rather than another. Again, without a study there is no evidence that these small numerical differences are at all significant, and, even if they are, they may not be significant enough to justify preferring one recipient over another. For example, it may be more equitable to give a liver to a patient with a MELD score of 29 who has been waiting for 9 months rather than to a patient with a MELD score of 30 who has only been waiting for 1 month, particularly if a study would show that the difference in expected survival without transplantation would amount to no more than a day. In addition, the MELD system requires frequent recalculation of each patient’s scores and even daily recalculation of scores for the sickest patients. This requirement translates into increased patient burdens in the form of more frequent unpleasant, invasive tests and increased burdens for transplant programs in terms of the time, energy, and money for updating MELD scores to give patients the best chance for obtaining an organ. A byproduct of relying on the MELD score is that the number of dual-organ liver/kidney transplants has dramatically increased, in large part

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because the creatinine level carries appreciable weight in the MELD equation. Thus, patients who have any type of chronic renal insufficiency end up having higher MELD scores and are thus somewhat advantaged on the list. Alternative strategies to take chronic renal disease into account in a revision of the MELD system are currently under discussion. Another problem with the MELD allocation system has been that certain geographic inequities exist. In certain UNOS regions, patients can be transplanted at much lower MELD scores compared to other regions. In some parts of the country patients are being transplanted with MELD scores of 20, whereas in other regions patients need to achieve MELD scores of greater than 30 to be transplanted. Multifactorial reasons, including disparities in the numbers of donors and recipients and efficiency of local organ procurement organizations, explain this difference. These disparities affect patients’ access to transplant services, as some individuals choose to leave their state of residence and travel to other parts of the nation to receive a life-saving transplant. UNOS acknowledges that these inequities exist, and requires all transplant programs to inform patients of the multiple-listing option. Centers in regions that are disadvantaged by the current system therefore offer patients the option of live donor liver transplantation as the only reliable way to receive a transplant.

Incentives Opposed to Efficacy Although UNOS proudly proclaims its commitment to efficacy as an essential feature of a just allocation system, the MELD system compromises the efficacy of organ allocation. Urgently ill patients are given priority, and there are no incentives to encourage programs to triage out the patients who are least likely to derive a significant benefit from a transplant. So long as the systems validate allocation to those who are most ill, transplant teams are not likely to limit access of their patients to organs, even when those patients have a low likelihood of long-term survival. Public policy should provide incentives to promote the behavior that the public values and to discourage the behavior that the public wants avoided. Allocation policy that focuses on urgency without also attending to efficacy is likely to provide less long-term benefit by allocating organs to patients with lower likelihood for long-term survival. While we want transplant programs to provide benefits to all patients who have a similarly

good chance for deriving significant benefit from transplantation, and not to restrict the procedure to only those who will be easiest to manage or who have the greatest likelihood for survival (e.g., everyone with at least an 85% chance for longterm survival and not just those with a 95% chance of survival), we also want programs to avoid allocations to those who have a significantly diminished chance for long-term survival (e.g., those with less than a 60% chance for long-term survival). Without adding some mechanism for efficacy accountability, current and proposed policies pay lip service to their commitment to efficacy in organ allocation while actually promoting the opposite behavior.

Extended Donors Because transplant programs are committed to providing a significant benefit to their organ recipients, they have standards for accepting organs for transplantation. Organs for transplantation are assessed to ensure that they come from a donor who was free of disease and who was not so old as to suggest that the recovered organs would not provide a significant benefit to the recipient. These standards express medicine’s fiduciary commitments to patients, and protect the pool of organ recipients from being made worse off than they would have been by receiving a suboptimal transplant organ. When programs abide by these standards, some organs retrieved for transplantation are ultimately discarded. There are, however, patients waiting on the transplant list who are likely to die because they are critically ill and no other organ is available or they are unlikely to receive a transplant organ from the pool because they are likely to die before their score becomes high enough to be allocated an organ. For these patients whose life is on the line, receiving an organ that would otherwise have been discarded is a significant benefit. Thus, patients with little to lose and a great deal to gain are given the option of receiving a transplant organ from what has come to be called the “extended pool.” Transplant programs have some discretion in determining who should receive organs from the extended pool. Should it be the oldest or sickest patient who is least likely to live long and develop health problems related to the suboptimal quality of the transplant organ? Should it be the most urgently ill patient who is likely to die the soonest without a transplant? Or, should the young urgently ill patient take a chance of waiting for a

Justice in Transplant Organ Allocation better organ to become available? These poignant issues are frequently best resolved not by formulating a rigid policy, but by considering the details of the specific patients and the available organs for transplantation.

Transplant Tourism Because of the ongoing organ donor shortage, some U.S. patients are finding it necessary to go abroad to obtain life-saving organ transplantation. When they do so, they become transplant tourists. A recent analysis of data by the Scientific Registry of Transplant Recipients from the Organ Procurement and Transplantation Network (OPTN) suggests that the number of transplant tourists from the U.S. is increasing and that the current reporting mechanisms to UNOS are inadequate to capture the true scope of the practice (Merion, R.M., et al., 2008). Up until recently, the People’s Republic of China (PRC) has been the most frequent destination of individuals seeking liver transplantation. Because of outcries from human rights advocates and the transplant community regarding the use of executed prisoners as donors, the Chinese government has significantly restricted access to transplant services for foreign nationals. The continued use of prisoners as willing or unwilling donors in the PRC remains a major issue in the transplant community, and many of the transplant societies have publicly stated their opposition to such practices. This will be an ongoing issue as more and more Chinese nationals themselves are now requiring liver transplantation related to widespread hepatitis infections. Although the public denunciations of the use of paid kidney donors and executed prisoners as organ donors may have curtailed organ sales in some countries, in other places the criticism appears to have driven transplant tourism activities underground. Some critics fear that organ sales could eventually undermine our reliance on donor altruism and society’s trust in transplant physicians, and ultimately have a negative impact on future organ donation rates. Transplant tourism has been associated with significant problems for those individuals abroad who choose to sell their organs, either kidneys or partial livers. The payment they receive is often paltry and there can be corruption and kickbacks because of the involvement of middlemen and organ vendors. Surgical practices often do not adhere to professional standards, and there is no oversight by organizations akin to UNOS to

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monitor and regulate the process and its outcomes. Under the circumstances, it is also hard to feel confident that donors are adequately informed about the nature of the procedures that they will undergo, the associated risks, and the care that they will be provided after donation. In addition, many patients receiving organs as transplant tourists may experience significant medical problems. Transplant tourists may not receive adequate patient education and there can be poor communication between the transplant team and the recipient due, in part, to language barriers. Patients may be encouraged to return to their home nation prematurely and their immunesuppressive medication supply may be inadequate. Adding to the problems that derive directly from their care abroad, returning transplant tourists may find it difficult to establish care in their native country because some transplant teams refuse to accept them as patients based on moral objections, financial concerns, or time constraints. Although the majority of U.S. transplant professionals frown upon transplant tourism, the practice violates neither current U.S. law nor the National Organ Transplant Act (NOTA). The Declaration of Istanbul on Organ Trafficking and Transplant Tourism has, however, recently condemned transplant tourism and related practices and it has been endorsed by all of the major transplant societies. Physicians do, however, have a professional obligation to treat people who have medical needs with beneficence and to promote the good of patients. This responsibility requires physicians to use their learning and experience on behalf of patients, including returning transplant tourists. In addition, physicians must adhere to medicine’s commitment to nonjudgmental regard, which requires them to render care to all individuals without being influenced by any personal judgment as to the patient’s worthiness.

Suicide Attempts Tylenol (i.e., acetaminophen) overdose is the most common cause of ALF. A study of ALF found that 48% of acetaminophen overdoses were unintentional, but that 44% of overdose patients had suicidal intent. Physicians’ duty of beneficence to protect and promote the health and well-being of each individual patient suggests that patients with ALF resulting from a suicide attempt should be offered transplantation on the same basis as any other patient would. The urgency of their need for transplantation often moves patients who have attempted suicide to the top of the liver

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transplant list. At the same time, concern for all of the patients in need of a transplant directs physicians to implement allocation principles that serve all transplant patients and treat them each justly. As we have maintained, need, urgency, efficacy, and equality are all relevant considerations in the just allocation of transplant organs. Patients who have attempted suicide have a serious need for a liver transplant, and their need is urgent. The open question, then, is whether there is sufficient reason to expect that those who have come to transplantation owing to a suicide attempt will be less likely to derive a long-term benefit from liver transplantation than other candidates would. Do we have adequate evidence to conclude that the low efficacy of allocating a transplant organ to a suicide survivor justifies treating her differently than other similarly situated patients? Members of the medical community are often concerned that a patient’s long-term prognosis may be compromised by underlying psychosocial problems that could undermine long-term compliance and lead to a poor outcome. This is an empirical question that requires evidence to support any conclusion. Unfortunately, post-transplant compliance is often difficult to predict because the post-transplant period requires strict lifestyle modifications and adherence to medications. Patients with underlying psychological illness may find it difficult to follow up regularly and may not be compliant with post-transplant therapy. Furthermore, rating scales for predicting posttransplant noncompliance are not useful in ALF cases because of the rapid onset of organ failure and the limited time for decision-making. The rapid progression to hepatic encephalopathy, or brain dysfunction, also makes it challenging for social workers and psychiatrists to provide a crucial comprehensive psychosocial evaluation of the individual patient. Recurrent episodes of nonadherence with treatment and follow-up also predict post-transplant problems with aftercare and follow-up. That information, which also can be critically important in ensuring the long-term success of a transplant, is often also unavailable in the evaluation of suicide patients. In addition, it is often difficult to obtain an adequate medical history from the patient or relatives and friends because of the sensitivity of the psychosocial issues involved, and because they may be reluctant to disclose embarrassing or stigmatizing information. The psychiatric literature tells us that a previous attempted suicide is the best and most important independent predictor for a future

suicide attempt, with as many as 24% of individuals making another attempt within the first year.10 People who attempt suicide once are more likely to die from all causes in the next 5 years than are other people in the population. Although there are few studies on suicide attempts, different studies report somewhat different findings that range from a 7% to 15% chance of death in the 5 years after a suicide attempt (Licht et al., 2008; Limosin et al., 2007; Ostamo & Lonnqvist, 2001; Tabbane et al., 1993). It is notable that liver transplant recipients who came to transplant because of chronic liver disease in comparison have an 85% chance of 5-year survival. Significantly, a study that focused specifically on the survival of liver transplant recipients who came to transplant following a presumed suicide attempt supports providing transplantation to this group of patients (Karvellas et al., 2010). The investigators found that one quarter of the acetaminophen overdose cases in their cohort had prior psychiatric hospitalizations, overdoses, or suicide attempts, yet they found only a 6% suicide rate after transplantation, and only 1 of their 32 patients required psychiatric hospitalization after transplantation. These findings suggest that the efficacy of providing a liver transplant to patients who have attempted suicide may be no worse (and perhaps better) than providing transplantation to other patients. If patients who have attempted suicide have as good or better a chance of long-term survival than other liver transplant patients, then denying them a chance at transplantation based on low efficacy would be inaccurate and discriminatory.

CONCLUSION Patients and the public are well served when they can feel secure that allocation of transplant organs is governed by just policy and that policy has scrupulous adherence from each center and every OPO. While the rhetoric endorsed by UNOS espouses principles and objectives similar to those advocated in this chapter, the subtly inserted extra added-on agendas make a significant difference in the resulting allocation policies (UNOS Principles, 2001). To achieve justice in transplant organ allocation, the good of patients must be clearly avowed as the guiding principle for the establishment of organ transplant programs and the design of organ allocation policies. Institutions that are responsible for organ retrieval and allocation must, therefore, commit themselves to focus on treating patients with equity and providing patients with a successful transplant. They must

Justice in Transplant Organ Allocation be discriminating in their assessment of demands and refuse to be sidetracked by other irrelevant private concerns. They must also command and wield the authority to enforce just policies in order to allow the public to be confident that transplantation is a trustworthy part of medicine.

Notes 1. For 2011, the total MELD/PELD waiting list deaths (10.3%) together with the Status 7/Inactive waiting list deaths (11.1%) totaled 21.4% waiting list deaths. 2. In kidney transplantation, because of the importance of organ/recipient immunological compatibility for graft survival, exceptions to local priority rules are allowed for patients with extraordinarily sensitive immune systems and for organs that are highly compatible with a particular recipient (i.e., a six-antigen match). In liver transplantation, as of 1999, an exception to local priority is made for patients in the acutely urgent category—that is, patients who have suddenly become ill and are likely to die within a week without receiving a liver transplant. 3. This section draws on a presentation by Rosamond Rhodes, “Trusting Transplantation when Taking Organs from Good Samaritans and Emotionally Related Living Donors,” Issues in Medical Ethics: 1999, Mount Sinai School of Medicine, Dec. 10, 1999. 4. What counts as the “patient’s good,” the scope of the “goals of medicine,” and the purview of medicine are all interrelated subjects that significantly affect a theory of bioethics. For the purposes of this limited discussion, all of those important issues will have to be bracketed and set aside for a later, fuller elaboration. 5. Unfortunately, medical treatment is sometimes delivered without a climate of trust. Patients have learned to be distrustful because of unfortunate experiences with untrustworthy physicians and our untrustworthy system of health-care delivery. Distrustful patients do accept treatment when there is no better option. Examples of distrust do not refute the claim that patients would prefer to be able to trust their doctors and that most doctors would prefer to be trusted by their patients. 6. Robert M. Veatch makes a similar point (Veatch, 2000, pp. 368–370). 7. The transplantation stand is in opposition to the earlier stand of committees that rationed access to dialysis machines in the early 1960s according to “social worth criteria” (Jonsen, 1998, pp. 211–217). Criticism of those criteria has led to the adoption of medical criteria that focused instead on urgency of need, efficacy, and equity. 8. Kamm and others argue for the opposite view, that such considerations are relevant and should be

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taken into account by organ allocation policy (Kamm, 1993). 9. The 1996 rule change that gave priority to status 1 patients over status 2A patients raises questions of evidence and justice. The argument for the change was that patients with chronic illness had a lower chance of surviving and that patients with ALF, who had otherwise been healthy, had a better chance of surviving. The implicit justification was that the change in policy would allow more people to benefit from transplantation (Showstack et al., 1999). Opponents of the change have argued that the data do not support the distinction and that the change in policy therefore unjustly disadvantages those with chronic illness. 10. Following Veatch, 2000, p. 366.

References Belle SH, Detre KM, Beringer KC. (1995). The relationship between outcome of liver transplantation and experience in new centers. Liver Transplantation and Surgery 1;6(Nov.):347–353. Berg CL, Gillespie BW, Merion RM, Brown RS Jr, Abecassis MM, Trotter JF, Fisher RA, Freise CE, Ghobrial RM, Shaked A, Fair JH, Everhart JE; A2ALL Study Group. (2007). Improvement in survival associated with adult-to-adult living donor liver transplantation. Gastroenterology 133:1806–1813. Bretan PN. (1994). Characterization of improved renal transplant preservation mechanisms using PB-2 flush solution by HPLC assay. Transpl Int 7(Suppl 1): S465–468. Briceño J, Ciria R, de la Mata M, Rufián S, LópezCillero P. (2010). Prediction of graft dysfunction based on extended criteria donors in the model for end-stage liver disease score era. Transplantation 90:530–539. Burra P, Mioni D, Cillo U, Fagiuoli S, Senzolo M, Naccarato R, Martines D. (2000). Long-term medical and psycho-social evaluation of patients undergoing orthotopic liver transplantation for alcoholic liver disease. Transpl Int 13(Suppl 1):S174–178. Caplan A. (1992). Living dangerously: the morality of using living persons as donors of lobes of liver for transplantation. Cambridge Quarterly of Healthcare Ethics 1(4):311–317. Davis GL, Albright JE, Cook SF, Rosenberg DM. (2003). Projecting future complications of chronic hepatitis C in the United States. Liver Transpl 9:331–338. Durand F, Renz JF, Alkofer B, Burra P, Clavien PA, Porte RJ, Freeman RB, Belghiti J. (2008). Report of the Paris consensus meeting on expanded criteria donors in liver transplantation. Liver Transpl 14(12):1694–1707. Eason JD, Gonwa TA, Davis CL, Sung RS, Gerber D, Bloom RD. (2008). Proceedings of Consensus

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Conference on Simultaneous Liver Kidney Transplantation (SLK). Am J Transplant 8:2243–2251. Edwards EB, Roberts JP, McBride MA, Schulak JA, Hunsiker LG. (1999). The effect of the volume of procedures at transplantation centers on mortality after liver transplantation. New England Journal of Medicine 341;27(Dec. 30):2049–2053. El-Serag HB. (2004). Hepatocellular carcinoma: recent trends in the United States. Gastroenterology 127:S27–34. Gerhardt TC, Goldstein RM, Urschel HC, Tripp LE, Levy MF, Husberg BS, Jennings LW, Gonwa TA, Klintmalm GB. (1996). Alcohol use following liver transplantation for alcoholic cirrhosis. Transplantation Oct 27;62(8):1060–1063. Gert B, Clouser KD, Culver C. (1998). Bioethics: A Return to Fundamentals. Oxford University Press. Hong JC, Yersiz H, Farmer DG, Duffy JP, Ghobrial RM, Nonthasoot B, Collins TE, Hiatt JR, Busuttil RW. (2009). Longterm outcomes for whole and segmental liver grafts in adult and pediatric liver transplant recipients: a 10-year comparative analysis of 2,988 cases. J Am Coll Surg 208:682–689. Hosenpud JD, Breen TJ, Edwards EB, Daily OP, Hunsicker LG. (1994). The effect of transplant center volume on cardiac transplant outcome. A Report of the United Network for Organ Sharing Scientific Registry. Journal of the American Medical Association 271;23 (June 15):1844–1849. Institute of Medicine (IOM), (1999). Organ Procurement and Transplantation: Assessing Current Policies and the Potential Impact of the DHHS Final Rule. National Academy Press, Washington, DC. Jonsen AR. (1998). The Birth of Bioethics. New York: Oxford University Press. Kamath PS, Kim WR; Advanced Liver Disease Study Group. (2007). The Model for End-stage Liver Disease (MELD). Hepatology 45:797–805. Kamm FM. (1993). Morality, Mortality: Volume I. New York: Oxford University Press. Kamm FM. (2002) In Health Care and Social Justice, Rhodes, Battin, & Silvers, ed. New York: Oxford University Press. Karvellas CJ, Safinia N, Auzinger G, Heaton N, Muiesan P, O’Grady J, Wendon J, Bernal W. (2010). Medical and psychiatric outcomes for patients transplanted for acetaminophen-induced acute liver failure: a case-control study. Liver Int 30:826–833. Kay NA. (1998). States want to keep residents’ donated organs: supporters say local patients would benefit. CNN Interactive (July 14), as posted at . Keating F. (1998). States want to keep residents’ donated organs: supporters say local patients would benefit.

CNN Interactive (July 14) as posted at . Kim WR, Biggins SW, Kremers WK, Wiesner RH, Kamath PS, Benson JT, Edwards E, Therneau TM. (2008). Hyponatremia and mortality among patients on the liver-transplant waiting list. New England Journal of Medicine 359:1018–1026. Laffel GL, Barnett AI, Finkelstein S, Kaye MP. (1992). The relation between experience and outcome in heart transplantation. New England Journal of Medicine 327;17 (Oct. 22):1220–1225. Licht RW, Vestergaard P, Brodersen A. (2008). Longterm outcome of patients with bipolar disorder commenced on lithium prophylaxis during hospitalization: a complete 15-year register-based follow-up. Bipolar Disord 10:79–86. Limosin F, Loze JY, Philippe A, Casadebaig F, Rouillon F. (2007). Ten-year prospective follow-up of the mortality by suicide in schizophrenic patients. Schizophr Res 94:23–28. Lin, Hung-Mo, Kauffman HM, McBride MA, Davies DB, Davies JD, Smith CM, Smith EB, Daily P, Kirkin J, Shield CF, Hunsicker LG. (1997). CenterSpecific Graft and Patient Survival Rates: United Network for Organ Sharing (UNOS) Report. Lucey MR, Weinrieb RM. (2009). Alcohol and substance abuse. Semin Liver Dis 29:66–73. Mackie J, Groves K, Hoyle A, Garcia C, Garcia R, Gunson B, Neuberger J. (2001). Orthotopic liver transplantation for alcoholic liver disease: a retrospective analysis of survival, recidivism, and risk factors predisposing to recidivism. Liver Transpl 7;5 (May):418–427. Merion, R.M., et al. (2008) ‘Transplants in Foreign Countries Among Patients Removed from the U.S. Transplant Waiting List, [2007 SRTR Report on the State of Transplantation], American Journal of Transplant, 8, 988–996. O’Leary JG, Yachimski PS, Friedman LS. (2009). Surgery in the patient with liver disease. Clin Liver Dis 13:211–231. Osorio RW, Ascher NL, Avery M, Bacchetti P, Roberts JP, Lake JR. (1994). Predicting recidivism after orthotopic liver transplantation for alcoholic liver disease. Hepatology 20;1 Pt 1 (July):105–110. Ostamo A, Lonnqvist J. (2001). Excess mortality of suicide attempters. Soc Psychiatry Psychiatr Epidemiol 36:29–35. Participants in the International Summit on Transplant Tourism and Organ Trafficking Convened by the Transplantation Society and International Society of Nephrology in Istanbul, Turkey, April 30–May 2, 2008. (2008). The Declaration of Istanbul on organ trafficking and transplant tourism. Transplantation 86:1013–1018.

