Concepts and Cases in Nursing Ethics, 4e (Aug 15, 2020)_(1554813972)_(Broadview Press) 9781554813971, 9781770487338, 9781460406892

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CONCEPTS A ND CASES IN NUR SING ETHICS 4th E D I T I O N

Michael Yeo, Anne Moorhouse, Pamela Khan, and Patricia Rodney

A portion of the revenue from this book’s sales will be donated to Doctors Without Borders to assist the humanitarian work of nurses, doctors, and other health care providers in the fight against COVID -19 and beyond. “One thing that sets Concepts and Cases in Nursing Ethics apart from many other nursing ethics texts is its effective weaving of theory into thoughtful discussions of case studies that have direct relevance to nursing. Student nurses and registered nurses should find much of value in the book’s ‘application to practice’ approach, which offers insights not only into the nature of ethics but also into the ways in which ethical analysis can help develop ethical nursing practice.” —Derek Sellman, Faculty of Nursing, University of Alberta “Ethical training is increasingly necessary in order to help nurses distill the concepts of right and wrong conduct. This text, in its fourth edition, provides nurses at various stages of their careers with basic ethical decision-making theory supplemented with timely and relevant case studies designed to show why value-based care is—and will always be—an integral component of effective health care.” —Blair Henry, Senior Ethicist, Assistant Professor at the University of Toronto

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oncepts and Cases in Nursing Ethics is an introduction to contemporary ethical issues in health care, designed especially for Canadian audiences. The book is organized around six key concepts: beneficence, autonomy, truth-telling, confidentiality, justice, and integrity. Each of these concepts is explained and discussed with reference to professional and legal norms. The discussion is then supplemented by case studies that exemplify the relevant concepts and show how each applies in health care and nursing practice. This new fourth edition includes an added chapter on end-of-life issues, and it is revised throughout to reflect the latest developments on topics such as global health ethics, cultural safety, social media, and palliative sedation, as well as ethical issues relating to COVID-19.

Michael Yeo is Professor in the Department of Philosophy at Laurentian University. Anne Moorhouse teaches bioethics at Ryerson University and practices nursing at Sunnybrook Health Sciences Centre, Toronto.

Pamela Khan is Associate Professor, Teaching Stream, at the Lawrence S. Bloomberg Faculty of

Nursing at the University of Toronto, and a member of the University of Toronto Joint Centre for Bioethics.

Patricia Rodney is Associate Professor in the School of Nursing and a Faculty Associate with the W. Maurice Young Centre for Applied Ethics at the University of British Columbia.

ISBN 978-1-55481-397-1 ISBN 978-1-55481-397-1

broadview press www.broadviewpress.com

CONCEPTS AND CASES IN NURSING ETHICS

CONCEPTS AND CASES IN NURSING ETHICS 4 th E D I T I O N

Michael Yeo, Anne Moorhouse, Pamela Khan, and Patricia Rodney

broadview press

BROADVIEW PRESS – www.broadviewpress.com Peterborough, Ontario, Canada Founded in 1985, Broadview Press remains a wholly independent publishing house. Broadview’s focus is on academic publishing; our titles are accessible to university and college students as well as scholars and general readers. With 800 titles in print, Broadview has become a leading international publisher in the humanities, with world-wide distribution. Broadview is committed to environmentally responsible publishing and fair business practices. © 2020 Michael Yeo, Anne Moorhouse, Pamela Khan, and Patricia Rodney All rights reserved. No part of this book may be reproduced, kept in an information storage and retrieval system, or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or otherwise, except as expressly permitted by the applicable copyright laws or through written permission from the publisher.

Library and Archives Canada Cataloguing in Publication Title: Concepts and cases in nursing ethics / Michael Yeo, Anne Moorhouse, Pamela Khan, and Patricia Rodney. Names: Yeo, Michael, author. | Moorhouse, Anne, author. | Khan, Pamela, author. | Rodney, Patricia, 1955- author. Description: 4th edition. | Revision of: Yeo, Michael. Concepts and cases in nursing ethics. Peterborough, Ont., Canada ; Lewiston, NY, USA : Broadview Press, ©1991. | Includes bibliographical references and index. Identifiers: Canadiana (print) 20200220632 | Canadiana (ebook) 20200220691 | ISBN 9781554813971 (softcover) | ISBN 9781770487338 (PDF) | ISBN 9781460406892 (EPUB) Subjects: LCSH: Nursing ethics. | LCSH: Nursing ethics—Canada. | LCSH: Nursing ethics— Case studies. | LCSH: Nursing ethics—Canada—Case studies. Classification: LCC RT85 .C66 2020 | DDC 174.2—dc23 Broadview Press handles its own distribution in North America: PO Box 1243, Peterborough, Ontario K9J 7H5, Canada 555 Riverwalk Parkway, Tonawanda, NY 14150, USA Tel: (705) 743-8990; Fax: (705) 743-8353 email: [email protected] For all territories outside of North America, distribution is handled by Eurospan Group. Broadview Press acknowledges the financial support of the Government of Canada for our publishing activities. Edited by Tania Therien Book Design by Em Dash Design PRINTED IN CANADA

CONTENTS PREFACE (Michael Yeo)   11 INTRODUCTION (Michael Yeo)   13 1. Outline of the Book  13 2. What Is Nursing Ethics?  14 3. Nursing Ethics, Bioethics, Health Care Ethics  15 4. Nursing Ethics and Nursing  17 5. Models of the Nurse-Patient Relationship  18 6. A Knowledge Base in Ethics for Nursing  20 7. Ethical Analysis and the Nursing Process  25 8. Case-Based Learning  29 References 30 CHAPTER 1: A Primer in Ethical Theory

(Michael Yeo)   33

1. Morality and the Sense of “Oughtness”  34 2. Morality and Ethical Analysis  35 3. Accountability and Morally Principled Decisions  37 4. Ethical Analysis and Ethical Theory  38 5. Theories about Morality  40 6. Ethical Theories  45 7. Conclusion  62 References 64 CHAPTER 2: Beneficence

(Michael Yeo, Anne Moorhouse, and Pamela Khan)   69

1. Beneficence and Benefiting Others  70 2. Beneficence, Self-Concern, and Duty  71 3. Challenges Determining What Is Beneficial  75

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4. Paternalism  79 5. Beneficence: Caring for Individuals in Context  81 6. Conclusion  83 Case Studies Case 1: Parens Patriae and the Case of J.J. (Michael Yeo and Anne Moorhouse)  84 Case 2: Disagreement about Treatment Decision-Making (Anne Moorhouse and Michael Yeo)  97 Case 3: Prescribed Opioids for Chronic Pain (Anne Moorhouse and Michael Yeo)  104 Case 4: Humanitarian Work in War-Torn Areas (Anne Moorhouse and Michael Yeo)  106 Case 5: Global Health, Cultural Differences, and Nursing Values (Michael Yeo, Anne Moorhouse, and Pamela Khan)  108 References 111 CHAPTER 3: Autonomy

(Michael Yeo, Anne Moorhouse, and Pamela Khan)   117 1. The Meaning(s) of Autonomy  118 2. Autonomy and Consent  125 3. Nursing Ethics and Consent  134 4. Limiting Autonomy: Paternalism, Protection of Others, and Justice  140 5. Autonomy, Advocacy, and Empowerment  156 6. Conclusion  160 Cases Studies Case 1: Advocating on Behalf of Vulnerable and Voiceless Patients (Michael Yeo and Anne Moorhouse)  161 Case 2: Hassan Rasouli, Withdrawal of Life Support, and Limits of Autonomy (Michael Yeo and Anne Moorhouse)  166 Case 3: Scott Starson, Mental Illness, and Capacity to Decide (Anne Moorhouse and Michael Yeo)  175 References 180

CHAPTER 4: Truth-Telling and Truthfulness (Michael Yeo, Pamela Khan, and Anne Moorhouse)   185 1. Truthfulness and Truth-Telling in Health Care  186 2. Arguments for and against Truthfulness in Health Care  187

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3. Cultivating Good Judgment  192 4. Truthfulness and the Circle of Care  198 5. Conclusion  200 Case Studies Case 1: Issue Concerning Communication of a Mental Health Diagnosis (Pamela Khan, Anne Moorhouse, and Michael Yeo)  201 Case 2: Cultural Values of Family Opposed to Informing Patient of Bad News Diagnosis (Pamela Khan, Anne Moorhouse, and Michael Yeo)  206 Case 3: Patient Request for Bad News Information in Trauma Centre (Anne Moorhouse, Pamela Khan, and Michael Yeo)  212 Case 4: Disclosing and Reporting a Patient Safety Incident (Michael Yeo, Anne Moorhouse, and Pamela Khan)  216 References 221 CHAPTER 5: Privacy and Confidentiality ( Michael Yeo, Anne Moorhouse, and Pamela Khan)   225 1. Health Professionals, Persons, and the Personal  226 2. Privacy and Confidentiality  227 3. Breaches of Confidentiality  228 4. Information-Sharing, Patient Authorization, and the Circle of Care  230 5. Determining Whether Information Is Confidential  232 6. Exceptions to the Rule of Confidentiality  233 7. Privacy and Confidentiality in the Digital Age  235 8. Privacy, Confidentiality, and Social Media  239 9. Conclusion  245 Case Studies Case 1: Confidentiality in an Occupational Health Unit (Anne Moorhouse, Pamela Khan, and Michael Yeo)  246 Case 2: Disclosing Information to Patient’s Friends and Family (Anne Moorhouse, Pamela Khan, and Michael Yeo)  253 Case 3: Release of Confidential Information to Third Parties without Consent (Anne Moorhouse, Michael Yeo, and Pamela Khan)  258 Case 4: Nurse Privacy and Social Media (Michael Yeo, Anne Moorhouse, and Pamela Khan)  265 References 269

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CHAPTER 6: Justice

(Michael Yeo, Anne Moorhouse, Patricia Rodney, and Pamela Khan)   273

1. Justice in the Distribution of Health Care and Resources for Health  274 2. Theories of Justice  275 3. Tensions and Conflict among Theoretical Orientations  277 4. Substantive Principles of Justice  278 5. Procedural Principles of Justice  284 6. Integrating Substance and Process  286 7. Levels of Resource Allocation and Decision-Making  287 8. Conclusion  296 Case Studies Case 1: Tension between Access to Care versus Quality of Care (Anne Moorhouse, Pamela Khan, and Michael Yeo)  298 Case 2: Allocation of Clinical Placements and Support for Clinical Education (Anne Moorhouse, Pamela Khan, and Michael Yeo)  303 Case 3: Equitable Allocation of Nursing Time and Care (Michael Yeo, Anne Moorhouse, and Pamela Khan)  308 Case 4: Triage and Rationing of Intensive-Care Beds during a Clinical Crisis (Anne Moorhouse and Pamela Khan)  312 Case 5: Medical Tourism (Anne Moorhouse and Michael Yeo)  317 Case 6: Jumping the Queue with Private Health Care (Anne Moorhouse and Michael Yeo)  319 References 321 CHAPTER 7: Integrity (Michael Yeo, Anne Moorhouse, Pamela Khan, and Patricia Rodney)   327

1. Integrity Defined  328 2. Personal and Professional Integrity  333 3. Integrity and Multiple Obligations  337 4. Integrity and Moral Distress  343 5. Conclusion: From Moral Distress and Disengagement to Co-Operation and Moral Community  347 Case Studies Case 1: Conscientious Reflection about Exposure to Risk in Context of a Pandemic (Michael Yeo and Anne Moorhouse)  350

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Case 2: Conscientious Objections to MAID at the Individual and Institutional Levels (Michael Yeo and Anne Moorhouse)  356 Case 3: Hospital Overcrowding and Discharge Planning (Anne Moorhouse and Michael Yeo)  364 Case 4: Responding to Mistreatment of Patients in Correctional Facility (Michael Yeo and Anne Moorhouse)  366 References 368 CHAPTER 8: End-of-Life Decision-Making

(Michael Yeo, Anne Moorhouse, Patricia Rodney, and Pamela Khan)   375

1. A Comprehensive Approach to End-of-Life Care  376 2. Exploring the Ethical Debate and Controversy about Assisted Death  378 3. Carter v. Canada, 2015  391 4. MAID Nursing Practice Implications  398 5. Conclusion  403 Case Studies Case 1: Margot Bentley and Advance Care Planning (Michael Yeo and Anne Moorhouse)  404 Case 2: Continuous Palliative Sedation Therapy (Michael Yeo and Anne Moorhouse)  417 References 422

ADDENDUM : Reflections on the Coronavirus Disease 2019 ( COVID -19) Pandemic: June 3, 2020

(Michael Yeo, Patricia Rodney, Anne Moorhouse, and Pamela Khan)   429

Index 471

PREFACE The third edition of this book began with a quote from the preface to the second edition: “Health care in Canada has changed dramatically in the five years that have passed since the first edition of this book.” This is now the fourth edition, and the changes in the Canadian health care landscape since the third are even more dramatic and an even more substantial revision was required for this edition. These dramatic changes include the COVID-19 pandemic, which occurred as this book was in the final stages of production! The overall format of the text remains the same, organized around discussion of central concepts in ethics, with provocative cases that bring to life and probe each concept. The moral values, virtues and principles associated with each of these concepts remain as relevant today as ever, and these concepts continue to be a useful way to orient ethical reflection and analysis in relation to the ever-changing health care landscape. However, the analysis throughout this edition has been reworked in view of updated references from the literature and significant developments in nursing ethics, the profession of nursing, health care, health policy, and society more generally. Most of the cases and commentaries are new; we have also taken the advice of one of our reviewers and included some cases without commentary for readers to work through on their own, guided by suggested questions. New topics have been added, including medical assistance in dying (MAID), palliative sedation, social media, and issues concerning Canada’s Indigenous peoples. Given the extent of the revisions, this edition is as much a rewrite of the previous edition as it is a revision. Even so, in important ways it still bears the traces of the earlier editions. The voices of co-authors who contributed to the very first edition and were not involved in the preparation of this edition can still be heard. It is fitting here to acknowledge with abiding gratitude the work of these individuals: Trudy Molke (Beneficence); Jean Dalziel (Autonomy); Sandra Mitchell (Truthfulness); Irene Krahn (Privacy and Confidentiality); Gail Donner ( Justice); and Ann Ford (Integrity). 11

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I want to thank my co-authors—Anne Moorhouse, Pamela Khan, and Paddy Rodney—for their contributions and commitment to this edition. Putting this new edition together took longer (much longer) than any of us originally anticipated and required much more work. We are appreciative of the thoughtful comments and recommendations offered by reviewers of the previous edition. We are grateful to Broadview Press for their support and for their patience with our proposed timelines. We believe that the final product has been worth the wait. Michael Yeo

INTRODUCTION 1. OUTLINE OF THE BOOK The profession of nursing, like the health care system, is undergoing rapid development. New and diverse roles are emerging, and old roles are being redefined. The profession is becoming more reflective about the meaning of nursing. What is nursing, and what ought nursing to be? Such questioning is intricately bound up with ethics. The aim of this book is to present a unified perspective on the ethical dimension of contemporary nursing. Its objective is to furnish nurses with a clearer understanding of the key concepts and arguments in which ethical issues in, or impacting on, nursing are interpreted, discussed, and analyzed. Such understanding will better equip nurses to face the challenges of their profession and to practise responsibly in their chosen fields and specialties. The book is divided into eight main chapters and an addendum. The first chapter is a brief primer to introduce readers to ethical analysis and the main lines of thought in ethical theory. Chapters 2 through 7 are devoted to the elucidation of six concepts fundamental to ethical analysis and theory: beneficence, autonomy, truthfulness, privacy and confidentiality, justice, and integrity. Each of these concepts covers a value, principle, or virtue highly prized in nursing and more generally in health care. Virtually any ethical issue in nursing involves reference to one or more of these concepts. Ethical norms and guidance provided by professional nursing associations and regulatory bodies are referred to throughout as they bear on issues under discussion, as are legal frameworks relevant to nursing practice. In this edition, we have also included a chapter specifically devoted to end-of-life care. Recent developments with respect to palliative care and MAID warrant detailed and focused analysis as nurses and other health care providers orient themselves to practice implications that are still being worked through. In light of the COVID-19 pandemic, we have also 13

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added an Addendum which offers reflections on the pandemic in light of the main value concepts discussed in the book. Each chapter includes cases for reflection or discussion that highlight issues related to the concept around which the chapter is organized. Some of these are actual cases compiled from publicly available information or from landmark court cases; others are fictionalized, based on the authors’ experience with actual cases. Each case is preceded by an introductory preamble, which puts the issue raised by the case in context. Most of the cases are followed by a critical commentary in which ethical analysis is brought to bear; some are left without commentary so that readers can analyse the issue for themselves, guided by the background information and analysis in each chapter. The chapters flow from one to another in sequence, but each chapter stands on its own and can be read selectively according to the reader’s interests. The book in its entirety is ideally suited for a dedicated course in ethics, but instructors may also find it useful to select individual chapters or specific cases to match whatever topic or subject students are learning in their curriculum. We hope that practising nurses will also find this book useful and that nurse educators will draw from it to facilitate reflection and conversation about various ethical issues being grappled with in hospitals and other organizations that provide health care.

2. WHAT IS NURSING ETHICS? Nursing ethics can mean different things. Used in one sense, nursing ethics refers to the expressed moral norms of the nursing profession: the values, virtues, and principles that the profession believes should guide nurses in everyday practice. These are typically phrased as moral injunctions such as “be truthful with patients” or “respect patient confidentiality.” They may also be expressed as exhortations to adopt and practise particular virtues, such as caring or fairness. As publicly stated by the profession in codes of ethics, these norms serve not only to guide nurses in their practice and identity formation but also to inform the public about what they can expect from professional practitioners. In another, related meaning, “nursing ethics” refers to a body of scholarship and research in books and professional journals that deals with the moral dimension of nursing wherein various ethical issues are analyzed, discussed, and debated. Used in this sense, nursing ethics refers not to the norms of the profession but rather to a field or discipline in which such norms are analyzed and debated.

Introduction | Michael Yeo

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3. NURSING ETHICS, BIOETHICS, HEALTH CARE ETHICS Nursing ethics has developed alongside the much broader phenomenon of bioethics and health care ethics. Bioethics may be defined as reasoned enquiry about the ethical dimension of interventions in the lives of human beings directed to or bearing on their health good, individually or collectively. Health care is an obvious example of such an intervention, and in this regard bioethics is sometimes used synonymously with “health care ethics.” Issues of research and experimentation also are included in the field of bioethics. Several factors bear on the emergence of contemporary bioethics and have influenced the development of health care ethics and nursing ethics (Rodney, Burgess, et al., 2013). The three described below are especially noteworthy. 3.1. Technological Developments Rapid scientific and technological developments presented health professionals with new powers and treatment options, and with these, new ethical issues. The ventilator is a good example. It enabled the prolongation of life (or dying), but with this power difficult ethical questions arose. Equally poignant examples can be drawn from reproductive technology, transplantation, and genetics, to name only some of the more topical ones. Technological developments outpace the capacity of existing ethical norms and present us with more and more confusing grey areas about which consensus needs to be forged through dialogue and debate. Scholars who work in ethics or on ethical issues—ethicists, philosophers, nurses, physicians, and other health care providers—attempt to think critically and systematically about these difficult grey areas in view of emerging evidence. This work contributes toward the goal of improved health and health care for individuals, groups, and society overall. 3.2. Research and Experimentation The negative publicity about gross abuses in research involving human subjects that took place in Nazi Germany and questionable research practices in North America generated considerable discussion about ethics in research (Beecher, 1966, 1959). Should some categories of people—for example, children, captive populations, people who lack mental capacity to decide—be excluded from

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research? What measures and controls will best ensure the voluntariness of research subjects? How do we decide acceptable ratios of benefit to harm, and who should decide on these ratios? Many of the main principles of bioethics such as informed consent, autonomy, and beneficence have been defined and redefined against this background. Significant progress has been made over time in the standards and application of both research ethics and bioethics. 3.3. Consumerism and Patients’ Rights Throughout the 1960s, the idea of consumer education and protection took hold in North America, and the rhetoric of rights became more and more prominent in discussions about matters ethical (Fleming, 1983; Storch, 1982). Increased scrutiny was directed toward the health care system as a locus of considerable power. “Patients” increasingly came to view themselves as “consumers” or otherwise to expect a more active and controlling role in their care. An important landmark occurred in 1973 when the American Hospital Association introduced a twelve-point “Patients’ Bill of Rights,” which was subsequently translated into policy in numerous American and Canadian institutions. The rise of the patients’ rights movement occurred concurrently with rising public distrust of the authority vested in religion, government, scientists, and professionals. Increased scrutiny was brought to bear on the practice of health professionals, and with this came higher standards of public accountability. Many ethical matters once trusted to the discretion of professional authorities came to be designated as public questions. A new ethic emerged and took shape around the watchword “autonomy.” This was in part shaped by a growing cultural and political pluralism in which the values of individual rights and liberties ruled the day. The paternalism long entrenched in the health professions came to be widely criticized. Patients demanded to be more involved in decision-making regarding their health care. Broad legislative changes both reflected and shaped new public expectations about patient involvement in health care planning, the doctrine of informed consent being a prime example of this trend. Whatever public consensus existed on health care ethics was strained as new ethical issues came to the fore and old ones took on a new complexion and urgency. Social developments along these lines opened up the space of questioning within which contemporary bioethics developed. Professional philosophers and theologians brought their traditions and skills to bear on the many ethical

Introduction | Michael Yeo

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questions and issues that were emerging, and health professionals became increasingly interested in moral philosophy and moral reasoning.

4. NURSING ETHICS AND NURSING Several features of nursing have helped to shape contemporary nursing ethics. To begin with the most obvious, nursing has been predominately a woman’s profession, although the gender balance of the profession has shifted and continues to do so. Some authors, building from the premise that women (whether by nature, culture, or both) value such things as nurturing and caring more than men, have argued that an “ethic of care” may be especially appropriate for nursing. This point of view, and the assumptions that inform it, are a matter of debate, as we shall see when we discuss the matter in greater detail in chapter 2. Regardless, there is evidence that nursing, in contrast with the “medical model,” has been more oriented around “caring” than “curing.” Moreover, nursing has tended to work with a broader understanding of health than medicine. This has implications for the kinds of ethical issues that arise and how they are framed. Gender has also been significant as concerns the value that society and other health professionals have attached to the work of nursing. It bears on such important matters as the drive for professionalism in nursing. Historically—and related to gender—nursing has been in a position of subordination in the health care system. It is instructive to recall the motto of the Mack training school for Nurses, the first of its kind in Canada: “I see and am silent” (Coburn, 1987). The situation of nursing vis-à-vis power and decision-making in the health care system has been a focus of attention in nursing ethics since its early days. For example, Yarling and McElmurry (1986) argued that, under existing legal and institutional arrangements, many nurses did not have the freedom or power to practise ethically. The political dynamics of nursing have changed considerably, but in various ways organizational constraints and the distribution of power inform and shape many of the ethical issues nurses face in their daily practice (Rodney, Buckley, et al., 2013; Varcoe and Rodney, 2009). Related to the distribution of power is the fact that many ethical issues arise because nurses often find themselves in institutional situations wherein they have multiple obligations. Notwithstanding the arrival of interprofessionalism and team care based on collaborative decision-making, the legal and

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institutional horizon of nursing is such that nurses sometimes must contend and live with the effects of decisions into which they may have had little or no input, and with which they may disagree. Over the years, the profession of nursing has increasingly emphasized the importance of nurses, individually and collectively, taking active steps to make their practice environments more conducive to practice in accordance with ethical ideals. Another feature constitutive of nursing ethics is what Storch called “being there” (1988, p. 212). Nursing care is less episodic than that provided by other health professionals. In a hospital setting, for example, physicians may come and go but nursing is there for the patient around the clock. Other health professionals tend to get unconnected snapshots of the patient whereas the nurse gets a full-length movie version. The contact between the nurse and the patient is such that many dimensions of the patient’s being are disclosed in the relationship. The duration and nature of his or her contact with the patient make it possible for the nurse to know the patient somewhat more intimately than do other health professionals. This holistic experience of patients bears on a number of ethical matters. For example, it is one thing to witness the distress of someone whom one knows only superficially, and another to witness the distress of someone with whom one has established a closer relationship.

5. MODELS OF THE NURSE-PATIENT RELATIONSHIP The ethical landscape of nursing appears differently depending on how the relationship between nurse and patient is viewed. We will present three main models for thinking about this relationship. 5.1. The Contractual Model Following the contractual model, the nurse and the patient negotiate the moral parameters of the relationship and through dialogue make explicit what each expects from the other. Does the nurse or the patient have any special values likely to come into play in the course of the relationship? How involved does the patient want to be in care planning? What family members or friends are to be consulted should the occasion arise? In the course of discussion, either the nurse or the patient may find that the other has unacceptable

Introduction | Michael Yeo

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expectations or demands. If so, it is best that this be known in advance of any issues that might arise. The shared understanding thus negotiated can be thought of as a kind of “contract” that serves as a guide and reference point for whatever ethical decision-making may be required in the course of the relationship. A shared understanding builds trust in the relationship because each person knows what to expect from the other. It also empowers the patient by creating a sense of control at a time when he or she may be disoriented by illness and by being in a foreign environment. The preference that many nurses have for the word “client” in place of “patient” is in keeping with the empowering spirit of the contractual model, emphasizing as it does the agency of the client/patient and the voluntary element of the relationship.1 5.2. The Patient Advocate Model The role of patient or client advocate has been adopted and endorsed by nursing to a far greater extent than by other health professions. The term “advocate” itself is imported into health care from law. It came into vogue with the emergence of consumerism and the patients’ rights movement in health care. To advocate in the context of health care is often taken to mean advocating on behalf of the patient’s rights, such as the patient’s right to be adequately informed about treatment options or to access information in his or her health record. Patients may not be aware of their rights, in which case advocacy can mean informing or educating patients about their rights. In other cases, such as if the rights of a patient are being ignored or overlooked, advocacy can mean going to bat for the patient or advancing the patient’s rights and interests with one’s colleagues or one’s institution. This can be especially important in the case of vulnerable patients who are overwhelmed by their condition, or the experience of being in an institution in which they are not at home, or who otherwise are not able to speak for themselves. The rights-based model of advocacy has an important place in nursing and can be a valuable corrective in situations where patient autonomy is at risk of being eclipsed by paternalism (someone else imposing upon the patient their beliefs about what is good for the patient), or in which the patient is at risk of 1 We use the term “patient” throughout this book as our default. However, when discussing quotations from sources that use other terms, such as “client” or “individual” or “person,” we use the source’s term in that context.

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being lost sight of in the system. However, rights-based advocacy has shortcomings. The emphasis on rights can overshadow other important aspects of the experience of being a patient. Gadow (1980, p. 84), although sympathetic to the growth of the patient’s rights at the time, criticized the representation of the patient in one-dimensional, abstract terms as a bearer of rights. In place of rights-based advocacy she suggested the term “existential advocacy,” directed to the patient as a whole being. 5.3. The Social Justice Advocacy Model The models we have described to this point are premised on a one-to-one relationship of an individual nurse advocating for an individual patient. While the models capture important dimensions of nursing roles, they do not tell the full story. In particular, they do not address the reality that individual nurses typically work collaboratively with other nurses and health professionals in providing care to patients, and these collaborative relationships can complicate a nurse’s relationship with patients. In some cases too, such as in public health, the nurse does not have a single person as a patient or client but rather a family or even a community on whose behalf he or she advocates. As well, these models do not capture the roles that nurses play in broader social contexts—ways in which nurses undertake to address system-level issues that bear on access to care and quality of care, and on the health of populations. Emphasis on the role of nurses in addressing system-level issues has become increasingly prominent in the profession. For many nurses today, the understanding of what it is to be a nurse and to be an advocate goes considerably beyond relationships with individual patients to include social and political action in the name of social justice and human rights (Anderson et al., 2009; Canadian Nurses Association, 2017).

6. A KNOWLEDGE BASE IN ETHICS FOR NURSING Having described the context in which contemporary nursing ethics has developed, what does all this mean to the individual practising nurse? A helpful way of focusing this question is to ask what knowledge base in ethics is appropriate for nurses. There is room for debate around this question, but the nursing ethics literature reflects consensus around at least three main areas

Introduction | Michael Yeo

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of knowledge and reflection: (1) moral beliefs and values; (2) relevant codes, policies, and laws; and (3) fundamental concepts of moral philosophy. 6.1. Moral Beliefs and Values Through our upbringing and acculturation—the influence of family, peers, and so on—we acquire beliefs about right and wrong and good and bad. Beliefs thus acquired are deeply constitutive of who we are as adults and may manifest themselves in our actions without our ever having reflected upon them. We may not realize how these beliefs express themselves in our lives until challenged by others. The ethical life commits one to bringing such unexamined or unreflected-upon beliefs to light and, having clarified them, to explicitly and responsibly embrace, reject, or modify them. The task of acquiring self-knowledge may also be expressed with reference to “values” rather than to “moral beliefs.” Values clarification is a process of becoming more aware and reflective about the values that have been inculcated in us through various influences. This enables us to decide in a self-conscious way what values we ought to prize and promote, to assess how various practices stand in relation to these values, and to shape our professional identities in accordance with the ethical values proclaimed by the profession. Intervention in the lives of others with respect to matters about which they care and value deeply carries tremendous responsibility. In nursing, such intervention is mandated and legitimized in the name of health and health care. Therefore, health is the most obvious value that matters in the health care context. However, beneficent concern for the health of the patient may come into conflict with several other, sometimes competing values, such as autonomy, truthfulness, confidentiality, and justice. Where values are concerned—where things about which people care deeply are at stake—one whose professional promise is to benefit and respect the patient must acquire a certain facility in moving within the dimension of values. This means, first of all, becoming sensitive to the values dimension of nursing. At every step in the nursing process questions of value should be raised, if only to ask “Are there any questions of value to be considered here?” This is not to say that every nursing intervention, however routine, will raise an explicit ethical issue requiring an explicitly ethical decision. Indeed, few do. But every nursing act, as an intervention in the lives of others, has at least the possibility of promoting or transgressing some good or value.

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The values dimension of nursing, then, is very complex. It encompasses full-blown ethical dilemmas—situations involving two or more conflicting values or principles such that one can be satisfied or realized only at the expense of not satisfying the other—and much more besides. Many situations raise or present ethical concerns but are not necessarily crises or dilemma situations. Whatever the situation, knowing what one values and being sensitive to the values of others as well as related professional values are essential conditions for responsible and ethical practice. 6.2. Relevant Codes, Policies, and Laws A knowledge base in ethics for nursing also includes codified ethics—codes, policies, and laws—as they relate to nursing practice. This includes codes of ethics and various guidance documents promulgated by professional associations, and guidance documents and directives issued by regulatory bodies. Nurses should also be familiar with any relevant policies and protocols issued by the institutions in which they practice, and with law to the extent it bears on their practice. As important as they are, codes, policies, or laws cannot take the place of, or eliminate the need for, ethical decision-making. For one thing, they are bound to be vague or silent about many ethical issues that arise for nurses. Even when they are explicit, the answer that one was simply doing what was mandated by a code, policy, or law is never enough to satisfy the demands of ethical accountability when the moral appropriateness of a particular action is called into question. Ethics is largely about being able to give reasons in defence of what one decides, and this includes even the decision to abide by (or to reject) the injunctions of a given code, policy, or law. Moreover, codified ethics are not absolute or infallible. To take the case of law, an action may be legal, yet unethical from one standpoint or other. Similarly, something that is illegal may be ethically permissible or even required in some values systems. Laws and social norms change over time, as has occurred with MAID. Until recently, a physician or nurse practitioner who assisted a patient to die under any circumstances would have been guilty of a serious criminal offence. Although ethical codes, policies, and laws do not settle an ethical issue in absolute terms, they do furnish a starting point for reflecting on a given issue. They embody the collective wisdom of our profession, institution, or

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community. Although those who bring ethical analysis to bear on an issue may arrive at contrary conclusions, it would be arrogant to do so without having at least considered the codified ethics, policies, and laws on these matters. Moreover, given the authority that stands behind them, the consequences of ignoring or transgressing official edicts can be very grave, and ought to be weighed in the deliberations of a prudent person. On the positive side, codes of ethics, policies, or laws, in addition to providing guidance, can give powerful support and backing for someone working in a setting in which other people are inclined to ignore ethical concerns. Further, such guidance can reduce the uncertainty and/or distress of all health care providers, including nurses. 6.3. Ethical Theories and Fundamental Concepts There is an entire branch of philosophy devoted to ethical theory, which includes applied and professional ethics. These disciplines bring ethical theories to bear on practical issues arising in the professions. We believe that nurses should have at least some rudimentary knowledge of the main lines of theoretical enquiry in ethics and we therefore have included a primer on ethical theory in this book to provide this background. At the very least, nurses should have facility in the use of fundamental concepts by means of which to identify, describe, and analyze ethical issues. The six concepts that form the skeletal framework of this book—beneficence, autonomy, truthfulness, confidentiality, justice, and integrity—have been chosen because they are foundational in nursing ethics. Fortunately, most of these concepts are already part of the ordinary language of nursing, and so education in this area is largely a matter of building on or deepening what one already knows. Ethics, after all, applies to everyone, and everyone has the basic equipment necessary to conduct of a moral life. However, the common-sense usage of moral concepts has many inadequacies. In the first place, these concepts are frequently assigned vague and even contradictory meanings. In moral disagreements people often talk at cross-purposes because they interpret terms and concepts differently. Secondly, moral analysis often comes quickly to a point where two or more positions, each of which expresses a competing value, are at odds. A more philosophical understanding of the fundamental concepts used in moral analysis and the tensions between them can help to sort out confusions, clarify disagreements, and promote creative problem-solving. This is desirable both with respect to the

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nurse’s ongoing commitment to self-examination and his or her desire to do what is right.

6.3.1. The Task of Reflection The three subject areas described above—moral beliefs and values; relevant codes, policies, and laws; main ethical theories and fundamental concepts— constitute a reasonable knowledge base for ethics in nursing. However, acquiring knowledge is not the same as becoming virtuous, except insofar as acquiring knowledge can itself be said to be a virtue. That people are good at the process of values clarification; well-versed in relevant ethical codes, policies, and laws; and well-read in the nursing ethics literature and in moral philosophy, does not mean that they will be good in the sense of acting with virtue. Someone can be well-informed about ethics but insensitive or even cruel. Conversely, someone may be very kind but ill-informed about ethical concepts and moral reasoning. Even so, becoming more reflective in view of the ethical knowledge base that bears on the practice of nursing can facilitate the cultivation of the virtues thought to be desirable for nursing. Such reflection can help nurses to ■ become more sensitive to the ethical dimension of nursing; ■ recognize and identify ethical issues when they arise; and ■ analyze ethical issues more thoroughly (e.g., describe the main arguments that can be deployed on either side of a given issue, bring relevant concepts and principles to bear on options, and so on). The moral life presents itself to us as a task and a challenge, and the task will vary somewhat depending on one’s life situation. This book is specifically designed for people whose life situation is nursing and who face the special kinds of ethical issues that nurses tend to face. A good part of developing one’s professional identity in nursing involves developing one’s understanding of the profession’s ethical dimension. One of the main goals of this book is to facilitate the development and refinement of such understanding. The moral task for nurses, however, is not simply a matter of knowing but also of doing or even becoming, and whether good comes of this knowledge depends on the subsequent activity of the reader who at this very moment is finishing this sentence.

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7. ETHICAL ANALYSIS AND THE NURSING PROCESS In a field of human interaction where values are as pervasive as in health care, it is virtually inevitable that conflicts of value will arise in a nurse’s practice. In any given situation, the beliefs and values of the nurse, of the profession, of the patient, of the patient’s family or friends, of other health professionals, and of society in general may come into play. Sometimes the values of all concerned, or even the nurse’s own values, will not be congruent, and the nurse will be faced with an ethical conflict or issue. The nature of ethical life is such that there can be no mechanical formula for resolving issues when they arise. However, familiarity with the values dimension of the situation, any codified statements that may bear on it, and the main concepts of ethics and the ability to bring them to bear on a given issue can be of considerable help. In this regard, a first point to emphasize about ethical analysis—although hardly much of a help to someone in the throes of an ethical issue—is that big problems usually start off as small problems, and often can be prevented or avoided by thoughtful intervention at an early stage. Thus, it is important to become vigilant about proactively raising questions of values in one’s daily practice. Whatever the nature of the ethical problem, three interrelated components of ethical analysis can be brought to bear: descriptive analysis, conceptual analysis, and normative analysis. Descriptive analysis is directed toward becoming adequately informed about the situation. What is going on in the situation? What are the relevant facts of the matter? What do we know for sure, and what do we need to know to make an informed decision? The task here is to gather whatever information might bear on ethical choice and practice. Such information may include facts about the health status and medical condition of patients, the perspectives of the main agents involved, information about relevant policies and laws, the relationships of power among the stakeholders, and a wide range of other topics. Conceptual analysis has to do with clarifying the meaning of key concepts relevant to the analysis of a given case or issue. In addition to the fundamental concepts around which this book is organized, numerous other concepts also come into play in ethical issues and arise in discussion and deliberation about them. Sometimes these concepts are vague or ambiguous, such as “quality of life,” “euthanasia,” “equity,” “racism,” “rights,” “professionalism,” and may mean different things to different people. Often, concepts are laden with values and

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connotations that may skew analysis of an issue in one direction rather than another. Think of the difference in connotation between the terms “assistance in dying,” “mercy killing,” and “active euthanasia,” each of which may be used to refer to the same act. The task of conceptual analysis is to sort out the various meanings of key concepts and to unpack terms loaded with values and questionable assumptions. What words seem to be at the fore of whatever issue presents, and what do the different people engaged in the issue mean by these words? How might the words used to describe the issue or relevant facts suggest connotations that skew analysis in one direction or another or sidetrack discussion? Normative analysis is directed toward deciding what ought to be done, all things considered. It involves sorting out the various moral values, duties, or principles that may bear on the issue and any decision to be made. What values or duties are in tension or conflict, and how should they be weighed relative to one another? Who among those involved in the case ought to participate in making whatever decisions need to be made? What options are available, and, ethically speaking, what counts for and against the various options? All of the above aspects of ethical analysis are important for making informed and responsible decisions and should be integrated into the nursing process. Indeed, the nursing process itself can be elaborated to furnish a useful framework for ethical analysis, as described below. 7.1. Assessment One of the most important challenges of ethical analysis is to recognize in the first place that an ethical problem or issue has arisen in a particular situation, or that a problem or issue has an ethical dimension. Not infrequently ethical analysis does not get off the ground because those involved do not see the situation or problem as something that has to do with ethics or values. Reporting on their study of nursing ethics, Storch et al. (2009) indicate that “getting participants to recognize the ethical dimension of a situation” was often the necessary first step. As an example they mention an issue concerning a number of new physicians not willing to wear identity badges; the nurses erroneously dismissed this issue as “not being about ethics” (p. 22). Greater familiarity with ethical concepts and typical issues related to those concepts will help nurses develop a sensitivity to the presence of ethical issues that might otherwise go unnoticed or not be identified as such. Ethical analysis can only begin

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when an issue has been identified as ethical, or recognized as having an ethical dimension. If an issue has been identified as ethical or having an ethical dimension, the first step is to work out a reasonable assessment or interpretation of the issue at hand. The emphasis here is on the word “reasonable,” for it is quite likely that one already has a preconceived interpretation to begin with. That the situation presents itself as an “ethical issue” indicates that at least some rudimentary interpretation has taken place. One’s initial interpretation of the ethical situation may be vague, incomplete, or even false. Interpretation in matters of value may be extremely complicated and subtle. Certain questions should be asked by way of testing and deepening one’s initial interpretation of the issue. What exactly is the issue? Is it properly an ethical issue? What kind of ethical issue? What ethical concepts does it bring into play? What are the relevant facts and how clearly are they understood? What additional information may be needed in order to form a responsible interpretation of what is going on? What is the context in which the issue has arisen? What guidance or direction about how to address the issue may be provided by the mission statement of the institution, relevant policy statements, one’s professional code of ethics, legal norms, and so on? What values are at stake? Whose values? Who are the significant people involved? In what terms do they interpret the issue? Are you certain that you know how they view things? Do they understand your point of view? What are the main arguments on the different sides of the issue? What are the relationships of power among those involved and in the roles they play? Are people free to express their views, and do they feel free? Or is there perhaps some degree of coercion in the circumstances of the situation? Such questions must be raised in order to work out a responsible assessment or interpretation. Typically, this includes talking with others and putting questions to them. In the course of working toward an interpretation, one will often find that the issue is based on a misunderstanding or lack of communication. By way of interpreting the issue, it is also important to be as clear as possible about one’s own values. In some instances, one may learn that one is ambivalent about an issue that has arisen. Of course, it is always better to have thought about and decided upon one’s values prior to being thrown into an issue. In part, the purpose of this book is to facilitate such an enquiry into one’s values in a moment of quiet reflection. Even so, sometimes we only discover what our

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values really are (or perhaps discover that we are not as sure about things as we previously believed we were) when challenged with a real-life issue. 7.2. Planning Having arrived at a reasonable interpretation of the situation (or even in the course of doing so), a second step is to identify and plan options. What are the alternatives? Who supports which option and why? What are the main arguments for and against each? Have all of the relevant people been taken into consideration? How much input ought each of those involved have? Who ought to be involved? Do they understand the options? Having sorted out the options, the task then is to weigh them and choose the one that, all things considered, is morally best. Some options will promote certain values more than others. Sometimes the scale will be loaded heavily on the side of one particular option, in which case the decision will be relatively easy. Other times two or more options evaluated in terms of conflicting values may approach being equal in weight, and the judgment between them will be difficult or even anguishing. 7.3. Implementation Having decided on an option, or in order to decide, questions arise about how best to implement the option in a sensitive and effective way. Do relevant others understand why this particular option was chosen? Who should be involved in its implementation? What effects is it likely to have? To what extent can these consequences be managed and negative outcomes anticipated and warded off? Some adjustment of one’s planned course of action may be necessary as one gets feedback in the implementation process (e.g., when unexpected complications arise). 7.4. Evaluation Having implemented an option, in the interests of learning from experience and ensuring effective care, one should review how the process unfolded and what happened. How are things working out? To what extent are they working out as anticipated? How do those involved (and especially the patient) feel about how things turned out? Does the issue have any broader dimensions

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(e.g., implications for institutional policy) that should be addressed in light of what happened? Is there anything that can be done to manage such issues better in the future? Questions about process should also be raised. Is the process by which the decision was made a good one? Could better procedural mechanisms be established to facilitate future decision-making? 7.5. Usefulness of Frameworks for Ethical Analysis and Decision-Making Incorporating ethics into the nursing process is a good way of ensuring ethical practice, and using the nursing process as a framework for analysis is a good way of working through an ethical issue that has arisen. Other frameworks for moral reasoning and decision-making for nurses are available, and not surprisingly they tend to agree in essentials. The key thing is to ask the questions that need to be considered. Decision-making requires judgment, and judgment guides the use of any framework as much as it may be guided by it.

8. CASE-BASED LEARNING The intended audience of this book includes not only nursing students but also nurse educators, practising nurses, and students or practising members of other health professions. The case method adopted in this book has proven itself a useful and effective way to learn about ethics and develop one’s professional identity. Cases help us see how the concepts and tools of ethical analysis apply in concrete ways. Moreover, whereas ethics in the abstract can be somewhat dry, cases engage our interests directly and can make for lively discussion. The ways in which cases may be used in educational contexts are limited only by the imagination of the educator, but two main strategies are particularly worth mentioning. One strategy is role playing. This promotes a fuller and better understanding of different, and sometimes competing, points of view and the arguments in support of different positions, including our initial point of view on the issues raised by the case. A second strategy is the classical debate format. This involves having different learners defend and argue for different sides of the issue. This may be especially appropriate when the issue is a genuine dilemma, and one about which a group or a class is itself divided. Another variation on this strategy is

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for someone to assume the role of “devil’s advocate,” defending the position that appears weaker or less popular. In addition to these general strategies, a number of techniques can be used to facilitate discussion. Sometimes it is instructive to vary the facts of the case (e.g., change the setting from a hospital to a patient’s home, modify details about the patient’s medical condition, reverse genders, and so on). Such variations may throw new light on the issue and help to clarify the values and concepts involved in the analysis. Another technique is to imagine other cases that are similar, or other situations in which the same issue arises with a perhaps slightly different twist. This helps develop flexibility in applying the concepts and values under discussion. Above all, it is important to relate the case, or the issue raised by the case, to one’s own experience. Ethical analysis, after all, is little more than a game if one does not integrate what one has learned or come to know into one’s own life and practice. In the chapters that follow, we provide both theoretical and practical guidance to integrate learning about ethical nursing practice.

REFERENCES Anderson, J.M., Rodney, P., Reimer-Kirkham, S., Browne, A.J., Khan, K.B., & Lynam, M.J. (2009). Inequities in health and healthcare viewed through the ethical lens of critical social justice: Contextual knowledge for the global priorities ahead. Advances in Nursing Science, 32(4), 282–94. Beecher, H.K. (1959). Experimentation in man. JAMA, 169(5), 461–78. Beecher, H.K. (1966). Ethics and clinical research. The New England Journal of Medicine, 274(24), 1354–60. Canadian Nurses Association (CNA ). (2017). Code of ethics for registered nurses. https://www.cna-aiic.ca/-/media/cna/page-content/pdf-en/code-of-ethics-2017edition-secure-interactive.pdf Coburn, J. (1987). “I see and am silent”: A short history of nursing in Ontario, 1850–1930. In D. Coburn, C. D’Arcy, G.M. Torrance, & P. New (Eds.), Health and Canadian society: Sociological perspectives (2nd ed., pp. 441–62). Fitzhenry & Whiteside. Fleming, J.W. (1983). Consumerism and the nursing profession. In N.L. Chaska (Ed.), The nursing profession: A time to speak (pp. 471–78). McGraw-Hill.

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Gadow, S.A. (1980). Existential advocacy: Philosophical foundations of nursing. In S.F. Spicker & S.A. Gadow (Eds.), Nursing: Images and ideals (pp. 79–101). Springer. Rodney, P., Buckley, B., Street, A., Serrano, E., & Martin, L.A. (2013). The moral climate of nursing practice: Inquiry and action. In J.L. Storch, P. Rodney, & R. Starzomski (Eds.), Toward a moral horizon: Nursing ethics for leadership and practice (2nd ed., pp. 188–214). Pearson-Prentice Hall. Rodney, P., Burgess, M., Phillips, J.C., McPherson, G., & Brown, H. (2013). Our theoretical landscape: A brief history of health care ethics. In J.L. Storch, P. Rodney, & R. Starzomski (Eds.), Toward a moral horizon: Nursing ethics for leadership and practice (2nd ed., pp. 59–83). Pearson-Prentice Hall. Storch, J.L. (1982). Patients’ rights: Ethical and legal issues in health care and nursing. McGraw-Hill Ryerson. Storch, J.L. (1988). Ethics in nursing practice. In A.J. Baumgart & J. Larsen (Eds.), Canadian nursing faces the future: Development and change (pp. 211–21). C.V. Mosby. Storch, J., Rodney, P., Pauly, B., Fulton, T.R. et al. (2009). Enhancing ethical climates in nursing work environment. The Canadian Nurse, 105(3), 20–26. Varcoe, C., & Rodney, P. (2009). Constrained agency: The social structure of nurses’ work. In B.S. Bolaria & H. Dickinson (Eds.), Health, illness, and health care in Canada (4th ed., pp. 122–50). Nelson Educational Ltd. Yarling, R.R., & McElmurry, B.J. (1986). The moral foundation of nursing. Advances in Nursing Science, 8(2), 63–73.

CH A P T E R 1

A PRIMER IN ETHICAL THEORY It is the mark of an educated mind to expect that amount of exactness in each kind which the nature of the particular subject admits. —Aristotle

This chapter surveys main lines of analysis and argument in ethical theory with a view to how they can be applied to practical moral issues that may arise in professional life. Having at least a rudimentary understanding of ethical theories will help the reader in the analysis of concepts and cases discussed in the chapters that follow. The idea is not that when confronted with an issue we apply the theory and that theory tells us what we ought to do. In the first place, a given theory may not yield a definite answer as concerns what we ought to do in a given situation, or it may suggest more than one viable answer. In the second place, there are several theories. Even if each furnished a definite answer, we would still have to decide which theory to apply. The reader should think of the ethical theories we survey as aids to, and ways of reflecting on, moral issues and on his or her own moral values. To apply an ethical theory is to analyze and reflect on a given issue from the perspective of that theory. Different theories bring different aspects or dimensions of an issue to light. Applying an ethical theory, and even more so applying different ethical theories, can deepen and broaden our understanding of an ethical issue and help us to clarify our values and responsibilities.

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1. MORALITY AND THE SENSE OF “ OUGHTNESS” A key defining feature of morality is a sense of oughtness. When we judge that some action, decision, or policy is right or wrong, or good or bad, we do so from the point of view of what ought and ought not to be. Consider the following sorts of moral judgments a nurse might make: Mr. A. has a right to be involved in deciding his plan of care. Nurse B. needs to be more respectful in the way she talks with patients. You must provide care to Ms. C. without bias, even though she incurred her injury in an impaired driving accident in which two people were killed.

As different as these statements are, they are all normative in that the words italicized express, more or less directly, a norm about how someone ought to be or act. The assertion that Mr. A. has a right to be involved in deciding his plan of care means that his caregivers ought to involve him. To say that someone needs to be more respectful means that they ought to be so. To say that care must be provided without bias means that it ought to be. The ought expressed in these statements is a moral ought. The moral ought is different from non-moral uses of the term “ought,” as in the statement: “You ought to get to bed early if you want to be alert for the exam tomorrow.” In this instance, what you ought to do is conditional upon some end or goal that you wish to achieve. “If you want to be alert so you can do well on your exam, then you ought to go to bed early.” Ought in this non-moral sense has to do with the means to an assumed end—doing well on the exam. By contrast, a moral ought does not have any such “ifs” attached to it. It is not that you ought to respect the patient if you wish to be liked by him or her, or if you wish to avoid getting into trouble, or anything of the sort. These may be good reasons for respecting the patient, but they are not moral reasons. The moral ought enjoins you to respect the patient simply because you have a responsibility, obligation, or duty to do so—simply because it is what you ought to do. This sense of oughtness is a common feature of moral experience. The language in which we articulate and codify it includes terms such as rights, duties, responsibilities, values, and obligations—all of which are rooted in our sense

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of what ought and ought not to be. This is true also of moral virtues, such as honesty, courage, and integrity, which are qualities of character that we believe are morally good or that people ought to have and with which they ought to act in accordance. Whatever terms we use to express them, moral judgments and evaluations ultimately amount to claims about how someone ought to be or act. They embody moral norms or ideals. These norms or ideals can be expressed as rules or principles—“One should respect the patient’s autonomy”—or as virtues or ways of being—“One ought to be respectful.” In whatever way they are expressed, such norms or ideals are the basic elements of morality and shape moral life in two main ways. Firstly, they guide us in our conduct and decision-making as we find ourselves in situations in which they are applicable. Secondly, we use them to evaluate conduct and decision-making, whether our own or that of someone else. For example, to say that a nurse who deceives a patient about a prognosis has acted wrongly is to evaluate his or her conduct negatively in light of some such norm or ideal such as, “Nurses ought to be truthful with their patients.”