Justice in Transplant Organ Allocation Pereira SP, Howard LM, Muiesan P, Rela M, Heaton N, Williams R. (2000). Quality of life after liver transplantation for alcoholic liver disease. Liver Transpl 6;6 (Nov):762–768. Pirenne J, Gelder FV, Coosemans W, Aerts R, Gunson B, Koshiba Fourneau I, Mirza D, Steenbergen WV, Fevery J, Nevens F, McMaster P. (2001). Type of donor aortic preservation solution and not cold ischemia time is a major determination of biliary strictures after liver transplantation. Liver Transpl 7;6 (June):540–545. Pomfret EA, Washburn K, Wald C, Nalesnik MA, Douglas D, Russo M, Roberts J, Reich DJ, Schwartz ME, Mieles L, Lee FT, Florman S, Yao F, Harper A, Edwards E, Freeman R, Lake J. (2010). Report of a national conference on liver allocation in patients with hepatocellular carcinoma in the United States. Liver Transpl 16:262–278. Proceedings of the MESSAGE Meeting: MELD (Model for End-stage Liver Disease) Exception Study Group. March 1–2, 2006. Chicago, Illinois. Liver Transpl 2006;12:S85–136. Reed AI, Merion RM, Roberts JP, Klintmalm GB, Abecassis MM, Olthoff KM, Langnas AN. (2009). The Declaration of Istanbul: review and commentary by the American Society of Transplant Surgeons Ethics Committee and Executive Committee. Am J Transplant 9:2466–2469. Rhodes R. (1995). Love thy patient: Justice, caring and the doctor-patient relationship. Cambridge Quarterly of Healthcare Ethics 4(4):434–447. Rhodes R, Miller C, Schwartz M. (1992). Transplant recipient selection: peacetime vs. wartime triage. Cambridge Quarterly of Healthcare Ethics 4(4): 327–331. Roayaie K, Feng S. (2007). Allocation policy for hepatocellular carcinoma in the MELD era: room for improvement? Liver Transpl 13:S36–43. Scanlon TM. (1998). What We Owe to Each Other. The Belknap Press of Harvard University Press, Cambridge, MA. Schiano TD, Rhodes R. (2010). Transplant tourism. Curr Opin Organ Transplant 15:245–248. Schiano TD, Rhodes R. (2010). The dilemma and reality of transplant tourism: an ethical perspective for liver transplant programs. Liver Transpl 16: 113–117. Shalala, D. (1998). Donna Shalala’s Letter to Congress, June 1, 1998.

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Showstack J, Katz PP, Lake JR, Brown RS, Jr, Dudley RA, Belle S, Wiesner RH, Zetterman RK, Everhart J. (1999). Resource utilization in liver transplantation: Effects of patient characteristics and clinical practice. Journal of the American Medical Association 281;15 (April 21):1381–1386. Stratta RJ, Wood RP, Langnas AN, Duckworth RM, Markin RS, Marujo W, Grazi GL, Saito S, Dawidson I, Rikkers LF. (1990). The impact of extended preservation on clinical liver transplantation. Transplantation 50;3 (Sept):438–443. Tabbane K, Joober R, Spadone C, Poirier MF, Olié JP. (1993). Mortality and cause of death in schizophrenia. Review of the literature. Encephale 19:23–28. Tang H, Boulton R, Gunson B, Hubscher S, Neuberger J. (1998). Patterns of alcohol consumption after liver transplantation. Gut 43;1 (July):140–145. United Network for Organ Sharing (UNOS). (1999) Annual Report to the U.S. Scientific Registry of Transplant Recipients and the Organ Procurement and Transplantation Network: Transplant Data 1989–1998 (2000, February 21). Rockville, MD, and Richmond, VA: HHS/HRS/OSP/DOT and UNOS.

United Network for Organ Sharing, UNOS Critical Data (June 3, 2001). Available at United Network for Organ Sharing, UNOS Policy 3.6 Allocation of Livers (June 16, 2000). Available at

United Network for Organ Sharing, UNOS Principles and Objectives of Equitable Organ Allocation 1995– 2001 (June 3, 2001). Available at United Network for Organ Sharing, (2012) Death Removals by UNOS Status by Year. Available at http://optn.transplant.hrsa.gov/latestData/rptData. asp. (Accessed February 27, 2012) UPMC News Bureau Release (Nov. 18, 1997). Data Analysis Supports Idea of Broad Sharing of Donor Livers. Available at (Dec. 4, 1998). Veatch RM. (2000). Transplantation Ethics. Washington DC: Georgetown University Press.

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41 Justice in Planning for Pandemics and Disasters L E S L I E P I C K E R I N G F R A N C I S A N D M A R G A R E T P. B AT T I N

Q

uestions of distributive justice in pandemic planning arise at levels of process and substance. What is a just planning process? What considerations should be taken into account in considering the justice of plans themselves? Are questions of justice in planning questions of compensatory justice: what do we owe those, whether first responders taking risks or those who are quarantined to protect us all, who have borne disproportionate burdens as the disaster unfolds? Or, are these questions of distributive justice: how should the benefits and burdens of horrible events or the risks of horrible events be allocated or reallocated? What are the responsibilities of countries to each other, and do poorer countries have responsibilities to richer countries, such as vigilance in detecting and reporting outbreaks, even if richer countries do not reciprocate with corresponding benefits such as support for the development of health care infrastructures? Finally, do theoretical differences divide pandemic planning, where diseases can spread from person to person, from disaster planning more generally?

PA N D E M I C S A N D DISASTERS The 1918 flu pandemic was one of the most devastating episodes of infectious disease in history. Flu of such pandemic proportions has not been the experience of most people alive today, although other pandemic diseases such as HIV have been. In the late 1970s, the U.S. Surgeon General reportedly pronounced the death of infectious disease, a pronouncement that seems utterly naïve in the wake of HIV, re-emergence of polio, resistant tuberculosis, endemic cholera, and much more. For multiple biological reasons, including the instability of the virus, influenza is more likely to be unpredictable, to become quickly pandemic, and to encounter populations without effective immunity than many other contagious,

infectious diseases. Avian flu brought widespread public concern and focused attention on pandemic planning. By January 2008, the H5N1 virus appeared to be surviving extensively in wild waterfowl populations with regular spread to domestic poultry flocks in Asia, Africa, India, and Europe.1 As reports of new cases dwindled and humanto-human transmission appeared increasingly unlikely, public attention to avian influenza waned. Outbreaks of swine (H1N1) flu in 2009– 2010 brought new concerns, which quickly subsided when reports of outbreak severity seemed exaggerated. Indeed, natural disasters, especially earthquakes and tsunamis, have overtaken pandemic influenza in the scale of human death and attention. In the aftermath of the Haitian earthquake, infectious disease re-emerged, primarily in the form of cholera. Cholera’s spread requires contaminated water, however; and cholera, like HIV, is not an illness that can be expected to spread worldwide potentially within days of an initial sneeze. Public attention to pandemic influenza has thus waned, along with the perceived immediacy of threats. Attention to pandemic planning has not waned to quite the same extent, although it has diminished somewhat and become more integrated into general discussions of disaster planning. Serious concerns continue about the adequacy of global pandemic preparedness.2 Concerns have also been raised about the role played by conflicts of interest in the planning process, although direct accusations of the influence of vaccine manufacturers have been rebutted.3 Additional problems are raised by uncertainty: about the likelihood of a pandemic, about the form any pandemic might take (including the organism, its mode and rapidity of spread, and evidence of its presence before symptoms become apparent, among other questions), about capacity

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for recognition that a pandemic may be imminent, and about available measures for control or mitigation. This chapter examines issues of justice in pandemic planning in the context of more general questions of justice in disaster planning. A core question is whether unique challenges to justice are raised by the potential for disease spread from person to person.

JUSTICE IN PLANNING: PROCES SES In a highly influential report, the Joint Centre for Bioethics at the University of Toronto proposed five key procedural values to guide pandemic planning. Planning processes should be reasonable, open and transparent, inclusive, responsive, and accountable. These procedural values were coupled with 10 substantive values: liberty, prevention of public harm, proportionality, privacy, the duty to provide care, reciprocity, equity, trust, solidarity, and stewardship.4 Albeit with variations, these values have informed the majority of pandemic planning to date. Procedural values such as transparency and accountability allow members of the public to understand how planning is proceeding and what is being planned. Without these values, the public will have no or limited ways of understanding what is being recommended and who is making the recommendations. Inclusivity aims to bring multiple and different voices into the planning process. Responsiveness ensures that voices are given serious consideration and answered (even if the decision is not what they would recommend). As a procedural value, reasonableness addresses the character of discussion—reasoned responses to arguments—rather than the substance of the reasons proposed. Some planning processes have largely comported with these values. The World Health Organization (WHO) plan recommends both international and national measures; it was developed after international consultation and is available on the Internet.5 In the United States, for example, a number of jurisdictions have opened their plans to public comments and made alterations based on these comments. The Centers for Disease Control and Prevention invited comments on the first draft of its proposal to ration antivirals, and many state planning agencies likewise sought public comment. Transparency is also reasonably widespread, although with some noteworthy exceptions. European Community

guidance is publicly available,6 as are the plans of EEC nations. As of April 2012, some 89 national plans are listed on the WHO website;7 recent additions include those from Cambodia, China, Laos, Myanmar, and Vietnam, all nations with early reports of cases of H5N1 in poultry8 and all with human cases of H5N1. An additional procedural concern is that although many plans have been updated, some have not been updated or have not had updates published. Planning that is not open or inclusive risks losing critical public trust and acceptance of difficult choices.9 Yet some commentators have lamented the apparent inability of open decisionmaking structures to make difficult choices in the face of identified victims.10 These commentators raise a variety of concerns about open and inclusive processes. The observation is anodyne that there are circumstances in which tensions appear between antecedently adopted social policies and their application in the face of individual needs. What to make of these tensions is the issue. Surely these tensions are exacerbated by judgments that the social policies themselves are problematic from the perspective of justice, in particular when the individuals most affected have not been adequately involved in the formulation of or supported by the social policy decisions in question. People who believe that vaccines or prophylactics have been allocated unjustly to politically privileged people by closed-door decisions may be particularly unhappy when they are themselves threatened by disease spread but left unprotected. Those “discrete and insular minorities”11 who believe they have been effectively left out of the political process because of their race or other features may regard themselves as especially aggrieved when essential supplies are allocated to others. These concerns point to how failures of inclusiveness can both deepen and be deepened by existing injustice. There are even more general reasons to support inclusiveness and transparency in planning, however. We have argued elsewhere that there is both an empirical and a metaphysical sense in which we are all potentially at risk from contagious disease or disaster. We are interrelated in the face of disease spread, all potentially victims and vectors to one another. We are all subject to the vagaries of weather and tectonic plates. Even if we do not live in earthquake “hot zones,” our food, energy, or other essential supplies may come from these areas. The radiation that leaks into the ocean may

Justice in Planning for Pandemics and Disasters travel worldwide. The earthquake tragedy in Japan is but one reminder of the ineluctable and unpredictable ways in which we are “all in this together.”12 Transparent and inclusive planning processes reflect this feature of human life—and may as well result in plans that attempt, as best as possible, to support all as victims even in the face of terrible scarcity.

JUSTICE WITHIN PLANS: A L L O C AT I O N Pandemic plans assume that difficult decisions will need to be made about the allocation of scarce resources: vaccines, antimicrobials, hospital beds, and resource-intensive treatments such as ventilators or intensive care units. One type of approach to these allocation decisions rests on minimizing spread. An example is “ring vaccination” around an area of outbreak, coupled with efforts to prevent travel outside of the ring by people who might be contagious. Vaccination of “superspreaders” of disease, such as children, is another example of this strategy. This approach is arguably just in the sense that it takes the interests of each into account by attempting to protect everyone from disease spread. Depending on the capacity for early identification of disease patterns, rapidity of disease spread, and the ability to prevent remote transmission by methods such as transportation closures, this method may prove of limited protective efficacy. Other allocation recommendations focus on the benefits (or lack thereof) for particular patients. Prevention of the greatest harm may counsel allocation to those most likely to become severely ill if infected—for example, people with diminished respiratory function who may develop severe pneumonia or respiratory distress syndrome if infected by influenza. Armand Antommaria and co-authors defend harm prevention as an allocation strategy, and point out as well that it may be especially difficult to predict mortality or resource utilization in children.13 These authors also object to taking projected quality of life or disability considerations into account in making allocation decisions. Once prevention of spread and need for treatment have been taken into account, these authors argue, fairness requires that any remaining scarcity be addressed by allocation based on chance. A different approach is to attempt to maximize the benefits derived from utilization of scarce treatment resources. Some pandemic plans allocate scarce high-intensity resources such as

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ventilators to patients believed to have the highest probability of benefiting from them, in the sense that they are likely to need the ventilator to get better and that they are likely to get better with the ventilator.14 Some versions of this allocation structure also direct resources away from those who are most likely to get better without ventilator support (but who might nonetheless die without it) and those who are least likely to get better with ventilator support (but who are very unlikely to survive without it). Allocation away from those who are likely to get better even if they do not receive ventilator support has proved to be the more controversial aspect of this approach.15 These treatment-benefit-based approaches also caution against incorporating “subjective” assessments of quality of life into allocation decisions, relying instead on “objective” measures of organ function and other physiological conditions. Finally, these approaches do consider the importance of the person to the extent of recommending palliative care for those who will not receive more intensive interventions. To those who will not receive treatment that might be of benefit in the face of scarcity, however, the recommendation for palliative care is likely to be cold comfort. A more egalitarian approach allocates based on chance, putting each at similar risk of triage despite the differences in their antecedent health conditions. That both a “greatest individual benefit” and a “greatest chance of (different) benefit” involve very real losses for some suggests that support for each as victims requires placing continuing pressure on the assumption that grievous scarcity is ineluctable. Methods for detecting disease early and preventing spread are important from this perspective of justice. So is the development of treatment methods that are less demanding on resources, such as the Pandemic Ventilator Project’s efforts to develop an inexpensive, low-tech ventilator.16

JUSTICE WITHIN PLANS: C O M P E N S AT I O N Pandemic plans also contemplate the possibility that some people will take, or be required to take, actions (or inactions) that place them at risks of harm that they would not encounter, absent the actions (or inactions) in question. Two of the most discussed examples of these are first responders and those who undergo required isolation or quarantine. Other examples of individuals experiencing disadvantages that they would not have faced but for decisions in pandemic

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plans should not be forgotten, however. These include individuals who would have received health care treatment but who do not, because of triage decisions to allocate resources elsewhere. Pandemic plans also incorporate strategies that mean that people will lose wages, such as temporary or part-time workers whose jobs cease because of “stay home” or closure requirements imposed to reduce the likelihood of disease spread.17 These potential losses raise questions not only of distributive, but also of compensatory justice. During a pandemic, some will be in positions of special responsibility for essential services. These include health care professionals and emergency workers. They also include workers who deliver essential supplies such as food or pharmaceuticals and workers who maintain essential infrastructural services such as power or transportation. Considerable debate addresses whether some or all of these personnel have duties to fulfill their job responsibilities despite significant personal risks to themselves or those close to them. Much of this debate has been directed to physicians, who arguably by virtue of their profession have undertaken the duty to treat in such circumstances.18 Others point out that, even with respect to some health care workers, it may not be clear that all (less-well-paid assistive personnel, for example) have assumed responsibility to face highly increased personal risks in virtue of their jobs.19 These differences may be compounded by the overall justice of the society in question, where longstanding inequalities of race or class may have affected opportunities available to these workers. With respect to all who take special risks, reciprocity has been a core principle of pandemic planning. The argument is that if we expect people to take increased risks of significant harm to protect us all, we owe them in return our best efforts to mitigate the risks for them and to attempt to make it up to them (or their families) to the extent possible if mitigation fails. A related argument is promissory in character: decisions to undertake jobs of special risks were made with the expectation—perhaps even the explicit promise—of such protections. A subsidiary argument is that without the knowledge that such efforts will be made, those in the line of greater risks may be unwilling (perhaps even justifiably so, for example if promises have been broken) to assume their duties. From the perspective of justice, the question about these reciprocity arguments is not whether they succeed or fail in themselves. Rather, it is

whether they apply more broadly than typically presented. First responders play certain defined social roles, but others may also take heroic risks to benefit the rest of us. Perhaps a distinction is that first responders have been formally assigned their roles and thus in some sense requested to assume these risks by those from whom compensation would come. Other possible distinctions might lie in the extent of the risks or in the types of promises made to first responders. From the perspective of justice, the argument needs to be spelled out why such distinctions single out all— and only—first responders. For example, consider the neighbor who organizes food for those who cannot get it for themselves, and takes risks equivalent to that of first responders. The fact that this is not a formally designated or paid role might actually be thought to count for rather than against obligations to compensate. The justice concern is that reciprocity arguments may cut more broadly than they are often characterized. Reciprocity is not the only argument for providing special protections to first responders, however. Efforts to reduce pandemic spread or to mitigate pandemic damage require the continued efforts of many personnel. If first responders get sick and cannot work, they will be difficult to replace and pandemics may worsen. Moreover, first responders are also likely spreaders if they become contagious before symptoms are apparent. So it is reasonable from the perspective of reducing spread to provide them with preventives or prophylactics that reduce contagiousness. Similar points apply to those who are in particular positions with respect to preventing spread.20 Decisions about allocations on the basis of reducing spread may tilt in favor of first responders, but they may also suggest allocations to “superspreaders” such as children. Isolation and quarantine are methods of reducing disease spread that likely impose particularly heavy costs on those who are required to undergo them. Isolation refers to the separation of those who are actually ill and quarantine to the cordoning off of people or places that are thought to have the possibility of becoming ill or causing illness.21 At the initiation of the most recent wave of pandemic planning, the evidence basis for isolation, quarantine, and other forms of social distancing as means to prevent disease spread was thought to be weak.22 Recent discussions indicate some evidence supporting face masks, hand washing, cough etiquette, reduced crowding, and school closures as measures to retard spread.23

Justice in Planning for Pandemics and Disasters Quarantine of those thought to have been exposed but not yet ill may actually increase the risks of contracting disease among those who must undergo it. For this reason, commentators have argued that the strategy is unjust; Daniel Markovits, for example, argues for this reason that vaccination, even if less effective, is more just than quarantine.24 A related argument cites the high concentration of costs that quarantine imposes on individuals and contends that quarantine is unjust unless its benefits are significant and clearly established. If people who have been exposed cannot be reliably identified before they become symptomatic, however, the efficacy of quarantine is doubtful. For example, in 2010 the U.S. government abandoned proposed border quarantine regulations on the basis of efficacy concerns.25 In addition to concerns about their efficacy, quarantine and isolation treat people who have been exposed primarily as vectors of disease transmission. If justice in planning requires attention to supporting each as victims of disease, any consideration of isolation or quarantine must take this into account. Plans incorporating isolation without consideration for delivery of basic supplies, palliation measures, or prophylactics or forms of protection for those such as family members quarantined with the person isolated fail in this regard.26 It should be noted that many of these measures—gloves, face masks, or even aspirin—are very inexpensive. Quarantine measures that herd people together rather than attempting to protect them from one another, or that quarantine without providing available preventive measures, are also unjust in failing to attend to those they harm as potential victims.