2. MORALITY AND ETHICAL ANALYSIS Morality is pervasive in our lives. If you think back on any given day of your life, chances are that you will have made several moral judgments and choices during that day: at work, at home, at play, and in your relationships with colleagues, friends, strangers, and family members. Most of the time, we get by without making the moral dimension of what we do explicit. Sometimes we do not even recognize that a situation has a moral dimension. Moreover, in many situations we do recognize as morally charged, what is morally required is relatively obvious. However, in many instances, especially in health care, moral issues arise very acutely and are not easily resolved. Several factors contribute to moral complexity. One factor is that people sometimes disagree about moral norms and ideals. For example, not everyone would endorse the ideal that the public ought to be actively involved in deliberations about options for health reform. Some believe that the public is not sufficiently knowledgeable about the subject to make wise decisions, or is prone to choosing with its heart rather than its head. According to this point of view, it is better that experts make the decisions.

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A second complicating factor is that, even among those who agree about a particular norm or ideal, there may be disagreement about how it should be interpreted or applied in a given situation. For example, some would argue that the ideal of public participation means that the public ought to be involved in details regarding the amalgamation of several health services, whereas others would argue it is enough that the amalgamation proceed consistently with public values broadly construed. A third complicating factor is that moral norms or ideals sometimes conflict with one another. In some situations it may be difficult or impossible to satisfy all relevant principles at the same time. Suppose, for example, that a health agency is committed both to the ideal of public participation and to the ideal that resources should be allocated in such a way as to yield maximum benefit for every dollar expenditure. If the public preferred an allocation option that would not yield as much benefit as some other available option, these two ideals would be in conflict. Problems of the sort identified above indicate the need for careful reflection and analysis about morals and moral issues. This is the province of ethics. If morality can be conceived as a set of norms or principles or ought statements—a list of dos and don’ts about how to act or to be—ethics, by contrast, is reflective analysis about, or using, those norms or principles. Everyone has morals according to which they are guided or judge themselves and others. Whether the morals that they have are good ones is a different matter. As the old adage has it, “There is honour even among thieves.” Ethics, by contrast, is a process of analysis and reflection that can be more or less critical of whatever morals someone holds. Ethics—careful and systematic reflection and analysis about moral norms or ideals and how they bear on practical issues—is important and useful for a number of reasons: ■ Moral norms, ideals, or principles are sometimes vague or unclear. Ethical reflection helps us to identify, articulate, and clarify them and sensitizes us to the pervasiveness of moral issues in our lives. It helps us to be explicit about our moral choices. ■ People often endorse moral norms, ideals, or principles without justification for them. Ethical reflection helps us to deepen our understanding of moral ideals and principles and the reasons that can be given against and in support of their application in a given case.

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■ In some situations, moral norms, ideals, or principles conflict with one another. Ethical reflection helps us to understand the basis of such conflict and what is at stake in a given issue. ■ Working through a process of ethical analysis helps ensure that all relevant considerations are entertained prior to making a decision, and that the decision subsequently reached will be a morally principled and rationally defensible decision. Having distinguished morality and ethics as we have, it is important to note that these two terms can also be used interchangeably. Indeed we do so throughout this book. The key point is to recognize that there is a distinction between simply holding a moral (or ethical) belief or value, on the one hand, and undertaking a process in which such beliefs and values are subject to careful examination, reflection, or analysis.

3. ACCOUNTABILITY AND MORALLY PRINCIPLED DECISIONS One of the defining features of the health professions is the trust on which relationships with patients is based. This trust increases the burden of responsibility for health professionals and makes it all that much more important for them to be explicit about their moral choices and the principles and values informing those choices. When we act in trust, we act on behalf of someone or some group and are accountable to them for what we do, even if we are additionally accountable to others in our institutional or employment setting. Power, knowledge, and vulnerability are not evenly balanced in the patient-professional relationship. People acting in positions of trust have considerable power to cause harm or good. Moral norms, ideals, or principles, especially in a pluralistic society such as ours, are something about which reasonable people may disagree. Almost always people will agree that some decisions are clearly “wrong.” However, in many cases, it is not clear or agreed which, from among several live options, is the “right” decision. If the plurality of points of view in our society means that not every decision has a morally right answer, this does not mean that anything goes. Being morally accountable does not mean that one will always make what others believe is the “right” decision. But it does mean being able to defend and justify whatever decision one makes.

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Thinking about moral decision-making from the standpoint of defending and justifying one’s decision to others helps us to focus the task of ethics. Ethical analysis and reflection are in the service of being accountable for our choices. When pressed to defend a decision or a policy, answers such as “I didn’t really notice that there was a moral issue there at all” or “I just went on my gut feeling” are not good enough. The person to whom we are giving an account for our decision is likely to ask such questions as “Did you consider and weigh the moral values or principles at stake?” and “Did you think about the alternatives and consequences?” Given the realities of busy schedules and decisions that have to be made immediately on the spot, often we do not have the time to be as thorough in ethical analysis as we might otherwise like to be. However, although the real-world pressures on decision-making are formidable, they are no excuses for failing to make morally defensible decisions. The person to whom an accounting is owed is unlikely to be satisfied by the answer “I didn’t have time to think about that.” Ethical analysis and reflection should not be viewed as something that one brings into play only in the thick of some crisis or other. The best occasion for ethical analysis and reflection is not in the middle of an issue but in an atmosphere of relative calm. In such moments one can clarify the moral values or principles relevant to one’s role and explore how they bear on the typical sorts of issues one is likely to face in the discharge of one’s responsibilities. If one has given sufficient thought to moral norms and ideals, one will not be starting from scratch when one finds oneself in the thick of a moral issue. The relevant moral norms, ideals, or principles will be more readily apparent and their application to options and alternatives will be clearer. Ethical analysis is no guarantee that we will make the right decision (there may not be one), but it will at least help us to make morally principled decisions—decisions we can justify with reference to the moral ideals and principles at stake, and defend if called upon to give an accounting.

4. ETHICAL ANALYSIS AND ETHICAL THEORY Ethical analysis is a matter of examining our opinions about right and wrong and probing the moral norms, ideals, or principles that bear on moral judgment and evaluation. This typically involves such things as identifying the principles or values relevant to a given issue and evaluating options for action

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in light of these principles or values. Thus understood, ethical analysis is integral to responsible moral life. All of us engage in it at least to some degree. Theorizing about ethics, by contrast, takes ethical analysis to a greater depth. It probes the foundations of our moral beliefs and of morality. Ethical theory attempts to systematize moral intuitions, values, and principles in a consistent framework or to root them in a common ground. Ethical analysis tends to focus on a particular moral issue of concern, whereas ethical theory operates at a more abstract or general level. Ethical theories purport to say something about how in general or as a rule we ought to be or behave and to furnish reasons why we should act or be one way rather than another. They systematize our intuitions and unreflective feelings about “oughtness.” The challenges of acquiring facility in ethical theory are considerable. It is a specialized and technical academic discipline within the general discipline of philosophy. When philosophers use the term “ethics,” often they are referring to this academic discipline or field of study. Many of the key works in this field are written by and for philosophers and presuppose considerable knowledge about the main ideas and lines of debate in philosophy. Ethical theorists disagree among themselves about the nature of ethical theory, its practical relevance, the relationship between ethical theory and moral action, which ethical theory is most worthy of our assent, and about a host of other issues. Different ethical theories point to quite different and sometimes quite contrary conclusions about what to do in a given ethical situation. Given these difficulties, some nursing ethicists question the usefulness of ethical theories for nursing ethics (Allmark, 2005; Peter & Liaschenko, 2003). Our view is that acquaintance with ethical theories can help us to clarify our moral beliefs and values. It can both broaden and deepen ethical analysis and reflection in relation to ethical issues that may arise. What we mean by ethical theory is a theory that is in at least some sense action-guiding insofar as it argues for particular ethical norms and ideals applicable to moral issues and decision-making. Even if applying a given ethical theory does not yield a single or definite answer about what we ought to do or how we ought to decide an issue, it will at least aid us in the process of ethical reflection and analysis. Ethical theory in this action-guiding or reflection-guiding sense is sometimes called “normative ethical theory,” to distinguish it from other types of theory having to do with morality, such as theories about the nature of morality itself. Before we go on to describe some of the main ethical theories of relevance to nursing ethics, in the following section we

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will discuss some theories about morality (as opposed to ethical theories) that raise skeptical doubts about the validity of ought judgments and moral ideals.

5. THEORIES ABOUT MORALITY In this section, we describe four theories about morality that call into question the very possibility of ethical theory, and indeed the possibility of valid moral judgments. These skeptical theories—egoism, emotivism, relativism, and might makes right—are not very useful for thinking about how we ought to act and be—indeed, they undermine the sense of moral “oughtness” and the moral point of view altogether. However, they do capture important insights about how people sometimes are and act (as opposed to how they should be and act, which is what ethical theory deals with), and do point, even if only indirectly, to important features of moral life in community with others. 5.1. Egoism Egoism is the theory that the only motive for human behaviour is self-regard or self-interest. It takes this to be a general truth about human nature or human psychology. Egoism does not say that what people do always is in fact in their own best interests. That would obviously be false. People occasionally do things that are manifestly self-destructive. The egoist claims that in such cases the person is nonetheless motivated by self-interest, but mistaken about where his or her interests lie, or unable to subordinate immediate gratification to long-term gains. The bottom line for the egoist is that we are self-interested in everything we do, but not necessarily wise about what our best interests are or disciplined enough to act consistently with them. The main fact about human behaviour that seems to contradict egoism is that we sometimes do things that appear to be motivated by selfless moral ideals or concern for others. Sometimes we do something just because we believe it is our duty, perhaps even at considerable personal expense. We make sacrifices to help someone else out. How can egoism be upheld in the face of such examples? The egoist grants that in some cases it appears that people are acting selflessly, but advances that this is really a deception, or a self-deception. According to the egoist, someone who acts in a way that is apparently selfless is really acting on the basis of some hidden, self-serving motive, even if only

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the desire to feel good about seeming to act selflessly, or to impress others with a show of virtue. It is impossible to disprove such a sweeping claim about human psychology and motivation. However, it is also impossible for the egoist to prove it. The egoist’s thesis is a postulate that can be neither confirmed nor refuted by experience. As such it does not undermine the “oughtness” that is crucial to the very possibility of morality. In order to establish morality on a solid foundation, it is enough to establish that we do indeed experience a sense of “oughtness” and are able to distinguish experientially between moral motives or reasons and those that are merely in the service of our self-interest. Moreover, if the demands of morality and the demands of self-interest— duty and inclination, or what morally speaking we should do and what we think would best serve our interests—sometimes conflict, they do not always. Although being moral requires a willingness to subordinate self-interest to duty, in many and perhaps even most moral situations there is a convergence between our obligations and our interests. 5.2. Emotivism Emotivism is the theory that moral beliefs and ideals are a kind of reflex of our psychological makeup. They merely express personal preferences, likes, and dislikes. In this respect, they are akin to judgments of taste, for example: “I like peas”; “She finds broccoli disgusting.” Such expressions of preference tell us something about the likes and dislikes of the person expressing them, but nothing about the nature of peas or broccoli. For emotivists, the same is true of moral ideals and judgments. Someone who expresses a moral belief about the rightness or wrongness of some action or practice (e.g., sale of organs, assisted death, etc.) is merely telling us about his or her preferences, and nothing about the objective nature of the action or practice. To say that selling organs is wrong doesn’t tell us anything objective about selling organs but it does tell us something about the person who says this—that they don’t like it. Just as someone who says that “peas are good” really means and says nothing more than “I like peas,” someone who claims that selling organs is wrong really means and says nothing more than “I do not like the idea of selling organs” or “I feel that it is wrong.” According to the emotivist, in both cases what at first glance appears to be an objective statement is a disguised statement of preference. The belief merely reflects or expresses the subjective preference of the person holding it and contains no information about the objective state of affairs.

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In defence of emotivism, it is true that moral judgments vary from person to person and sometimes reflect, in an obvious way, the psychological makeup and conditioning of the one doing the judging. Moreover, such information as they contain is clearly not objective, or at least not in the same way that factual information is. To say that abortion terminates the life of the fetus, or that the procedure involves risks of such and such a kind, is a statement of fact. It tells us something about the act or practice, and what it claims can be proved or disproved by scientific study. To say that abortion is wrong (or right), however, tells us nothing objective, or at least nothing that could be proved or disproved in the manner of a factual claim. However, it does tell us something about the person making the claim, and for the emotivist that is all the information it contains. The emotivist is certainly right that value judgments do not have the same status as factual claims. However, this does not warrant the conclusion that value judgments are therefore merely subjective, or nothing more than expressions of preferences. The critical feature of moral ideals and value judgments that emotivism fails to account for is that they are amenable to rational discussion and persuasion in a way that mere preferences or judgments of taste are not. We expect and even demand that people give reasons to support their moral judgments. We debate and argue about moral ideals. We seek to persuade others about the reasonableness or unreasonableness of a particular moral belief. It is true that people do not always come to agreement in the course of such persuasion and argumentation, but they sometimes do. And even when they don’t, they do not therefore abandon rationality as the standard by which moral beliefs are to be arbitrated. 5.3. Relativism Relativism holds that moral ideals and beliefs derive from and are reducible to the conditions under which they originate. They are a product of upbringing and conditioning, at best conventions that have developed within a particular society or group. As such, they are not valid always and everywhere for everyone but only relative to time, place, and person. What is right for one time, culture, or person, may not be right for another. Cultural relativism is the doctrine that moral beliefs a) are rooted in particular cultures, and vary from one culture to another, and b) have scope or validity only in the culture from which they derive. The first claim is undoubtedly true.

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Anthropologists debate whether or to what extent some moral beliefs are invariable or constant across all cultures, but examples of when they do vary from one culture to another can be produced at great length. It is also true that societies inculcate moral ideals and beliefs in their members through various types of conditioning, including education, religion, and media. The second claim, however, is questionable and warrants careful analysis. Against the thesis that at least some moral beliefs are valid and binding always and everywhere and for everyone, the relativist asserts that moral beliefs have only local validity, to the extent that they have any validity at all. There is no universal standard by means of which to evaluate moral beliefs. Something that is morally permissible in one society may be forbidden in another, and there are no grounds upon which one could say that one of these cultures is right and the other is wrong. One implication of this theory is that it is inappropriate to pass moral judgment on, or seek to modify, someone else’s moral beliefs rooted in their cultural background. An example currently the subject of controversy may help focus the issue. Female cutting, which is often referred to as genital mutilation, is practised today in certain parts of the world and thought to be morally acceptable, if not mandatory (although many people in these societies do not agree with the practice). In Western societies, on the other hand, and in most non-Western societies as well, the practice is generally thought to be abhorrent. For the relativist, it makes no sense to ask which point of view is really morally right or best. There is no standard outside of the plurality of cultures and points of view from which to judge the morality of practices within different societies and cultures. The relativist would argue that although a given society may be justified in condemning the practice among its members according to its culturally conditioned moral values, there are no grounds upon which to condemn the practice in other societies that permit it according to their culturally conditioned moral values. To condemn the practice in other cultures, the relativist argues, would be to falsely claim universal and absolute moral validity for one’s own culturally and historically derived morality. It would be to use the lofty rhetoric of morality to impose one’s culturally specific beliefs and values on others. This is the charge brought against colonial societies, including Canada, in relation to the Indigenous populations they have colonized. History does indeed record many examples in which one culture arrogantly imposes its will upon another under the pretense that its own beliefs have privileged status and are universally valid. Moreover, even within a given country,

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moral beliefs change over time. What was thought to be morally acceptable or right at one time (e.g., slavery and discrimination) becomes morally wrong at another; what was thought to be morally wrong (e.g., assisted suicide) becomes morally acceptable or right. In this regard, relativism may promote a spirit of humility about our moral beliefs and judgments, and respect for others with different points of view. That is a good thing, or at least, is believed to be a good thing in contemporary health care, in which the commitment to respect the autonomy of patients means respecting (but not necessarily agreeing with) the patient’s values when those values conflict with one’s own. However, as a general theory about morality, relativism is untenable, and for reasons similar to those pertaining to emotivism. The thesis that an ought statement holds true (to the extent it holds true at all) only for those people who have been brought up or conditioned to accept it is incompatible with the sense of oughtness that at least some moral judgments have in our ordinary experience. For example, when we say that it is wrong to withhold from someone bad news about a medical diagnosis, we do so in the belief that there are good reasons why it is wrong, and that these reasons ought to be persuasive for everyone and anyone. Whether they actually are is a different matter, and in some societies withholding such information is commonly accepted. Moreover, notwithstanding the great diversity among cultures with respect to moral beliefs, there are principles that virtually all societies endorse, such as those expressed in the Universal Declaration of Human Rights (United Nations, 1948). 5.4. Might Makes Right According to the theory that “might makes right,” moral norms and rules merely express and serve the will of those in a position of power to make and enforce them. Ultimately, morality reduces to power. As a well-known parody of the golden rule puts it, “Those who have the gold make the rules.” This theory holds some plausibility as a description of how things often happen in the real world. Most of us can probably recall moral situations in which, at the end of the day, the interests and values of those in a position of power prevailed just because they were able to assert their power. Nurses, who historically have not wielded much power in hospitals, sometimes complain about how much control hospital administrators and physicians have over decision-making, and how this power sometimes expresses itself and prevails when it comes to making moral rules and settling moral conflicts.

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However, to acknowledge that “right” is often decided by “might” is not to justify this, or to accept that this is how things ought to happen. From a moral point of view, right ought not to be decided by might but rather by good reasons, and we should feel indignant when right is decided by might, and might alone. The world is far from perfect, and the institutional arrangements under which nurses practise are often less than ideal. It would be naive to underestimate the reality and force of power and politics, especially in a field as rife with conflict and competing interests as health care. However, it is important to realize that the demand for moral justification can never be satisfied by appeals to power, or to the way things tend to happen. Moral justification requires reason. Power or might is indeed something to be reckoned with, but it is never by itself a moral justification.

6. ETHICAL THEORIES Each of the theories about morality sketched above contains some elements of truth. Self-interest is undoubtedly an important factor in motivation. Moral judgments are deeply rooted in our emotional life. There is a good deal of relativity in morals from one society to another, in one society from one time to another, and from one person to another within a given society. History records many examples in which moral rules reflect and entrench the interests of those who have the power to make the rules. However, these theories about morality fail to account adequately for what is most fundamental to morality and the moral point of view, namely, our experience of “oughtness.” In some instances, we feel torn between the pursuit of self-interest, on the one hand, and our sense of duty, on the other. We are sometimes able to distinguish mere emotional response to an issue from what, upon reflection, we take to be a more properly moral response backed up by good reasons. About some things at least, we reserve the right to criticize the conventions and moral rules deemed authoritative in a given society, whether our own or that of someone else. And notwithstanding that all too frequently it happens that what is right is decided by might, we nonetheless pass moral judgment on this state of affairs and assert that things ought not to be such. In the final analysis, our sense of oughtness is incompatible with the view that right and wrong are reducible to self-interest, preferences, cultural differences, or power. To satisfy this sense of oughtness, it is not sufficient simply

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to assert moral judgments. We expect moral judgments to be justified. We demand reasons in support of moral claims and accept that it is reasonable for others to demand reasons from us. It is in the search for deep reasons upon which to ground moral claims that ethical theory comes into play. Ethical theory begins from the fact that moral judgments and evaluations have a quality of oughtness, which binds people regardless of their interests, emotional feelings, opinions inculcated by societal conditioning, or power to enforce their will upon others. Ethical theories seek to articulate deep reasons or rationales for judgments about how we ought and ought not to act or to be. There are many varieties of ethical theories. For our purposes, it will be helpful to group them under six main headings: deontology, consequentialism, virtue ethics, the ethic of care, feminist ethics, and relational ethics. 6.1. Deontology (Duty-Based Ethics) The word “deontology” derives from the Greek word for duty. Deontologists conceive of morality as a system of moral duties, principles, rules, or imperatives. The task of the moral agent is to discern what his or her duties are, and to act consistently with, and in the spirit of, those duties. But how do we know what our duties are? Immanuel Kant (1724–1804), the most prominent deontologist, believed that all our duties derive from a fundamental imperative binding on any rational being. He called this the “categorical imperative,” which he formulated as follows: “I ought never to act except in such a way that I can also will that my maxim should become a universal law” (1785/1964, p. 70). This is less complex than it sounds at first hearing. Think of the categorical imperative as a kind of test. Faced with a decision, Kant is saying, formulate the rule (in his terms, “the maxim”) on the basis of which you are proposing to act. Then ask yourself whether it would be reasonable if anyone and everyone acted on the basis of this same rule. If it would not be reasonable to “universalize” this rule—to apply the same rule to anyone and everyone—it fails the test and is not an appropriate rule for moral action. An example will help to clarify this test. Suppose you are considering telling a lie in order to cover up a mistake you made with a patient. The maxim or rule here might be expressed as follows: “It is permissible to lie in order to conceal one’s error.” If everyone were licensed to lie in order to cover up

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their mistakes (if the rule were made universal law), the fundamental trust upon which the health care system is based would be undermined. Such a rule would not pass the test of “universalizability” and therefore would not be morally defensible. The rule that one should tell the truth, on the other hand, does pass the test. Kant emphasized that the categorical imperative is not imposed upon us from without. No one has to tell us what our duty is, or can rightfully impose a moral duty upon us. Insofar as we are beings of reason, each of us is able to comprehend directly what our duty is. To yield to the categorical imperative is not to yield to the will of another but rather to yield to the law of universal human reason, the law of our own reason. This point is of crucial importance for understanding Kant’s concept of autonomy. For Kant, autonomy meant submitting oneself to a law that one gives oneself. The moral law, the categorical imperative, is self-given, since one “discovers” it as the law of one’s reason (which is the same for everyone). To be autonomous is to act in accordance with the demands of reason. When the notion of autonomy is invoked in health care ethics, it usually means the patient’s right to make his or her own decisions, particularly in the matter of treatment options. This is related to Kant’s usage insofar as it is based on the belief that each adult person is responsible for his or her own life, and no one can rightfully usurp this responsibility. However, for Kant autonomy entailed something more than the right to make decisions for oneself. It also entailed the duty to decide in accordance with the demands of reason. Thus for Kant autonomy does not mean doing what one desires, or succeeding in having one’s will prevail. The person driven by desire is no more autonomous in Kant’s sense than is the person under the compulsion of another’s will. It is not doing what we desire that makes us autonomous but rather doing what, on the basis of reason, we know to be the right thing. Desire provides a powerful motivation for human behaviour but it is not a moral motive. The moral question “What is the right thing to do?” is not reducible to the question “What will best satisfy my desires or interests?” The right thing to do—what duty requires of us—is right regardless of whether it happens to coincide with our desires or interests (i.e., it is “categorically” right). What makes something right is its conformity with the categorical imperative, its quality of being morally binding for beings governed by reason. In some instances at least, what duty requires of us may not match our desires or self-interests. Even when they do coincide, it is still important for

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Kant that duty, and not desire, be the motive for our action. Accordingly, he distinguished between acting from duty (motivated by willingness to do one’s duty, just because it is one’s duty), and acting in accordance with duty (doing the right thing, but not necessarily for the right or moral reason). Our moral worth involves doing the right thing (what duty requires) for the right reason (just because it is our duty). Much of what Kant says, although expressed in a terminology that is difficult for the non-philosopher to understand, rings true to our common and philosophically untutored experience of morality. Indeed, Kant claimed that the categorical imperative expresses in a formal way the moral grounds upon which people act whenever they do act morally. Someone who asks “But what if everyone acted that way?” is expressing the basic logic of the categorical imperative. The same is true when someone asks “What if the roles were reversed and someone did to me what I am considering doing to them?” Kant’s categorical imperative can be employed as a test for determining and assigning moral rights as well as duties. To determine whether a claimed moral right is indeed morally valid one asks whether the right in question is universalizable. Moral claims expressed in terms of duties can also be translated in terms of moral rights. The statement that a nurse has a duty to tell the truth can be otherwise expressed as a claim about what is owed to other people (e.g., Mr. Smith has a right to know the truth). A common criticism of Kant’s theory is that he does not adequately address the problem of moral conflict. The main conflict Kant focuses on is between duty and inclination or self-interest. Kant has good reason to focus on such conflict, which everyone will recognize from their own moral experience when they feel torn between doing what they know to be right and doing what they are tempted to do to serve or protect their interests. However, the most vexing moral conflicts are not between duty and self-interest but rather between one duty and another, or one right and another. What do we do in a situation when more than one duty comes into play, each of them pulling us in an opposite direction? Kant offers no guidance here because he believed that the categorical imperative furnished a clear and unambiguous test to determine our duty and that, if the test were properly done, there could be no conflict of duties. On this point, Kant’s theory appears not to fit well with our experience of being morally conflicted. In response to this limitation, commentators otherwise sympathetic to Kant have modified his theory to allow for a plurality of duties. This theory

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is called “pluralistic deontology,” in contradistinction to Kant’s theory, which reduces all duties to a single source or principle (the categorical imperative). W.D. Ross was the most famous exponent of this view. Ross (1930) identified seven independent duties (nonmaleficence, beneficence, fidelity, reparation, gratitude, self-improvement, and justice), each of which carries some moral weight. Although Kant would no doubt endorse the duties on this list, he would claim that ultimately they can be reduced to a single principle. Ross, on the other hand, believed them to be irreducible. Ross thus allows for the possibility of a genuine conflict between moral duties, which conflict cannot be resolved by reference to any overarching principle such as the categorical imperative. Another problem critics find with Kant’s theory is its rigidity. For Kant, moral rules are binding regardless of the consequences that following these rules might have in a given instance. Consider the issue of disclosing potentially harmful information to a patient about his or her prognosis. Some might argue that whether telling the truth is the right thing to do will depend upon whether on balance the truth will do the patient more harm than good. For Kant, however, the question of rightness in this and other situations is to be decided independently of the projected consequences of the action. And Kant would say that the right thing to do is to tell the truth. His advice, so to speak, would be “Do the right thing, though the patient should perish.” 6.2. Consequentialism Whereas for Kant the test or standard of moral rightness is conformity to reason or the categorical imperative, for consequentialists moral rightness depends on the good or benefit that arises in consequence of action. Moral decision-making is a matter of projecting the consequences of various action alternatives and selecting the one that on balance will produce the most good. The moral imperative is to maximize good consequences and minimize bad ones. This raises the obvious question of how we measure and assess the goodness of consequences. For utilitarianism, the most prominent consequentialist theory, the highest good is happiness. However, it is not the happiness of the individual decision-maker that should guide decision-making, or at least not his or her happiness alone. Rather it is the happiness of everyone potentially affected by one’s decision that counts. Therefore in our actions we should strive to produce the greatest amount of happiness possible for everyone concerned.

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John Stuart Mill (1806–63) referred to this as the principle of utility, which he articulated as follows: “The creed which accepts as the foundation of morals, utility, or the greatest happiness principle, holds that actions are right in proportion as they tend to promote happiness, wrong as they tend to produce the reverse of happiness” (1863/1961, p. 194). Utilitarianism yields a simple formula for making moral decisions. The first step is to project the consequences of each action alternative available to us. The second is to calculate how much happiness, or balance of happiness over unhappiness, will be produced by each action and its projected consequences. The third step is to select that action which, on balance, will produce the greatest amount of happiness for the greatest number of people. Critics point out several problems with utilitarianism. One problem has to do with the difficulties of accurately predicting the consequences of our actions. Another has to do with how we determine how these consequences measure up in terms of happiness. How do we measure happiness? Probably the most serious criticism of utilitarianism is that it could sanction actions generally thought to be immoral. For example, on utilitarian grounds, it could be acceptable to sacrifice the happiness of a few persons in order to maximize overall happiness for the collective. To illustrate this point, suppose there are ten candidates waiting for transplants, and a serious shortage of donors and available body parts. Some of these people are expected to die if they do not get their transplants right away. An enterprising person suggests kidnapping a homeless person to harvest his or her organs and distribute them among the ten. This idea sounds morally repulsive to us, since it would violate moral rights and duties thought to be sacrosanct. However, for the utilitarian the fact that such an action would run counter to deep intuitions and fundamental moral principles would not be sufficient to rule it out. Following the greatest happiness principle, he or she would project the consequences of both kidnapping and not kidnapping the homeless person and try to determine how much happiness, on balance, would result from each course of action. If the kidnapping option won this contest, it would be mandated by utilitarianism. In response to such concerns, philosophers have distinguished between act and rule utilitarianism. Act utilitarianism enjoins us to perform the utilitarian calculation for each action considered separately. Rule utilitarianism, on the other, enjoins us to perform the calculation not for particular actions but rather with reference to general moral rules. If one adopted the rule that it is acceptable to kidnap people and harvest their organs when the harm to them

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will add up to less than the aggregate good to others that would result, applying the rule across the board may not in fact produce more benefit than detriment, taking into account such factors as how having such a rule could produce other negative consequences, such as desensitizing the population to the suffering and rights of others. Rule utilitarians further argue that the rules of ordinary morality are for the most part promotive of the greatest possible happiness and therefore should be adhered to. Given this qualification, rule utilitarianism is much more compatible with our moral intuitions than is act utilitarianism. 6.3. Virtue Ethics Despite their differences, deontology and consequentialism are alike in their focus on moral rules or decision-making principles. Moral life is conceived as rule or principle-governed behaviour, whether the rule in question be the greatest happiness principle, the categorical imperative, or some set of irreducible moral principles. Virtue ethics, by contrast, views moral life as having less to do with rules or principles for determining right action than with habits and dispositions. The emphasis is on moral character: not on actions or decisions but rather on the kind of person one is and should be. Aristotle (384–322 BCE) is the philosophical father of virtue ethics. In the Nicomachean Ethics (1934) he roots virtue in a theory of the human good, in turn grounding this good in a conception of human nature. What is good for human beings—that towards which we should strive—has its basis in the natural desire of human beings to be happy and the kind of beings we are by nature. Moral virtues are those habits and character traits the perfection of which enables us to realize and fulfill our nature. The path to happiness is a life of virtue. For Aristotle, what sets us apart as human beings and defines our uniquely human nature is reason. Therefore the highest virtues are those having to do with the cultivation and employment of reason. Aristotle also believed that we are by nature social beings. As such we require the society of others to develop and fulfill our natures most perfectly. Accordingly, the virtues proper to us are ones that contribute not only to our own good and excellence, considered individually, but also to the good and excellence of the community. Despite there being a common human nature, there is some individual variance in people’s natures such that some are more suited to some roles than others. Different moral virtues are appropriate for different social roles: Courage is more important to a soldier than to a shoemaker.

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On Aristotle’s account, a virtue is a mean between two extremes. For example, courage is a mean between cowardice and rashness; modesty is a mean between shyness and shamelessness. The ideal of moral education is to inculcate in the young and impressionable the habits and dispositions—i.e., virtues—that will enable them individually to reach their highest potential and at the same time contribute to the overall good of the community. Virtue ethics had a renaissance in ethical theory in the latter part of the last century due to theorists like Anscombe (1958), Foot (1978), and MacIntyre (1984). In large part, this was a reaction to the perceived deficits of the dominant deontological and utilitarian theories. MacIntyre (1984) criticizes these theories for seeking to ground ethics in universal moral principles and for reducing moral life to following rules. Moral rules or principles, he argues, are either too general to provide guidance in particular situations, or, if sufficiently particular, too controversial to win the agreement of all persons concerned. He argued that moral life cannot be represented adequately in the absence of a concrete conception of the human good. This good is not something that can be reduced to an abstract rule or principle, true always and everywhere for everyone. Rather the human good is embodied in moral communities and traditions. Who we are and what we ought to strive for cannot be decided in abstraction from the traditions that have shaped us and the communities in which our possibilities are delimited. Hauerwas (1977) reasons along similar lines, arguing that attempts to ground the moral life in moral systems designed in accordance with universal principles are bound to fail. Such systems are at best pale imitations of concrete moral life. Living a moral life is less a matter of adhering to the right moral system or following the right moral rules than it is of responding thoughtfully to the myths and stories that have shaped us, and responding to moral situations in light of these stories. Virtue ethics holds many attractions for contemporary bioethics, and indeed both MacIntyre and Hauerwas applied virtue ethics specifically to bioethics. Bioethicists sympathetic to or working within this approach (e.g., Pellegrino, 1974, 1977; Putman, 1988) remind us that the health professions are moral traditions that embody concrete norms about the good. To enter a health profession is to enter a moral community, the ends and ideals of which are embodied in long-standing traditions. To be a “good” nurse or a “good” doctor is to have the kind of character proper to the ends of nursing or of medicine. In this vein, Pellegrino and Thomasma (1988) championed beneficence, or care for the good of patients, as the paramount virtue proper to those in the

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helping professions, challenging the tendency in bioethics to give prominence to autonomy. Bioethicist Rachel Haliburton, a proponent of virtue ethics, has criticized bioethics along similar lines, arguing for a renewed understanding and assessment of autonomy in terms of what she calls “relational autonomy” (Haliburton, 2015; Jennings, 2016). Virtue ethics has obvious applications concerning the education of health professionals, and it has received considerable attention in the nursing ethics literature (e.g., see Armstrong, 2007; 2006). Certainly there are instances in which it can be applied (e.g., Hodkinson, 2008, has demonstrated how it can be applied to a case concerning truth telling), but its overall usefulness for addressing the myriad ethical issues that arise in health care is questionable. Should the dying patient’s feeding tube be removed? On what grounds should those in line for a transplant be prioritized? Should consent always be sought for DNR -orders? About such questions virtue ethics offers little guidance, although the same might also be said of the other theories we have discussed. The emphasis on particular traditions and communities raises yet other concerns. If everyone were shaped by the same tradition and belonged to the same moral community, a concrete conception of the human good might be workable. But many societies today are not like that at all. We are a mosaic of people from sometimes very different traditions and communities, with sometimes very different conceptions of the good life. Given this reality, it seems unlikely that we could achieve consensus on a concrete conception of the good life. However, the prospect of consensus on moral rules and principles that would traverse our differences may seem to be more of a live option. 6.4. The Ethic of Care The ethic of care is like virtue ethics in many respects, and could even be classified as being a kind of virtue ethics. However, given its importance for nursing, and its affinities with other strains in contemporary theorizing about bioethics that cannot be thus classified, it warrants independent consideration. The ethic of care emerged out of the work of Carol Gilligan (1982), which in turn was responsive to Lawrence Kohlberg’s (1981) work on moral development. Kohlberg posited a stage theory of moral development. At the first and most “primitive” stage of moral development—the pre-conventional— moral decision-making is guided by the fear of punishment and the desire to satisfy one’s own desires. At the next stage—the conventional stage—moral

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decision-making is guided by the desire to please others, deference to authority, and unquestioning obedience to the moral conventions dominant in one’s social environment. The pinnacle of moral development—the post-conventional stage—is marked by autonomy and independent thinking. Decisionmakers at this level are guided by the independent use of reason, and such moral principles as reason suggests to be universally valid for all people. Gilligan was troubled by the fact that girls tended to score differently than boys on Kohlberg’s moral development scale. If one accepted Kohlberg’s hierarchy, one would have to say that they scored “lower.” Gilligan believed that females do indeed approach moral problems differently than males (although she describes this difference differently than did Kohlberg). However, rather than viewing this difference as a deficiency, she called into question Kohlberg’s value assumptions about the importance of autonomy, and posited that what is different in female moral reasoning is something positive, and not something to be gotten beyond in movement to a “higher” stage. She elaborated this difference in her own research, in which she “found that girls and women tend to approach ethical dilemmas in a contextualized, narrative way that looks for resolution in particular details of a problem situation; in contrast, boys and men seem inclined to try to apply some general abstract principle without attention to the unique circumstances of the case” (Sherwin, 1989, p. 58). Gilligan called the contextual approach common to girls and women the “ethic of care.” The principle-based approach more common to boys and men she called “the ethic of justice.” The justice orientation is very similar to the preoccupation with moral rules and principles shared by deontology and utilitarianism. The care orientation, by contrast, is focused less on rules than on virtues such as kindness and concern. It emphasizes not abstract rules or principles that would apply always and everywhere but rather the particular context in which the moral issue arises, and the network of individuals and communities connected around the issue. It values independence or autonomy less than it does relatedness with others, and sensitivity and concern for their needs. Gilligan’s work generated much interest and was taken up by others in a variety of fields. As others have elaborated the ethic of care, it overlaps with several strands of theorizing in contemporary ethics, including relational ethics and feminist ethics. Noddings, who early on (1984) proposed a theory of caring based on receptiveness, responsiveness, and relatedness, in later work theorizes about care in terms of a relational approach to ethics (2013). Several

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authors have elaborated care in relation to feminist ethics (Clement, 2018; Held, 2018; Larrabee, 2016). Caring has long been a central element of nursing and has figured prominently in nursing theory (e.g., Benner & Wrubel, 1989; Fry & Johnstone, 2002; Tschudin, 2003; Watson, 1985). This caring focus and the fact that nursing has been largely a “woman’s profession” made the ethic of care an especially relevant theory for early nursing ethics theorists (Brody, 1988; Fry, 1989; Gadow, 1985). Gilligan had argued that the care ethic is different from, but not, as Kohlberg’s theory implied, subordinate to, the justice ethic. She celebrated this ethic as the distinct voice of women, which hitherto had been suppressed by the dominant male ethic and relegated to second-class status. Consistent with this, Huggins and Scalzi (1988) asserted that “if an ethical base for nursing practice is built on the ethic of justice, and the nurse’s orientation is the ethic of care, there will continue to be a denial of the nurse’s own voice” (p. 46). Much contemporary work in nursing ethics adopts an ethic-of-care approach (e.g., Bradshaw, 2009; Corbin, 2008; Finfgeld-Connett, 2008; Leget et al., 2019; Oberle & Bouchal, 2009). Many of the concerns expressed about virtue ethics apply also to the ethic of care. In addition, the ethic of care generated other controversies, within and outside nursing (e.g., see Nelson, 1992; Noddings, 1992; Sherwin, 1992b; Tronto, 1993; Vezeau, 1992). One concern of particular significance for nursing is that the ethic of care reproduces and reinforces clichés about gender roles that have been used to promote and justify occupational segregation: Women (especially mothers and nurses) do the caring, while the men do the “really important” work, like managing, building, fixing, and curing. Given the way our society values caring compared to the supposedly more masculine traits, buying into the ethic of care could contribute to the undervaluation of nursing in the health care system. A less strategic and more principled concern about the ethic of care has to do with how this approach is understood vis-à-vis other approaches. It makes a difference whether the ethic of care is championed as competing with, or complementing, the ethic of justice. It is certainly true that caring has been the central value or virtue in the nursing profession. However, justice-oriented virtues such as autonomy, fairness, and impartiality have also had an important place in nursing and nursing ethics. To the extent that the ethic of care is understood as being in competition with these virtues, and incompatible with a concern for moral principles, its suitability for nursing and nursing ethics is questionable.

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The emphasis on caring in nursing has been challenged by several prominent nurse philosophers, as will be discussed in the chapter on beneficence. Rolfe (2009) points out that the concept of care is vague and is used with “different and contradictory meanings”; he is doubtful about attempts to achieve “agreement on a shared definition of caring” (p. 145). Others worry that an emphasis on care detracts from the importance of knowledge and skills possessed by nursing (Dahlke & Stahlke Wall, 2017). Paley, who challenges what he calls the “ideology of caring” on the grounds that it promotes a slavish mentality in nursing (2002, p. 25), also objects to what he believes are hyped claims about the importance and impact of caring viewed as a psychological property or a way of relating to others (2008). 6.5. Feminist Ethics Like the ethic of care, feminist ethics holds obvious interest for nursing given the predominance of women in the nursing profession. A historical overlap exists between the two approaches because much early work in feminist ethics adopted, or was at least sympathetic to, the ethic of care approach. Moreover, three recent works on feminist ethics specifically focus on care (Clement, 2018; Held, 2018; Larrabee, 2016). However, the ethic of care is but one of many strands in feminist ethics. As Pinch (1996) pointed out in her early review of feminism and bioethics, the wide variety of feminist theories range from liberal to Marxist feminism, including strains as diverse as eco-feminism and psychoanalytical feminism. Much of this theorizing challenges the ethic of care (for example, for reinforcing gender stereotypes). Although contemporary feminist ethics draws from diverse feminist theories and encompasses a broad range of diverse perspectives, certain tendencies do stand out. In general they can be grouped under three main overlapping features: attentiveness to issues of group identity and difference, attentiveness to power dynamics, and attentiveness to context and relatedness. A key insight of feminism is that gender makes a difference in the construction of roles and identities in society, and accordingly in how individuals and groups are treated. This difference remains despite significant gains made in equality in the last century. Feminist ethics is based on the understanding that society remains “patriarchal” in many ways. The interests and perspectives of men are systematically privileged and those of women muted, sometimes in ways that are quite subtle and taken for granted as if they were natural. Thus,

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in assessing the ethics of a situation—whether a clinical matter or a matter of public policy—feminist ethicists are on the lookout for gender prejudices embedded in cultural norms and institutional policies. They are especially alert to the potential for direct or indirect sexual discrimination and issues of sexual equality. Is one or another individual or group being disadvantaged based on sex, perhaps due to prejudices that are not recognized as such? Indeed, many feminist bioethicists believe that mainstream ethics, or what O’Brien (1981, p. 6) called “malestream” ethics, is permeated by prejudices that privilege males. Rawlinson (2001) viewed feminist bioethics as the “project of beginning from women’s experiences and bodies in formulating the problems, principles and concepts of ethics” (p. 413). In this thought she echoed earlier work by Warren (1989, p. 82), who looked to diversity, relationships, and ordinary experience as a ground for ethical theorizing. Much early work in feminist ethics focused on matters traditionally defined as “women’s issues,” such as reproduction and gender difference. However, as feminist ethics developed, the range of issues that it covered expanded (Wolf, 1996). Its scope today recognizes that cultural and institutional prejudices and dynamics similar to sexism are at work alongside other prejudices and dynamics, such as those pertaining to sexual orientation, race, ethnicity, class, and disability. Feminist analyses of gender prejudices and unjustifiable differential consideration and treatment can be applied to any marginalized group. The attention to identity and difference in ethical analysis connects to and overlaps with a second main feature of feminist ethics: attentiveness to power dynamics. Women, gay people, transgender people, racial or ethnic minorities, people with disabilities, and people who live in or near poverty are subject to the dominant prejudices of our culture. By and large these are the prejudices of those who have held power and whose interests are served by the resulting discrimination. Accordingly, feminist ethics is especially attentive to how the dynamics of power have a bearing on ethical issues, sometimes in quite subtle ways. Who holds what power in a given situation? Who is most vulnerable? For those who tend to be less privileged, what is the likely impact of actions or policy aimed at distributing or redistributing power? Feminist ethics thus counteracts or corrects a tendency to privilege the values and interests of the dominant culture by foregrounding the values and interests of those who tend to be less powerful and more vulnerable. In attending to questions about power and its distribution, feminist ethics tends to be overtly political. Indeed, most feminist ethicists would consider themselves to be political activists,

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addressing and often challenging dominant norms—including norms that are more or less explicit in mainstream ethics—in the name of “social justice” (Kirkham & Browne, 2006). The entrenched prejudices and dynamics of power emphasized by feminist ethics come into play through a wide range of ethical issues. “Oppression” and “exploitation” cut across different ethical issues, which brings us to the third feature of feminist ethics: sensitivity to context and relatedness (Liaschenko, 1993; Peter & Liaschenko, 2003; Sherwin, 1992a, 1992b). Ethical issues invariably occur in contexts, and feminist ethics tends to consider the contexts of prejudice and power often neglected by, if not embedded in, mainstream ethics, and the ways in which they are connected. Recent work in feminist ethics turns to the global and international context of ethics (Sherwin, 2008; Tong, 2018; Tong et al., 2004; Tong et al., 2001). This emphasis on context and relatedness also tends to influence how ethical issues are constructed. Feminist ethicists believe that mainstream ethics considers ethical issues in isolation and devoid of relatedness to context; that it conceptualizes individuals as if they were in isolation from the broader world around them, from their relationships in that world. The concept of autonomy as it has been conceptualized and foregrounded in mainstream ethics has been the subject of much criticism in this regard. One prominent current of thought in feminist ethics advances an alternative concept of “relational” autonomy that takes into account relationships, relatedness, and context (Donchin, 2001, 1995; MacDonald, 2002; McLeod & Sherwin, 2000; Sherwin, 1998). A strength of feminist ethics is that it expands the scope of attention and consideration in the assessment and analysis of ethical issues. It brings to light contextual dimensions of prejudice, power, and relatedness that might otherwise be neglected or unnoticed. In so doing, it also expands the field of action. It looks to address not just one or another issue immediately at hand, but also the cultural and political context in which the issue arises. As a style or method of analysis, feminist ethics can contribute to enriching our understanding of ethical issues. Feminist ethics also tends to assume and promote a set of definite ethical and political commitments. From this normative standpoint it challenges prevailing norms and policies and seeks to bring about social change. To be sure, the precise content of these ethical and political commitments will vary to some degree, but most feminist ethicists agree that the project entails a set of political commitments and calls for overtly political action to address the

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broader contextual dimensions of power and prejudice. In this respect, feminist ethics is somewhat different from the other ethical theories, which tend to focus on ethical issues more or less in isolation and also to be politically neutral, or at least less overtly political, on questions of broader social change. In part inspired by feminist ethics, the nursing profession has adopted an increasingly overt political advocacy stance with respect to a range of social issues that bear on health. Whereas in the past advocacy primarily meant advocacy on behalf of individual patients, there is a greater emphasis today on advocacy with respect to broader social changes. Professional nursing organizations advocate for safe-injection sites, decentralization of health care, and better qualified staff in nursing homes. They urge their members to engage with broader social issues. The most recent edition of the Canadian Nurses Association (CNA) Code of Ethics for Registered Nurses (2017) has an entire section about social justice advocacy titled “Ethical Endeavours Related to Broad Societal Issues” (p. 18). The preamble to this section reads: “Ethical nursing practice addresses broad aspects of social justice that are associated with health and well-being. These aspects are focused on improving systems and societal structures to create greater equity for all” (p. 18). Various ways in which nurses can advocate for social justice are listed, including by “maintaining awareness of broader global health concerns, such as violations of human rights, war, world hunger, gender inequities and environmental changes, and working and advocating (individually and with others) to bring about change locally and globally” (p. 18). Feminist ethics has the merit of drawing attention to broader social and ethical issues that bear on nursing and health care. In emphasizing political advocacy, it expands the horizons within which nurses can express their moral commitments. However, the emphasis on political advocacy can also be a drawback from the standpoint of nurses who conceive their role as advocates more narrowly, or who hold different views about broader social issues. Philosopher Susan Sherwin (2008) advocates the development of “an ethics that can help guide us away from the treacherous path humanity is now following” (p. 8). In speaking of “an ethics” here, she is referring not so much to a way of analyzing ethical issues as to a specific set of value commitments. To be sure, she leaves the content of this “ethic” unspecified. Still, whatever specific value commitments it would include, it is evident that this “ethics” must be different from the “ethics” currently held by many or most people because she exhorts that “humans must undertake massive changes in established patterns

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of behaviour on several fronts” and warns about “massive behavioural norms that will require revision if we are to head off the multiple threats facing us” (p. 8). What she envisages is a fairly large-scale and radical political program. Understandably, those who follow “established patterns of behaviour” deemed to require “massive change” or who hold “behavioural norms” deemed to “require revision” may be reluctant to sign on to such a program. However, it can be argued that other ethical theories too presuppose political positions, even if only in consenting to the status quo by remaining silent or claiming neutrality. Moreover, there is no ethical theory that everyone agrees upon. 6.6. Relational Ethics A relatively recent development in ethical theory, relational ethics, emerged in the 1990s out of a University of Alberta research project that spawned a full-length book on the subject (Bergum, 2013; Bergum & Dossetor, 2005). Vangie Bergum, a nurse ethicist, has been a leading figure in its articulation and development. Relational ethics is gaining increasing prominence in the writing of Canadian ethicists with backgrounds in philosophy and medicine (e.g. Kenny et al., 2010) as well as in nursing. Today, relational ethics is a leading theory in nursing ethics, taken up, developed, and applied by various nursing ethicists (e.g., Doane & Varcoe, 2013; Moore et al., 2014; Rodney, Kadyschuk, et al., 2013). The core features of relational ethics prove challenging to identify because its main precepts, quite deliberately, leave a good deal of room for interpretation. Relational ethics has obvious affinities with the ethic of care and with the stream of thinking about relational autonomy in feminist ethics. However, in contrast with other theoretical approaches, as Bergum (2013) explains: Relational ethics is an action ethic.... In a relational ethic, one is ... [in] a relational space that gives moral meaning to our actions.... Ethical action from the perspective of relationship is a move away from direct attention to epistemology, virtues or problems. Rather, attention is given to the moral space created by one’s relation to oneself and the other. (pp. 127–28)

Although Bergum contrasts relational ethics with these other approaches, this does not necessarily imply antagonism to them. In her account, relational ethics does not so much supplant or replace other approaches as it supplements

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them. The key difference is one of “attention,” as she puts it: Relational ethics puts relationships, rather than principles, virtues, or problems, in the foreground of analysis. Whatever principles, virtues, or problems may be in play, the nurse is always situated in a network of relationships. This lived reality is the starting point for reflection and analysis. Thus relational ethics enjoins nurses to “attend to the quality of relationships in all nursing practices, whether with patients and their families, with other nurses, with other health care professionals, or with administrators and politicians” (Bergum, 2004, p. 487). She elaborates on four main themes in light of which relationships can be brought into view: environment, embodiment, mutual respect, and engagement (Bergum, 2013, pp. 129–38). According to Austin et al. (2003), the project of relational ethics is “to create an ethics for health care that is grounded in our commitments to each other” (p. 46). These commitments are multiple, open to interpretation and debate, and sometimes conflicting. They are inscribed in whatever situation and network of relationships and connections with others we find ourselves. Relational ethics would have us begin our analysis of ethical situations by bringing to light and reflecting upon the connections, relationships, and commitments in which we are bound together. Commitments are a more concrete focus of attention than are principles or virtues. For example, when we look to the principles or virtues relevant to a given situation, we do not necessarily have to look to ourselves and to the lived reality of others in that situation. But when we start with our commitments, we must above all and firstly look to ourselves, and to the lived reality of others as they likewise find themselves in networks of relationships and connections with attendant commitments. The starting question is not so much “What principles apply?” or “What should I do?” but rather “Who am I?” and “What relationships, connections, and commitments already inform the person that I am in this particular situation?” Such attention does not preclude attention to and reflection upon principles, virtues, problems, or dynamics of power. It is a question, rather, of where we begin: Relational ethics would have us begin with who we are, and we are who we are in relationships with others. The emphasis on relationships and on the commitments informing these relationships means that, essentially, relational ethics is about persons—oneself and others as embodied in networks of relationships—and about already having connections and commitments and having been shaped and formed by these. This is perhaps what Bergum (2004) means when she says, “relational ethics is really about understanding and knowing ourselves as we engage

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others” (p. 502). Doane (2004) captures this emphasis well in saying that relational ethics is about the “re-personalization of ethics” (p. 434). In this regard, relational ethics has obvious affinities with narrative, since who we are and how we connect with others is shaped in stories. This is brought out by Clandinin et al. (2018), whose work on relational ethics and narrative enquiry draws heavily from Bergum’s and Dossetor’s early work. Canadian ethicists Kenny et al. (2010) remind us that a relational ethical approach helps us to appreciate that “persons are inherently socially, politically, and economically situated beings” (p. 10). Nursing’s ethical obligations are therefore to attend to individuals and also the social, political, and economic contexts that influence those individuals’ health and well-being. Such obligations are, for example, particularly visible in the practice of public health nurses who address problems created by challenges such as poverty and unstable housing. Relational ethics does not furnish us with moral rules or prescriptions for action. If we expect ethics to provide definite guidance for action, this limitation might count as a weakness. However, if this is a weakness, it is one shared by other moral theories we have discussed, including rule-based theories, that are sometimes indefinite as applied to specific cases, or so open to interpretation that opposing conclusions about what to do in a specific situation can be drawn from them. Moreover, from the standpoint of relational ethics the expectation of definite guidance itself is questionable, at least at the outset of ethical analysis and reflection. To ask, “What does relational ethics say is the right thing to do in this or that circumstance?” would be to miss its point. For relational ethics, the answer to the question “What should I do” will always be something like: “Begin where you are, and with who you are, reflecting upon the bonds and commitments that are already inscribed in the network of relationships in which you find yourself. And understand how the patients you are caring for are influenced by their social, political, and economic contexts.”