JUSTICE WITHIN PLANS: THE SIGNIFICANCE OF EXISTING INJUSTICE An ongoing problem of justice for pandemic planning is that it does not write upon a blank social slate. Plans are developed for societies that may be marked by considerable injustice. Inequities in access to health care, social crowding, poor nutrition, and other factors that are themselves the result of distributive injustice may compound patterns of infection and disease spread. Plans that isolate the already sick, that impose social distancing measures, that limit access by the poor to essential social services, or that triage treatment against the sickest, may compound these injustices. Tabery and Mackett develop a forceful account of these concerns.27

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Pandemic plans that focus on near-term strategies such as stockpiling expensive prophylactics may thus be less just than plans that work to develop health infrastructures that both address existing injustices in access to health care and increase the probability of early detection of outbreaks. More generally, the justice of allocating extensive resources to pandemic planning in societies that fail to address basic health care needs may also be questioned. To give a stark example comparing allocation to pandemic plans with overall justice in access to health care, in the United States, the initial federal appropriation for influenza planning was $3.8 billion, including $1.8 billion for vaccine development,28 and the second year’s appropriation was $2.3 billion.29 The funding for the entire expansion of the state children’s health insurance plan (S-CHIP) vetoed by President Bush in the fall of 2007 was $35 billion, approximately six times as much—but this was a proposal that would have extended health insurance availability to approximately 10 million children in the United States.30

JUSTICE AND PLANNING: W H AT D O C O U N T R I E S OW E O N E A N OT H E R ? The significance of existing injustice is also clear in the international context. Many—but of course not all—new infectious agents have emerged from impoverished areas of the world. In 2005, the World Health Assembly of the WHO adopted new International Health Regulations designed to augment surveillance capabilities, among other goals. Under the regulations, all “states parties” (that is, all members of the WHO) agree to notify WHO of health events that might create an emergency of international concern. The regulations specify that a single case of some diseases—polio, SARS, smallpox, and pandemic influenza—constitutes such an emergency. Reporting disease may have significant repercussions for the society involved. These repercussions may include reduced revenue from tourism, difficulties for people from the country in traveling elsewhere, and direct economic damage within the country itself. Reports of poultry infected with avian influenza, for example, resulted in destruction of the means of livelihood for many. Chhanda Chakraborti has provided a powerful description of how failures of transparency and inadequacies in compensation fueled anger and mistrust when poultry were destroyed in West Bengal.31 In 2007, Indonesia refused to

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supply avian flu virus samples in the absence of guarantees that they would receive help in developing vaccine manufacturing capacity.32 The World Health Regulations also provide for support from WHO for nations attempting to develop the public-health capacity for surveillance.33 Lawrence Gostin has argued that there are self-interested reasons for wealthier nations to support building the capacity to meet basic survival needs worldwide.34 Without such capacity, it may be especially difficult to engage in successful syndromic surveillance, the identification of patterns of symptoms that may be of significance in detecting outbreaks of disease.35 For diseases that spread rapidly even before symptoms become apparent, such “early warning” capabilities are particularly important. Thus national security may provide reasons for all to support development of basic public-health infrastructure worldwide. Others have questioned the reach of this argument, however. Despite uncertainties about disease transmission, it may appear that Gostin’s argument goes only so far; indeed, Gostin himself characterizes the argument as about basic survival needs and not health care needs more generally. Fisher and Syed, for example, argue that national self-interest in protection from disease spread is insufficient to support an obligation on the part of wealthier countries to bear costs of the development of treatment capacities in less well-off countries, and that reasons of justice must be called on instead.36 As an illustration of how this might work, the argument sketched above to the conclusion that there is a sense in which “we are all in this together” may provide reasons rooted in justice for sharing the costs of at least some health care that goes beyond what might be narrowly required for pandemic detection and prevention of spread. Both national security reasons and reasons of justice therefore support obligations of wealthier nations to attend to the health infrastructure needs of poorer areas of the world.

ARE DISASTERS AND PA N D E M I C S D I F F E R E N T ? At least one group has pointed out that pandemics and tsunamis have received different treatment and that these differences are unjust.37 In the example of these authors, contributions to victims of earthquakes and tsunamis far outstrip contributions to victims of the HIV/AIDS pandemic. These authors argue that there are no clear differences between the victims of natural disasters and victims of pandemics, and so these

differences in contributions are unjust. But are there ethically significant differences between disasters and pandemics, or should disaster and pandemic planning be seen as problems to be taken together for planning purposes to the extent it is practical to do so? If obligations of international justice are thought to rest on uncertainties of disease spread, it might seem that pandemics arguably have greater claims on international resources than natural disasters. However, as the Japanese earthquake and subsequent radiation leaks illustrate, the effects of natural disasters may not be local at all. Radiation spread and spreads of other pollutants through air or water can be as global as the spread of infectious disease. Moreover, activities entered into elsewhere—such as consumption patterns that contribute to global climate change— may affect the intensity and severity of disasters viewed as natural. Such interactive structures may serve as a basis for the recognition of interconnected obligations.38 Changing weather patterns and ocean levels, for example, contribute significantly to the recurrent flooding in Bangladesh and Pakistan.39 Physical destruction can in turn increase risks of infectious disease, especially in areas with poor public-health infrastructures or sanitation systems,40 as the now-endemic cholera in Haiti illustrates. Pandemic disease does serve to remind us of human biological interconnection and common susceptibility to risks, as suggested earlier in this chapter. But pandemics are not unique in this respect: we are all interconnected and at risk from one another on this “fragile earth our island home.”41 Justice in pandemic and disaster planning must start with this premise, against a background of imperfect justice. This chapter has suggested that several conclusions follow. Planning processes must be inclusive and transparent, in a manner that is ongoing and responsive. Planning must start by addressing infrastructure and measures to mitigate severity. Planning must do as much as it can to support those who are least well off and who may be left out, through protection, development of inexpensive and alternative treatment measures, maintenance of essential supply chains and other services, and communication and palliative care. Finally, planning must remember that each of us is susceptible to the acts of others, in ways we may never recognize, whether those actions be coughing, energy consumption, or international air travel.

Justice in Planning for Pandemics and Disasters Notes 1. Writing Committee of the Second World Health Organization Consultation on Clinical Aspects of Human Infection with Avian Influenza A (H5N1) Virus. (2008). Update on avian influenza A (H5N1) virus infection in humans. New England Journal of Medicine 358(3):261–273. 2. Preview, Report of the Review Committee on the Functioning of the International Health Regulations (2005) and on Pandemic Influenza A (H1N1) 2009 (draft March 7, 2011), p. 9, http://www.who.int/ihr/ preview_report_review_committee_mar2011_en.pdf, last visited March 31, 2011. 3. Id., p. 16, p. 19. 4. University of Toronto Joint Centre for Bioethics. (Nov. 2005). Stand On Guard for Thee: Ethical Considerations in Preparedness for Pandemic Influenza. http://www.jointcentreforbioethics.ca/people/documents/upshur_stand_guard.pdf, last visited March 28, 2011. 5. World Health Organization, Influenza Preparedness Plans, http://www.who.int/influenza/preparedness/ plans/en/index.html, last visited April 26, 2012. 6. Commission of the European Communities. (Nov. 28, 2005). Communication from the Commission to The Council, the European Parliament, the European Economic and Social Committee and the Committee of the Regions on Pandemic Influenza Preparedness and Response Planning in the European Community, COM(2005) 607 final, Brussels. http://eur-lex.europa. eu/LexUriServ/site/en/com/2005/com2005_0607en01. pdf, last visited April 4, 2011. 7. World Health Organization. National Influenza Pandemic Plans. http://www.who.int/csr/disease/ influenza/nationalpandemic/en/index.html, last visited April 4, 2011. There is a plan for Hong Kong on the WHO site. 8. World Health Organization. (Jan. 14, 2008). H5N1 Influenza: Timeline of Major Events. http:// www.who.int/influenza/human_animal_interface/ avian_influenza/H5N1_avian_influenza_update.pdf (accessed Feb.13, 2012). 9. For a discussion of the importance of public trust in pandemic decisions, see Parmet, W. (2011). Pandemics, populism and the role of law in the H1N1 vaccine campaign. Saint Louis University Journal of Health Law & Policy 4:113–152. Meir Katz points to the risk of civil disobedience if disadvantaged groups are not engaged in planning processes in Katz, M. (2008). Bioterrorism and public law: the ethics of scarce medical resource allocation in mass casualty situations. Georgetown Journal of Legal Ethics 21:795–826. 10. E.g., Orentlicher, D. (2010). Controlling health care costs through public, transparent processes: the conflict between the morally right and the socially feasible. Iowa Journal of Corporation Law 36:807–821;

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Orentlicher, D. (2001). Matters of Life and Death: Making Moral Theory Work in Medical Ethics and the Law. Princeton: Princeton University Press; Calabresi, G., & P. Bobbitt. (1978). Tragic Choices, New York: W.W. Norton. 11. As famously remarked by Justice Stone in footnote 4 of the Carolene Products Case, U.S. v. Carolene Products Co., 304 U.S. 144, 152 (1938). 12. Battin, M.P., L.P. Francis, J. Jacobson, & C.B. Smith. (2009). The Patient as Victim and Vector: Ethics and Infectious Disease. New York: Oxford University Press. There is a sense in which infectious disease presents us with a naturalized Rawlsian thought experiment: no one knows whether they will be victim or they will be vector (or both, or neither) in the next pandemic. 13. Antommaria, A. J. Sweney, & W.B. Poss. (2010). Critical appraisal of triaging pediatric critical care resources during a pandemic: ethical and medical considerations. Pediatric Critical Care Medicine 11(3):396–400. 14. An initial and highly influential proposal of this type was developed in Canada. Christian, M.D., L. Hawryluck, R.S. Wax, et al. (2006). Development of a triage protocol for critical care during an influenza pandemic. CMAJ 175(11):1377–1381. This proposal used the Sequential Organ Failure Assessment tool as a method for scoring patients in need of critical care. The proposal triaged against patients with a poor prognosis despite ICU care, patients requiring modes of care not available during a pandemic, and patients whose underlying illnesses have poor prognoses. Although the proposal originally did not include age as a triage factor, initial public discussion led the authors to propose an age cutoff of 85 for ICU support during a pandemic. See also New York State Task Force on Life and the Law, Workgroup on Ventilator Allocation in an Influenza Pandemic, Draft for Public Comment (March 15, 2007). http://www.health.state. ny.us/diseases/communicable/influenza/pandemic/ ventilators/docs/ventilator_guidance.pdf, last visited April 9, 2011. 15. See, e.g., New York State Task Force on Life and the Law, Workgroup on Ventilator Allocation in an Influenza Pandemic, Draft for Public Comment (March 15, 2007), http://www.health.state.ny.us/ diseases/communicable/influenza/pandemic/ventilators/docs/ventilator_guidance.pdf, last visited April 9, 2011. 16. The Pandemic Ventilator Project, http:// www.panvent.blogspot.com/, last visited April 9, 2011. 17. For a discussion of some of these broader issues of economic compensation, see Williams, V.J. (2007). Fluconomics—preserving our hospital infrastructure during and after a pandemic. Yale Journal of Health Law, Policy and Ethics 7:99–152.

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18. Dwyer, J. & D. Tsai. (2008). Developing the duty to treat: HIV, SARS, and the next epidemic. Journal of Medical Ethics 34:7–10. 19. Malm, H. T. May, L. Francis, et al. (Aug. 2008). Ethics, pandemics, and the duty to treat. AJOB 8(8): 4–19. 20. May, T. (2006). Ethical Issues in Pandemic Flu Response. American Public Health Association, Boston, MA. http://apha.confex.com/apha/134am/ techprogram/paper_130265.htm, last visited April 8, 2011. 21. Centers for Disease Control. Understand Quarantine and Isolation. http://www.bt.cdc.gov/preparedness/quarantine/, last visited April 9, 2011. 22. E.g., Aledort, J.E., N. Lurie, J. Wasserman, & S.A. Bozzette. (2007). Non-pharmaceutical public health interventions for pandemic influenza: an evaluation of the evidence base. BMC Public Health 7:208, doi:10.1186/1471–2458-7–208. 23. Aiello, A.E., et al. (2010). Research findings from nonpharmaceutical intervention studies for pandemic influenza and current gaps in the research. American Journal of Infection Control 38(4):251–258. 24. Markovits, D.J. (2005). Quarantines and distributive justice. Journal of Law, Medicine & Ethics 33:323–338. 25. Young, A. (April 1, 2010). Obama administration scraps quarantine regulations. USA Today http:// www.usatoday.com/news/washington/2010-04-01quarantine_N.htm, last visited February 13, 2012. 26. Britain’s pandemic plan is a notable example of a plan that is attentive to these issues. It states, “Plans must ensure that people’s expectations of services in a pandemic are realistic and, if they are being asked to take increased risks or face increased burdens, that they are supported in doing so and that those risks and burdens are minimised as far as possible.” U.K. Department of Health. (2007). Pandemic Flu: A National Framework for Responding to an Influenza Pandemic, p. 58, http://webarchive.nationalarchives. gov.uk/20100407210110/http://www.dh.gov.uk/ prod_consum_dh/groups/dh_digitalassets/@dh/@en/ documents/digitalasset/dh_080745.pdf, last visited April 9, 2011. 27. Tabery, J., & C.W. Mackett. (2008). The ethics of triage in the event of an influenza pandemic. Disaster Medicine and Public Health Preparedness 2:114–118. 28. Department of Health and Human Services. (March 13, 2006). Pandemic Planning Update, available at http://flu.gov/pandemic/history/panflu20060313.pdf (accessed Feb. 13, 2012). 29. Department of Health and Human Services. (November 2006). Pandemic Planning Update III, available at http://flu.gov/pandemic/history/panflu20060313.pdf (accessed Feb. 13, 2012).

30. E.g., Issenberg, S. (Oct. 19, 2007). House fails to override veto of SCHIP—Democrats vow to continue pushing a bill. Boston Globe, p. A2. 31. Chakraborti, C. (2009). Pandemic management and developing world bioethics: bird flu in West Bengal. Developing World Bioethics 9(3):161–166. 32. Fidler, D. (2008). Global health jurisprudence: a time of reckoning. Georgetown Law Journal 96:393– 412, at p. 411. 33. World Health Organization. International Health Regulations, article 13. 34 Gostin, L.O. (2008). Meeting basic survival needs of the world’s least healthy people: toward a framework convention on global health. Georgetown Law Journal 96:331–392. 35. For a discussion of the ethics of syndromic surveillance, see Francis, L.P., M.P. Battin, J.A. Jacobson, & C.B. Smith. (2009). Syndromic surveillance and patients as victims and vectors. Journal of Bioethical Inquiry 6(2):187–195. 36. E.g., Fisher, W.W., & T. Syed. (2007). Global justice in health care: developing drugs for the developing world. U.C. Davis Law Review 40:581–678. The specific topic of this article is drug development. 37. Christie, T., G. Asrat, B. Jiwani, et al. (2007). Exploring disparities between global HIV/AIDS funding and recent tsunami relief efforts: an ethical analysis. Developing World Bioethics 7(1):1–7. Argues that the relief efforts are much less for HIV—but the two are similar disasters, hence the current relief disparity is unjust. 38. For the development of this argument, see Francis, L.P. (2003). Global systemic problems and interconnected duties. Environmental Ethics 25:115–128. 39. Oxfam. Bangladesh Floods. http://www.oxfam. org.uk/oxfam_in_action/emergencies/bangladeshfloods.html, last visited April 10, 2011. 40. HealthMap. (Jan. 18, 2011). Flooding Brings Infectious Diseases; Foot and Mouth, and Influenza Updates. http://healthmapblog.blogspot.com/2011/01/ flooding-brings-infectious-diseases.html, last visited April 10, 2011; Voice of America News. (Aug. 24, 2010). Pakistani, UN Officials Report Rise in Infectious Disease Due to Flood. http://www.voanews.com/english/news/Pakistani-UN-Officials-Report-Rise-inInfectious-Disease-Due-to-Flood-101390989.html, last visited April 10, 2011; Ivers, L.C., & E.T. Ryan. (2006). Infectious diseases of severe weather-related and flood-related natural disasters. Curr Opin Infect Dis 19(5):408–414. 41. The phrase is from the Episcopalian Book of Common Prayer, Eucharistic Prayer C.

42 Justice Has (Almost) Nothing to Do With It Medical Malpractice and Tort Reform D AV I D A . H Y M A N A N D C H A R L E S S I LV E R

The malpractice reform debate is highly polarized, but the most profound disagreement is not between health care providers and the plaintiffs bar. The principal conflict is between the major political stakeholders on one side, and the academic community on the other. The former group understands the central question to be the desirability of enacting MICRA-style measures to discourage lawsuits and limit recoveries, with a $250,000 cap on non-economic damages as its centerpiece. The latter group is essentially unanimous in its opinion that traditional “tort reform” offers incomplete solutions to only a subset of critical problems. sage, 

INTRODUCTION Patients rely on the health care system “to cure sometimes, to relieve often, and to comfort always,” but the system frequently falls short. Many treatments are ineffective. Others expose patients to undue risks, including injury or death. In the worst cases, providers pad their incomes by intentionally performing surgeries they know patients do not need. Criminal abuses are fortunately rare, and are dealt with by the criminal justice system. “Accidental” injuries are more common, and are the chief source of liability claims. When providers fail to meet patients’ reasonable expectation of safe and effective treatment delivered with appropriate care, what does justice require and what does the legal system actually deliver? If the legal system sometimes falls short (whether by delivering relief to patients who do not deserve it, shortchanging patients who do, or generating excessive costs), will proposed reforms, such as caps on non-economic damages, make the legal system work better? If not, what steps should be considered? We address these points in turn. We begin with a review of the basic legal framework. Patients injured by medical treatment, or misdiagnosis can sue for malpractice. To recover

damages, plaintiffs must prove “negligence”—that is, that their providers failed to exercise due care. Providers are not strictly liable for injuries; in other words, they are only liable for injuries resulting from professional negligence. The plaintiff must establish four elements of a tort lawsuit: duty, breach, proximate cause, and damages. “Duty” means that there was a relationship between patient and provider sufficient to trigger an obligation to exercise due care in the treatment of the patient. (Most of the time, duty is a non-issue, particularly if there is a preexisting relationship between provider and patient.) “Breach” means that the provider failed to exercise the care expected of a reasonably skilled provider. Establishing breach requires expert testimony, since the touchstone for establishing liability is deviation from the standard of care. (In many states, customary treatment is by definition not negligent, while other states have moved to a more demanding standard.) “Proximate cause” means that the breach of the standard of care was the cause in fact of compensable injury. Thus, injuries that are too remotely related to the injuries that were suffered cannot result in compensation. Finally, “damages” constitute the measure of recovery, and take two forms: economic (e.g., lost earnings and

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medical bills) and non-economic (e.g., pain and suffering). The plaintiff bears the burden of proof on all issues, including damages. Proving damages is often straightforward for economic damages, but can be difficult or contentious when the parties disagree about the patient’s future earnings or the severity or likely duration of the patient’s disability. Non-economic damages are more speculative, but tend to correlate with economic damages. In other words, juries seem to award higher non-economic damages to plaintiffs with high economic losses. We now turn to how this statement of the black letter law actually works in practice. The first part of the chapter provides a brief review of how often the medical system results in preventable injury.1 The second part discusses what justice requires for handling cases of negligent injury, and measures the performance of the legal system against that standard. The third part considers whether popular tort reforms are moving the legal system closer to or further from the standard of justice analyzed in the second part. The fourth part offers several suggestions for bringing the latter closer to the former. The final part offers a brief conclusion.

M E D I C A L I N J U RY A N D MEDICAL NEGLIGENCE The medical profession has strong professional norms regarding the importance of delivering high-quality, error-free care. Even so, many studies have found that medical injuries are distressingly common. The literature on health care quality is replete with statements that look like tabloid headlines but that are, in fact, descriptions of horrendously high error rates: “one-fourth of hospital deaths may be preventable”; “180,000 people may die” every year partly as a result of injuries sustained when receiving health care; “one-third of some hospital procedures may expose patients to risk without improving their health”; medical error is the eighth-leading, or sixth-leading, or third-leading cause of death in the United States, depending on whom one believes; and “[t]he United States loses more American lives to patient safety incidents every six months than it did in the entire Vietnam War” (Hyman & Silver, 2005). Simply stated, American health care is dogged by high error rates. Consider inpatient deaths stemming from preventable medical errors. In 1999, the Institute of Medicine (IOM) concluded that these errors kill 44,000 to 98,000 Americans annually. Preventable infections are so common that the Centers for

Disease Control and Prevention estimated that strict adherence to hand-washing procedures alone would save the lives of 20,000 hospitalized patients every year. In 2003, the Leapfrog Group, a consortium of large employers devoted to improving health care quality, contended that urban hospitals could avoid “over 160,000 deaths” every year by staffing intensive care units (ICUs) with ICU intensivists. In 2004, a consulting firm estimated that every year, almost 265,000 deaths among hospitalized Medicare patients “were potentially attributable to patient safety incident(s).” Although the number of deaths varies depending on the methodology employed in the study, no one doubts that errors occurring in hospitals take the lives of far too many patients, and that there is an “epidemic of potentially preventable iatrogenic death” (Hyman & Silver, 2005). Inpatient deaths are only the tip of the iceberg; by one estimate, more than 1 million people are injured by medical treatments annually in the U.S. These errors occur everywhere health care is supplied. We now turn to how effectively the medical malpractice system deals with this state of affairs.

JUSTICE AND THE MALPRACTICE SYSTEM What Does Justice Require? George Bernard Shaw once joked that if all the economists in the world were laid end to end, they wouldn’t reach a conclusion. When it comes to justice, the same might be said about law professors and philosophers. Scholarship on the tort system commonly employs two criteria when evaluating the system’s performance: compensation and deterrence. Compensation is said to be adequate when it reflects the merits of plaintiffs’ claims (i.e., plaintiffs who were not injured or who were treated with reasonable care get nothing) and restores victims of negligence to their rightful positions (the positions they would have occupied had they been treated appropriately) (Coleman, 1988). The tort system is said to generate sufficient deterrent force when damage awards motivate potential injurers to use reasonable care, thereby reducing the frequency and severity of injuries to efficient levels. In theory, tort awards can promote compensatory justice and foster optimal deterrence. If all victims received just compensation, potential injurers would find negligence unprofitable, meaning they would have incentives to exercise reasonable care. In fact, the medical malpractice liability system falls far short of these ideals.

Justice Has (Almost) Nothing to Do With It What Does the Malpractice System Deliver? How Often Do the Negligently Injured Sue? For the malpractice system to work properly, injured patients must sue. The conventional wisdom is that this is a non-problem; obstetricians joke about being sued when Harvard rejects the babies they deliver (Martin, 2004). However, the evidence is quite clear that relatively few injured patients demand compensation. At the highest level, one can compare the estimated number of medical injuries—more than 1 million per year— to the number of malpractice lawsuits filed nationwide—approximately 85,000 annually. With about 10 times as many injuries as malpractice claims, the only possible conclusion is that there is significant under-claiming—which means that many negligently injured patients are inadequately compensated and that negligence is under-deterred. The findings of three major studies using data from four different states support this conclusion. Focusing on patients hospitalized in California during 1974, Mills found that negligent injuries exceeded malpractice claims by a factor of 10 (Mills, 1978). The Harvard Medical Practice Study (HMPS) examined hospitalizations in New York in 1984 and found that the number of negligent injuries was 6.7 times larger than the number of statewide malpractice claims (Brennan, 1991). The third study, conducted by researchers associated with the HMPS, looked at hospitalizations in Colorado and Utah in 1992. It found comparable ratios of negligent injuries to statewide claim filings of 5:1 (Colorado) and 6.7:1 (Utah) (Studdert et al., 2000). Other studies report consistent results. For example, Sloan and Hsieh found that of 220 women in Florida in 1987 whose babies suffered serious or fatal birth injuries, only 23 sought legal advice and none sued (Sloen & Hsieh, 1995). Indeed, “the medical setting has provided the strongest evidence that the real tort crisis may consist in too few claims” (Weiler et al., 1993). To be sure, some patients sue even though their injuries were not caused by provider negligence. Such “over-claiming” is common. We now turn to how effectively the legal system handles claims once they are filed, since it must sort the wheat (meritorious claims) from the chaff (nonmeritorious claims). Do the Right People Get Paid? Critics of the tort system argue that it is essentially random, using language like “jackpot justice” and

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“lawsuit lottery” to describe the manner in which the system allocates payments among claimants. The argument is frequently bolstered with anecdotes describing out-of-control juries, and complaints about the irrationality of non-economic damages. It is useful to provide a basic analytical framework for thinking about the issue. As Table 42.1 indicates, any system for making compensation determinations will generate four kinds of results: proper payments (i.e., true positives), improper payments (i.e., false positives), improper payment denials (i.e., false negatives), and proper payment denials (i.e., true negatives). Proper payments and proper payment denials are the outcomes consistent with corrective justice. They occur, respectively, when an individual entitled to a payment receives it, and when an individual not entitled to a payment does not. Improper payments and improper payment denials occur, again respectively, when an individual not entitled to a payment receives one, and when an individual who deserves a payment goes home empty-handed. Judged by this basic framework, the medical malpractice system gets to the “right” result most of the time, but by no means all of the time. Studies find that claimants who received substandard care usually obtained compensation, that claimants who received proper care generally did not, and that claimants whose care quality was uncertain wound up in between (Hyman & Silver, 2006). A recent study of claims by HMPS-related researchers found that the malpractice system reached the “right” result about 75% of the time— with false negatives (improper payment denials) being a more frequent problem than false positives (improper payments) (Studdert, 2006). Clearly, the malpractice system sorts cases imperfectly. Perfection cannot reasonably be expected, however. Almost all of those who receive medical

TABLE 42.1 A T YPOLOGY OF MALPRACTICE PAYMENTS Was the Claimant Negligently Injured?

Was the Claimant Compensated? Yes

No

Yes

Proper Payment

Improper Payment Denial

No

Improper Payment

Proper Payment Denial

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treatment are sick to begin with, and some are at death’s door; in many cases, it can be difficult to differentiate malpractice from the natural course of disease. Every contested case involves opposing experts with conflicting opinions of the quality of the care delivered. As one set of commentators observed, “to the extent there is highly incomplete knowledge about the effect of particular interventions by health care providers on outcomes, it is unrealistic to expect courts to be omniscient in this regard” (Sloan, 1993). Of course, focusing on the resolution of claims that come through the front door of the legal system obscures the larger reality that improper payment denials (false negatives) overwhelmingly predominate when viewed from the perspective of the entire population of injured patients, most of whom do not file claims even when negligence caused them harm. And when evaluating the frequency of improper payments (false positives), one must keep in mind that the overwhelming majority of cases settle. When an insurer voluntarily pays a claim that an expert reviewer employed as part of a subsequent study adjudges to lack merit (i.e., to be a false positive/improper payment case), the insurer’s behavior makes it hard to believe the payment was wholly unwarranted. Insurers refuse to pay most medical malpractice claims, so they are quite willing to reject demands they deem without merit. Variation in expert medical opinion likely accounts for many decisions to treat as false positives claims that were resolved with a payment. To summarize, the malpractice system compensates only patients who demand payments, which most patients injured by medical negligence do not do. (We discuss the reasons for such under-claiming below.) If a claim is initiated and the claimant was negligently injured, he or she has a good chance (but by no means a guarantee) of receiving compensation. Of course, the adequacy of the compensation remains to be considered.

Are Those Who Bring Suit Adequately Compensated? The evidence is clear that the malpractice system routinely under-compensates most claimants, although victims with small claims are sometimes modestly overpaid (Hyman & Silver, 2006). Undercompensation also correlates positively with injury severity, so that victims suffering the worst injuries recover the smallest portions of their losses. As one commentator notes, “[t]his pattern of overcompensation at the lower end of the range

and under-compensation at the higher end is so well replicated that it qualifies as one of the major empirical phenomena of tort litigation ready for theoretical attention” (Saks, 1992). Injury severity is an important predictor of payouts, with more severe injuries consistently receiving higher payouts (Studdert, 2004; U.S. Department of Justice, 2001). Non-economic damages and the chance of a multimillion-dollar verdict also correlate strongly with injury severity, although payouts to deceased claimants are lower than for the most severely injured (but still living) claimants. Even a large verdict provides no guarantee of full compensation for a serious injury, however. Comparing verdicts to actual payments in Texas cases where patients won at trial, we found that patients rarely collected large verdicts in full, especially when verdicts exceeded the providers’ insurance policy limits. We also found that that both the likelihood of discounts and their size increased with verdict amount, meaning that the patients entitled to the most compensation (judging by the jury verdict) gave up the most, both in absolute dollars and as a percentage of their verdicts, in post-trial settlement negotiations (Hyman et al., 2007; Zeiler et al., 2007). To summarize, payment and injury are closely correlated—but injured patients often do not get their full damages because the malpractice system is stingy. And patients who don’t initiate a claim or lawsuit (who, as noted above, constitute the overwhelming majority of those who are negligently injured) obviously get nothing whatsoever from the medical malpractice system.

TO RT R E F O R M The United States has experienced three malpractice crises during the past 40 years. The first occurred in the early 1970s; the second was in the early 1980s; and the most recent one started around 2000. In response, states adopted a wide array of reforms. For analytical purposes, these are usefully sorted into reforms that target insurance premiums, health care quality, and the civil litigation system. Table 42.2 provides a list of typical reforms from each category. States varied widely as to which reforms they adopted, and some reforms were much more popular than others. We focus in this chapter on caps on non-economic damages, because they are one of the more popular tort reforms, and they have been the most extensively researched. California adopted the first non-economic damages cap (a flat cap of $250,000, not adjusted

Justice Has (Almost) Nothing to Do With It TABLE 42.2 MALPRACTICE REFORMS ADAPTED FROM BOVBJERG, 1989 1. Insurance Market Reforms A. Joint underwriting associations/Patient compensation funds B. Prior approval of rate increases C. Mandatory reporting of closed claims 2. Medical Quality Reforms A. Peer review protections B. Mandatory reporting of liability payouts & errors C. Requirement for continuing medical education 3. Tort Reforms A. Aimed at the number of lawsuits a. Arbitration b. Attorney fee controls c. Certificates of merit d. Pretrial screening panels B. Aimed at the size of recoveries a. Damage caps (punitive, non-economic, and total damages) b. Abrogation of joint & several liability c. Offset for collateral source payments C. Aimed at plaintiffs’ difficulty (or costs) of winning a. Expert witness requirements b. Informed consent limits c. Professional standard of care, and not ordinary negligence D. Aimed at functioning/cost of judicial process a. Mediation b. Notice of intent to sue c. Mandatory pretrial conferences/Alternative Dispute Resolution

for inflation) in 1975. In the intervening decades, roughly half the states have adopted such caps, with the details varying from state to state (Hyman et al., 2009). Do damages caps bring us closer to our goal of justice? More concretely, how do damages caps affect compensation and deterrence? We focus on Texas, which we have studied at length in other work. Texas is a good state to study because it has a large population and a large health care sector, and after malpractice premiums spiked in 2000, it adopted a comprehensive package of tort reforms in 2003. The reform package included a non-inflation-adjusted cap of $250,000 on non-economic damages in cases brought against physicians, and a separate cap of $250,000 to $500,000 for hospital-defendants.

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Effect of Tort Reform on Claiming and Payouts Damages caps significantly affect total payouts, by reducing both the number of claims and the payout per claim. Figure 42.1 is based on Texas Department of Insurance data on all closed, insured medical malpractice claims from 1990 through 2007. It shows the total payout for “large paid claims”—claims with payouts over $25,000 in 1988 dollars (≈$45,000 in 2009 dollars). The figure shows, and regression analysis confirms, that payouts were reasonably stable from 1988 to 2003, and then there was a precipitous decline. Other researchers, using different datasets and time periods, have come to similar conclusions about the effect of non-economic caps on payouts. Interestingly, Figure 42.1 makes it clear that although medical malpractice insurance premiums in Texas spiked in 2000, there was no corresponding change in payouts that would explain that spike. Texas responded to a crisis in malpractice insurance rates, which occurred independently of any change in the malpractice system. As caps reduce both the frequency of claims and the amounts paid to settle each claim, they undermine the compensatory and deterrent functions of tort law. By making malpractice cases less valuable, caps discourage plaintiffs’ attorneys from taking cases, thereby worsening the problem of under-claiming. Caps may also indirectly reduce the effectiveness of state medical boards, which often rely on malpractice judgments and settlements to signal the need for investigations. Other Effects of Damages Caps: Physician Supply Even if damages caps have the undesirable consequences outlined above, they could have offsetting benefits. For example, tort reform advocates claim that damages caps and other restrictions on lawsuits increase the number of physicians willing to practice in a state, enabling more patients to receive treatment. They also contend that damages caps can reduce defensive medicine, making health care more affordable. What do we know about these effects? In Texas, tort reform advocates argued the state lost physicians before 2003 and that the package of reforms enacted that year reversed that trend. As evidence, they cite figures from the Texas Medical Board on the number of licenses to practice medicine that were requested and granted. As Table 42.3 indicates, applications rose moderately in 2004, then substantially in 2006, and remained

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dilemmas and priorities 350

Millions (1988$)

300 250 200 150 100 50 Total payout to med mal claims

01 20 02 20 03 20 04 20 05 20 06 20 07

00

20

99

20

98

19

97

19

96

19

95

19

94

19

93

19

92

19

91

19

90

19

89

19

19

19

88

0

FIGURE 42.1: Total Payout on Malpractice Claims, 1988–2007.

well above where they were in 2003. Issued licenses lagged somewhat, but also increased beginning in 2007. It is possible, then, that tort reform brought some new doctors into the state. How many is another matter. No study has attempted to figure out how many new doctors would have come to Texas without tort reform. Given the growth in Texas’ population and economy, both of which create employment opportunities and drive up salaries, some new physicians would surely have come to the state anyway. More importantly, applications and licenses are not really the variables of interest. To determine whether tort reform caused Texas’ supply of physicians to grow, one must look at the total physician

TABLE 42.3 TEX AS MEDICAL LICENSES APPLIED FOR AND GRANTED, FY2001FY2009 Year

Applications

Licenses

2001 2002 2003 2004 2005 2006 2007 2008 2009

2,445 2,552 2,561 2,947 2,992 4,026 4,041 4,023 4,094

1,370 2,828 2,513 2,343 2,692 2,516 3,324 3,621 3,129

population, which reflects departures and retirements, as well as new arrivals. One must also subtract out doctors who are not available to see patients because they are engaged in research or administration or perform other non-clinical work. The Texas Department of State Health Services maintains records showing the total number of physicians available to provide direct patient care to ordinary Texans (DPC physicians). Figure 42.2 shows the number of DPC physicians (both absolute and per capita) from 1990 to 2009. Clearly, doctors were not fleeing Texas before 2003; the number of DPC physicians increased every year from 1990 to 2003. Moreover, post-reform, the total number of physicians continued to increase at roughly the pre-reform rate. If one controls for population, the number of DPC physicians per capita rose steadily from 1996 to 2003, but was flat from 2004 to 2007 and had a modest uptick in 2008–2009. This is not the pattern one would expect if tort reform had a material effect on Texas’ physician supply. We also examined the number of physicians in three high-malpractice-risk specialties—obstetricians, neurosurgeons, and orthopedic surgeons. We found that during 2003 to 2007, the number of specialists in these areas increased at the same rate as Texas’ population (Silver, Hyman, & Black, 2008). The American Medical Association’s (AMA) comparative state rankings corroborate our assessment that Texas experienced no unusual growth in the size of its physician population after enacting tort reform in 2003. In 2003, the AMA ranked

Justice Has (Almost) Nothing to Do With It 45000

537

200

Total DPC

35000

175

30000 150

25000

DPC per 100,000 texans

40000

20000 125

15000 2009

2008

2007

2006 2005

2004

2003 2002

2001

2000

1999

1998

1997

1996

1995

1994

1993 1992

1991

1990

Direct patient care physicians

DPC physicians per 100,000 TX residents

FIGURE 42.2: Total DPC Physicians and DPC Physicians per 100,000 Texans, 1990–2009.

Texas 40th among all states in physicians per capita; in 2008, it ranked Texas 41st. Plainly, Texas has not become a magnet for physicians. In fact, in 2009, the AMA listed Texas as a “hot spot” state where Medicare patients have difficulty finding care. To summarize, tort reform had little impact on physician supply in Texas. Outside of Texas, evidence of the connection between malpractice exposure and the availability of services of particular types is mixed. Some studies find that residents of states with lawsuit restrictions sometimes enjoy better access to medical services of certain types or in certain areas, mainly rural counties. Others find that tort liability has no statistically significant impact on physicians’ location decisions. Because physicians consistently report that malpractice liability is a significant driver of practice decisions in surveys, the weakness of the corroborating evidence suggests that physicians’ assessments of the impact of malpractice exposure on their practices are unreliable. Thus, there is little compelling evidence that tort reforms improve patients’ access to health care.

Other Effects of Damages Caps: Health Spending In theory, tort reforms could also improve patients’ access to medical services by making health care less expensive. When damages caps reduce malpractice payouts, they will, over time, also reduce

malpractice insurance premiums. They may also reduce health care costs (if one assumes that insurance markets and health care markets are reasonably competitive). The direct effect on health care spending is likely to be small, however, because liability insurance accounts for less than 2% of total health care spending. Even reducing malpractice payouts to zero would leave aggregate health care spending largely unchanged. Tort reform advocates contend that lawsuit restrictions will reduce medical spending by amounts that greatly exceed the cost of insurance because they will free providers from having to practice defensive medicine. Although definitions of defensive medicine vary, many physicians claim to order unnecessary tests and to overtreat patients in other ways for fear of incurring lawsuits. The true cost of defensive medicine is hard to quantify, and estimates vary widely. Tort reform advocates assert that the cost savings from eliminating defensive medicine range from $100 billion to $300 billion per year. Most researchers estimate much smaller effects. For example, one recent study estimated a total cost of $55.6 billion (Mello et al., 2010). Perhaps due to this mixed evidence, the Congressional Budget Office estimated in 2009 that a damages cap applied nationwide would reduce annual health care spending by only $5.5 billion (0.2% of health care spending) (CBO, 2009). We are currently analyzing the relationship between claim rates, tort reform, and health care

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spending in Texas. Our results indicate that neither claim rates nor malpractice payouts significantly affect overall health care spending (Paik, 2012). Our findings are consistent with other researchers who find that tort reform has a small effect on total costs (Sloan & Shadle, 2009).

M I S M AT C H If justice is our goal, there is a profound mismatch between the medical malpractice system’s shortcomings and the most popular solution (damages caps). One can tell a similar story about most of the other popular reforms; most target payouts or claim frequency rather than patient safety and dysfunctions in the market for liability insurance coverage. More importantly, none of the proposed reforms is likely to correct any of the profound problems of cost, quality, and access that beset the U.S. health care system. To put the matter bluntly, eliminating the malpractice system outright will not make a dent in those problems—so we should not expect “tweaking” the malpractice system with tort reform to make a real difference. What might make a dent in these problems? There is no one magic solution to the problems that beset the health care delivery system and the medical malpractice system. But we offer a halfdozen strategies that should collectively make a substantial difference. Some will have an impact by making malpractice litigation less common, because patients who are not negligently injured have no need to file a lawsuit. Others will actually increase the frequency of claiming, in order to ensure compensation and deterrence. Strengthen Market Forces When markets work well, economic forces discourage service providers from harming their customers (whether negligently or not). Happy customers are sources of repeat business and referrals. The strength of the economic pressure permits the legal system to play a subordinate role in quality improvement. In these settings, the legal system acts to ensure a degree of civility and respect, by sanding the roughest edges off disagreements that buyers and sellers cannot resolve by themselves. In the health care sector, market forces are greatly attenuated by, among other things, the prevalence of third-party payers, local monopolies, and asymmetrical information. Consequently, quality problems have persisted and the liability system has had to shoulder a heavy burden. Unfortunately, it is difficult for the legal system to

generate the necessary pressure for quality improvement. The first prescription for improving health care quality should be to increase the strength of market forces. The highest priority should be given to arrangements that enhance providers’ incentives by tying their compensation to measurable improvements in outcomes and that enable patients to effectively distinguish between superior and inferior providers. To restore the liability system to its proper and limited role, we should place more emphasis on contracts between payers, patients, and providers. A good dose of first-party payment arrangements will help as well. There is evidence that providers improve when payers tie compensation to results or quality targets, or even merely require quantification and reporting. Success rates for assisted reproduction technologies are carefully tracked and have increased year after year (Centers for Disease Control and Prevention, 2009). Because fertility clinics compete for clients, many of whom are well informed and pay for services directly, they have strong incentives to do well (as well as to game the reporting system). The promulgation of basic quality measures and reporting requirements by the Joint Commission, which Medicare subsequently endorsed, expanded, and backed with mild penalties, caused hospitals’ compliance with evidence-based treatment guidelines to skyrocket (Chassin, 2010).