7. CONCLUSION Looking back over this brief survey of moral theories, one point worth noting is that there is a good deal of overlap and cross-fertilization among virtue ethics, the ethic of care, feminist ethics, and relational ethics. These are all relatively recent theories (although virtue ethics is a recovery of an older tradition) that are in some measure critical of what for a long time had been

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the two dominant strains in ethical theorizing—deontology and consequentialism. They bring to light and into prominence dimensions of moral experience—relationships, politics, emotions, identity, and so on—that tend not to be taken into account, or not to be adequately addressed, in deontology or consequentialism. It goes without saying that this primer on ethical theory has significant limitations due to its brevity. Moral theorizing has taken many forms over the centuries, and in the interest of brevity we have had to leave out a good deal of philosophical theorizing that furnishes valuable insight into the moral dimensions of our lives—from Stoicism to theories based on purportedly universal sentiments such as empathy. Diverse religious traditions too have made significant contributions to moral theorizing. We have also left out interesting and promising contemporary moral theories, including narrative ethics, discourse ethics, and communitarian ethics. Moreover, the way we have mapped the “theoretical landscape” (Rodney, Burgess, et al., 2013) of nursing ethics is certainly not the only way to cover the territory. Other textbooks in nursing ethics map the theoretical landscape differently (e.g., Grace, 2017; Johnstone, 2015; Keatings & Adams, 2020). Finally, in aiming for brevity and conciseness the outline we have given hardly begins to uncover some of the philosophical complexities posed by each of the theories we have discussed. Notwithstanding these limitations, the reader should be able to have a reasonable sense of the range of perspectives in the field from selections we have made. And although brief and somewhat simplified, the summary discussion of each theory should be sufficiently clear and to the point for the reader to use the theory as a starting point for reflection. Moreover, additional discussion about these theories is threaded throughout the text in the analysis of specific concepts and cases. We are not proposing that nurses should pick or decide on one from among the theories we have described. McCarthy’s (2006) call for a “pluralistic view of nursing ethics” has merit. Each of the theories we have discussed communicates insight and opens up important aspects of moral experience and enquiry. Ultimately, each of us must come to terms in our own way with questions concerning who we are, what we value, who and what we are committed to, and how we will act and decide responsibly. Thinking about moral life from the perspectives of the theories described should help. Keep in mind too that ethical theory is not the only pathway to insight about ourselves, the moral issues we are bound to face, and the sometimes-difficult choices that we

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must make. For instance, the fine arts—including novels, poetry, music, and film—are another important way to travel down that road.

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Noddings, N. (2013). Caring: A relational approach to ethics and moral education (2nd ed.). University of California Press. Oberle, K., & Bouchal, S. (2009). Ethics in Canadian nursing practice: Navigating the journey. Pearson-Prentice Hall. O’Brien, M. (1981). The politics of reproduction. Routledge & Kegan Paul. Paley, J. (2002). Caring as a slave morality: Nietzschean themes in nursing ethics. Journal of Advanced Nursing, 40(1): 25–35. https://doi.org/10.1046/j.1365-2648.2002.02337.x Paley, J. (2008). Commentary on Finfgeld-Connett, D. (2008). Meta-synthesis of caring in nursing. Journal of Clinical Nursing, 17(12), 1668–69. https://doi. org/10.1111/j.1365-2702.2007.02026.x Pellegrino, E.D. (1974). Educating the humanist physician: an ancient ideal reconsidered. Journal of the American Medical Association, 22(11), 1288–94. Pellegrino, E.D. (1977). Rationality, the normative and the narrative in the philosophy of morals. In S. Hauerwas, R. Bondi, & D.B. Burrell (Eds.), Tragedy and truthfulness (pp. 153–68). University of Notre Dame Press. Pellegrino, E.D., & Thomasma, D.C. (1988). For the patient’s good: The restoration of beneficence in health care. Oxford University Press. Peter, E., & Liaschenko, J. (2003). Whose morality is it anyway? Thoughts on the work of Margaret Urban Walker. Nursing Philosophy, 4(3), 259–62. Pinch, W.J.E. (1996). Feminism and bioethics. MedSurg Nursing, 5(1), 53–57. Putman, D.A. (1988). Virtue and the practice of modern medicine. The Journal of Medicine and Philosophy, 13(4), 433–43. Rawlinson, M.C. (2001). The concept of a feminist bioethics. The Journal of Medicine and Philosophy, 26(4), 405–16. Rodney, P., Burgess, M., Phillips, J.C., McPherson, G., & Brown, H. (2013). Our theoretical landscape: A brief history of health care ethics. In J.L. Storch, P. Rodney, & R. Starzomski (Eds.), Toward a moral horizon: Nursing ethics for leadership and practice (2nd ed., pp. 59–83). Pearson-Prentice Hall. Rodney, P., Kadyschuk, S., Liaschenko, J., Brown, H., Musto, L., & Snyder, N. (2013). Moral agency: Relational connections and support. In J.L. Storch, P. Rodney, & R. Starzomski (Eds.). Toward a moral horizon: Nursing ethics for leadership and practice (2nd ed., pp. 160–87). Pearson-Prentice Hall. Rolfe, G. (2009). Some further questions on the nature of caring. International Journal of Nursing Studies, 46, 142–45. https://doi.org/10.1016/j.ijnurstu.2008.04.010 Ross, W.D. (1930). The right and the good. Oxford University Press. Sherwin, S. (1989). Feminist ethics and medical ethics: two different approaches to contextual ethics. Hypatia, 4(2), 57–72.

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Sherwin, S. (1992a). Feminism and medical ethics: two different approaches to contextual ethics. In H. Besquaret Holmes and L. Purdy (Eds.), Feminist perspectives in medical ethics (pp. 17–31). Indiana University. Sherwin, S. (1992b). No longer patient: Feminist ethics and health care. Temple University Press. Sherwin, S. (1998). A relational approach to autonomy in health care. In S. Sherwin (Ed.), The politics of women’s health: Exploring agency and autonomy (pp. 19–47). Temple University Press. Sherwin, S. (2008). Whither bioethics? How feminism can help reorient bioethics. International Journal of Feminist Approaches to Bioethics, 1(1), 7–27. Tong, R. (2018). Feminist approaches to bioethics: Theoretical reflections and practical applications. Routledge. Tong, R., Anderson, G., & Santos, A. (Eds.). (2001). Globalizing feminist bioethics: Crosscultural perspectives. Westview. Tong, R., Donchin, A., & Dodds, S. (Eds.). (2004). Linking visions: Feminist bioethics, human rights, and the developing world. Rowman & Littlefield. Tronto, J.C. (1993). Moral boundaries: A political argument for an ethic of care. Routledge. Tschudin, V. (2003). Ethics in nursing : The caring relationship (3rd ed.). Butterworth-Heinemann. United Nations. (1948). Universal declaration of human rights. UN general assembly resolution 217 A(III). Geneva. Vezeau, T.M. (1992). Caring: From philosophical concerns to practice. The Journal of Clinical Ethics, 3(1), 18–20. Warren, V.L. (1989). Feminist directions in medical ethics. Hypatia, 4(2), 73–87. Watson, J. (1985). Nursing: Human science and human care. Appleton-Century-Crofts. Wolf, S.M. (Ed.). (1996). Feminism and bioethics: Beyond reproduction. Oxford University Press.

CH A P T E R 2

BENEFICENCE The desire to care for others is a salient theme in the career choice literature, and the concept of caring is central to nursing practice. The problem with an emphasis solely on virtues is that it can deemphasize the knowledge, skill and expertise required within nursing practice: something that may prove dissatisfying for future generations of nurses. —Price et al., 2013, p. 312

Caring about and for the well-being of others is the mainspring of nursing. This orientation toward the good of patients is called “beneficence.” Beneficence may be simple in principle but in practice challenging issues sometimes arise. Views about health, interventions to advance health, and the importance of health relative to other goods, may vary from person to person and culture to culture. How ought differing personal, cultural, and familial perceptions and definitions of health be reconciled? What is an ethical balance between respect for the patient’s rights and liberties and the nurse’s knowledge or perceptions of what is good for the patient? How forceful or coercive should health professionals be in advancing their views of what is good for the patient? What is required in situations where doing what is best for the patient involves some element of personal risk or sacrifice on the part of the nurse? Cases in this chapter explore beneficence from several different angles: conflict concerning life-saving treatment for a First Nations child, tension in connection with a patient who is starving herself, use and misuse of prescribed opioids, humanitarian nursing work in a war-torn area, and the limits of respect for a cultural practice at odds with beneficent concern.

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1. BENEFICENCE AND BENEFITING OTHERS Beneficence (from the Latin bene for “well” or “good” and facio for “to do”) denotes promoting someone else’s good or well-being. The same root forms the word “benefit.” Beneficence, as an ideal or principle of conduct, enjoins us to act in a way that benefits others. Such benefit might take the form of preventing or removing some harm, or more directly acting to produce a good. The same knowledge, skills, and powers that health professionals use to produce benefit can also produce harm. This double edge is captured in the Greek word for drug (pharmakon), which can mean either remedy or poison. The same drug that is beneficial in one context or used in one way may under certain circumstances or when used in another way be harmful. The same can be said of many different interventions. Because health professionals are in a position to produce harm as well as benefit, it is important also to pay mind to nonmaleficence, which pertains to not doing harm (Beauchamp & Childress, 2012). Nonmaleficence is the value expressed in the dictum primum non nocere, that is, “first, do no harm.” This injunction exhorts health professionals to exercise due care and caution in working to produce benefit for their patients so that, if they cannot do good, at the very least, they do not make things worse. A documentation error, a slip of the hand, or an unguarded disclosure of information could cause a great deal of harm. Beneficence has always been highly valued in the health professions—the so-called “caring” professions—and certainly in nursing (Lamb & Storch, 2013). The first nurses in Canada belonged to religious orders that established hospitals in Quebec City and Montreal in the seventeenth century. These Augustinian and Ursuline sisters cared for the settlers as well as the Indigenous peoples in much less than ideal circumstances. They sometimes risked their health as they practised the tenets of their faith: doing good and benefiting others. Beneficence overlaps in meaning with caring. Paley (2002) notes that caring “has been at the centre of nursing discourse” since around the 1970s, but that it was in the “1980s that the idea of caring as somehow embodied in, and intrinsic to, nursing took root” (p. 25). The caring orientation of nursing has been given prominence by several nursing theorists (e.g., Benner, 2001; Benner & Wrubel, 1989; Benner et al., 2009; Watson, 2005). The work of these theorists has been developed in a number of different directions. Bradshaw (2009) surveys this theoretical literature in a discussion of what she calls the “McDonaldization of care” and recent initiatives to quantify and measure

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caring in nurses. Oberle and Bouchal (2009) relate caring specifically to virtue ethics, noting that the virtue of caring takes into account situational context, relationships, and the patient’s best interests. Some nurse philosophers are critical of the discourse of caring in nursing. Reviewing how the term is used in a series of articles spawned by Corbin (2008) on the “lost art of caring,” Rolfe (2009) demonstrates that the concept has “different and contradictory meanings,” including caring as a feeling, caring as behaviour, caring as an attitude, caring as an art, and caring as a science. He is skeptical about the attempt to achieve “agreement on a shared definition of caring” (Rolfe, 2009, p. 145). Paley goes further. In a critique of FinfgeldConnett’s (2008) attempt to construct a clear concept of caring from the various depictions of caring in the literature, Paley (2008) claims that this effort amounts to “just an anthology of descriptions” (p. 1669) and that causal claims linking caring to health benefit are unfounded and epistemologically confused. Issues of clarity aside, several commentators are critical of the rhetoric of caring in nursing because they believe that it hinders the development of professional, scientifically informed, and evidence-based professional nursing. Dahlke and Stahlke Wall (2017) argue that the valorization of caring discourse in nursing contributes “to nurses’ reticence in speaking up about practice challenges because of ideas about what a caring nurse ought to do” (p. 6). They say that “it is time for nursing to reflect on our historical thinking and how it has contributed to the persistence of unhelpful ideas and to shift our focus to a new conception of nursing based on our professional identity of knowledge, skill, and service to humanity.” Paley (2002) challenges what he calls the “ideology of caring” in nursing, equating it to what Nietzsche calls a “slave morality” that is “motivated by resentment” (p. 25). The uptake of this ideology in nursing, he claims, has “been debilitating, and it has prevented nursing from becoming ... a properly scientific discipline” (p. 25). It is important to note, however, that the above critiques apply not to care as such—no one is denying that nurses should be caring—but rather to the meaning and significance of care as thematized in nursing theory.

2. BENEFICENCE, SELF-CONCERN, AND DUTY In earlier days, many people (almost always women) entered nursing with a sense of vocation. Selfless dedication and sacrifice were expected. The culture of religious orders and military life were combined. As the profession

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developed in the last century, along with advances in the status of women in society and in labour and human rights legislation, nurses gained a legal right to fair employment conditions. Today students, including an increasing number of men (McDonald, 2019), enter nursing for a variety of reasons. In addition to the intrinsic rewards of helping people, nursing is an appealing career because of salary, benefits, and employment opportunities. To varying degrees, responsible individuals want to benefit others. For many people, and in particular those working in the “helping professions,” caring comes naturally. To the extent that nurses care about their patients, caring for them may be less a burden and more a joyful fulfillment or expression of deep desires and commitments. In many instances, helping others makes us feel good about ourselves. Many nurses report tremendous job satisfaction from making a positive difference in someone’s life. However, in some instances, meeting the needs of a patient may require hard work, personal risk, or sacrifice (Armstrong & Silas, 2019). Some tasks can be demanding or unpleasant. There may be some element of risk to the nurse in caring for a person with an infectious disease. Working overtime to meet patient needs in emergency situations or when a unit is short-staffed may be an imposing inconvenience or even a serious burden. When the nurse finds satisfaction or gratification in caring for the patient, beneficence is easy. The situation is different when there is some degree of conflict between the nurse’s own desires or self-concern, on the one hand, and what is required to benefit the patient, on the other. Perhaps the nurse would rather not attend to the homeless man—lice-ridden and unkempt—brought into the emergency. Meeting his needs may be very challenging and not what the nurse desires. Nonetheless, such acts of caring are required as a matter of duty. Recognizing and checking one’s first or immediate responses and composing oneself in a professional manner to care for the patient is part of what it means to act professionally. If, as is often the case, what duty requires is at the same time what the nurse desires, then so much the better. However, sometimes reasons of duty require us to do what otherwise we would prefer not to do. The call of duty may spur us into action when immediate desire or concern for ourselves pulls us in another direction. Leading a moral life—a life responsive to the demands of virtue and duty—involves some measure of self-examination, self-sacrifice, effort, and striving. In professional ethics, it is often argued that our duties derive from the phenomenon of promising, as when we speak of professional promise. According to

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this view, the duties of a professional emerge from a kind of contract or covenant between a profession and society, or between a given health professional and a given patient. Society confers certain rights and privileges on nurses, who in return implicitly promise to aim at certain standards of conduct, including those expressed in the profession’s ethical norms and code of ethics. The individual who enters the profession and assumes the role of nurse thereby assumes certain duties that go with this role, the duty to act for the benefit of the patient being foremost among these. Such a duty is called a “fiduciary duty,” meaning that it derives from a trust that professionals will use their skills and powers in the service of their patients. Nurses have been empowered and entrusted to act for the benefit of patients; patients expect them to do so. By whatever means duty is grounded, it is sometimes difficult to decide precisely what and how much duty requires of us, especially with regard to beneficence. Many questions arise in connection with duty. Aside from what we might wish or desire to do, or what we might be inclined to do out of self-concern, what is entailed by a duty to benefit others? To what extent is it enough to avoid causing others harm, and to what extent are we required to produce positive benefits for others? How much sacrifice, effort, and striving does duty require of us? Although we admire those who devote themselves passionately to the service of others, the self-sacrificing hero sets an unreasonable standard of duty for nursing. Yet we also disapprove of nurses who act only according to the bare letter of their job descriptions and minimum expectations, and refuse to make any sacrifice for the good of their patients. Somewhere between these extremes a reasonable balance must be found. Nurses know and accept that they face occupational risks but there is a limit to the risks that they can reasonably be expected to accept, particularly when the risks can be minimized by procedural, structural, or cultural changes in the workplace (Armstrong & Silas, 2019). Certainly when nurses are put at serious risk of harm, remedies to reduce or eliminate the risks must be sought. For example, back injuries are common and can be reduced by use of patient lifts. Some risks are harder to reduce and some environments carry more risk than others. Nursing care is sometimes required in situations in which there is risk of physical and verbal abuse from patients with health problems. For these situations, assessment and risk protocols should be used. Nurses need to ensure that managers and employers do not exploit their commitment to the well-being of their patients and normalize working situations that are unsafe or unduly stressful. In the not too distant past, nurses

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were expected to suffer indefinitely and in silence. Employers counted on the beneficent willingness of nurses to make sacrifices in place of instituting effective systems and protocols to make the work environment as safe as possible. Today, nurses are protected by occupational safety laws and policies designed to ensure the work environment is safe. Managers and employers have a responsibility to reduce risks for all staff and to promote a healthy and safe workplace. Nurses receive education about management of potentially harmful patients. Security and other staff are available to respond to potentially harmful situations. In unionized environments nurses can refer to their contract for guidance about working under questionable circumstances. Health agencies have respectful workplace policies developed in relation to human rights. It is recognized that fatigue and stress are not only harmful to the nurses concerned, but also increase the risk of injuries, errors, and burnout. In many workplaces nurses are supported by wellness programs to help them maintain health and to support them when they become ill. Overall, there has been increased understanding and recognition of the stresses that arise in nursing and a reassessment of older norms and expectations concerning self-sacrifice. Working during an emergency such as an epidemic raises questions about when nurses can withdraw their services due to safety concerns. Provincial regulations, labour contracts, hospital policies, and professional association and regulatory college standards provide guidance. For example, the University of Toronto Joint Centre for Bioethics Pandemic Influenza Working Group’s (2005) document Stand on Guard for Thee provides an ethical guideline for nurses responding to a medical crisis, as does the Canadian Nurses Association (CNA) Code of Ethics for Registered Nurses (2017). The key message in guidance documents is that nurses have a duty to serve during a medical crisis but only when reasonable steps have been taken to reduce or eliminate risk. When there is inadequate equipment, nurses have reasonable grounds for not providing care. When nurses care for persons with communicable diseases, for example, they should be provided with appropriate infection-control equipment. If a safe environment is not provided, nurses should make the situation known. When nurses are harmed, there should be a systems analysis to learn from the event and make the environment safer. The CNA urges that all stakeholders, including professional associations, regulatory bodies, governments, and employers, collaborate openly and transparently in decision-making processes in anticipation of, and during, an emergency (CNA, 2012).

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Nurses enter the profession with the expectation of helping patients, families, and communities. However, they may find their ability to do so is compromised because they are short of time and other resources. Nurses need to identify when they require more resources to fulfill their duties with appropriate care, for their own safety as well as for that of patients. Even so, nurses are called to strive for excellent care under conditions that are sometimes less than conducive to excellence. To be sure, mindful of the possibility of exploitation and patients receiving less than adequate care, nurses working in such situations should address problems at the root level. Still, in the interim at least, the nurse may be faced with a problem that requires immediate attention. In order to meet the pressing needs of patients, under the less than ideal circumstances, he or she may have to make some sacrifice, with a resolve to find a long-term solution to the untenable situation as soon as possible. Advocacy on behalf of patients or for the protection of nurses to address structural or systemic issues can put nurses at odds with their employer and with other health professionals, and should be undertaken with careful forethought. Securing evidence and working through ethical arguments is essential. Nurses need not face these challenges alone. They can consult with trusted peers or mentors, an agency’s ethicist, their labour representatives, and professional nursing organizations. In some instances it may be appropriate to seek professional and legal advice. Nurses can work together and through their professional organizations to ensure that their work environments do not unduly require sacrifice or put both themselves and their patients at risk (Armstrong & Silas, 2019).

3. CHALLENGES DETERMINING WHAT IS BENEFICIAL Willingness to benefit others is one thing; knowing how and being able to benefit them is something different. Good intentions constitute an important aspect of beneficence, but so too does the ability to produce good outcomes. These two aspects of beneficence—the psychological and the consequential— are reflected in the notion of care. On the one hand, caring can be conceived psychologically, as pertaining to someone’s attitudes or dispositions. In this sense, caring applies to persons and the spirit in which they act in relation to others. Thus we praise someone for being concerned about and empathizing with others, for caring about them.

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We admire caring people for the good wishes or intentions upon which they act, sometimes even when their good intentions lead to bad results. Although caring in this sense can in itself be beneficial to others—just knowing that someone cares can have therapeutic value—such benefits may be limited. Caring intentions may not be enough (Rodney, Kadyschuk, et al., 2013). On the other hand, caring can also be conceived as applying not to persons as such, but rather to knowledge, skills, and abilities. Caring in this sense aligns with the recent movement toward evidence-based practice, which “involves seeking out and incorporating into care the most reliable sources of evidence available,” including “knowledge produced by research” (Brown, 2014, p. xi). Along these lines, nursing care refers to the many ways that the nurse, informed by evidence and nursing knowledge, is able to benefit the patient. Parents care for their sick child in the psychological or attitudinal sense, but, lacking the knowledge of how to benefit, may be unable to care in this second sense. Conversely, someone may know how to care in the sense of being able to secure a good outcome without caring in the sense of being genuinely concerned about the good of the other. Ideally, nursing care should combine both these senses of caring. Competent and compassionate nurses both care about their patients and use their nursing knowledge, skills, and judgment to care for them in ways that are effective and produce benefit. “A caring relationship,” Benner and Wrubel (1989) argue, “sets up conditions of trust that enable the one cared for to appropriate the help offered and to feel cared for.” This trust includes both the feeling that the caregiver really does care, and the confidence that he or she has the knowledge and ability necessary to make a positive difference. The caring relationship is diminished if either of these conditions is not met. In some cases, caring people possessing knowledge and skills to benefit others may be unsure about how best to produce benefit. There may be different or conflicting kinds of benefits to be considered. Benefits may be mixed with burdens or harms, and predicted outcomes may be more or less uncertain or probable. Judgments about how best to benefit the patient may be complicated by considerations of risk and burden as weighed against benefit. Often there is uncertainty, and perhaps disagreement, about the benefit of treatment for patients who are critically ill or living with chronic health problems. Treatment decisions in the grey zone, where benefit to the patient is uncertain or disputed, pose deep and difficult questions about the values, goals, and limits of health care. For example, on the one hand everyone will agree on

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the importance of quality of life, even if they disagree about what precisely it means or how to measure it. One of the reasons we value health care as we do is because it makes a difference in our quality of life. On the other hand, however, sanctity of life is also an important value in health care. The respect given patients should not depend on their health status or quality of life. The lowweight neonate is to be treated with the same respect as the healthy newborn. Thus interpreted, both quality of life and sanctity of life are important values in health care. It is important for health professionals to consider the impact of their interventions on the patient’s quality of life. It is also important for health professionals to demonstrate respect for human life, regardless of its quality. However, how different people interpret and prioritize these values in specific contexts varies. For example, some health professionals interpret sanctity of life to mean that life should be preserved regardless of its quality. Others believe that when quality of life falls below a certain threshold it is pointless or wrong to preserve life. Some faith groups may rank sanctity of life above the quality of life but agree that there is a point when death is so near and quality of life is so diminished that allowing only comfort measures is acceptable. The difficulties in determining what is beneficial are compounded by the fact that the scope of beneficence can be understood either in very broad or very narrow terms, depending on how broadly or narrowly benefit to the other is construed. Given that the patient becomes the nurse’s responsibility based on the expectation and trust that he or she will act on behalf of the patient’s health interests, it seems reasonable to qualify the kind of caring specific to nursing in terms of health. Others may act beneficently toward patients in different ways—an accountant caring for their financial well-being, a chaplain for their spiritual well-being, and so on—but the nurse’s care is primarily oriented toward their health and well-being. This, after all, is what nursing experience and knowledge prepare and qualify nurses to do. For the moment, let us restrict the scope of beneficence to acting on behalf of the patient’s good insofar as this good is identified with health. Even so, several problems arise. The concept of health is subject to different interpretations, and definitions of health span a wide range of meanings. At one extreme are those who hold a narrow conception of health, defining it as the absence of disease or infirmity and restricting it to a biological or medical level. At the other extreme are those who hold a broader conception of health, extending it to include matters of lifestyle and to incorporate psychosocial and environmental considerations. The World Health Organization (WHO) definition of health as

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“a state of complete physical, mental, and social well-being” (Callahan, 1973, p. 77) is the most well-known and influential example of a broad conception of health. This definition—initially published in 1948 as the first principle in the preamble of the WHO’s founding constitution—remains unchanged, and is reaffirmed in WHO’s current constitution (WHO, 1948/2014). However, it has been elaborated somewhat differently, and even more expansively, in subsequent WHO documents focusing on health promotion. The Ottawa Charter for Health Promotion notes that “to reach a state of complete physical, mental and social well-being, an individual or group must be able to identify and to realize aspirations, to satisfy needs, and to change or cope with the environment” and adds to the definition that health is a “resource for everyday living” and “a positive concept emphasizing social and personal resources, as well as physical capacities” (WHO, 1986). The Charter enumerates wide-ranging “fundamental conditions and resources for health,” namely: “peace, shelter, education, food, income, a stable eco-system, sustainable resources and social justice, and equity.” To promote health according to this definition would mean something considerably different from promoting health according to the narrower biomedical definition. Cultural factors may also shape our conceptions of health and related health practices. Levesque reviews studies that demonstrate this; in her own work in the Canadian context she describes similarities and differences in the conceptualization of health and health practices among Francophones, Anglophones, and First Nations peoples (Levesque, 2011; Levesque & Li, 2014; Levesque et al., 2013). She notes that although “multidimensional health models,” like those furnished by the WHO, “offer a more comprehensive view of health, they may not reflect the views of members of cultural minority groups, as these models were developed based on studies that examined health conceptions among Caucasian, English-speaking populations” (Levesque et al., 2013, p. 216). Differences concerning the understanding of health, and how it is maintained and restored, have a bearing on what it means to act beneficently in the name of someone’s health. Levesque and Li (2014) highlight two important implications of cultural differences in the conception of health and related health practices: “(a) Health policy makers need to take into account the role culture plays in the way people conceptualize health to ensure that health policies and programs reflect the particular beliefs and needs of their target populations and (b) health-care professionals need to be aware of the diverse views of their patients to provide culturally appropriate care” (p. 628). As Canada has

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become more culturally diverse and as respectful awareness of the needs and rights of First Nations people has increased, nursing has played a leading role promoting and advocating for health professionals to develop “cultural competence” and incorporate “cultural safety” into the education and practices of health professionals (Hart-Wasekeesikaw & Gregory, 2009; Laws & Chilton, 2013; Racine, 2014). Beneficence becomes further complicated if we question the initial restriction of beneficence to caring about health-related matters. Health, after all, is one good among others, albeit an important one. Many people prize other things above health, such as devotion to a political or religious cause, personal ambition, or the acquisition of wealth. They may even be quite willing to sacrifice their health for such things. How does one assess the value of health relative to other values? Beneficence can be interpreted to incorporate the good of others conceived more broadly than in terms of health. Nurses also care about the ability of patients to act in accordance with their own values, and about the right of patients to be told the truth. However, in the literature and in common usage, the scope of beneficence tends to be restricted to the good of the patient as defined in terms of health. Understood in this way, beneficence may come into conflict with other important values, and in particular with autonomy and truthfulness. It is in these terms that the issue of paternalism is usually expressed.