Allow Malpractice Premiums to Rise High insurance premiums create a visible and highly salient incentive for providers to improve the quality of the services they are offering. Tort reforms diminish or eliminate this incentive by artificially capping malpractice premiums. Allowing malpractice premiums to rise, instead of taking steps to artificially cap them, harnesses the self-interest of providers and increases the probability that patients will receive error-free care. Anesthesia provides a useful case study confirming the basic dynamic. Today, anesthesia is the safest part of many surgical procedures, but it once exposed patients to serious risks. Credit for the improvement belongs to the leaders of the American Society of Anesthesiologists (ASA), who initiated an ambitious patient safety initiative. Although studies had found that most anesthesia mishaps were preventable, anesthesiologists had done little to reduce the frequency or severity of mistakes. Then, from 1983 to 1985, ASA organized a conference on patient safety, created the

Justice Has (Almost) Nothing to Do With It Anesthesia Patient Safety Foundation (APSF), and inaugurated a closed-claim study (Classen & Kilbridge, 2002). The closed-claim study identified major areas of malpractice losses and proposed strategies for injury prevention. For example, after ASA concluded that preventable respiratoryrelated events were “the single most important source of liability,” APSF researchers promulgated practice guidelines and helped manufacturers redesign the machines used to deliver anesthesia (Joshi, 2005). A 2005 article in the Wall Street Journal summarized the striking impact of these efforts: Today, anesthesia-related adverse events and emergencies are rare, and anesthesiologists’ malpractice insurance premiums are low. Anesthesiologists pay less for malpractice insurance today, in constant dollars, than they did 20 years ago. That’s mainly because some anesthesiologists chose a path many doctors in other specialties did not. Rather than pushing for laws that would protect them against patient lawsuits, these anesthesiologists focused on improving patient safety. Their theory: Less harm to patients would mean fewer lawsuits. (Hallinan, 2005)

A 2006 survey by the ASA of malpractice premiums similarly found “a marked reduction in average premiums” in real dollars by comparison to 1985 (Domino, 2006). Although not focused on anesthesiology, a recent study by RAND of hospital safety and malpractice claims at the county level in California found a strong association. “On average, a county that show[ed] a decrease of 10 adverse events in a given year would also see a decrease of 3.7 malpractice claims” (Greenberg et al., 2010). The ASA started taking patient safety seriously because rising insurance premiums and an unflattering 1982 TV documentary forced its hand (Hyman & Silver, 2005). In the words of the former head of the ASA, “[a]nesthesiology [malpractice] premiums were . . . among the very highest—in many areas, two to three times the average cost for all physicians. By the early 1980s, anesthesiologists recognized that something drastic had to be done if they were going to be able to continue to be insured” (Pierce, 1995). Another participant in the initiative wrote that it might never have gotten off the ground had there not been “a malpractice crisis that was markedly reducing the incomes of anesthesiologists” (Cooper, 2006).

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To summarize, malpractice premiums primarily reflect the cost of injuring patients. When injuring patients is expensive, providers will be motivated to develop strategies to avoid injuring patients.

Use Caps Strategically States with damages caps apply them to all providers, regardless of the effort providers have expended to improve the quality of the services they provide. A better strategy would be to use damages caps to encourage providers to improve the quality of care they provide. For example, one might reward providers who report errors (by capping damages against them) while punishing those who hide mistakes (by increasing damage awards by a multiplier). One could similarly reward providers who adhere to defined quality benchmarks or procedures when treating patients by capping damages or eliminating liability entirely (Avraham, 2009). Fix Under-claiming and Over-claiming As noted previously, the malpractice system is beset with both under-claiming and over-claiming, with under-claiming being the more serious problem. “[T]he best empirical evidence indicates that medical treatment is a widespread cause of avoidable serious injuries and deaths, that very few victims with an actionable injury bring claims, and that in response to those valid claims the system typically fails to compensate losses fully or, most commonly, fails to provide any compensation at all” (Saks, Strouse, & Schweitzer, 2005). What happens to uncompensated malpractice victims? The costs associated with their injuries do not disappear. Instead of being covered by providers’ liability policies, they are borne by patients, their relatives and friends, first-party insurers (especially health insurers, but also life and disability insurers), and public social welfare systems. When this issue was studied, researchers discovered that almost 96% of the costs of non-fatal injury “was borne by the injury victims themselves through first-party insurance or out of pocket or by taxpayers through some kind of social insurance” (Saks, Strouse, & Schweitzer, 2005, summarizing Hensler et al., 1991). This study did not involve medical malpractice, but the degree of cost externalization is likely similar. It is difficult for the tort system to send the appropriate signals when its inputs are so skewed (Bovbjerg, 1986). Unfortunately, under-claiming is difficult to fix, for several reasons. Most patients

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cannot easily tell whether their injuries were due to bad medical treatment or bad luck. Many negligent injuries are too small to justify the high cost to lawyers of malpractice litigation—particularly when first-party health care payers bear some of the patients’ medical costs. Finally, to obtain compensation on malpractice claims, patients must convince lawyers to represent them (Silver & Hyman, 2010). Because plaintiffs’ attorneys work on contingency and malpractice cases are expensive, most requests for representation are rejected. Empirical studies report that plaintiffs’ attorneys screen malpractice cases carefully and reject weak claims (Farber & White, 1991; Kritzer, 1997). One study found that only 1 in 30 calls to a law firm requesting representation led to a medical malpractice lawsuit, meaning that the lawyers rejected 97% of the inquiries (Huycke & Huycke, 1994). The prospects for increasing the claim rate are thus dim, unless persons other than patients can be persuaded to activate the legal and regulatory systems that pressure providers to perform better. Health care workers might do this. The literature on patient safety reports many instances in which health care workers told patients about malpractice, complained about dangerous providers internally, resigned in protest of administrators’ failure to act, or alerted state licensing boards. However, they have not been rewarded for blowing the whistle. To the contrary, they have often been ignored, criticized, or punished for bringing quality problems to light, and these responses have encouraged them to keep quiet (Hyman and Silver, 2012). We therefore propose that health care workers be rewarded for reporting problems to administrators or third-party quality monitors and protected from retaliation, as certain other whistleblowers are. Both the rewards and the reporting systems would have to be designed with care so as, for example, to route reports to administrators with both the power and the responsibility to act on them. The over-claiming problem is difficult to fix as well, but one promising avenue is to recognize evidence-based medicine as an absolute defense to liability. To the extent that physicians render care that meets consensus standards of quality, there is no reason to subject them to liability or to devote legal resources to such cases. Although there are obvious difficulties associated with the development of consensus standards, physicians who adhere to those standards should be immune from suit (Avraham, 2009).

Roll Back Past Tort Reforms As Professors Brennan and Mello aptly note, “tort reform aims to decrease the expected value of a case for plaintiff ’s attorneys, changing the calculus about when it is worthwhile to bring a claim” (Brennan & Mello, 2003). Stated differently, the effect of past tort reforms is to make malpractice less expensive for potential defendants (by reducing the frequency of lawsuits and the amounts that must be paid to resolve them), while doing little about the volatility of insurance premiums. Tort reform thus reduces the incentive for providers to invest in measures that protect patients from harm and exercise due care in their treatments. If we are going to have a tort system, we may as well use it to help address the problem of low-quality care. Repeal of past tort reforms is an obvious place to start. CONCLUSION Extraordinary attention has been lavished on the medical malpractice liability crisis (i.e., the sudden and dramatic increase in malpractice premiums), but the public debate has almost entirely ignored the dysfunctions of the medical malpractice system. To be sure, the debate over the malpractice liability crisis has proven to be a useful standin for a larger and more fundamental set of disputes. Thus, plaintiff ’s lawyers view malpractice reform as the stalking horse for a larger anticivil-justice agenda, with physicians acting as the cat’s paw for much less popular classes of defendants (e.g., drug and medical device companies, and other large manufacturers). Conversely, physicians and tort reform advocates view malpractice as a major driver of health care spending (because it encourages defensive medicine) and a major factor in patient access to medical care (because it influences whether physicians relocate, retire, or limit their practices). The larger politics of the debate are clear as well: Democrats oppose tort reform, while Republicans favor it. One need not pick sides in this debate (which has at various times been analogized to the Crimean War, the Balkans, and Vietnam) to conclude that malpractice litigation is slow, expensive, imprecise, and desperately in need of reform. But no matter how we “reform” the medical malpractice system, doing so will not fix the problems of our health care system. It does not follow that we should not take steps to improve the performance of the medical malpractice system, but we should be modest about the ability of malpractice to dramatically improve health care quality; with

Justice Has (Almost) Nothing to Do With It inputs as badly skewed as they are, it is striking that the malpractice system does as well as it does. We close with the title of our chapter. In 1932, Mae West made her film debut in “Night After Night.” In her very first scene, a hat-check girl exclaims, “Goodness, what beautiful diamonds.” West purrs in reply, “Goodness had nothing to do with it, dearie.” In like fashion, justice has had little to do with the current performance of the malpractice system—and nothing to do with most of the attempts to “reform” it.

Note 1. Physicians typically speak of “preventable” injury, while lawyers typically speak of “negligent” injury. The two are not identical, but we use them interchangeably in this chapter.

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Farber, H.S., & M.J. White (1991). Medical malpractice: an empirical examination of the litigation process. 22 Rand Journal of Economics 199. Greenberg, M.D., A.M. Haviland, J.S. Ashwood, & R. Main. (2010). Is Better Patient Safety Associated with Less Malpractice Activity? Evidence from California. Institute for Civil Justice, RAND. Hallinan, J.T. (June 21, 2005). One group of doctors changes its ways. Wall Street Journal. Hensler, D.R. et al. (1991). Compensation for Accidental Injuries in the United States. RAND Corporation. Huycke, L.I., & M.M. Huycke. (1994). Characteristics of potential plaintiffs in malpractice litigation. 120 Annals of Internal Medicine 792. Hyman, D.A., B. Black, K. Zeiler, C. Silver, & W.M. Sage. (2007). Do defendants pay what juries award? Post-verdict haircuts in Texas medical malpractice cases, 1988–2003. Journal of Empirical Legal Studies 4(1):3–68. Hyman, D.A., & C. Silver. (2005). The poor state of health care quality in the U.S.: is malpractice liability part of the problem or part of the solution? 95 Cornell L. Rev. 893. Hyman, D.A., & C. Silver. (2006). Medical malpractice litigation and tort reform: it’s the incentives, stupid. 59 Vand. L. Rev. 1085. Hyman, D.A., et al. (2009). Estimating the effect of damage caps in medical malpractice cases: evidence from Texas. 1 J. Legal Analysis 355. Hyman, D.A. and Silver, Charles (2012). Health Care Quality, Patient Safety and the Culture of Medicine: “Denial Ain’t Just a River in Egypt, 46 New England Law Review 417. Joshi, G.P. (2005). 10 things that changed anesthesiology. Available at http://www.asahq.org/KnowledgeBase/History-of-Anesthesia/ASA/10-Things-ThatChanged-Anesthesiology.aspx Kritzer, H.M. (1997). Contingency fee lawyers as gatekeepers in the civil justice system. 81 Judicature 22. Martin, E. (June 2004). Critical condition: doctors and lawyers maul each other over medical malpractice. Business North Carolina, available at #http://www. thefreelibrary.com/Critical+condition:+doctors+a nd+lawyers+maul+each+other+over+medical… -a0119108891 Mello, M.M., A. Chandra, A.A. Gawande, & D.M. Studdert. (2010). National costs of the medical liability system. Health Affairs 29(9):1569–1577. Mills, D.H. (1978). Medical insurance feasibility study. 360 Western Journal of Medicine. Paik, M.M., Black, B., Hyman, D.A., Silver, C., (2012). Will Tort Reform Bend the Cost Curve? Evidence from Texas, 9 Journal of Empirical Legal Studies 173.

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Pierce, E.C. Jr. (1995). The 34th Rovenstine Lecture: The Establishment of the APSF and the ASA Closed Claims Study. The Anesthesia Patient Safety Foundation. Available at http://www.apsf.org/ about/rovenstine/ Sage, W.M. (2004). Understanding the First Malpractice Crisis of the 21st Century, Health Law Handbook. Alice Gosfield, ed., West, 2003. Saks, M.J. (1992). Do we really know anything about the behavior of the tort litigation system—and why not? 140 U. PA L. Rev. 1147. Saks, M.J., D. Strouse, & N. Schweitzer. (2005). A multiattribute utility analysis of legal system responses to medical injuries. 54 DePaul L. Rev. 277. Silver, C., D. Hyman, & B. Black. (2008). The impact of the 2003 Texas medical malpractice damages cap on physician supply and insurer payouts: separating facts from rhetoric. 44 Texas Advocate 25–34. Silver, C., & D.A. Hyman. (2010). Access to justice in a world without lawyers: evidence from Texas bodily injury claims. 37 Fordham Urb. L. J. 357. Sloan, F. (1993). Policy Implications, in Suing for Medical Malpractice. Sloan, F., & C. Hsieh. (1995). Injury, liability, and the decision to file a medical malpractice claim. 29 L. & Soc. Rev. 413.

Sloan, F., & J.H. Shadle. (2009). Is there empirical evidence for “defensive medicine”: a reassessment. 28 Journal of Health Economics 481. Studdert, D.M., et al. (2000). Negligent care and malpractice claiming behavior in UT and Colorado. 38 Med. Care 250. Studdert, D.M., et al. (2004). Are damages caps regressive? A study of malpractice jury verdicts in California. 23 Health Affairs 54. Studdert, D.M., et al. (2006). Claims, Errors, and Compensation Payments in Medical Malpractice Litigation. 354 New England Journal of Medicine. 2024–2033 U.S. Department of Justice. (2001). Bureau of Justice Statistics, Medical Malpractice Trials and Verdicts in Large Counties. Available at http://www.ojp.usdoj. gov/bjs/abstract/mmtvlc01.pdf. Weiler, P.C., et al. (1993). A Measure of Malpractice 62 Harvard University Press; (January 1, 1993) Zeiler, K., C. Silver, B. Black, D.A. Hyman, & W.M. Sage. (2007). Physicians’ insurance limits and malpractice payments: evidence from Texas closed claims, 1990–2003. Journal of Legal Studies 36.

INDEX

Note: Page numbers followed by “f ”, “t ”, or “n” refer to figures, tables, or notes, respectively. abortion, 285, 370 access, 5–7, 488 health despite, 187–88 for immigrants, 127–28 to mental health care, 406–7 right to, 99, 101 universality of, 20–21, 29, 35, 39, 44n3, 131–32, 136, 139, 152n2 accountability, 7 for reasonableness, 17, 24, 28–30, 139, 221, 452 Acheson Report, 74, 76 ACMG. See American College of Medical Genetics acupuncture, 415, 421, 425n19 acute care/illness, 132, 300, 304–5, 315. See also emergency care chronic illness and disabilities compared to, 306–10 in organ transplantation, 506, 511, 519n2 acute liver failure (ALF), 511, 517 addictions, 185, 199n54, 199n59, 199n62, 405–6. See also alcohol; drugs; tobacco freedom and, 188–90, 199n48 as mental illness, 191–92 theories of, 190–91 trust and, 194–95 Ulysses and, 193–94, 199n64 adjusted average per-capita cost (APCC), 112 affective disorders, 186–87 Affordable Care Act, 107, 110, 114, 119, 195–96. See also health care debate individual mandate of, 396–97 preexisting conditions and, 387–88, 396 for universal coverage, 397 African Americans, 267, 382 compromised neonates of, 10, 348–49 obesity of, 273–76 African American distrust, 9, 207–8, 270, 271–73 Tuskegee study and, 8, 268–70, 445 AFRP. See Anti-Free-Riding Principle age, 9, 30n4, 466. See also children; elderly; newborns age biases, 336, 340 age rationing, 361n10 arguments over, 357–60 impartial rational choice and, 358–59

Medicaid and, 355–56, 361 Medicare and, 355–56, 359, 361 outcome benefits and, 357–58 prudential lifespan for, 358–59, 362n13 age/sex-specific mortality rate, 187 agent-relative obligations, 222–23 aggregation, 57n36, 79, 88n3 in treatment discontinuation, 170 utilitarianism and, 52–53 AIDS. See HIV/AIDS Ainslie, G., 189–90 alcohol, 191, 511 disability from, 179–80 drugs compared to, 183 taxes on, 183, 198n30 ALF. See acute liver failure allocation, 6, 65–67, 66t, 506f. See also organ allocation competition over, 59 in pandemics, 525 random, 49–50, 57n22 resource, 479–81, 496–99 alternative medicine. See complementary and alternative medicine AMA. See American Medical Association American Academy of Pediatrics, 479 American College of Medical Genetics (ACMG), 477 American Medical Association (AMA), 182, 283, 290, 296, 536–37 American Psychological Association (APA), 289, 291 Americans with Disabilities Act, 30n2, 247, 302 Anderson, E., 450 Aneshensel, C., 439 anesthesia, 536–37 Angell, M., 204, 216n10 animals, 268, 313, 500n7. See also severe cognitive disabilities addictions and, 192 cognitive disabilities related to, 326, 329–30, 332, 332n5, 332n7 Anti-Free-Riding Principle (AFRP), 36–39, 44n7, 44n9. See also Equal Opportunity for Welfare; Just Sharing Antommaria, A., 525 anxiety, 77

544

Index

APA. See American Psychological Association APCC. See adjusted average per-capita cost appeals condition, 26, 28 Appleby, J., 202, 206, 215n7 Aquinas, T., 365 arch-libertarians, 41 Aristotle, 1, 3, 60, 126, 201, 209, 268, 389 Arneson, R., 45n12 aromatherapy, 421 asthma, 421 autonomy, 306–8, 508 Baily, M. A., 479 Balanced Budget Act (1997) (1999), 111–13 basal cell carcinomas, 392 Baucus, M., 209–10 Beauchamp, T. L., 122, 234, 397, 448 Beaumont, J. G., 489–90 Becker, G., 189–90 Becker, L., 317 beliefs, 19, 124–25. See also expectations; religion about obligations, 92–93 prayer, 421, 425n22 for science in medicine, 414–15, 428n48 beneficence, 180–81, 235 benefits, 158, 163 age rationing and, 357–58 cost-benefit analysis, 139n4 global health, 234–38 harms and, 420, 430n56, 430nn62–65 maximization of, 47–48 risk-benefit ratio, 447 as welfare increase, 48, 56n5 Benitez, G., 295 Benitez v. North Coast, 295 Bentham, J., 52, 60, 500n6 best interests, 10, 271, 273, 350 of incompetent people, 340–41 Betancourt, R., 497–99 bevacizumab, 462–63, 470–71, 472n9 biological essentialism, 492, 494–95 Bipartisan Campaign Reform Act of 2002, 218n39 Blackmun, H., 373 Black Report, 72, 74 BMI. See Body Mass Index Bobbitt, P., 80, 88n2 Body Mass Index (BMI), 274 brain, consciousness and, 425n22 brain cancer, 138 brain-dead patients, 13, 486, 499n2, 505 efficacy and, 495–96 reasonable accommodation and, 494–96 VS compared to, 485, 496 Braus, P., 284 breach, 531 breast cancer, 282, 421, 470 genetic testing and, 462–63 Brennan, Justice, 212 Brighouse, H., 328

Brock, D., 30n2, 62, 88n2, 185, 452 Brody, B. A., 485, 499n1 Buchanan, A., 185, 239 Buckley v. Valeo, 212, 218n34 Bunch, C., 284 Bush, G. W., 396, 527 Calabresi, G., 80, 88n2 California, 197n8 rule of rescue for, 179, 182, 195, 197n6 Callahan, D., 30n4, 357, 463–64 CAM. See complementary and alternative medicine CAM and health plans, 413, 430n55 balanced approach to, 422–23 benefits and harms in, 420, 430n56, 430nn62–65 cost and coverage in, 420–23 cost containment for, 423 Canada, 44n2, 108, 127, 152n4, 152n8, 529n14 cancer, 138–39, 304, 392, 456, 468 breast, 282, 421, 462–63, 470 colorectal, 463, 473n19 end-stage, 462, 470–71, 472nn6–7 cancer drugs, 463, 473n19 cost and life expectancy with, 462–64, 467, 469–71, 472n7, 492n7 cost and QALYs for, 462–63, 467, 469–70, 472n7, 472n10 cancer treatment, 468, 471, 472n2, 472n5 costs of, 461–63, 465–66, 469–70, 472nn6–8 of paclitaxel plus bevacizumab, 462–63, 470, 472n9 Caney, S., 241 capabilities, 20, 23, 31n5, 48 for health care finance justice, 126–27 Pogge on, 449–50 Sen on, 126–27, 318, 449 Caplan, A., 509 CAPTA. See Child Abuse Prevention and Treatment Act caregivers, 286, 320–21, 323n13. See also family caregiving Carlson, L., 307 Carter, J., 233 Casas-Zamora, J. A., 231 case law, 3, 26. See also medical malpractice and tort reform; specific cases CaSE model of causation, 390–92, 398n2 CaSE study of “genetic disease,” 395, 398n4 gene environment in, 392–94, 397 variability in, 392–94 catastrophic events, 11–13 causation, 390, 398n2 environment and, 392–94, 397 situation in, 391–92, 398n3 CDC. See Centers for Disease Control CEA. See cost-effectiveness analysis Center for Medicare and Medicaid Services (CMS), 111 Centers for Disease Control (CDC), 65, 191–92, 524, 532 CER. See comparative effectiveness research cetuximab (Erbitux), 463, 473n19 Chakraborti, C., 527

Index charity, 124, 259, 262, 263n36, 294 Child Abuse Prevention and Treatment Act (CAPTA), 350–51 Child-Push Turcotte (CPT), 510, 510t children, 10, 115, 304, 340–44, 378, 430n63, 525. See also newborns; severe cognitive disabilities; uninsured children disabilities in, 326–27, 351, 438–39, 442n7 family caregiving for, 438–39, 442n7 without insurance, 335, 337–39, 403 obesity in, 273–74 oral health of, 402–3, 409n1 in poverty, 255–56 practical identities in, 436–37 Children’s Defense Fund, 335 children’s health care, 335 adult care compared to, 336–37, 341–44 best-interests standard for, 340–41 empathy and sympathy for, 337–39 equality of opportunity in, 339–40 children’s health care research adults compared to, 341–44 consent in, 341–43 minimal risk in, 342–44 Children’s Health Insurance Program. See State Children’s Health Insurance Plan Childress, J., 122, 234, 397, 448 China, 517 Chinese medicine, 414, 421, 425n19 CHIP. See State Children’s Health Insurance Plan Chisholm-Burns, M. A., 279 choices, 4, 7–8, 41, 190–91, 381 clozapine and, 171–72, 171f–172f control in, 185–86, 198n38 impartial rational, 358–59 in multi-payer insurance, 35, 44n2 of physicians, 294–97 of soldiers, 369–70 tragic, 6, 62, 79 cholera, 523 chronic illness and disabilities, 9, 299. See also cognitive disabilities acute illness compared to, 306–10 autonomy and contractual model in, 307–8 autonomy and medical model in, 306–7 death and, 302 dependence and freedom model in, 308–9, 311n29 distinctions between, 302–4 functioning in, 302–4 HCR-ECCI for, 304–9, 311n29 misleading models in, 304–5 prevalence of, 300–301 saving lives and continuity of care in, 305–6 social justice challenge for, 309–10 social model of, 306–7 Citizens United v. Federal Election Commission, 201, 208, 211, 213–15, 218n39 Civil Rights Act (1964), 207–8 Clinton, B., 205, 262n13

545

Clinton, H., 207, 276 clozapine, 165–68, 171–77, 171f–176f, 177n4 CMS. See Center for Medicare and Medicaid Services coercion, 35, 37–38, 42, 500n11 cognitive disabilities, 9–10, 307, 331, 332n6. See also severe cognitive disabilities animals related to, 326, 329–30, 332, 332n5, 332n7 facilitated communications and, 332 moral status and, 328–30 Cohen, G. A., 45n12, 48 Cohen, J., 100–101 Coleman, M. R., 488 colorectal cancer, 463, 473n19 coma, 486–87 Committee on Economic, Social and Cultural Rights General Comment No. 14, 102, 233–34, 239, 248 comparative effectiveness research (CER), 136–37 compensation in medical malpractice and tort reform, 532–34, 533t, 535t, 538–40 in pandemics, 525–27 compensatory justice, 1 competence, 184–86, 507 competition, 36, 59 complaint account, 84–88 complementary and alternative medicine (CAM), 12, 423n1, 424n7, 430n56, 430n63. See also CAM and health plans; science in medicine different perspectives of, 414–15, 424n12, 424n14, 424n16, 425n17 research on, 424n16, 425nn18–19, 425n22, 426n33, 430n64 science and, 413, 415, 424n9, 424n12, 425nn18–19 scorn for, 419, 424n9, 430n55 spending on, 413, 420, 430n62 compliance, 8, 77, 182, 269, 356–57 Payton against, 179–80 respect related to, 183–84 compromised neonates of African Americans, 10, 348–49 complex defects in, 351–53 family burden related to, 350, 352 resuscitation aggressiveness for, 349–50, 352–53 survivability of, 347–49 conflicts, 3–4 Congress, U.S. See specific laws consciousness, 425n22 in VS, 487–88, 500n5 consent, 37, 380, 505 in children’s health care research, 341–43 informed, 192, 292, 343, 379, 445–47, 455–57, 478, 535t Presumed Prior, 131, 134, 140n8 as respect, 180 sexual orientation and, 291–92 consequentialism, 358, 362n11, 363 conservatives, 40, 44n11, 123–25. See also Republicans conservators, 179–80, 197n8, 307. See also surrogates

546

Index

Constitution, 214. See also Affordable Care Act; specific amendments individual mandate and, 129–30 WHO, 91, 231–32 constitutional democracies, 103–4 context, 81 of justice, 64–65 morality related to, 79–80, 88n2 contracts, 188, 197n7, 370n3 contractual model, 307–8 social, 122, 127, 363 Ulysses, 194–95 contractarian constructivists, 69n4 contractualism, 315–18 control, 74, 151–52, 397, 414 addictions and, 191–92, 194 CDC, 65, 191–92, 524, 532 in choice, 185–86, 198n38 of guns, 216n16, 218n37 health security and, 75–76 RCT, 415, 420, 425n18, 453 responsibility and, 184 vulnerability and, 75–76 Convention on the Rights of People with Disabilities (CRPD), 7, 302, 305 medical model and, 245–47 medical training in, 249–50 social model and, 245–47 copper bracelets, 426n33 corporate freedom of speech, 211, 214–15, 217nn26–28. See also specific court cases political campaigns and, 212–13, 218n39 corporations, 197n10, 208, 217n23, 263 health care debate and, 206–7 individuals compared to, 213–14, 217n27, 218n33 costs, 112, 259–61, 404, 417, 426n33, 433, 498 in CAM and health plans, 420–23 of cancer treatment, 461–67, 469–71, 472n10, 472nn6–8, 492n7 of compromised neonates, 348–49 of genetic testing, 461, 471 opportunity, 149, 220, 226, 228 of VS care, 489–90 Costa Rica, 21 cost-effectiveness, 133, 139nn4–5, 140n12, 165, 221, 224–25 of children’s health care, 340 of health care basic minimum, 135–37 of prevention, 187 in prioritarianism, 155 in rationing, 149 of universal coverage, 261 waste and, 150–51, 153n28, 153n30 cost-effectiveness analysis (CEA), 137 cost-sharing, 132–33, 139n3 cost-shifting, 44n9, 195 EMTALA and, 36–37, 39, 45n13 costworthiness, 133

Council of Europe, 91 CPT. See Child-Push Turcotte Cranor, Carl, 398n4 criminals, 198n38. See also prisons CRPD. See Convention on the Rights of People with Disabilities Cuba, 21 DALYs. See disability-adjusted life years damages, 531–32 Daniels, N., 63, 128, 139, 339, 362n13, 440, 449, 452 for age rationing, 358–59 egalitarianism and, 42–43 fair equality of opportunity and, 61–62, 122–23 Danzon, M., 136 Davidson, D., 189 Davis, W., 304 DBS. See residual dried bloodspots deaths, 66, 66t, 187, 302, 356, 419, 486, 505, 519n1, 532. See also brain-dead patients; suicides authority on, 494–95, 497–98 oral health related to, 407–8 prison health care and, 374, 380–81 research and, 451, 455 from tobacco, 191–92 DeCamp, M., 239 decisions, 4–5, 88n2, 102, 280 de Craen, A. J. M., 425n17 dementia, 499n3 Democratic Party, 109–10, 118, 207, 210. See also Obama, B. Denmark, 71 deontic egalitarianism, 157 deontological constraints, 53–56 dependence, 9–10, 286–87, 466 freedom model and, 308–9, 311n29 SCD and, 319, 321, 323n12 depression, 186–87 DeVille, K., 273 devotion, 188–89 diabetes, 45n12 diagnoses, 280, 488–89, 498–99 dialysis, 472n10, 497–98, 500n10 difference principle, 23, 61, 67, 155, 159 disabilities, 19, 30n2, 48, 56n7, 318, 371n17, 466. See also chronic illness and disabilities; cognitive disabilities; severe cognitive disabilities from alcohol, 179–80 in children, 326–27, 351, 438–39, 442n7 CRPD, 7, 245–47, 249–50, 302, 305 HIV/AIDS and, 247–48 social model of, 245–47 disability-adjusted life expectations (DALEs), 60 disability-adjusted life years (DALYs), 60, 246–47, 404 disabled persons organizations (DPOs), 245–46 disasters, 66, 66t. See also 9/11; pandemics discrimination, 12, 290, 295–97, 396–97. See also African Americans; race sickle cell trait and, 390, 393, 398n1

Index diseases, 88n1, 182–84, 240, 523. See also CaSE study of “genetic disease”; specific diseases infectious, 290, 523, 528, 529n12 distribution, 57n39, 88n2, 168, 181–82. See also just distribution; specific topics equality of, 318–19, 323nn10–11 resource, 62–63, 223, 493–94 distributive justice, 1–3, 7, 12, 17, 24, 201–2, 485. See also Equal Opportunity for Welfare distributive politics, 112–13 diversity, 108, 284–85, 301 The Doctor’s Dilemma (Shaw), 77 DPOs. See disabled persons organizations Dresser, R., 452 Driver, J., 269 drugs, 117, 183, 421, 451, 457, 466. See also cancer drugs; medicine Druss, B. G., 407 duty, 197n3, 320, 322, 323n4, 531. See also obligations Dworkin, R., 48–49, 85, 139n6, 201–2, 485 Early and Periodic Screening, Diagnosis and Treatment (EPSDT), 115 earthquakes, 528 Eastwood, C., 124 echinacea, 421 economics, 110–14, 202–3, 205–6, 257, 263n16. See also health care finance justice; poverty; socioeconomics General Comment on, 102, 233–34, 239, 248 OECD, 71, 145–46, 146f, 152n9, 152nn15–16 education, 21–22, 249–50, 281 for parents, 475, 478–79, 481 Edwards, J., 323n4 effectiveness, 136–37, 140n11, 173, 198n28, 220, 226, 441. See also cost-effectiveness of Oxfordshire PCT, 227–28 efficacy, 7, 495–96, 516 in organ transplantation, 511, 513–14 Schiavo and, 493–94, 497, 500n9 efficiency, 39, 44n9, 256, 340 of health insurance, 19, 30n3, 40, 44n11 justice and, 261–62 MELD against, 515–16 egalitarianism, 35, 49–50, 57n39, 157, 357, 448–49 of Harris, 467–68 Karlovian Transplant Case and, 53–55, 57n39 luck, 20, 29, 45n12, 450 medical, 42–43, 131 resource, 47–48, 56n14 utilitarianism and, 4, 47, 50, 55–56, 469 welfare, 47–48, 53, 57n38 Eighth Amendment, 377–78 Eisenberg, D. M., 413, 428n44 elderly, 29, 114–15, 272, 403 gender and, 286–87 Elderly Pharmaceutical Insurance Coverage (EPIC), 117 Emanuel, E., 446, 448 emergency care, 36–37, 39–40, 44n9, 59

547

California’s rule of rescue for, 179, 182, 195, 197n6 fair equality of opportunity and, 62–63, 69n20 Emergency Medical Treatment and Active Labor Act (EMTALA), 40, 44n5, 44n9, 132, 195 cost-shifting and, 36–37, 39, 45n13 empathy, 320, 337–39 EMTALA. See Emergency Medical Treatment and Active Labor Act end-of-life care, 10, 137–39 end of life decisions, 280 enforcement condition, 26, 28 Engelhardt, T., 124–25, 349 environment, 240–41, 392–94, 397 EOW. See Equal Opportunity for Welfare EPIC. See Elderly Pharmaceutical Insurance Coverage epidemics, 336. See also pandemics EPSDT. See Early and Periodic Screening, Diagnosis and Treatment Epstein, R., 258–62, 263n26, 263n32, 263n36 EQ-5D instrument, 72, 77 equality, 49–50, 60, 63, 122, 237–38. See also fair equality of opportunity; inequality of distribution, 318–19, 323nn10–11 of opportunity, 157–58, 249, 339–40 in outcomes, 156–57, 220–21 Equal Opportunity for Welfare (EOW), 36, 41–43, 45nn12–13, 131–32 equity, 35, 41, 44n3, 221, 225, 405–6 for organ transplantation, 509–11, 510t Estelle v. Gamble, 378 ethics, 6, 227, 265, 294–97, 416–17. See also morality; specific publications; specific topics basic needs and, 405–6, 409nn3–4 bioethics, 300–301, 304–5, 519n4 ethical principles, 220–23 ethical relativism, 271 evaluative impairment, 186–87 Evans, C., 409n1 evidence-based medicine. See science in medicine expectations, 60, 95, 166, 360, 428n48, 530n26. See also life expectancy in prioritarianism, 161–62 of soldiers, 370 extra-arm case, 170f, 171–72, 177n3 fair equality of opportunity, 18–20, 29, 61, 64, 122–23, 466 emergency care and, 62–63, 69n20 limited political effectiveness of, 441 fairness, 37, 44n7, 268–70, 389–90. See also health care fair limitations in organ transplantation, 514–15 as random allocation, 50, 57n22 fair process, 149–50, 153nn24–26, 221 families, 302, 350, 352, 435, 442nn2–3 for authority on death, 494–95, 497–98 dependence on, 308–9, 311n29 parents, 341, 373, 475, 478–79, 481 threats to, 436–37 Family and Medical Leave Act of 1993, 439

548

Index

family caregiving, 12, 442n6, 442n9 for disabled children, 438–39, 442n7 examples of, 437–39 gender and, 286, 438, 441n1 practical identities in, 436–38 right to, 439–41 social construction of, 437–39 trend for, 433–35 Farmer v. Brennan, 373 FDA. See Food and Drug Administration Feinberg, J., 376 feminism, 202, 209 feminists, 357. See also gender justice Fifth Amendment, 217n26 First Amendment, 210, 212, 213, 218n30, 218n34 First National Bank of Boston v. Bellotti, 212–15, 218n35 first-order determinations, 88n2 Fisher, W. W., 528 Fleck, L. M., 139n2, 140n13 Fleurbaey, M., 328 flu vaccine shortage. See pandemics fMRI. See functional neuroimaging focal incompetence, 184–86 Fojo, T., 138, 472n7 Food and Drug Administration (FDA), 418, 451, 457 Fourteenth Amendment, 211–12, 217nn25–27, 218n30 France, 71, 139n3 Francis, L., 307, 316–17, 323n6, 323n8, 331 Frankena, W., 234 freedom, 20, 189, 441. See also Anti-Free-Riding Principle; corporate freedom of speech addictions as loss of, 188–90, 199n48 of speech, 218n37, 295 freedom model, 308–9, 311n29 free-riding and insurance, 134, 136 AFRP, 36–39, 44n7, 44n9 emergency care in, 39–40 rejecters in, 38–39, 44n8 Fried, C., 84 functional neuroimaging (fMRI), 488 funding, 336, 413, 452–54, 472n13 IFR, 6, 220, 227–28 for NBS, 476–77, 480 futility, 497–98, 500n10

gender justice, 279–87 General Comment. See Committee on Economic, Social and Cultural Rights General Comment No. 14 Genetic Information Nondiscrimination Act of 2008 (GINA), 12, 396–97 genetic testing, 13, 388–90. See also CaSE study of “genetic disease”; newborn bloodspot screening breast cancer survival and, 462–63 practicality of, 461, 471, 472n2 genotypes, 462–71 Germany, 35, 44n2, 44n8, 108, 152n3 Giacino, J. T., 489–90 Gillings, P., 388 GINA. See Genetic Information Nondiscrimination Act of 2008 global competence, 184–85 global perspective, 7 glucosamine, 421 Goldhill, D., 44n11 goods, 144, 152nn6–7, 159–60, 259, 357 appreciation of, 508 bads and, 375 primary, 18–19, 61, 256, 258, 265–66, 318, 323n9, 440–41 public, 37, 44n6, 66–67, 66t, 258, 263n27 Gornick, M. E., 272 Gostin, L., 528 Grady, C., 138, 472n7 Graunt, J., 389 Green, R., 63 Grimes v. Kennedy Krieger Institute, 342–43 Groce, N. E., 248 Gross, M., 366–68 gross domestic product (GDP), 21 health expenditure and, 71, 143–50, 145f, 152n9, 153nn17–18, 153n29 rationing and, 146–50, 146f, 153n29 reverse engineering and, 143–48, 145f, 152n9, 153n29 growth hormone treatment, 26–27 guardianship, 185. See also surrogates Guidelines for Determining Brain Death, 486 gun control, 216n16, 218n37 Gutman, A., 31n7

galactosemia, 465 Garas, I., 417 Gaucher’s disease, 466 Gautier, D., 315–16 gay people. See sexual orientation GDP. See gross domestic product GDPpc. See per capita gross domestic product Gellins, A. C., 427n42 gender, 9, 187, 281, 289, 405. See also sexual orientation; women elderly and, 286–87 family caregiving and, 286, 438, 441n1 in physician-patient relationship, 279–80 recognition deficits and, 207–8

H1N1. See swine flu Hacker, A., 270 Hall, M., 139n6, 140n8 Hall-Lipsy, E. A., 279 happiness, 19 Harris, J., 463, 467–68 Harrison, M., 282 Hastings Center Report Special Supplement on Ethical Challenges of Chronic Illness (HCR-ECCI), 304–9, 311n29 Hayek, F. A., 196 HCC. See hepatocellular carcinoma HCR-ECCI. See Hastings Center Report Special Supplement on Ethical Challenges of Chronic Illness

Index health, 2, 7, 18–20, 29, 74–75. See also specific topics inequality and, 22, 107 non-medical determinants for, 72–73 patient responsibility for, 182 in poverty, 255–57 socioeconomics related to, 17, 21 health care, 3–4, 17–18, 94, 202–4, 206, 258, 263n29. See also specific topics affective disorders and, 186–87 basic needs of, 405–6, 409nn3–4 costs of, 123–25, 259–61 decent minimum for, 397 de facto inequalities in, 76 deprofessionalization of, 433–34 health apart from, 72, 74–75 human right of, 91, 93, 98–99, 101–3 immigrants and, 127–28 justice and, 257–61 health care basic minimum, 6, 136–40, 140n10, 397 cost-sharing in, 132–33, 139n3 prioritizing for, 133–35 prologue on, 131–33 health care debate (2009–2010) macro-political dynamics of, 208–11 Medicare expansion and, 204–8 polls in, 205, 215n9, 216n14 health care fair limitations, 23–25, 31n6 accountability in, 28–29 in growth hormone treatment, 26–27 relevance condition and, 26–28 universal coverage and, 29–30 health care finance justice, 124, 128–30, 201–4 capabilities for, 126–27 non-Rawlsian approaches to, 125–27 Rawlsian approach to, 122–23 health care reform, 335–36, 356, 433–34, 472n13. See also children’s health care; medical malpractice and tort reform; specific legislation health care systems, 2, 28, 35, 43n1, 72–73, 143, 152nn3–4, 208 offense from, 124–25 socialized medicine, 204, 216n10 for women, 281–82 health expenditure, 146f, 152n9, 152n16, 152nn6–7. See also rationing; specific topics GDP and, 71, 143–50, 145f, 152n9, 153nn17–18, 153n29 medical necessity and, 144–45, 147–48, 152n8, 152n10 waste in, 150–51, 153n28, 153n30 health security, 74, 78 control and, 75–76 resilience and, 76–77 Healthy People 2010, 402 Healthy People 2020, 402 heart disease, 280, 282 NBS and, 480–81 hemochromatosis, 393 hepatocellular carcinoma (HCC), 505, 515

herbs, 421 here-and-now, 88n2 Herodicus, 182 Hess, K., 274 high-risk areas, 263n29 hip fractures, 428n49 Hippocrates, 63, 93–94, 167 Hirsch, B., 472n2 Hirschsprung’s disease, 392 HIV/AIDS, 451, 457n3, 466, 528, 530n37 disabilities and, 247–48 sexual orientation and, 289, 294 homeopathics, 414–15, 425n18 Homer, 193–95, 199n64 homosexuality, 289–92 honest holdouts, 37–38, 40, 42 Hrdy, S., 313, 319, 323n13 Hsieh, C., 533 Human Genome Project, 388 human rights, 29, 240, 246 correlative human duties and, 234–35 culture and, 101–2 of health, 98–99, 101–2, 231–34 of health care, 91, 93, 98–99, 101–3 moral rights and, 97–98, 100 obligations or, 99–100 political institutions and, 101–4 UDHR, 72, 97–98, 101, 232–34, 236–39, 305 human subjects, 12–13, 349, 445, 453 children as, 341–44 justice frameworks on, 446–48 obligations of, 456–57 respect for, 447–48 Hume, D., 337–38 Hunt, P., 233, 240 Hurricane Katrina, 4–5, 12, 65 Huygens, C., 389 Hyde, H., 285 IAEA. See International Atomic Energy Agency ICER. See incremental cost-effectiveness ratio ICESCR. See International Covenant on Economic, Social and Cultural Rights ICU. See intensive care unit ideal theory, 8 identities, 291. See also genetic testing personal, 161, 189–90 practical, 436–38, 440–41 worse off, 159–62 IFR. See Individual Funding Request imiglucerase, 466 immigrants, 127–28, 210 imminence of harm, 81–83 income inequality, 19, 22–23, 75–76, 257 children’s health care related to, 339–40 incremental cost-effectiveness ratio (ICER), 224 independent review, 446–48, 455–56 India, 21 indispensability arguments, 235–37