4. PATERNALISM The issue of paternalism comes to the fore when we shift from the question of what standards to use in determining the good of another, to the question of who gets to decide or whose standards ought to be accepted as authoritative. For instance, how much weight ought to be given to the patient’s rights or autonomy when what the patient wants is incompatible with the patient’s health interests as decided by the nurse or the health team? Such is the classic scenario for paternalism. Paternalism, according to Gerald Dworkin’s (1971) well-known definition, is the “interference with a person’s liberty of action justified by reasons referring exclusively to the welfare, good, happiness, needs, interests, or values of the person being coerced” (p. 108). In somewhat more blunt language, Jameton (1984) defines paternalism as “making people do what is good for them” as well as “preventing people from doing what is bad for them” (p. 90). The paternalistic person, acting in

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the name of beneficence, takes steps that he or she believes will promote the good of the other, perhaps even though the other disagrees or protests. Given their orientation toward benefiting the patient, health professionals have been inclined toward paternalism. Such paternalism used to be much more acceptable than it is today. A generation ago, it was not uncommon for health professionals to make treatment decisions they believed to be in the patient’s health interests without their patients’ fully informed consent, or withhold information they believed would be harmful to the patient. Although some measure of paternalism still prevails among nurses as well as physicians, those days have passed. One of the most profound changes in contemporary health care has been a shift in the locus of decision-making from health professionals to patients. Concurrent with this, there has been an increasing emphasis on values such as patient autonomy and the right to know the truth. When the nurse believes that the patient’s wishes are not in their best interests, it is acceptable to ask for clarification and ensure the patient meets the standard of understanding relevant information and is deciding freely. If the patient does understand and is acting freely, the nurse has a duty to act consistently with the patient’s wishes, even if the nurse disagrees. Although paternalism has become a derogatory term in the field of health care, some commentators believe that the pendulum has swung too far away from beneficence toward autonomy (Pellegrino & Thomasma, 1988). It is important to note that even those who highly prize freedom or autonomy grant that paternalism is justified when someone lacks the capacity to make informed decisions. The most obvious example is in the parent-child relationship. Indeed, the term paternalism derives from this relationship (pater being the Latin word for father). It means to relate to someone as a father relates to a child. Paternalistic caring may be justified in the case of children, depending on the decision to be made and the child’s experience and development in reasoning. A five-year-old child may be trusted to decide whether to have a hamburger or a sandwich, but the question of whether or not to have an immunization is beyond his or her maturity. The doctrine of the “mature minor” holds across Canada as a matter of common law, and in several provinces, including British Columbia and Ontario, is enshrined in statutory law. Mature minors “are people under the age of majority who can understand and appreciate the consequences of accepting or refusing medical treatment” (Guichon et al., 2017, p. 787). Rather than using a set age alone to determine whether a child will be allowed to consent to medical

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treatment, the question is whether the child has the capacity to understand and appreciate the information necessary to make an informed decision. When adolescents decide they do not want aggressive treatment for cancer, and their parents want treatment to continue, nurses and colleagues determine if the patient meets the criteria of a mature minor. If so, the child can make this important treatment decision. Clearly, these situations can be difficult, and so psychological and ethical support for all involved—children, parents, other family members, and health team members—ought to be made available. It is questionable to interfere with the liberty of adults for their own good because generally adults are sufficiently mature or competent to make their own decisions based on what they value and what they believe to be good. Laws that restrict the freedom of adults for their own good, such as laws mandating the use of seatbelts or motorcycle helmets, are problematic from this perspective, notwithstanding that they do prevent injury and save lives. However, sometimes even adults may be unable to understand and appreciate relevant information and decide freely (e.g., due to some cognitive impairment) and paternalistic intervention may be warranted. If adults lack capacity, we generally accept that it is appropriate for others to decide on their behalf. Even so, determining whether someone—adult, adolescent, or child—lacks the capacity to make certain choices may be very difficult.

5. BENEFICENCE: CARING FOR INDIVIDUALS IN CONTEXT In the health care traditions, the principal focal point of beneficence has generally been the individual patient, often to the neglect of the myriad ways that the health of the individual is linked to other people, to the community, and to the environment. However, there is no reason to restrict the scope of beneficence to individuals and not to extend it more broadly. Indeed, the codes of ethics of the various health professions typically express a broader commitment to do good (see, for example, “Ethical Endeavours Related to Broad Societal Issues” in the CNA Code of Ethics, 2017, pp. 18–19). In nursing, this broader understanding of beneficence is also evidenced by the profession’s very strong health promotion and public health orientation, and its more holistic concern with health in the context of family, community, and environment. However, when we extend the scope of benefit beyond the well-being of the individual, new complexities arise. How should the benefit owed to one

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individual be weighed against possible benefits (and perhaps harms) to others? This question might arise in any number of contexts. For example, nurses might need to balance the patient’s good against the good of the patient’s family or the community, to whom nurses might also have obligations, even if it is clear that the primary and foremost obligation is to the patient. Nurses employed or practising in the community may speak about the “nursing of families” or of the “family as patient.” Nurses are encouraged to practice “person- and family-centred care” (Registered Nurses’ Association of Ontario [RNAO], 2015). How can conflicts among individuals within a family or among patients, their families, and their nurses be avoided, and managed when they do occur? Clarity at the start of the relationship about who will be the family decision-maker or spokesperson and who will receive information can help ward off issues that might otherwise arise. Transparency and ongoing evaluation of care given will reduce risk of conflicts. Increasingly, considerations of justice are coming to the fore in the health care system. How should the nurse proceed when the good of an individual patient or group of patients is in competition with that of others? In a busy hospital unit, too much time spent with one patient might mean not enough time spent with another. How should benefits be distributed in such a situation? To be sure, nurses should rank needs and allocate time based on these needs. There are workload measurement tools that can help nurses prioritize patient needs; the same tools can demonstrate that staffing levels are insufficient (Armstrong & Silas, 2019). In the final analysis, decisions about prioritization are ethical decisions. Principles and theories relevant to making them responsibly will be discussed in the chapter on justice (see chapter 6). Beneficence enjoins nurses to use their knowledge, skill, and judgment not just at the individual level but also at the level of population health. There has been growing recognition that the health of individuals is influenced by broader determinants of health beyond the clinical context where the nurse encounters the individual patient in need of care: inequality, income, employment, culture, environment, and so forth. The sort of clinical interventions in which nurses and other health professionals are trained, and even the interventions that can be made by health professionals working in public health, are scarcely able to affect these broader population health determinants, which need to be addressed at the level of law and public policy. However, nurses and nursing associations can act and advocate in various ways to influence public policy.

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6. CONCLUSION The good related to the health and well-being of patients is rightly regarded as a matter of primary concern for those who are trusted with the duty to promote health and provide health care. In this chapter, we have seen that caring for others in a manner befitting their profession poses considerable challenges for nurses. In some cases there may be uncertainty about how much giving and caring beneficence requires of the nurse. In other cases there may be uncertainty or disagreement about which course of action will be the most beneficial. In yet other cases, the commitment to the good of an individual may be in conflict with the commitment to the good of others, particularly if there is a shortage of health care related resources. Even when the requirements of beneficence are relatively clear to the nurse, other ethical issues may arise when other values are also at stake in the situation. The patient’s values and wishes may be incompatible with the nurse’s values or with the plan of care the nurse believes to be most beneficial. In such situations, the nurse must weigh concern for the patient’s health against respect for the patient’s autonomy or right to choose. Unchecked, the nurse’s commendable desire to do good can easily slide into paternalism. Ethics may not forbid paternalism, but at the very least it requires that one be prepared to give justifications if one puts the patient’s autonomy second to what one believes to be the patient’s good. Doing good and benefiting others is much more than a matter of having good intentions. Upon careful examination, the apparent simplicity of the concept of beneficence proves to be somewhat deceptive. Each case that follows illuminates a different feature of beneficence and accentuates different issues that affect ethical nursing practice.

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CASE STUDIES CASE 1: Parens Patriae and the Case of J.J. Some persons lack capacity to make their own health care decisions, and so others are entrusted to make decisions on their behalf. With children, parents or guardians normally assume this responsibility. The burden of deciding can be great, particularly when life and death are in the balance. The choices can be agonizing. Sometimes the best available evidence regarding treatment options is inconclusive and expected outcomes are uncertain. Even if a given treatment is very likely to have a good outcome, it may entail significant risks or unpleasant side effects. Parents are constrained by law in their decision-making, which instructs them to be guided by the child’s best interests and specifies other conditions. In most instances parents defer to what the health team recommends. However the parental decision may be at odds with what the health team believes is in the child’s best interest, even after prolonged discussion and attempt to achieve compromise. Different cultural values or beliefs can complicate the issue. In some very serious situations, such as life-threatening conditions, the issue may be brought before the courts to decide. The longstanding common-law doctrine of parens patriae grants the state the right and responsibility to protect children (and other vulnerable persons lacking capacity) when their interests are seriously threatened, even to the point of removing children from the care of their parents. Statutory law across the country has provisions and protocols for this to occur in some circumstances. In the health care context, laws guide the courts in ruling whether in situations of conflict the decision of the parents or the decision of the health team shall prevail. The following case is based on the situation of an Ontario First Nations child who had acute lymphoblastic leukemia, and whose mother refused evidence-based, life-saving treatment for her child in favour of non-conventional treatment, citing her cultural belief in traditional medicine. The child was assessed to have a 90 to 95 per cent probability of survival with recommended chemotherapy. Pediatric oncologists are not aware of any child surviving without chemotherapy. This case followed on the heels of a very similar case involving a First Nations child, Makayla Sault, which had arisen months earlier and had been the subject of considerable media attention and controversy. Both children were

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diagnosed with leukemia at the same hospital. In both cases life saving chemotherapy was initiated but parental consent was subsequently withdrawn part way through the treatment with the stated intent of pursing traditional medicine instead. In both cases, the health team disagreed with the decision to discontinue chemotherapy, because they believed the children would die without it. The refusal of treatment was reported to the same local child protection agency. In both cases, the child protection agency declined to intervene. In both cases, the family sought alternative treatment at the same facility in Florida. However, there are also important differences between the two cases, which will be brought out in the case description and commentary below. The story of J.J., an 11-year-old Haudenosaunee girl from the Six Nations of the Grand River, captured national headlines in 2014 and 2015. In August 2014, she had been diagnosed with acute lymphoblastic leukemia at McMaster Children’s Hospital in Hamilton, Ontario. J.J. and her family were informed that she had an excellent chance of being cured with conventional chemotherapy but would be expected to die without it. J.J.’s mother initially agreed to the treatment. However, about a third of the way through a 32-day induction period of chemotherapy she withdrew consent “having decided that she wanted to pursue traditional aboriginal medicine to treat her daughter’s cancer” (Jarvis et al., 2015, p. 1). The staff oncologist, Dr. Vicky Breaky, reported the refusal to the Brant Family and Children’s Services, the local branch of the Children’s Aid Society ( CAS ), and followed up with a letter to the director asking the agency to intervene in the hope that it would assume decision-making authority and authorize the recommended treatment plan despite the mother’s refusal. Dr. Breaky wrote: It is with grave concern that I report the medical neglect of [J.J.]. [J.] is an 11 [year-old] girl who has been admitted for medical therapy of acute lymphoblastic leukemia since her diagnosis on August 12, 2014. Her mother, [D.H.], initially agreed to treatment with chemotherapy, but decided on August 27 to discontinue the treatment with the plan to treat [J.] with traditional medicines. As a medical team, we feel that this decision to terminate chemotherapy puts [J.’s] life at risk. Given her clinical diagnosis and the genetic tests to assess her risk stratification, this leukemia has an approximately 90% cure rate with the recommended treatment.

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Without chemotherapy, we are not aware of any survivors of paediatric leukemia. (Quoted in Hamilton Health Sciences Corp. [HHSC] v. DH, 2014, para. 12) The Brant CAS began an investigation, which included consultation with a representative of the Six Nations of the Grand River, which opposed CAS intervention. On September 8, 2014, J.J. was discharged from the hospital with plans for follow-up. J.J.’s mother indicated at the time that she was planning to take her to the Hippocrates Institute in Florida. On September 16, the CAS informed the hospital that, as in the case of Makayla Sault, it did not consider J.J. to be a “child in need of protection” and had decided not to intervene. However, in J.J.’s case the hospital took the further step of applying under section 40(4) of the Child and Family Services Act for an order from the Court “to produce or apprehend” J.J. so that the Court could determine whether J.J. was “in need of protection.” The first hearing took place September 17 before Justice Gethin Edward who, like the mother and J.J., was a member of the Six Nations of the Grand River. At that hearing Justice Edward ordered that J.J. not be removed from the province while the case was being heard but J.J. had already left for Florida with her mother, who declined to return. The application was opposed not only by the CAS but also, and on different grounds, by the Six Nations of the Grand River. The Nations argued before the Court that provisions in the Constitution Act affirming Aboriginal and treaty rights supported the mother’s treatment refusal for her child. As Justice Edward interpreted this provision and other relevant law, he concluded that the mother’s “decision to pursue traditional medicine for her daughter J.J. is her aboriginal right” ( HHSC v. DH , 2014, para. 81). Moreover, he added that “such a right cannot be qualified as a right only if it is proven to work by employing the Western medical paradigm. To do so would be to leave open the opportunity to perpetually erode aboriginal rights” (para. 81). He rejected the application on the grounds that he could not “find that J.J. is a child in need of protection when her substitute decision-maker has chosen to exercise her constitutionally protected right to pursue their traditional medicine over the applicant’s stated course of treatment of chemotherapy” (para. 83). This ruling was extremely controversial and widely criticized. The Ontario Attorney General initiated discussions with the parties involved and extended

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the deadline for appeal three times in hope of reaching a satisfactory solution. In January 2015, in the course of these discussions about J.J., Makayla Sault died. This occasioned a new round of media attention to J.J.’s case. In March 2015, J.J.’s cancer returned after a period of remission. In discussion with the involved parties, J.J.’s mother decided to resume J.J.’s chemotherapy, alongside the use of traditional Haudenosaunee medicine that she had already been receiving. The core health team, which had initially included a doctor and a traditional Haudenosaunee health care provider, was expanded to include a senior pediatric oncologist recommended by Ontario, and, at the invitation of the family, a Haudenosaunee chief, who was also a practitioner of traditional medicine. In April 2015, Justice Edward issued an addendum to his initial ruling, responding to a joint submission made to him by J.J.’s mother, the Attorney General, the hospital, and other involved parties. In his addendum, he wrote: There were many calls for the Attorney General of Ontario to pursue litigation; however, the Attorney General chose to engage in a dialogue with the parties that ultimately led to an approach that spoke more to what joins us as opposed to what separates us. The joint submission, that has been read into the record, notes how the province and the family collaboratively worked to form a health care team to bring the best both had to offer to address J.J.’s ongoing treatment. This approach recognizes the province’s acceptance of the family’s right to practice traditional medicine and the family’s acceptance of western medicine will most certainly help their daughter. It is simply a recognition of what is in J.J.’s best interest. Such an approach bodes well for the future. ( HHSC v. DH , 2015, p. 5) Justice Edward also endorsed and accepted the recommendation in the joint submission that he clarify his November 2014 decision by adding specific amendments, including the following amendment in paragraph 83: recognition and implementation of the right to use traditional medicines must remain consistent with the principle that the best interests of the child remain paramount. The aboriginal right to use traditional medicine must be respected, and must be

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considered, among other factors, in any analysis of the best interests of the child, and whether the child is in need of protection. ( HHSC v. DH , 2015, Appendix) At the time of writing this chapter, J.J. is still alive. According to Mitchell et al. (2015), “whether the seven-month gap in chemotherapy administration between August 2014 and March 2015 will affect the child’s medical outcome will likely never be known” (p. 293).

Case 1: Commentary In treatment decisions concerning children, the first issue to consider is whether the child is capable of consent. In many jurisdictions, including Ontario, the “mature minor” doctrine has replaced a fixed, legal age of consent. The test is whether the particular child can understand and appreciate the treatment options and the consequences. The more serious and complicated the decision, the more stringently the test is applied. In J.J.’s case, the hospital physicians assessed that she lacked adequate capacity. However, the CAS was not convinced that this had been supported by sufficient evidence and raised this concern with the hospital and in their argument to the Court. Justice Edward accepted the physicians’ assessment, noting that “she was not able to describe her symptoms and did not address questions directly asked by the medical team, but looked to mom for her responses.” His finding was “that she lacks the ability to understand her diagnosis and its therapy, nor could she possibly fully appreciate the consequences of the decision to stop chemotherapy” (HHSC v. DH, 2014, para. 38). If it is determined that a child lacks capacity to make a treatment decision, decision-making falls to a substitute decision-maker, typically the child’s parents, who is required to consider above all the child’s best interests. If parents decline consent for treatment that the health team believes is necessary, health professionals are obligated by law to report the situation to a child protection agency. In Ontario, the Child and Family Services Act (1990) obligates reporting if “the child requires medical treatment to cure, prevent or alleviate physical harm or suffering and the child’s parent or the person having charge of the child does not provide, or refuses or is unavailable or unable to consent to, the treatment” (s72[1]5). The health professionals in J.J.’s case, as in Makayla’s, acted consistently with this obligation in reporting to the CAS.

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In life and death treatment refusals the child protection agency, upon investigation, would normally assume guardianship of the child and authorize the required treatment, apprehending the child if necessary. This protocol follows from the doctrine of parens patriae, according to which the state assumes the role of the parent if a child is deemed to be at serious risk of harm and in need of protection. This is how the legal protocol has been applied in cases involving Jehovah’s Witnesses parents who refuse life-saving blood transfusions for their children for religious reasons. This protocol was not applied in J.J.’s case. The fact that she was a First Nations child and that her mother indicated that she wanted to pursue traditional medicine in lieu of the conventional treatment was decisive in the reasoning of the Brant CAS, and subsequently of Justice Edward, not to intervene on J.J.’s behalf. How should we frame the key issue raised by this case? As a first approximation, we might be tempted to frame it as a conflict between beneficence, on the one hand, and autonomy, on the other. However, this framing is one-sided in aligning beneficence with the health professionals as against the mother. By all accounts J.J.’s mother was a good and loving mother, motivated by beneficence and concern for J.J.’s best interests as much as were the health professionals. “If there is one thing everyone can agree on,” Picard (2017) comments in speaking of Makayla and J.J., “it’s that these girl’s parents wanted the best for them. They saw their children suffering while undergoing chemo and wanted it to stop. Obviously, their fears were not assuaged; they were not convinced that benefits outweighed risks.” Based on the information we have, it seems correct to say that the health professionals and J.J.’s mother alike were acting beneficently. However, they had very different views about J.J.’s best interests and how her interests would best be served. The health professionals operated from the conventional paradigm of evidence-based, scientific medicine; the mother’s decision-making was informed by her cultural beliefs. She favoured non-conventional treatment that she believed was consistent with her First Nations cultural tradition. In initially refusing the recommended treatment, she believed, albeit without evidence and even against evidence, that alternative treatment had a better chance of curing J.J., without the very unpleasant side-effects that can accompany the conventional treatment, which she conceived as “poison.” In an interview with CBC, her mother said: “Before I took her off chemo, I made sure that I had a comprehensive healthcare plan that I was very confident was going to achieve ridding cancer of her body before I left the hospital. This is not something I think

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may work, this is something I know will work” (quoted in Walker, 2015). Walker reports that J.J.’s mother “said her daughter received cold laser therapy, Vitamin C injections and a strict raw food diet, among other therapies at Hippocrates” (Walker, 2015). One could say that J.J.’s mother was misguided in believing what she did about these “therapies,” but that is no reason to suppose that she was any less beneficent in concern for J.J. than were the health professionals. It would also be misleading to characterize the position of J.J.’s mother in terms of autonomy. Autonomy means self-determination. In the health care context, it pertains to health decisions that a patient might make concerning his or her own health and treatment decisions. In this case, J.J.’s mother was not the patient and was making a decision not for herself—determining her own treatment—but rather on behalf of her child, who was assessed to be incapable of making decisions for herself. In place of autonomy, it would be more accurate to speak of the right of parents to make decisions on behalf of their children. As mentioned earlier, under parens patriae the government can assume the decision-making right that otherwise belongs to the parent when the parent refuses required medical care. When the refusal is based on religious beliefs, as it is for Jehovah’s Witnesses parents, religious freedom is also in play. In J.J.’s case, it was decisively significant that J.J. and her mother were First Nations members and the treatment refusal was grounded not in a claim to religious freedom but rather in the rights of First Nations peoples, and specifically in the right to pursue traditional medicine. Justice Edward’s November ruling was controversial not only because he affirmed that such a right exists. More importantly, he also affirmed the mother’s exercise of this right “over the ... course of treatment of chemotherapy,” regardless of whether traditional medicine was “proven to work by employing the Western medical paradigm.” He did not address the question of what would be in the child’s best interests, as might be expected in such a case, as that question was not germane given the mother’s Indigenous right. Justice Edward also did not address the question whether the treatment that J.J. received in lieu of conventional treatment at the Hippocrates Institute was in fact “traditional medicine” (Shehata, 2016, p. 40). Ethicist Arthur Schafer, director of the University of Manitoba’s Centre for Professional and Applied Ethics, stated bluntly what he took to be the significance of the ruling: “It means that unlike other children, aboriginal children whose parents make a blatantly unreasonable decision will not be protected by the courts” (quoted in Paul, 2014). Arguing that the ruling should be appealed, he noted that “this is the only case in Canadian history involving the life or

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death of a child in which the court has not placed the best interests of the child as the factor that trumps everything else” (quoted in Frketich, 2015). He expressed a widely held criticism of the ruling in saying that “First Nations children should be given no less protection than any other Canadian child in circumstances where their parents make a decision which appears to the health care team as not just mistaken, but so wildly unreasonable, that the child is in need of care and protection” (quoted in Gallant, 2015). By contrast, J.J.’s First Nations community, interpreting the ruling against the background of past injustices and mistrust, celebrated it as a step forward for the rights of First Nations people. Commenting on the ruling, Justice Murray Sinclair, Chair of the Truth and Reconciliation Commission, emphasized that “a significant feature of the decision-making process” in the case of both Makayla’s and J.J.’s parents “was that they did not trust, and did not like, the way that the medical system was going to treat their children” (quoted in Galloway, 2014). For First Nations people, the use of the legal system and state intervention to force medical treatment “just generates more distrust” he commented. Such distrust is not surprising given the painful history of residential schools, including neglect and abuse, in which the government removed First Nations children from their parents and erased their culture, supposedly for their own good, and the notorious “sixties scoop” in which thousands of Indigenous children were removed from their families and communities, often without consent, and placed mainly with middle-class non-Indigenous families (McKenzie et al., 2016). Chief Justice of the Supreme Court Beverley McLachlin labelled Canada’s colonial policy of “assimilation,” which was the basis for the residential schools, “cultural genocide” (Fine, 2015). “It is not for the doctors ... to go to the court and say to the court, you must compel these parents to let us do what we want to do to that child,” Sinclair asserted. “It is, in fact, for the parents, I think, to be persuaded that what they are going to do will engage them in a way that’s appropriate” (quoted in Galloway, 2014). The use of the legal system to coerce medical treatment for children is indeed a drastic measure. For First Nations and other Indigenous peoples, in the context of the still open wound and legacy of the residential schools and the ongoing struggle to recover their culture and assert their rights, the harms of such coercion—if not to the child, to the family and the community—could be significant, especially if it meant apprehending the child from unwilling or resisting parents. Richardson and Stanbrook (2015) note: “Had the court forced J.J. to undergo such treatment, the mistrust, anger and resistance that might

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have ensued within her community could have greatly compromised any future ability to provide optimal care not only to her, but to all Aboriginal people” (p. 1). To be sure, for health professionals it is above all the best interests of the child, who is their patient, that matters, in consideration of harms and benefits to the child. However, this is not to say that broader harms and benefits should not be taken into account, at least to the point that this is compatible or even aligned with the child’s best interests. Persuasion is better than legal coercion. No stone should be left unturned in the effort to listen to and work with parents who refuse required treatment and to find workable solutions. Did this occur in J.J.’s case? Mitchell et al. (2015) claim that the “McMaster paediatricians fulfilled their legal and ethical obligation” only “after exhausting all collaborative efforts, including ethics consultation, to encourage the family to accept that chemotherapy was in the child’s best interests, just as they had done in the case of Makayla Sault” (p. 293). Nonetheless, it must be acknowledged that after a health care team has tried its best to find a resolution through collaboration, some parents may remain unpersuaded to accept the treatment that the team believes is required. As it turned out, J.J.’s mother did eventually decide to continue the treatment, alongside the use of traditional medicine. However, it is important to note that this did not happen until, after the alternative treatment had failed, the cancer had returned, Makayla had died, and extensive discussions had occurred involving the attorney general and the parties to the legal matter with the prospect of an appeal of Justice Edward’s ruling looming in the background. Let us suppose, as may well have been true in J.J.’s case, that in fact there was nothing the health care team could have done differently at the time to persuade J.J.’s mother to accept the conventional treatment. What then? Justice Edward’s ruling seemed to be that in such an instance the Indigenous right to choose treatment paths trumps all other considerations and forecloses the possibility of state intervention to force treatment. However, he subsequently reviewed his decision and added an addendum to his ruling stating that “the right to use traditional medicines must remain consistent with the principle that the best interests of the child remain paramount” (HSSC v. DH, 2015). This significantly limits the right as it was articulated in his initial ruling, and reaffirms what up until his initial ruling had been the accepted legal norm: The child’s best interests should be at the centre of decision-making. “It has now been clarified,” Jarvis et al. (2015) write, commenting on Justice Edward’s addendum, “that the law remains the same, i.e., that with respect to any issue involving the health of a

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child—any child—that the child’s best interests are always paramount ... the right to use traditional indigenous medicine is constitutionally protected, but it is not absolute when it comes to the treatment of children” (pp. 3–4). Leaving aside the complex legal and public policy questions raised by this case, what lessons can be drawn from it for health professionals? From a legal point of view, the “bottom line,” Jarvis et al. (2015) write, is that the “obligations of health care providers” remain unchanged: “If a physician believes that the treatment decisions of a SDM [Substitute Decision-Maker] places a child at medical risk, and thus a child in need of protection, he or she has the obligation to report” (p. 5). However, the recourse to reporting is nonetheless a drastic last resort. J.J.’s case challenges health professionals to reflect on possible changes that could mitigate conflict and reduce the likelihood of the need to exercise this obligation. The factors leading to the refusal in J.J.’s case, such as generalized distrust of the health system and health related beliefs, practices, and values divergent from the scientific culture of Western medicine, are not unique to J.J. or even to Indigenous peoples overall. In an increasingly multicultural and pluralist society, health professionals will encounter and need to address this changing social reality in the patients, families, and communities to whom they relate. Building trust is foremost among the challenges that health professionals face, and particularly as concerns First Nations and other Indigenous peoples. In its 2012 study of barriers First Nations people face in their dealings with the health system, the Health Council of Canada (2012) found that: “Many Aboriginal people don’t trust—and therefore don’t use—mainstream health care services because they don’t feel safe from stereotyping and racism, and because the Western approach to health care can feel alienating and intimidating” (p. 1). Whatever one’s views about state-compelled medical treatment for children whose parents refuse required medical treatment, and without faulting the health professionals involved, one can agree that lack of trust informed parental decision-making in both the case of J.J. and Makayla. Editorializing on these cases, Richardson and Stanbrook (2015) underscore the importance of trust for effective health care, arguing that to “make medical treatment acceptable to our Aboriginal patients the health care system must earn their trust by delivering respect” (p. 1). Respect could be interpreted and expressed in many different ways, including the avoidance of stereotypes and care taken to learn about the values that matter to the individual or family in context. Respect would also mean appreciating the historical effects of colonization on Indigenous peoples in Canada, particularly the effects of systemic racism

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on Indigenous peoples’ health and well-being (Wasekeesikaw et al., 2019). Interpreted in view of the qualified right to use traditional medicine Justice Edward (HHSC v. DH, 2015) posited in the addendum to his initial ruling, respect would mean accommodating traditional medicine—whatever one’s views of its efficacy—at least to the extent that this was not contra-indicated alongside the required treatment. The Truth and Reconciliation Commission of Canada (2015) made several recommendations for improving health and health care delivery for First Nations and other Indigenous communities (pp. 205–11), including compulsory education for health professionals on Indigenous health issues and “skills-based training in intercultural competency, conflict resolution, human rights, and racism” (recommendation 24). The Commission also urged: “We call upon those who can effect change within the Canadian health-care system to recognize the value of Aboriginal healing practices and use them in the treatment of Aboriginal patients in collaboration with Aboriginal healers and Elders where requested by Aboriginal patients” (recommendation 22). What it means precisely to “recognize the value of Aboriginal healing practices” is open to interpretation. We do not suppose it means that the health care providers who accommodate and incorporate these practices into negotiated care plans must themselves believe them to be efficacious in a strictly evidence-based sense. It is enough to recognize and respect that they have value for the patients or their families, and that accommodation of those values may be necessary for any given plan of care to be effective, or even accepted. Addressing the underlying issue of lack of trust involves many different sorts of initiatives. Certainly education is important, which includes learning about the colonization of Indigenous peoples and the power imbalance in relationships that impact Indigenous experience. Health organizations are partnering with local Indigenous health organizations to provide more culturally safe health care that will support the holistic needs of First Nations, Métis, and Inuit people (Darroch et al., 2017). Some institutions offer culturally specific Indigenous programs and adopt strategies to recruit Indigenous staff (Clifford et al., 2015). Specialized services across the country have emerged, such as Ontario’s Aboriginal Health Access Centres, that provide a combination of traditional healing, primary care, cultural programs, health promotion programs, community development initiatives, and social support services to First Nations, Métis, and Inuit communities. The British Columbia First Nations Health Authority supports the national reconciliation process by working

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with First Nations communities and partners at Health Canada. Their work addresses cultural safety by supporting Indigenous families to engage in an early childhood program that helps families and their community overcome mistrust and suspicion of staff and the system (Gerlach et al., 2017). Lack of trust in the health system is an issue not only for Indigenous people. Canada has become increasingly multicultural, as is reflected in changes to the nursing workforce itself. Nurses need to be sensitive to the fact that, increasingly, patients and communities served may have different health-related beliefs and practices. If they are to feel welcome in the health system, these will have to be taken into account, if not accommodated. This is the main idea conveyed by the concept of “cultural safety.” Education about cultural safety is one of the ways that the nursing profession has sought to address the challenges of nursing in an increasingly multicultural and pluralist society. Racine (2014) notes that “cultural safety is now embodied in standards of practice and codes of ethics set by nursing regulatory bodies and professional associations in Canada and abroad” but believes nonetheless that “the delivery of culturally safe care remains an unachieved goal” (p. 6). Nurses need to know about the resources available for cultural groups in their community. As Taylor (2003) notes, health professionals educated and immersed in the health system of Western medicine and health technology based on scientific evidence may be impervious to the fact that this Western system is itself a tradition and a culture—a way of being and of seeing the world. Its norms, including its ethical norms, will appear alien or even hostile to some people who make health decisions based on other norms and traditions. To be sure, it is a remarkable achievement, but it is not a panacea. Conventional treatments can be effective in remedying ills and promoting health. Evidence of effectiveness is often complicated by uncertainties and probabilities. Even treatments proven to be effective can sometimes have serious risks and side effects. However, to acknowledge the limitations and shortcomings of conventional health care does not mean endorsing relativism, as if conventional therapies that have been scientifically tested or validated are on par with ones that have not. Further, respecting the right of competent patients to make their own health decisions does not mean endorsing those decisions and whatever health beliefs may inform them. It does mean respecting the unique cultural and experiential contexts that individuals and families come to us with so that we can enter into more respectful and, ultimately, more effective negotiations regarding treatment and care decisions (Rodney, d’Agincourt, Canning, et al., 2013).

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In our diverse society, it is predictable that some people will refuse the Western, evidence-based approach to health care in favour of traditional, alternative, and complementary therapies. Nurses are required to respect patients’ wishes that are based on their values and cultural or religious beliefs, even when they believe patients are not making the best choices. However, the situation is different when parents make treatment decisions for a child who lacks the capacity to decide on treatment. Children are not chattel (property) of their parents and have not had the opportunity to decide whether to accept, revise, or reject their parents’ values and health related beliefs. Nurses can play an important role in informing parents of the evidence-based risks and benefits of treatment options, as well as listening to and addressing their concerns. Through careful and respectful listening, education, and dialogue, parents who wish to pursue alternative treatments inconsistent with the child’s best interests may be persuaded in favour of required treatment, or a compromise may be found in a hybrid of Western and alternative treatment. Family-focused care is fundamental to caring for children. At the same time the foremost duty of nurses, together with their colleagues, is to serve and protect the best interests of the child. This may require legal action as a last resort when all else fails, but such failure should not be for lack of understanding, sensitivity, or imagination.

Case 1: Questions 1. Reflect on the following statement by Professor Margaret Sommerville, a prominent Canadian ethicist: “We don’t discriminate on the basis that we’ll care for children who are not aboriginal in one way and children who are aboriginal in another.” What is the ethical basis of her statement? Do you agree with her? 2. The death of Makayla Sault in January 2015, while J.J.’s case was still unfolding, gave rise to a flurry of critical opinion pieces, such as a piece titled “A Little Girl Died because Canada Chose Cultural Sensitivity” (Coyne, 2015). Do you think this is a fair way to characterize the decision of CAS not to intervene? 3. Nurses are committed to evidence-based practice and following best practice guidelines based on evidence. Nurses are also urged to be respectful of

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cultural beliefs and alternative health practices that may be possibly beneficial but unproven, or be positively harmful. Do you think these complex expectations of nurses can be reconciled? 4. The Truth and Reconciliation Commission of Canada (2015) issued the following call to action: “We call upon medical and nursing schools in Canada to require all students to take a course dealing with Aboriginal health issues, including the history and legacy of residential schools, the United Nations Declaration on the Rights of Indigenous Peoples, Treaties and Aboriginal rights, and Indigenous teachings and practices. This will require skills-based training in intercultural competency, conflict resolution, human rights, and anti-racism” (p. 211). What do you think about this call to action? Reflect on how current nursing students are learning about Indigenous health issues. 5. Many Indigenous people look to their elders for guidance when making ethical decisions about health care. Does your employer or institution include elders in decision-making involving Indigenous patients? Should elders be involved? How could an elder be found? What perspective, values, and decision-making process would an elder bring to the discussion? CASE 2: Disagreement about Treatment Decision-Making Nurses are committed to holistic caring and to taking seriously how patients experience their health and illness. This commitment may be tested when patients make decisions that nurses believe are regrettable or imprudent, and that in their view may lead to harming, not helping, the patient. The promotion of patient choice has gained momentum in recent years. Nurses generally consider this to be progress from former days when paternalism ruled and patients had much lesser voice or input into decisions about and affecting the care they received. As the movement for patient rights gained momentum, however, so too did momentum in nursing for professional and moral autonomy. Nurses are now entering the profession with an undergraduate degree. Many are studying in post-diploma courses. Thanks to their education and professional experience, nurses have the knowledge, skill, and judgment to assess patients and propose treatment. Experienced nurses want

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their expertise to be recognized. There are times when nurses must stop and think, can I accept this decision? Can I provide the requested care? Can I agree to this refusal of treatment? These questions faced the nurses involved in the care of Julia, a patient with a serious swallowing problem, who contrary to her nurses’ advice insisted on continuing on a diet of solid foods. The issue is further complicated in virtue of her partner’s involvement and views about Julia’s capacity to decide and about what should be done. Julia, aged 40, is a patient on a stroke unit. A massive stroke that she experienced a month ago was a major blow. She is known to be resilient and strong. For 10 years she had been living independently, in her own home, with multiple sclerosis ( MS ). Since the stroke she needs help with all her daily activities, including eating meals. Her suffering, she says, has gone “off the Richter scale” because she has lost all independence. She remains mentally alert and communicates clearly. An assessment by a speech pathologist concludes that Julia cannot swallow safely. An aphasic (soft food) diet is ordered. When the meal arrives and the nurse brings the food to her mouth, Julia purses her lips and tells her to stop. Julia is furious and says she will not eat the soft foods. The nurse informs her that if she eats solid foods and drinks clear liquids she will have a higher likelihood of aspirating food. One risk is that she would develop aspiration pneumonia (the result of food travelling to her lungs). Another risk is that she may choke and die when consuming regular food and drinks. Other nurses attempt to persuade Julia to take the soft food and reinforce what she has been informed about the risks. As they probe her reasons she tells them that food, coffee, and the occasional glass of wine are among the few pleasures she has left in life. To her taste, the soft diet and thickened fluids are unpalatable and she scoffs at the suggestion that the diet “is not that bad” and that eventually patients get used to it. Furthermore, she feels that the soft diet reduces her to feeling like a baby and that she loses her dignity being fed “baby food.” Despite the efforts of the nurses to persuade her, she remains steadfast in insisting on her usual diet. Moreover, she makes it clear that if she aspirates she does not want anyone to try to save her life. Julia’s partner, Mark, says that she has become unbalanced and is now a different person. Consequently, he believes that her wishes should not be respected. The nurses believe that she does have capacity, but to confirm this they ask for an assessment of Julia’s capacity to decide. The capacity

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assessors find that she does have capacity to make decisions about nutrition and hydration. Mark rejects it, claiming that he knows his partner “better than complete strangers.” During this controversy, nurses are worried about helping Julia with her meals. They are concerned that if she aspirates when they are helping her with a regular diet, they will be held responsible for her death. They will only feed her soft foods. Julia goes on a hunger strike. Mark insists that she be force-fed through a feeding tube.

Case 2: Commentary The major ethical issue in this case is the conflict between Julia’s wishes and preferences, on the one hand, and those of the nurses and of her partner Mark, on the other. If the nurses do as Julia wishes and feed her regular foods, she may aspirate and possibly die. However, if her hunger strike persists, she will certainly die. A secondary issue, upon which the above issue depends, concerns whether Julia has the capacity to decide, about which Mark is in disagreement not just with Julia but also with the capacity assessment and with the nurses. Patients, families, and nurses may have different views and values about what makes life valuable and worth living. Accepting or refusing food and water may have different emotional and ethical significance for different patients. Julia’s nurses and her partner Mark appear to share the same values and wishes. They want to promote her well-being by reducing her risk of aspirating. Among nurses and colleagues, decisions about capacity and consent may generate heated debates focused on what patients are able to understand and appreciate. A first step was to decide whether Julia was capable of making this decision. Nurses are sensitive to the possibility that “uncooperative” patients will be labelled irrational or incapable not because of their capacity to reason but because of what they choose. Mark’s position that his partner is not reasoning soundly and is irrational certainly deserves consideration. However, “irrational” is a somewhat vague and plastic term that can be code language to justify overriding a patient’s decision just because the patient does not agree with clinical recommendations. It is necessary to consider the reasons that inform her decision, whether one agrees with the decision or not. Moreover, nurses no longer consider competency to be global, but instead, decision-specific and time-specific. Patients must be assessed case by case to

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determine whether they have an understanding and appreciation of their situation in relation to specific decisions to be made. In this case the question was specifically about whether Julia has the capacity to decide about nutrition and hydration. Julia’s main reason for refusing seems to be tied to her views, apparently considered, about what makes life worth living. She knows the moral significance of her decision and that she risks dying sooner rather than later. She knows that aspiration remains a risk even with an aphasia diet, but that the risk is significantly reduced. In sum, she has demonstrated that she understands and appreciates her situation, her options, and the consequences of her decision. In view of the meaning that she attaches to the pleasures in life that she thinks make her life worth living—good meals, coffee, and wine—her decision appears to be authentic and in character. Others may not attach so much significance to these pleasures that they would rather not live than be without them, but it is not “irrational” for Julia to value them to the extent she does, and certainly not an indication that she lacks the capacity to decide. The mental health team, who would have expertise in making such assessments, have confirmed the nurses’ belief that she does have capacity relative to the specific decision. There is no indication that anyone is putting pressure on her to refuse soft foods; to the contrary, the pressure is on her to decide otherwise. Nurses today are encouraged to practice person- and family-centred care, which considers patients holistically in light of the many dimensions of their lives and, as relational ethics would have it, in the context of their relationships with family and others. This approach to nursing practice is relevant for thinking about the case of Julia, given the involvement of family and disagreements among the patient, her family member, and nurses. Best practice guidelines published by the RNAO (2015) are a good starting point for analysis along these lines: “Person- and family-centred care,” the RNAO says, “must be based on the development of a true partnership within the therapeutic relationship that recognizes, supports, and values the diversity, distinguishing features, and contributions of all participants (the person, the person’s family, and healthcare providers) and encourages genuine responsive actions and behaviours” (p. 19). One of the challenges in this case is that one of the “participants,” Mark, is a family member who disagrees with Julia’s decision, and disagrees with the assessment of her capacity. Another challenge is that the nurses also disagree with Julia’s decision. Let us consider these challenges in turn, beginning with the disagreement between the nurses and Julia. The RNAO document puts a good deal of

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emphasis on “partnerships” and on “a participatory model of decision making” (p. 31). The relationship between the nurse and the patient is discussed in terms of “sharing decisions on health care,” which “requires a mutual understanding that the person is the expert on themselves and their life situation, and that health-care providers are the experts on evidence-based practices and legislation in health care” (p. 34). This way of putting things has the merit of acknowledging the special skills and knowledge that nurses bring to the relationship by virtue of their education and experience while at the same time acknowledging the patient’s special familiarity with and knowledge of his or her life circumstances. This sounds fine and good, but what happens when the nurse and the patient are in conflict, as they are in this case? Certainly nurses should make every effort to resolve the conflict through effective communication and provision of relevant information to the patient. In this case it appears that the nurses have done that. What then? The idea of “participatory decision-making” and of “shared decisions” can be misleading to the extent it obscures the fundamental moral and legal point, which the document acknowledges and emphasizes, that in the final analysis the decision to accept or refuse treatment in fact is not “shared” but belongs to the patient. “When planning care and services,” the document notes, “healthcare providers should engage with the person in a participatory model of shared decision making, respecting their right to choose the preferred interventions for their health” (p. 31). The crucial point is that, provided the patient has capacity, the patient, and the patient alone, has the right to make the decision, regardless of whether the nurse agrees or not. The role of the nurses is to assist the patient in making the decision that rightfully belongs to the patient. The assistance includes identifying and clarifying options. The nurse shares information with the patient to assist the patient to make a decision; the nurse does not share the decision. Moreover, although the description of patients as “experts on themselves and their life situation” captures something noteworthy about the relationship between the nurse and the patient, the decision in the final analysis belongs to the patient not because he or she is an expert but because he or she is by right entitled to make the decision (and regardless of how “expert” he or she is on his or her life and life situation). Let us turn then to Mark’s participation in the decision-making. Here too one needs to be careful about how one interprets keys terms in the RNAO guidelines document, and in particular the expression “patient- and family-centred.” Can there really be two “centres” of care? What if the two centres are not

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in alignment? If there are indeed two “centres,” the patient and the patient’s family are not equal “participants” in decision-making. Indeed, in the case of competent patients, family are only participants at all if that is what the patient wishes. In Julia’s case, her family member, Mark, disagrees with her decision, as do the nurses. However, he needs to understand that the decision is not his to make. To be sure, Mark does not accept the capacity finding. Definitely his views about this should be taken into consideration, especially since in virtue of his relationship with Julia over an extended period of time he would be in a position to notice whether her decision and reasoning were inconsistent with her past behavior. On the other hand, however, one could argue that because he strongly disagrees with Julia’s choice and wants her to be force-fed, his informal assessment of her as “irrational” and lacking capacity is biased in favour of getting the outcome he wants. Regardless, a key point to recognize is that although capacity or competence are words that are used in everyday discourse, in the health care context “capacity” has a specific clinical and legal meaning. How or by what standards capacity is to be assessed is prescribed in law. Mark’s casual assessment, however well informed by past knowledge or however biased, is not on par with the professional and expert assessment of the mental health team. The decision of whether Julia has capacity does not belong to him but rather belongs to the mental health team. Moreover, even in the case of patients who lack capacity, when family members are entrusted with decision-making it is still the patient—his or her wishes and/or best interests—that is at the centre. If Julia were found to lack capacity, Mark would become the substitute decision-maker. This is an unenviable and onerous responsibility. His first duty would be to respect Julia’s wishes and values as expressed when capable. If she had not done so, he would be bound to decide based on her best interests. Deciding what someone’s best interests are is not black and white. It is unclear whether Julia’s best interests would be improved by force-feeding her. There could still be risks, albeit lesser, if she were force-fed by a feeding tube. Moreover, if treatment were initiated and she tried to remove the tube, chemical or physical restraints could be necessary to stop her from doing so. Leaving aside the humiliation, new risks would be associated with the use of restraints, such as pressure ulcers. To be sure, she would not be starving, and in this respect her condition would improve. However, best interest is about more than sustenance and physical well-being. Would the expected benefits of having a feeding tube outweigh these risks of harm to Julia?

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In Julia’s case, however, the fact is that she has been found to have the capacity to decide. If the nurses feed her regular food as she wishes, there is a good chance she will aspirate. The nurses would not be responsible for this outcome because they would be respecting her informed and freely made decision. Nonetheless, the situation would be distressing for them, and they could experience moral distress for the part they played in providing a form of care with which they strongly disagreed. The situation is bound to be stressful for all concerned: for Julia, for Mark, and for the nurses.

Case 2: Questions 1. Dining and food are associated with family, cultural, and religious values and can have symbolic meaning beyond mere sustenance. Julia appears to believe that her life would not be worth living without coffee, wine, and good food. Her partner believes that her decision to choose a high-risk diet over a much safer soft diet is irrational and proves that she lacks the capacity to decide. Do you agree with him that the decision by itself is sufficient evidence that she lacks capacity to make treatment decisions? 2. Nurses are taught that family-focused care is important. They are also taught that patients have the right to make their own decisions and not be coerced by family, friends, or caregivers. Discuss the ethical tension or conflict between these two things. 3. Can both the patient and the family be at the “centre” of nursing care? How would you apportion or distinguish the respective rights and responsibilities of patients, their families, and nurses in “shared decision-making.” 4. Discuss the experience of stress or distress that can arise when nurses participate in a plan of care freely chosen by a patient but to which they are strongly opposed. How should nurses and employers manage such stress or distress? 5. Suppose that Julia goes on a hunger strike. After a week, she says she wants to die and asks for medical aid in dying. She is assessed and does not qualify. Julia decides to go home to continue not eating or drinking. Should she be permitted to go home?

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CASE 3: Prescribed Opioids for Chronic Pain Chronic pain is a pervasive health issue in Canadian society, not only for patients who have cancer or malignant disease but also for patients who do not. The experience of pain, whatever the cause, can severely diminish quality of life and interfere with daily functioning and performance of routine activities. To address these serious problems, clinicians commonly prescribe opioids. Opioids can be very effective for pain management but they can also have serious negative effects. Indeed, the widespread use (and misuse) of opioids prescribed to address serious health issues has itself become a serious health issue in Canadian society. The Canadian Guideline for Opioid Therapy and Chronic Noncancer Pain (Busse et al., 2017) was developed by researchers at McMaster University funded by Health Canada and the Canadian Institutes of Health Research in recognition of the benefits and dangers of prescribed opioids. The Guideline notes some alarming facts about the use of opioids in Canada: ■ Canada has the second highest rate per capita of opioid prescription in the world when measured using defined daily doses, and the highest when defined using morphine equivalents dispensed, with more than 800 morphine equivalents per capita in 2011. ■ Among Ontarians receiving social assistance, 1 of every 550 patients started on chronic opioid therapy died of opioid-related causes at a median of 2.6 years from the first opioid prescription, while 1 in 32 of those receiving 200 mg morphine equivalents daily (MED) or more died of opioid-related causes. ■ An estimated 2,000 Canadians died from opioid-related poisonings in 2015 and initial numbers for 2016 are higher, with most deaths attributed to fentanyl. ■ In Ontario, admissions to publicly funded treatment programs for opioid-related problems doubled from 2004 to 2013, from 8,799 to 18,232. (p. E659) In response to these problems, the Guideline makes several recommendations, including “tapering to the lowest effective dose, potentially including discontinuation, rather than making no change in opioid therapy” for “patients with chronic noncancer pain who are currently using 90 mg morphine equivalents of opioids per day” (p. E663). The case below illustrates ethical challenges in managing the use of opioids for chronic pain and in tapering to reduce use.