549

550

Index

individuals, 7, 202–3, 205 corporations compared to, 213–14, 217n27, 218n33 Individual Funding Request (IFR), 6 in NHS, 220, 227–28 individualistic conception of justice, 2 individual mandate, 128–30, 396–97 Indonesia, 527–28 inequality, 22–23, 61, 76, 107. See also income inequality of mental health care, 404–5 of oral health care, 401–4 infectious diseases, 290, 528, 529n12 U.S. Surgeon General on, 523 Inheriting the Revolution: The First Generation of Americans (Appleby), 202, 215n7 Institute of Medicine (IOM), 240, 279, 456 institutional review boards (IRBs), 446–48, 455–56 insurance, health, 5–6, 127, 216n10, 217n27, 263n15. See also free-riding and insurance; preexisting conditions affordability of, 42–43 children without, 335, 337–39, 403 efficiency of, 19, 30n3, 40, 44n11 fair income shares and, 19 genetic testing and, 389–90 individual mandate for, 128–30 justice and, 395–96 mandatory, 36, 40, 42, 44n11 mathematical probability for, 389, 395 for mental health, 12 multi-payer, 35, 44n2 national, 107–10, 119n3 PCIP, 387 profits and risk in, 36 purpose of, 388–89 race and, 261 responsibility for, 195–96 SCHIP, 114, 116, 338–39, 403 sexual orientation and, 293, 298n27 single-payer, 35, 44n2, 205, 216n17, 218n51 special risk, 258–59, 263n29 taxes and, 140n10 insurance effect, 138 libertarians and, 133–34, 139n6 intensive care unit (ICU), 490, 498 International Atomic Energy Agency (IAEA), 231 international Covenant on Economic, Social and Cultural Rights (ICESCR), 98, 233–34, 238–39 international treaties and declarations Declaration of Helsinki, 445 General Comment, 102, 233–34, 239, 248 ICESCR, 98, 233–34, 238–39 UDHR, 72, 97–98, 101, 232–34, 236–39, 305 UN Charter, 232 WHO Constitution, 91, 231–32 Interstellar Transplant Machine, 54–56, 57nn41–42 IOM. See Institute of Medicine Iraq, 21 IRBs. See institutional review boards

Japan, 525, 528 compromised neonates of, 348 Jecker, N. S., 500n10 Jehovah’s Witness, 180 Johnson, K., 281–82 Johnson, L. B., 203, 207–8 Jonsen, A. R., 500n10 Joseph Burstyn, Inc. v. Wilson, 218n30 just distribution of burdens, 241 of global health benefits, 234–38 indispensability arguments for, 235 of responsibility, 181–82 justice, 2–3, 265–66. See also distributive justice; specific topics challenges for prevailing conceptions of, 63–64 consensus related to, 65–66, 66t context of, 64–65 efficiency and, 261–62 in medicine and public health allocations, 65–67, 66t moral community and, 490–91 principles related to, 64, 67, 69n27 procedural, 1, 25, 30, 153n25, 451 prominent conceptions of, 60–62 rational democratic deliberation and, 468–71 theories of, 337, 448–51 Justice Beyond Borders (Caney), 241 Just Sharing, 41–42, 45n13, 132 Kahane, G., 485 Kamm, F. M., 25, 30n4, 31n6, 62, 88nn4–6, 89n7, 160, 162 on context, 80–81, 88n2 on organ allocation, 512, 519n8 Kant, I., 91, 160, 197n15, 235, 268, 314–16, 493–94 on respect, 180–81, 196–97, 197n3 Kapstein, E., 239 Karlovian Transplant Case, 53–55, 57n39, 57n41 Katz, M., 529n9 Keating, F., 514 Kenealy, P. M., 489 Kennedy, E. (“Ted”), 138, 204–5 Kennedy, Justice, 201, 213, 215, 218n39 Kennedy Krieger Institute (KKI), 342–43 Kerr-Mills bill (1960), 114–15 kidney disease, 179–83, 197n6, 515–16, 519n2 Kittay, E., 307, 328–29 KKI. See Kennedy Krieger Institute Kopelman, L., 350 Korsgaard, C., 441 Kozol, J., 409n1 Kramer, L., 294 KRAS gene, 463, 473n19 Krugman, P., 204 Kuczewski, M., 304 Lanterman-Petris Act, 197n8 Law of Peoples (Rawls), 100

Index lawsuit, 179–80, 531–33, 541n1. See also medical malpractice and tort reform lead poisoning, 342–43 legislation, 199n48. See also specific laws mental health, 405 for NBS, 476, 479 right to health care and, 93–94 lesbians. See sexual orientation leveling down (objection), 50, 53, 157 Levine, C., 434, 437–39 liberalism, 37, 41, 44n4, 202, 307 prison and, 375–76 Rawls and, 60–61, 449 welfare, 197 libertarians, 41, 135, 196–97, 263n26 health care finance and, 123–25 against individual mandate, 129 insurance effect and, 133–34, 139n6 paternalism, 76 liberty, 38–40 negative, 35, 43n1 life expectancy, 21–22, 198n28. See also genetic testing at birth, 146, 146f cancer drugs cost with, 462–64, 467, 469–71, 472n7, 492n7 DALEs, 60 for end-stage cancer, 462, 472nn6–7 social expense and, 466–67 in U.S., 71 lifespan, 2, 162, 356 prudential, 358–59, 362n13 utilitarianism and, 47, 60, 65 liver disease ALF as, 511, 517 MELD for, 510, 515–16, 519n1 liver transplants, 506f, 510–11, 510t, 517–18, 519n2 death without, 505, 519n1 Locke, J., 124 locked-in state, 487 long-term care. See chronic illness and disabilities love, 188–89, 197n3 Lowden, A., 398n5 luck egalitarianism, 20, 29, 45n12, 450 Lyman, G. H., 472n2 Mackett, C. W., 527 mandates, 44n11, 205–6. See also individual mandate for prison health care professionals, 377–79 mandatory inoculation exemptions from, 66–67 as public good, 66, 66t mandatory insurance, 36, 40, 42, 44n11 Mann, P. S., 202 Marcus Aurelius, 182 marginal egalitarianism, 49 markets, 374–75 failure of, 36, 43 strength of, 538

Marshall, Chief Justice, 212, 217n23 McMahan, J., 313–19, 321–22, 323n3, 323n8, 323n11, 329 MCS. See minimally conscious state MDGs. See Millennium Development Goals Medicaid, 110–11, 114, 286 age rationing related to, 355–56, 361 enrollment in, 115–18 Medical Egalitarianism, 42–43, 131 medically least well off, 462, 465–66 medical malpractice and tort reform, 13–14, 531 anesthesia in, 536–37 caps in, 534–35, 535t categories of, 534–35, 535t compensation in, 532–34, 533t, 535t, 538–40 health spending and, 537–38 malpractice system in, 532–34, 533t over-claiming in, 539–40 payment allocation in, 533–34, 533t physician supply and, 535–37, 536t, 537f premium increase in, 538–39 in Texas, 535–38, 536f–537f, 536t under-claiming in, 533, 539–40 Medicare, 10, 118, 119nn4–5, 215n9, 286, 336 age rationing and, 355–56, 359, 361 buy-ins for, 114, 116–17 distributive politics of, 112–13 expansion of, 204–10 political economy of, 110–14 privatization of, 111, 113–14 race in, 272 Medicare Improvements for Patients and Providers Act, 405 medicine, 138, 284, 417–19, 422, 451. See also specific topics imiglucerase, 466 ineffectiveness of, 140n11 purpose of, 383 as social artifact, 296 MELD. See Model for End-Stage Liver Disease Mello, M. M., 455 men, 405 Mencius, 181 mental health, 401, 404–6, 408 health insurance for, 12 normality in, 171–72, 171f–172f mental health care, 406–7 stigma of, 404–5, 408–9 Mental Health Parity and Addiction Equity Act of 2008, 406 mental illness, 199n49, 199n63. See also clozapine addiction as, 191–92 competence and, 185 compromised neonates and, 352 disruption from, 406 homosexuality as, 291–92 NAMI for, 405 placebos and, 426n24 Mercurio, M. R., 350

551

552

Index

Micro-Politics: Agency in a Postfeminist Era (Mann), 202, 209 military. See also soldiers spending of, 216n16 Mill, J. S., 60, 181, 183, 290, 376 Millennium Development Goals (MDGs), 239–40 Mills, D. H., 533 Mills, W., 110 minimally conscious state (MCS), 489–90, 500n4 resource allocation for, 496–99 VS compared to, 487, 496, 500n9 MIRVed. See multiple independent relevant variables mixed systems, 28 Model for End-Stage Liver Disease (MELD), 510, 515–16, 519n1 Mohr, R., 292–93 monomanie, 199n49 Monti, M. M., 488 Moore, M., 294 moral agents, 7 person or, 499n3 moral community, 490–93 moral desert theory, 450 morale, 368–69 moral hazard, 195–96 morality, 18–20, 44n4, 290 agreement on, 31n6 clozapine and, 166 context related to, 79–80, 88n2 of individual mandate, 129 of Just Sharing, 41–42 of Karlovian Transplant Case, 53 soldiers’ health care related to, 11, 366–67, 369–70 moral justifications, 156–59 moral patient, 500n7 moral rights, 97–98, 100 moral status, 328–30 moral support, 36, 44n4 moral worth, 491–93 Mormons, 187–88 motor vehicle accidents (MVAs), 187 Mulhall, S., 329 multiple independent relevant variables (MIRVed), 390–91 multiple sclerosis, 303, 472n5 Murphy, K., 190 Murray, D., 453 Murray, T., 479 mutual love, 197n3 MVAs. See motor vehicle accidents Nagel, T., 158–59 Nair-Collins, M., 499n2 NAMI. See National Alliance on Mental Illness National Alliance on Mental Illness (NAMI), 405 National Center for Health Statistics, 409n2 national health insurance, 107–10, 119n3

National Health Interview Survey, 409n2 National Health Service (NHS), 6, 196, 229. See also National Institute for Health and Clinical Excellence employment in, 219 IFR in, 220, 227–28 NICE and, 28–29 PCTs in, 223, 226–28 rationing in, 210 resource allocation in, 223 social class and, 73–74 supplementary tier for, 29–30 National Institute for Health and Clinical Excellence (NICE), 6, 28–29, 226, 467 cost-effectiveness of, 224–25 nature of, 223–24 National Institutes of Health (NIH), 451–52 CAM funding by, 413 Office of Alternative Medicine at, 413 priorities of, 79, 88n1 National Organ Transplant Act (NOTA), 517 Native Americans, 183, 455 NBS. See newborn bloodspot screening NCDs. See noncommunicable diseases needs, 222, 258, 263n28 basic, 405–7, 409nn3–4 of NICE, 225 outcome and, 169 negative liberty, 35, 43n1 negative rights, 5, 263n26 Nelson, J., 332 Netherlands, 44n2, 44n8 neurological injuries, 13 Newacheck, P. W., 337 newborns, 10, 13, 306, 326. See also compromised neonates newborn bloodspot screening (NBS), 477, 480 informed consent for, 475–76, 478 parent education on, 475, 478–79, 481 New Deal, 207–8 New Jersey, 494–95 New Jersey Declaration of Death Act (1991), 486, 495 New Mexico, 182 New York, 117, 494–95, 513 Ng, Y., 52 NHS. See National Health Service NICE. See National Institute for Health and Clinical Excellence Nickel, J., 232–33 Nicomachean Ethics (Aristotle), 60 nicotine. See tobacco NIH. See National Institutes of Health 9/11, 12, 59, 62–63, 64 air quality after, 66t, 67 noncommunicable diseases (NCDs), 240 non-market systems, 374–75 Nord, E., 25, 88n2, 137, 163

Index normal functioning, 18–19, 23, 30n1, 61, 123. See also clozapine in CaSE study of “genetic disease,” 393 mental health and, 171–72, 171f–172f new, 304 Northwestern Nat. Life Ins. Co v. Riggs, 217n27 Norway, 30 NOTA. See National Organ Transplant Act Nozick, R., 123, 156 Nussbaum, M., 48, 125–27, 247, 325–28 SCD and, 314, 316, 323n10 nutrition, 421 Obama, B., 5, 195, 205, 215, 285 health care debate and, 207–10 on preexisting conditions, 387 sexual orientation and, 289, 298n27 for universal coverage, 397 Obama, M., 9, 273–74 obesity, 9, 197n10, 273–76 obligations, 258. See also family caregiving agent-relative, 222–23 belief about, 92–93 disabilities and, 247 expectation of, 95 human rights or, 99–100 of human subjects, 456–57 of institutions, 451–55 means for, 238–39 of physicians, 94–95 for researchers, 455–56 rights and, 91–92 The Odyssey (Homer), 193–95, 199n64 OECD. See Organisation for Economic Co-operation and Development O’Neill, O., 99–100 OPO. See Organ Procurement Organization opportunity, 19, 48–49. See also fair equality of opportunity age rationing related to, 360–61 Daniels for, 440 elderly and, 29 EOW, 36, 41–43, 45nn12–13, 131–32 equality of, 157–58, 249, 339–40 health care related to, 17–18 life as, 357 medical egalitarianism and, 42–43 in resource egalitarianism, 56n14 opportunity costs, 149, 220, 226, 228 OPTN. See Organ Procurement and Transplant Network oral health, 12, 401, 404, 409n2 of children, 402–3, 409n1 life and death related to, 407–8 poverty related to, 402–3 oral health care inequality of, 401–4 social devaluation of, 407–8

553

Oral Health in America: A Report of the Surgeon General, 401–3 Oregon, 247, 407 mental health care in, 408–9 organ allocation, 13, 506–7, 506t, 509, 510t, 511–12, 514, 519n8 MELD for, 510, 515–16, 519n1 suicide and, 517–18 organ donation, 505, 512 Organisation for Economic Co-operation and Development (OECD), 71 health expenditure in, 145–46, 152n9, 152n16 rich nations in, 146, 146f, 152n15 Organ Procurement and Transplant Network (OPTN), 506 on transplant tourism, 517 Organ Procurement Organization (OPO), 505 organ transplantation, 13, 49, 162, 351, 468, 506, 519n2. See also liver transplants; specific organs age rationing in, 358, 361n10 in analogies, 53–56, 57nn41–42 center size related to, 512–15 efficacy in, 511, 513–14 equity for, 509–11, 510t fairness in, 514–15 goals for, 508–9 psychological issues and, 517–18 required request for, 505 Schiavo related to, 497 for status 1 patients, 506t, 511–12, 519n9 trust and, 507–8, 519nn4–5 unsupported distinctions in, 511–12 VS and, 497–98 Oscar effect, 198n28 outcomes age rationing and, 357–58 education and, 22 equality in, 156–57, 220–21 health care fair limitations and, 25 on NBS, 480 needs and, 169 treatment discontinuation and, 168–71, 169f–171f, 174 Owen, A. M., 488 Oxfordshire Primary Care Trust, 6, 226–28 paclitaxel plus bevacizumab, 462–63, 470, 472n9 pain, 487, 489 pandemics, 65, 529n14, 530n26 disasters and, 523–24 international responsibility in, 527–28 isolation in, 525–27 processes for, 524–25, 528, 529n9, 529n12 quarantine in, 525–27 triage in, 525–26 trust and, 524, 529n9 Pandemic Ventilator Project, 525 panitumumab (Vectibix), 463 paraplegic, 53, 57n36

554

Index

parents, 341, 373 education for, 475, 478–79, 481 Parfit, D., 158 Parkinson’s disease, 184 Parks, J., 286 partial compliance theory age rationing related to, 356–57 ideal theory compared to, 8 Pascal, B., 389 paternalism, 76, 198n16, 272, 274 patients, 500n7. See also brain-dead patients; physician-patient relationship physicians’ choice of, 294–97 status 1, 506t, 511–12, 519n9 Patient Protection and Affordable Care Act (PPACA), 36, 44n4, 195, 433, 441 patient responsibility, 182–84 Paul v. Virginia, 217n27 Paul Wellstone and Pete Comenici Mental Health Parity and Addiction Equity Act (2008), 405 Pauly, M. V., 40 Payton, B., 179–82, 195, 197n6 Payton v. Weaver, 179–82 PCIP. See preexisting condition insurance plan PCTs. See Primary Care Trusts per capita gross domestic product (GDPpc), 21 persistent vegetative state (PVS), 137–38 personal identity, 161, 189–90 Personal Integrity, 134 personalized medicine, 461, 472n2, 472n5. See also genetic testing Pfeffer, R., 201 pharmaceuticals, 117, 216n10. See also cancer drugs; medicine CAM and, 426n33 genomic science and, 13 profit for, 263 pharmacogenetics, 465–68 phenomenal consciousness, 487–88 phenylketonuria (PKU), 476 physicians, 167, 281, 290 authority of, 494 conscience exemptions for, 296 humility of, 419, 424n9, 430n55 numbers of, 182–83, 535–37, 536t, 537f obligations of, 94–95 patient choice by, 294–97 role of, 62–63, 69n20 Texas supply of, 535–37, 536t, 537f physician-assisted suicide, 280 physician-patient relationship, 271–73 as contract, 197n7 gender in, 279–80 Payton v. Weaver, 179–82 PKU. See phenylketonuria placebos mental illness and, 426n24 for science in medicine, 416–17, 419, 426nn24–25

Plato, 182–83 pluralism ethical, 50 justice, 59–68 of market systems, 35, 42 Poetics (Aristotle), 201 Pogge, T., 449–50, 454, 457n2 policies, 3. See also specific policies communication and, 68 emergencies and, 59 kidney disease and, 183 presumptions about, 59 trust and, 68 politics, 202, 204, 209 CAM and, 430n56 distributive, 112–13 effectiveness and, 441 income inequality related to, 22–23 individuals and, 203 institutions of, 100–104 mandate micro-political analysis, 205–6 1965 reconsidered, 113–14 RCTs and, 453 recognition deficits in, 207–8 redistributive, 113 SCD and, 317 special-interest, 111–12 political economy, 110–14 Political Liberalism (Rawls), 60, 265–66, 269 political parties, 119n3. See also specific parties political rights in constitutional democracies, 103 against equity and universal access, 35, 44n3 political system, 107 political parties in, 108–10, 119n3 positive rights, 5, 260, 263n26, 263n32 poverty, 257, 263n14, 263n15 children in, 255–56 oral health related to, 402–3 Powell, Justice, 211, 213 power recognition deficits and, 207–8 social class and, 8 of state, 37, 44n6, 217n27 PPACA. See Patient Protection and Affordable Care Act PPS. See prospective payment system Practical Ethics (Singer), 48–51 practical identities, 436–38, 440–41 prayer, 421, 425n22 preexisting conditions, 12, 387–97, 398n2, 398n5 preexisting condition insurance plan (PCIP), 387 premature births. See compromised neonates Presumed Prior Consent, 131, 134, 140n8 prevention, 256 of addictions, 193 CAPTA for, 350–51 cost-effectiveness of, 187 social responsibility and, 187–88

Index primary care, 132–33 oral health care as, 407–8 Primary Care Trusts (PCTs), 223 in Oxfordshire, 6, 226–28 primary goods, 18, 256, 258 health care for, 440 practical identities as, 440–41 Rawls on, 19, 61, 265–66, 318, 323n9 principles, 220 AFRP, 36–39, 44n7, 44n9 of difference, 23, 61, 67, 155, 159 ethical, 220–23 of Rawls, 23, 60–61, 67, 122–23, 376, 395, 435 of treatment discontinuation, 171 Principles of Biomedical Ethics (Beauchamp and Childress), 234 prioritarianism, 61, 64, 155 bottomless pit in, 123, 162–63 equality in outcomes in, 156–57 identification of, 159–62 moral justifications of, 156–59 strength claims in, 158–59 utilitarianism compared to, 50–52, 62 prioritization, 24–25, 133–35, 155–56, 512 for research, 451–52, 454–55 in rule of rescue, 222–23 of soldiers’ health care, 363–66, 370n3 prisons, 383nn6–7, 384nn15–16 justice and, 374–77 as punishment, 375–76 prisoners, 383 rights of, 199n63, 377–78, 382 prison health care, 11, 378–79 deaths and, 374, 380–81 responsibility for, 373–74, 382–83 social justice and, 381–83 prison health care professionals, 384n16 executions and, 380–81 mandate for, 377–79 penal culture of, 374, 381–82 procedural justice, 1, 153n25, 451 Rawls for, 25, 30 professional roles, 83–84. See also prison health care professionals Profiles in Caregiving: The Unexpected Career (Aneshensel), 439 prospective payment system (PPS), 111 prostate cancer, 470 proximate cause, 531 psychokinesis, 425n22 public goods, 258, 263n27 mandatory inoculation as, 66, 66t SES and, 67 state power and, 37, 44n6 public health, 4–5, 63–67, 66t, 69n21 addiction and, 192–93 NBS and, 479–81 prison health care professionals for, 379–80

555

punishment, 375–76, 383n4, 384n6. See also prison PVS. See persistent vegetative state QALYs. See quality-adjusted life years QL. See quality of life QMB/SLMB, 116–17, 119n4 quadriplegic, 53, 57n36 quality of life (QL), 416 quality-adjusted life years (QALYs), 6, 60, 149, 153n23, 221, 340 affective disorders and, 186–87 cancer medicine cost related to, 462–63, 467, 469–70, 472n7, 472n10 Quinlan, K. A., 488 race, 261, 266–67, 272. See also African Americans Native Americans, 183, 455 recognition deficits and, 207–8 uninsured children and, 335, 337 racism, 266–68, 270–72 radiation, 528 Rae, D., 49 Rand Corporation, 197n10 random allocation, 49–50, 57n22 randomized controlled trial (RCT), 420 homeopathics and, 415, 425n18 on social determinants of health, 453 rational choice addictions and, 190–91 age rationing and, 358–59 rational democratic deliberation, 468–71 rationing, 2, 6–7, 17, 128, 133, 144, 153n26, 210. See also age rationing; specific topics GDP and, 146–50, 146f, 153n29 justice of, 143, 148–50, 153n19, 153nn23–25 objections to, 150–52, 153nn29–30 pharmacogenetics and, 465–68 philosophical interest of, 147–48 QALY and, 149, 153n23 readiness for, 146–48, 146f social control and, 151–52 Rawls, J., 124, 199n62, 290, 450 difference principle of, 23, 61, 67, 155, 159 families and, 435 on goods, 19 health care finance justice and, 122–23 on human rights, 100 lesson from, 64–65 partial compliance theory of, 356–57 on primary goods, 19, 61, 265–66, 318, 323n9 principles of, 23, 60–61, 67, 122–23, 376, 395, 435 for procedural justice, 25, 30 simplification of, 18–19, 21 socioeconomic gradient and, 23 on stability, 269 theory of justice as fairness from, 18–19, 21, 23, 193 Raz, J., 99–100 RCT. See randomized controlled trial Realm of Rights (Thomson), 57n37, 57n41

556

Index

reasonableness, 180, 390, 495, 524 accountability for, 17, 24, 28–30, 139, 221, 452 reciprocity, 92 in pandemics, 526 SCD and, 320–21, 323n14 Reeve, C., 312n64 Rehnquist, Justice, 218n35 Reid, T. R., 44n2 rejecters, 38–39, 44n8 relative inequality, 22 relevance condition, 26–28 religion, 291, 415 Jehovah’s Witness, 180 Mormons, 187–88 prayer, 421, 425n22 sexual orientation and, 295 Relman, A. S., 424n12 Republicans, 110, 113, 119, 210 Affordable Care Act and, 387–88 research, 136–37, 478, 514. See also children’s health care research; specific topics Belmont Report on, 445–46 on CAM, 424n16, 425nn18–19, 425n22, 426n33, 430n64 deaths and, 451, 455 funding for, 452–54 international priorities for, 454–55 IRBs for, 446–48, 455–56 public health and, 63–64, 69n21 RCT for, 415, 420, 425n18, 453 respect for subjects in, 447–48 researchers’ obligations, 455–56 residual dried bloodspots (DBS), 475 resilience, 76–77 resources. See also specific topics equality of, 49 human rights related to, 102 as welfare, 52 resource allocation. See also specific topics efficacy of, 493–94 for VS and MCS, 496–99 medical models for, 62–63 for NBS, 479–81 in NHS, 223 resource distribution. See resource allocation resource egalitarianism, 47–48 opportunity in, 56n14 resource scarcity, 7–8, 47, 56n3. See also treatment discontinuation; specific topics respect for autonomy, 508 beneficence v., 180–81 compliance related to, 183–84 consent as, 180 for human subjects, 447–48 Kant on, 180–81, 196–97, 197n3 as law of duty, 197n3 strong and weak paternalism related to, 198n16

responsibility, 275 collective, 258–61, 263n23, 369 control and, 184 for cost containment, 423 for health insurance, 195–96 just distribution of, 181–82 lawsuit on, 179–80 non-market systems for, 374–75 in pandemics, 527–28 of parents, 373 of patients, 182–84 Payton without, 179–81, 195 for prison health care, 373–74, 382–83 social, 187–88 retributive justice, 1 reverse engineering bill for, 147–48, 151, 153n19 GDP and, 143–48, 145f, 152n5, 153n19 rationing compared to, 144 rheumatoid arthritis, 472n5 Rhodes, R., 296, 494 rich nations, 146, 146f, 152n15, 241 rights. See also human rights; specific declarations ICESCR for, 98, 238–39 moral, 97–98, 100 negative, 5, 263n26 obligations and, 91–92 political, 35, 44n3, 103 positive, 5, 260, 263n26, 263n32 of prisoners, 199n63, 377–78, 382 quasi-, 92 reciprocity for, 92 of soldiers’ health care, 363 surrogates for, 325–28 against trespass, 180, 197n9 of Ulysses contract, 194–95 right to health care, 5, 91, 93–94, 98–99 risks, 36 of CAM, 420 in children’s health care research, 342–44 high-risk areas, 263n29 from NBS, 477–78 of soldiers, 365, 371nn8–9 special risk insurance, 258–59, 263n29 risk-benefit ratio, 447 Rivers, J., 284 road safety, 73, 187 Roberts, J. P., 428n48 Robertson, J., 296 Roosevelt, F. D., 109, 207–8 Rosker v. Goldberg, 199n48 Ross, W. D., 234 Ruddick, S., 321 rule of rescue, 306 in California, 179, 182, 195, 197n6 cancer treatment and, 465 EMTALA for, 195 IFR panels and, 228

Index NICE and, 225 prioritization in, 222–23 Sabin, J. E., 128, 140, 452 SACHDNC. See Secretary’s Advisory Committee on Heritable Diseases in Newborns and Children Sage, W. M., 531 Sanders, B., 216n17, 218n51 Santa Clara County v. Southern Pacific Railroad, 211–12, 217n25 SARS. See severe acute respiratory syndrome Savulescu, J., 295–96, 358, 362n11, 485 Scanlon, T. M., 19, 84, 89n8, 158, 160 SCD. See severe cognitive disabilities Schaefer, O., 457 Scheffler, S., 449 Scheman, N., 322–23 Schiavo, T., 13, 137, 332n6, 485, 496 efficacy and, 493–94, 497, 500n9 SCHIP. See State Children’s Health Insurance Plan S-CHIP. See State Children’s Health Insurance Plan Schneider, B. P., 472n9 Schneiderman, L. J., 500n10 science in medicine, 121, 420, 422, 425n18, 425n22, 430n55 beliefs for, 414–15, 428n48 Chinese medicine and, 414, 421, 425n19 clinical trials for, 417–18, 427n35, 427nn41–42 for clinicians, 417–19, 427nn41–42, 428n49 double standards about, 416–19, 429n51, 429n53, 430n54 implications of, 418–19, 428nn44–49, 429nn51–52 orderly laws of nature for, 414–15, 424n16 philosophical obstacles to, 416–17, 426nn24–26 placebos for, 416–17, 419, 426nn24–25 practical obstacles to, 417–18, 426n33, 427n35, 427n39, 427nn41–42 proof in, 414, 424n14 quackery compared to, 415, 419, 424n16 Secretary’s Advisory Committee on Heritable Diseases in Newborns and Children (SACHDNC), 480–81 security, 75. See also health security Segall, S., 45n12 Select Draft Law Cases, 199n48 self-control. See control self-hypnosis, 421 Sen, A., 18, 20, 23, 48, 56n9 capabilities approach from, 126–27, 318, 449 on disabilities, 318 Sequential Organ Failure Assessment, 529n14 SES. See socioeconomic status severe acute respiratory syndrome (SARS), 12 severe cognitive disabilities (SCD), 320, 323n4, 323n6, 323nn10–14 contractualism and contrarianism with, 315–18 personhood in, 313–14, 321 utilitarianism related to, 313–15, 319 sexual activity, 283

557

sexual orientation, 9, 289–91, 298n27. See also homosexuality employment and, 292–93 physician choice and, 294–97 Shalala, D., 506, 512 Shaw, G. B., 77 Shaw, W., 52 Shue, H., 232–36 Shumlin, P., 218n51 sickle cell trait discrimination and, 390, 393, 398n1 NBS for, 480 Sicko (film), 204 Silvers, A., 316–17, 323n6, 323n8, 331 Singer, P., 48–51, 309–10, 312n64 SDC and, 313–19, 321–22 Singer Earthquake Case, 48–51, 57n22 single-payer insurance, 35, 44n2, 205, 216n17, 218n51 Skrabanek, P., 425n17 slavery, 238 Sloan, F., 533 Smith, J., 438–39 Smith, R., 427n35, 438–39 Smith, T., 438–39 Smith, V. W., 374 smoking. See tobacco social class, 4, 7–8, 73–74 social construction of family caregiving, 437–39 race as, 267 social contract, 122, 127, 363 social control, 151–52 social cooperation, 9–10 social determinants of health, 102, 442n9, 452–54 social epidemiology, 98 social expense, 466–67 social identity, 291 social inequality, 22 socialized medicine, 204, 216n10 social justice, 2, 309–10, 381–83 social model of chronic illness and disabilities, 306–7 of disabilities, 245–47 social responsibility, 187–88 social responsiveness, 330, 332n5 Social Security, 113, 203 health care systems and, 208 or national health insurance, 109 social value judgments (SVJ), 224–25 society, 207–8, 269–70 communal organization of, 259–60, 263n28 socioeconomics, 8 health related to, 17, 21 socioeconomic gradient, 21 inequality and, 22 Rawls and, 23 socioeconomic status (SES), 22, 98. See also poverty public good and, 67 social class and, 4, 7–8, 73–74

558

Index

soldiers, 199n48, 293–94, 371nn8–9 choices of, 369–70 definition of, 364–65, 370n3, 371n4 non-combatants as, 364–65, 371n5 soldiers’ health care, 11–12, 371n17 civilian medicine for, 364, 366–67 importance of, 364–65 for morale, 368–69 morality related to, 11, 366–67, 369–70 priority of, 363–66, 370n3 types of, 367–68 somatic syndromes, 183 South Central Ethical Framework, 6, 227 Sovereign Virtue (Dworkin), 201–2 Spicer v. Williamson, 377–78 spinal manipulation, 421 Starr, P., 430n56 states, 203–4, 218n51, 514. See also specific states State Children’s Health Insurance Plan (SCHIP) (S-CHIP) (CHIP) for children’s oral health, 403 for uninsured children, 114, 116, 338–39, 403 state consciousness, 488 state power over insurance companies, 217n27 public goods and, 37, 44n6 state-run, means-tested health programs, 119, 119n5. See also Medicaid CHIP, 114, 116, 338–39, 403 history of, 114–17 under-enrollment in, 117–18 Steene, A., 472n13 Stein, M., 247 Stevens, Justice, 201, 213–15, 217n28 stipulated interpersonal comparisons, 51 Stone, J., 163 subjects. See human subjects suicides, 102, 186, 203 organ allocation and, 517–18 physician-assisted, 280 Surgeon General, U.S. on infectious diseases, 523 for mental health care, 404 on oral health, 401–3 surrogates, 10, 332, 332n7 coherence and, 327–28, 332n2 jury service with, 325–28, 332n2 pedagogical, 330–31, 332nn5–6 SVJ. See social value judgments swine flu (H1N1), 523 Switzerland, 44n2 Syed, T., 528 Tabery, J., 527 taxes, 140n10 on alcohol, 183, 198n30 for health care, 123–25 Taylor, C., 454

Temkin, L., 156 Tetrault, B., 374 Texas claiming and payouts in, 535, 536f medical malpractice and tort reform in, 535–38, 536f–537f, 536t physician supply in, 535–37, 536t, 537f theories, 3, 29–30 of addictions, 190–91 of freedom, 189 ideal, 8 of justice, 337, 448–51 of justice as fairness, 18–19, 21, 23, 193 maximization in, 47 metric of, 47–48, 56n2 moral desert, 450 partial compliance, 8, 356–57 of utilitarianism, 448 A Theory of Justice (Rawls), 60, 122, 265–66 Thomas, L., 270 Thompson, D., 31n7 Thomson, J. J., 57n37, 57n41, 370 Tigue, C. C., 472n8 tobacco, 73, 183, 198n30, 257, 453 control and, 75 deaths from, 191–92 De Tocquevelle, A., 203 Tooley, M., 349 Townsend, P., 72 tragic choices, 6, 62, 79 Transcendental Meditation, 421 transgender people, 289. See also sexual orientation transitive consciousness, 488 treatment discontinuation, 88n4, 166–67, 172–73, 177n3. See also clozapine outcomes and, 168–71, 169f–171f, 174 triage, 62 fair equality of opportunity and, 64 justification for, 66, 66t in pandemics, 525–26 for prison health care, 383 Sequential Organ Failure Assessment, 529n14 as soldiers’ health care, 366–67 utilitarianism and, 63 Trolley/Transplant case, 57n41 Truman, Harry S., 110 trust, 270. See also African American distrust addictions and, 194–95 organ transplantation and, 507–8, 519nn4–5 pandemics and, 524, 529n9 PCTs, 6, 223, 226–28 policies and, 68 for prison health care professionals, 380 SCD and, 316–17, 323n6 tsunamis, 528 Tuskegee study, 8, 268–70, 445 Two Nations: Black and White, Separate, Hostile, Unequal (Hacker), 270

Index UDHR. See Universal Declaration of Human Rights Uganda, 297 U.K. See United Kingdom health care Ulysses, 193–95, 199n64 UN. See United Nations unemployment, 205–6, 262n6 uninsured children, 335, 337–39 SCHIP for, 114, 116, 403 United Kingdom health care (U.K.), 95. See also Black Report; National Health Service control and, 74 EQ-5D instrument in, 72, 77 pandemics and, 530n26 social class in, 4, 74 U.S. health care compared to, 71 United Nations (UN). See also Convention on the Rights of People with Disabilities Charter of, 232 Committee on Economic, Social and Cultural Rights, 102, 233–34, 239, 248 UDHR, 72, 97–98, 101, 232–34, 236–39, 305 Universal Declaration on Bioethics and Human Rights, 305 United Network for Organ Sharing (UNOS), 13, 506–7, 506t United States (U.S.). See also specific states; specific topics CAM spending in, 413, 420, 430n62 Costa Rica compared to, 21 health care programs in, 121 health care spending of, 71, 335, 338, 413, 422 life expectancy in, 71 multi-payer insurance in, 44n2 organ allocation in, 506–7, 506t ranking of, 261, 337 Surgeon General, 401–4, 523 U.K. compared to, 71 United States v. White, 217n27 universal coverage, 215n9, 256, 262n13, 397. See also National Health Service; specific legislation collective responsibility and, 258–61, 263n23 cost-effectiveness of, 261 health care fair limitations and, 29–30 for health security, 78 with preexisting conditions, 387–88, 396, 398n5 Universal Declaration of Human Rights (UDHR) (1948), 72, 97–98, 101, 232–34, 236–39, 305 Universal Declaration on Bioethics and Human Rights (2005), 305 universal health care, 72, 143, 152nn1–2. See also National Health Service UNOS. See United Network for Organ Sharing urgency, 113 clozapine for, 174–75, 174f–175f for Kamm, 89n7, 162 organ transplantation and, 510, 510t in prioritarianism, 159, 162 suicide and, 517–18 U.S. See United States

559

utilitarianism, 48, 56n3, 56n9, 60, 63, 126–27, 247, 448, 467 deontological constraints and, 53–56 egalitarianism and, 4, 47, 50, 55–56, 469 for equality, 49–50 flu vaccine shortage without, 65 prioritarianism compared to, 50–52, 62 SCD related to, 313–15, 319 sexual orientation and, 290 utility, 63–64, 137, 190, 257, 315 illusion, 52 marginal, 47, 52, 88n3 social, 336–37, 340 vaccines, 65, 192, 199n59, 525 Vandenbroucke, J. P., 425n17 Veatch, R., 182, 485 vegetative state (VS), 485–86, 492–97, 499n3, 500nn9–10. See also brain-dead patients; Schiavo, T. care costs of, 489–90 consciousness in, 487–88, 500n5 diagnosis of, 488–89, 498–99 veil of ignorance, 122–23, 290, 317, 395–96, 448 ventilators, 490, 525 ventilator-dependent quadriplegics, 466 Vermont, 118 veterans. See soldiers Veterans Health Administration, 44n2 Volstead Act, 183 voting, 119n5, 328, 382 VS. See vegetative state vulnerability control and, 75–76 in prison health care, 374, 381 SCD related to, 317 Vulnerable Populations and Medicare Services: Why Do Disparities Exist? (Gornick), 272 wakefulness, 486 consciousness, 487–88, 500n5 Wallerstein, N., 455 Wall Street, 208 Wanglie, H., 140n8 Wasserman, D., 62 water, 67, 75, 258, 263n27, 408 weak paternalism, 198n16 wealth, 47. See also poverty rich nations, 146, 146f, 152n15, 241 wealth-maximization, 47 Weaver, Dr., 179–80, 182 Welch, P., 218n51 welfare, 48, 50–51, 56n5, 56n7 EOW, 36, 41–43, 45nn12–13, 131–32 resources as, 52 to work, 255 welfare egalitarianism, 47–49, 53, 57n38 Wertheimer, A., 456 West, M., 541

560

Index

West Bengal, 527 White, Justice, 212, 218n35 WHO. See World Health Organization Wilson, J., 210 Wilson v. United States, 217n27 Wittgenstein, L., 330 Wolf, L., 455 women, 9, 102, 248. See also specific women cosmetic surgery for, 284 feminists, 357 health care systems for, 281–82 as individuals, 203, 205 literacy of, 73 mammograms for, 282 obesity in, 275 patterns of injustice and, 437 pregnancy in, 180–82 rape of, 370

reproductive health for, 283–85, 295 social enfranchisement of, 209 sterilization of, 285 voting for, 382 Wong, S., 316 Woolsey, L., 439 World Health Organization (WHO), 71–73, 248, 302 Commission on Social Determinants of Health, 102 Constitution of, 91, 231–32 on pandemics, 524, 527–28 worse off, 155, 318, 323n10. See also prioritarianism identification of, 159–62 worst off prison for, 384n15 SCD related to, 318–19, 323n11 Yeats, W. B., 355, 361n1 yoga, 421