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Joan has degenerative disc disease, a chronic condition. At the age of 60, on account of severe back pain, she could no longer work as a nurse. Her family physician referred her to the pain clinic at the hospital where she had been a respected nurse with an excellent record for 30 years. Clinic staff agreed with Joan that the cause of her back problem was occupation related and that repeated heavy lifting during her professional life resulted in her condition. With a combination of opioid medications at 120 mg and a daily exercise plan she was able to live independently for 10 years. Following the publication of the 2017 Canadian Guideline for Opioids for Chronic Non-Cancer Pain, and in view of media attention to the problem of overprescribing, the clinic changed its policies to be based on best practices for pain management. The nurse practitioner informed Joan that, in her case, this would mean tapering her use of opioids. Joan agreed to a reduction of 5–10 per cent every two weeks, at least until she was taking 90 mg per day. The withdrawal was hard but she persisted. However, after four weeks she reported that she could not manage on the reduced dose. She was in bed most of the day, could not exercise, and needed help with personal care. The nurse practitioner explained to Joan that she had become addicted to prescribed opioids and needed to continue with the tapering program. Joan responded: “If you lived in my body for twenty-four hours you would know that I need the opioids for my life to be worth living. The clinic started me on these drugs and now you cannot take them away. I have this problem because I cared for patients in this hospital. At my age, I do not care if I am dependent on opioids. If you do not provide the prescription, I will have to resort to other, less safe sources for the drugs I need.”

Case 3: Questions 1. Some would say that Joan is an “addict.” Do you think this term is accurate or judgmental? What other terms could be used? How would you refer to her need for opioids? 2. Joan reminds the nurse practitioner that the recognized cause of her degenerative disc disease was physical demands of nursing for over 30 years. Do you think that her dedication to patient care should be considered when Joan asks for restoration of her prescription to the level that managed her pain?

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3. Nurses are taught to listen to patients when they report the level and type of pain they are experiencing. Have you witnessed patients having their report of pain and need for analgesics dismissed? Present these situations and discuss the ethical issues evident when there is a disagreement about the level of pain and how to manage the pain. How would you respond to Joan’s statement that she needs to return to a higher dose for her life to be worth living? 4. Note that upon reviewing the evidence, the Guideline authors assigned the tapering guideline to the category “weak recommendation,” which they explain as follows: “With weak recommendations, clinicians should recognize that different choices will be appropriate for individual patients, and they help patients arrive at a decision consistent with their values and preferences” (p. E661). They caution that “weak guidelines should not be used as a basis for standards of practice.” In the recommendation itself, they note that “some patients are likely to have a substantial increase in pain or decrease in function that persists for more than one month after a small dose reduction; tapering may be paused and potentially abandoned in such patients” (p. E 663). How would you interpret the guideline as applied to Joan’s case? How can the nurse practitioner adequately take into account Joan’s situation and her preferences and values? Joan has implied that if she does not have the prescription for the dose she needs she will buy street drugs, which could be much more unsafe. Should this consideration influence how the nurse practitioner responds to Joan’s request for the higher dose? CASE 4: Humanitarian Work in War-Torn Areas In 2017, Syria was the most dangerous country in the world for health professionals. The Union of Medical Care and Relief Organizations (abbreviated as UOSSM in keeping with its original name in French), a coalition of independent, humanitarian, and non-governmental medical organizations from around the world, reported the following grim statistics: “Since March 2011, UOSSM has documented 485 separate attacks against medical facilities in Syria, claiming the lives of 765 medical personnel. This includes 225 doctors, 134 medics and 158 nurses. In 2016, 123 facilities were attacked and 63 medical personnel killed, not to mention the scores more who have been maimed and wounded.

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From March 2011 to November 15 2016, 117 medical facilities were attacked in Aleppo and 96 in Idleb.” There are documented cases of the use of chemicals to harm and kill combatants and civilians. The case below describes the situation of a nurse who feels called by her values to put her skills and expertise to use in a dangerous war zone. Brittainy, a recently graduated registered nurse, has been invited to join a team of Canadian health care providers travelling to Syria to provide medical care. Her partner, who has read news reports of attacks against health care providers in Syria, is adamantly opposed due to the dangers. Brittainy is also concerned, but she knows that it will be a valuable learning experience for her and she feels that she has a duty to help, notwithstanding the danger.

Case 4: Questions 1. How should family considerations and responsibilities factor in nurses’ decisions about career decisions. Would it make a difference if Brittainy had a child? 2. Brittainy says that she has a “duty to help.” Do you agree with her? How would you describe her decision from the standpoint of virtue ethics? 3. Nurses are expected to advocate for their patients. Additionally, nurses are encouraged, according to the CNA Code of Ethics for example, to advocate for societal changes to promote health and safety. What are some of the ways nurses can advocate? How can nurses advocate for safer conditions for health care workers and civilians in war zones? 4. Suppose Brittainy joins the humanitarian medical agency. They receive a seriously injured patient from the combatant group that was attacking their field hospital. How do you think Brittainy might feel when she is assigned to the patient? What is her ethical obligation to this patient based on beneficence? 5. The trauma of living in a war zone will have lasting health effects for many of the refugees from Syria who have come to Canada. What implications might this have as concerns how nurses should interact with such patients?

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CASE 5: Global Health, Cultural Differences, and Nursing Values Global health issues have become local ethical issues for Canadian nurses, who sometimes encounter cultural practices that are inconsistent with Canadian health care practices and, in some cases, Canadian law. These cases can be emotionally challenging and require sensitivity and respectful communication. One traditional or cultural practice that occurs extensively in some parts of Africa, Asia, and the Middle East is the cutting or the partial or complete removal of a female’s genitalia. The terminology used to refer to this practice is itself a matter of some controversy. The World Health Organization (WHO, 2018), which distinguishes four main variants of the practice, refers to it as “female genital mutilation” (FGM). Because this value-laden term itself expresses a strong condemnation of the practice, it is preferred by several organizations engaged in advocacy campaigns to eradicate the practice, including WHO and the United Nations. It is also the term used in the Canadian Criminal Code (1985), which in 1997 was amended to add “female genital mutilation” under the heading of “aggravated assault.” Others prefer to use the term “female genital cutting” (FGC), because, as Perron et al. (2013) explain, they consider it “medically correct, neutral, and culturally sensitive” (p. 1030). Yet others refer to the practice with an amalgamation of both terms separated by a forward slash (FGM/C or FGC/M). Notwithstanding terminological differences, the practice is opposed by health care organizations, nationally and internationally, in recognition of its harmful long-term and short-term health effects, such as infections, infertility, and childbirth complications. Negative health effects aside, the practice is also opposed on human rights grounds. The WHO (2018) states that it is recognized internationally as a violation of the human rights of girls and women. It reflects deep-rooted inequality between the sexes, and constitutes an extreme form of discrimination against women. It is nearly always carried out on minors and is a violation of the rights of children. The practice also violates a person’s rights to health, security and physical integrity, the right to be free from torture and cruel, inhuman or degrading treatment, and the right to life when the procedure results in death.

Canada is home to many people from countries with a high incidence of this practice. It is unknown to what extent the practice occurs in Canada, but

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given that it is illegal and those who arrange or perform it are subject to criminal charges, it is a difficult phenomenon to study. One international study of female members of the Dawoodi Bohras sect included 18 Canadian women brought up in the sect, two of whom indicated that the procedure had been performed on them in Canada (Taher, 2017, p. 37). Given study limitations, it is not possible to extrapolate from these numbers to determine the incidence of the practice in this community in Canada, which is estimated to have 20,000 to 40,000 members, much less to extrapolate to other Canadian diaspora communities originating from countries in which the practice is prevalent. Toronto Star reporter Jayme Poisson (2017) quotes an official from the federal government’s Vulnerable Children’s Unit who wrote that, based “on the limited information available, it is possible that a few thousand Canadian girls are at risk, some of whom will be taken overseas for the procedure.” Poisson examined emails from Canadian Government employees that “reference multiple cases the government is aware of in which Canadian girls have undergone or are alleged to have undergone cutting abroad.” Here too it would be difficult to gauge the incidence of what is known as “vacation cutting” because the removal of someone from Canada for the purpose of receiving the procedure is illegal. The case study below concerns a nurse who becomes aware of a child at risk of being taken from Canada for the procedure and raises several ethical issues. Mrs. Omala’s genitals were cut when she was a child, aged ten, in the country from which she emigrated. She had an extensive form of FGC . In Canada, she needed c-sections for the delivery of her children, had long post-natal stays in hospital and has chronic infections. She is pregnant and goes to the pre-natal clinic at the community health centre that serves a multi-cultural population. She is accompanied by her 9-year-old daughter who tells Nicole, a nurse at the clinic, that she is worried about a ceremony for her that will be happening during the summer break in her family’s country of origin. In discussion, Nicole learns that Mrs. Omala has planned a vacation with her daughter in their homeland where she will “be cut as is our tradition.” Nicole informs Mrs. Omala that this practice is not legal in Canada and is opposed by national and international health organizations, including her professional association and college. She tells her that the practice, which she refers to as “female genital mutilation,” can cause a variety of health problems for her daughter. Mrs. Omala is irked by Nicole’s use of this term to refer to the practice and informs her that it is disrespectful of her cultural

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heritage. She adds: “ You need to understand that decisions about our children’s wellbeing are private family decisions. You should not judge or interfere. A nurse will perform the procedure using sterile equipment, so it will be safe.” Nicole is taken aback by Mrs. Omala’s response and asks her to reconsider her decision. She schedules an appointment to see Mrs. Omala in two weeks for her next pre-natal visit. As she reflects on their conversation, Nicole is not satisfied with how she approached the topic with Mrs. Omala. She wonders whether she was wrong to use the terminology she did and what it means to be respectful of someone’s cultural heritage in cases of serious disagreement about practices. She also wonders whether she is ethically or legally obligated to contact the Children’s Aid Society given that she believes that the daughter is at risk. She is also concerned that Mrs. Omala might not fully understand the health risks to her daughter. She arranges a staff meeting in the hope that the team will develop a policy about how to respond to this situation and the sorts of questions that she is trying to think through before Mrs. Omala’s next prenatal visit.

Case 5: Questions 1. Three terms are commonly employed to identify the practice of cutting or removing some part or all of female genitalia: i. Female genital mutilation (FGM) ii. Female genital cutting (FGC) iii. Female genital mutilation and cutting (FGM/C) What term do you support and why? How would you suggest Nicole refer to the procedure when talking to Mrs. Omala? Can you think of other instances where the words we use to name a controversial practice or position are themselves subject to debate? 2. Respecting diversity and providing culturally safe care are part of good nursing care. However, there are limits as concerns the extent to which nurses should accept or cooperate in cultural practices they believe to be harmful or unethical. Have you been in a situation or witnessed when the

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culturally based wishes of a patient or patient’s family raised ethical issues for you and the staff? How did you or the health care team respond? 3. Mrs. Omala says her decisions about her child are private and should not be interfered with. Do you agree with this claim? Under what circumstances would it be appropriate to interfere? In your practice jurisdiction, would the nurse have a legal duty to contact a child protection agency in a case like this? 4. There are several reasons Nicole could use to try to persuade Mrs. Omala not to have the procedure done on her daughter: i. It is against Canadian law ii. It is a human rights violation iii. It can result in serious health problems for her daughter, as she (Mrs. Omala) has experienced herself iv. It is oppressive against girls and women Which of these reasons best captures your own concerns about this practice? Which reasons would you emphasize in seeking to persuade Mrs. Omala? 5. In a roundtable develop and discuss the main points of an agency or hospital policy about how to respond to future cases such as this one.

REFERENCES Armstrong, P., & Silas, L. (2019). Canadian Federation of Nurses’ Unions: Standing for workplace safety. In C. McDonald & M. McIntyre (Eds.), Realities of Canadian nursing: Professional, practice, and power issues (5th ed., pp. 140–61). Wolters Kluwer. Beauchamp, T.L., & Childress, J.F. (2012). Principles of biomedical ethics (7th ed.). Oxford University Press. Benner, P. (2001). From novice to expert: Excellence and power in clinical nursing practice (Commemorative Edition). Prentice Hall. Benner, P., & Wrubel, J. (1989). The primacy of caring: Stress and coping in health and illness. Addison-Wesley.

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Benner, P., Sutphen, M., Leonard, V., & Day, L. (2009) Educating nurses: A call for radical transformation. Jossey-Bass. Bradshaw, A. (2009). Measuring nursing care and compassion: The McDonaldised nurse? Journal of Medical Ethics, 35(8), 465–68. https://doi.org/10.1136/jme.2008.028530 Brown, S.J. (2014). Evidence-based nursing (3rd. ed.). Jones & Bartlett Learning. Busse, J.W., Craigie, S., Juurlink, D.N., Buckley, D.N., Wang, L., Couban, R.J., Agoritsas, T., Akl, E.A., Carrasco-Labra, A., Cooper, L., Cull, C., da Costa, B.R., Frank, J.W., Grant, G., Iorio, A., Persaud, N., Stern, S., Tugwell, P., Vandvik, P.O., & Guyatt, G.H. (2017). Guideline for opioid therapy and chronic noncancer pain. CMAJ, 189(18), E659–666. https://doi.org/10.1503/cmaj.170363 Callahan, D. (1973). The WHO definition of “health.” Hastings Center Studies, 1(3), 77–87. http://www.jstor.org/stable/3527467 Canadian Nurses Association (CNA). (2012). Position statement: Emergency preparedness and response. https://cna-aiic.ca/~/media/cna/page-content/pdf-fr/ps119_ emergency_preparedness_2012_e.pdf?la=en Canadian Nurses Association (CNA ). (2017). Code of ethics for registered nurses. https://www.cna-aiic.ca/-/media/cna/page-content/pdf-en/code-of-ethics-2017edition-secure-interactive.pdf Child and Family Services Act, RSO c C.11, s 37(2), (1990). Clifford, A., McCalman, J., Bainbridge, R., & Tsey, K. (2015). Interventions to improve cultural competency in health care for Indigenous peoples of Australia, New Zealand, Canada and the USA: A systemic review. International Journal for Quality in Health Care, 27(2), 89–98. Corbin, J. (2008). Is caring a lost art in nursing? International Journal of Nursing Studies, 45(2), 163–65. http://doi.org/10.1016/j.ijnurstu.2007.09.003 Coyne, J.A. (2015, 21 January). A little girl died because Canada chose cultural sensitivity over Western medicine. New Republic Online. http://www.newrepublic.com/ article/120823/canada-lets-makayla-sault-die-leukemia-over-religious-sensitivity Criminal Code of Canada, RSC, c. C-46, s 268(3), 273.3(1), (1985). Dahlke, S. & Stahlke Wall, S. (2017). Does the emphasis on caring within nursing contribute to nurses’ silence about practice issues? Nursing Philosophy, 18(3), e12150. https://doi.org/10.1111/nup.12150 Darroch, F., Giles, A., Sanderson, P., Brooks-Cleator, L., Schwartz, A., Joseph, D., & Nosker, R. (2017). The United States does CAIR about cultural safety within Indigenous health contexts in Canada and the United States. Journal of Transcultural Nursing 28(3), 269–77.

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Dworkin, G. (1971). Paternalism. In R.A. Wasserstrom (Ed.), Morality and the law (pp. 107–26). Wadsworth. Fine, S. (2015, May 28). Chief justice says Canada attempted “cultural genocide” on Aboriginals. The Globe and Mail. https://www.theglobeandmail.com/news/ national/chief-justice-says-canada-attempted-cultural-genocide-on-aboriginals/ article24688854/ Finfgeld-Connett, D. (2008). Meta-synthesis of caring in nursing. Journal of Clinical Nursing, 17(2), 196–204. Frketich, J. (2015, January 23). Medical ethicists decry death of Aboriginal girl. Hamilton Spectator. https://www.pressreader.com/canada/the-hamilton-spectator/ 20150123/281496454682704 Gallant, J. (2015, March 6). Ontario may appeal ruling allowing girl, 11, to be taken off chemo. The Star. https://www.thestar.com/news/gta/2015/03/06/ontario-mayappeal-ruling-allowing-girl-11-to-be-taken-off-chemo.html Galloway, G. (2014, November 20). Medical system told to examine why Aboriginal parents distrust it. The Globe and Mail. https://www.theglobeandmail.com/life/health-andfitness/health/medical-system-told-to-examine-why-aboriginal-parents-distrust-it/ article21686603/ Gerlach, A., Browne, A., & Greenwood, M. (2017). Engaging Indigenous families in a community-based Indigenous early childhood programme in British Columbia, Canada: A cultural safety perspective. Health and Social Care in the Community, 25(6), 1763–73. Guichon, J., Mohamed, F., Clarke, K., & Mitchell, I. (2017). Autonomy and beneficence in assisted dying in Canada: The eligibility of mature minors. Alta. L. Rev., 54, 775. Hamilton Health Sciences Corp. (HHSC) v. D.H., ONCJ 603 (CanLII) (2014, November 14). http://canlii.ca/t/gf8sg Hamilton Health Sciences Corp. (HHSC) v. D.H., ONCJ 229 (CanLII) (2015, April 24). http://canlii.ca/t/ghf0p Hart-Wasekeesikaw, F., & Gregory, D.M. (2009). Cultural competence and cultural safety in nursing education: A framework for First Nations, Inuit and Métis nursing. Aboriginal Nurses Association of Canada. http://hdl.handle.net/10133/719 Health Council of Canada. (2012). Empathy, dignity, and respect: Creating cultural safety for Aboriginal people in urban health care. www.healthcouncilcanada.ca/ rpt_det.php?id=437 Jameton, A.L. (1984). Nursing practice: The ethical issues. Prentice-Hall.

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Jarvis, D., Byrick, K., & de Wit, M. (2015). Update: Recent case regarding parent refusing chemotherapy for First Nations child in favour of traditional medicines: What are the implications for health care providers? CanLII Connects Commentary. http://canliiconnects.org/en/commentaries/37105 Lamb, M., & Storch, J.L. (2013). A historical perspective on nursing and nursing ethics. In J. Storch, P. Rodney, & R. Starzomski (Eds.), Toward a moral horizon: Nursing ethics for leadership and practice (2nd ed., pp. 20–40). Pearson-Prentice Hall. Laws, T., & Chilton, J.A. (2013). Ethics, cultural competence, and the changing face of America. Pastoral Psychology, 62(2), 175–88. https://doi.org/10.1007/ s11089-012-0428-1 Levesque, A. (2011). Conceptions of health: A cross-cultural comparison ([Unpublished doctoral dissertation]). http://www.collectionscanada.gc.ca/obj/ thesescanada/vol2/002/NR87594.PDF Levesque, A., & Li, H.Z. (2014). The relationship between culture, health conceptions, and health practices: A qualitative-quantitative approach. Journal of Cross-Cultural Psychology, 45(4), 628–45. Levesque, A., Li, H.Z., & Bohémier, M. (2013). Cultural variations in health conceptions: A qualitative approach. Pimatisiwin, 11(2), 215–29. McDonald, C. (2019). The gendered nature of nursing. In C. McDonald & M. McIntyre (Eds.), Realities of Canadian nursing: Professional, practice, and power issues (5th ed., pp. 276–84). Wolters Kluwer. McKenzie, H.A., Varcoe, C., Browne, A.J., & Day, L. (2016). Disrupting the continuities among residential schools, the sixties scoop, and child welfare: An analysis of colonial and neocolonial discourses. The International Indigenous Policy Journal, 7(2), Article 4, 1–24. Mitchell, I., Guichon, J.R., & Wong, S. (2015). Caring for children, focusing on children. Paediatrics & Child Health, 20(6), 293–95. Oberle, K., & Bouchal, S. (2009). Ethics in Canadian nursing practice: Navigating the journey. Pearson-Prentice Hall. Paley, J. (2002). Caring as a slave morality: Nietzschean themes in nursing ethics. Journal of Advanced Nursing, 40(1), 25–35. https://doi.org/10.1046/j.1365-2648.2002.02337.x Paley, J. (2008). Commentary on Finfgeld-Connett, D. (2008). Meta-synthesis of caring in nursing. Journal of Clinical Nursing, 17(12), 1668–69. https://doi.org/ 10.1111/j.1365-2702.2007.02026.x Pandemic Influenza Working Group. (2005). Stand on guard for thee: ethical considerations in preparedness planning for pandemic influenza. University of Toronto Joint Centre for Bioethics. http://www.utoronto.ca/jcb/home/documents/pandemic.pdf

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Paul, A. (2014, November 11). Courts cannot protect ill First Nations children. Manitoba Ethicist. http://www.winnipegfreepress.com/local/Courts-cannotprotect-ill-First-Nations-children-Manitoba-ethicist-282767581.html Pellegrino, E.D., & Thomasma, D.C. (1988). For the patient’s good: The restoration of beneficence in health care. Oxford University Press. Perron, L., Senikas, V., Burnett, M., Davis, V., Burnett, M., Aggarwal, A., Bernardin, J., Clark, V., Fisher, W., Pellizzari, R., Polomeno, V., Rutherford, M., Sabourin, J., Shapiro, J., Akhtar, S., Camire, B., Christlaw, J., Corey, J., Nelson, E., ... & Simmonds, A. (2013). Female genital cutting. Journal of Obstetrics and Gynaecology Canada, 35(11), 1028–45. Picard, A. (2017). Matters of life and death: Public health issues in Canada. Douglas and McIntyre. Poisson, J. (2017, July 14). Canadian girls are being taken abroad to undergo female genital mutilation, documents reveal. Toronto Star. https://www.thestar.com/news/ fgm/2017/07/14/canadian-girls-are-being-taken-abroad-to-undergo-female-genitalmutilation-documents-reveal.html Price, S.L., McGillis Hall, L., Angus, J.E., & Peter, E. (2013). Choosing nursing as a career: a narrative analysis of millennial nurses’ career choice of virtue. Nursing Inquiry, 20(4), 305–16. Racine, L. (2014). The enduring challenge of cultural safety in nursing. CJNR : Canadian Journal of Nursing Research, 46(2), 6–9. Registered Nurses’ Association of Ontario (RNAO). (2015). Person- and family-centred care. https://rnao.ca/sites/rnao-ca/files/FINAL_Web_Version_0.pdf Richardson, L., & Stanbrook, M.B. (2015). Caring for Aboriginal patients requires trust and respect, not courtrooms. CMAJ: Canadian Medical Association Journal, 187(3), 162. http://doi.org/10.1503/cmaj.141613 Rodney, P., d’Agincourt-Canning, L., et al. (2013). Working within the landscape: Ethics in practice. In J.L. Storch, P. Rodney, & R. Starzomski (Eds.), Toward a moral horizon: Nursing ethics for leadership and practice (2nd ed., pp. 254–81). PearsonPrentice Hall. Rodney, P., Kadyschuk, S., Liaschenko, J., Brown, H., Musto, L., & Snyder, N. (2013). Moral agency: Relational connections and support. In J.L. Storch, P. Rodney, & R. Starzomski (Eds.), Toward a moral horizon: Nursing ethics for leadership and practice (2nd ed., pp. 160–87). Pearson-Prentice Hall. Rolfe, G. (2009). Some further questions on the nature of caring. International Journal of Nursing Studies, 46, 142–45. https://doi.org/10.1016/j.ijnurstu.2008.04.010

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Shehata, A.M. (2016). Newfound Aboriginal right to pursue traditional medicine. University of Toronto Medical Journal, 94(1), 38–41. Taher, M. (2017). Understanding female genital cutting in the Dawodi Bohra community: An exploratory survey. Sahiyo, United Against Female Genital Cutting. https:// sahiyo.files.wordpress.com/2017/02/sahiyo_report_final-updatedbymt2.pdf Taylor, J.S. (2003). Confronting “culture” in medicine’s “culture of no culture.” Academic Medicine, 78(6), 555–59. Truth and Reconciliation Commission of Canada. (2015). Honouring the truth, reconciling for the future: Summary of the final report of the Truth and Reconciliation Commission of Canada. www.trc.ca Union of Medical Care and Relief Organizations (UOSSM). (2017, November 14). Five major hospitals attacked in Syria in past 48 hours. http://www.uossm-canada.org/five_ major_hospitals_attacked_in_syria_in_past_48_hours Walker, C. (2015, January 19). Makayla Sault, girl who refused chemo for leukemia, dies. CBC News. http://www.cbc.ca/news/aboriginal/makayla-saultgirl-who-refused-chemo-for-leukemia-dies-1.2829885 Wasekeesikaw, F.H., Bourque Bearskin, R.L., & McDonald, C. (2019). The legacy of colonization for the health and well-being of Indigenous people: Toward reconciliation. In C. McDonald & M. McIntyre (Eds.), Realities of Canadian nursing: Professional, practice, and power issues (5th ed., pp. 64–82). Wolters Kluwer. Watson, J. (2005). Caring science as sacred science. F.A. Davis. World Health Organization (WHO). (1948/2014). The constitution of the World Health Organization (48th ed.). Basic Documents. http://apps.who.int/gb/bd/ World Health Organization (WHO ). (1986). Ottawa charter on health promotion. World Health Organization Regional Office for Europe. http://www.who.int/ healthpromotion/conferences/previous/ottawa/en/ World Health Organization (WHO). (2018). Female genital mutilation. http://www. who.int/news-room/fact-sheets/detail/female-genital-mutilation

CH A P T E R 3

AUTONOMY The only freedom which deserves the name is that of pursuing our own good, in our own way, so long as we do not attempt to deprive others of theirs, or impede their efforts to obtain it. —J.S. Mill, On Liberty

Autonomy means freedom or self-determination. It encompasses the right to make independent decisions concerning one’s own life and well-being. Autonomy has primarily to do with being in control of one’s life and, as far as possible, being able to shape one’s life in accordance with one’s own desires, hopes, beliefs, and values. Respect for autonomy is prominent among the foundational principles or values in health care today. Health professionals express respect for autonomy by assisting patients to decide and achieve their own health goals and ensuring that care plans are consistent with patient wishes. However, there are a number of ways in which patient freedom can be limited or thwarted. In some circumstances, and for some reasons, this is justifiable, as when a patient is at risk of self-harming or harming others. In other circumstances, and for other reasons, it can be morally problematic or objectionable, as when health providers who disagree with a patient’s treatment choice impose their own views for what they believe is the patient’s own good. This chapter clarifies different meanings of autonomy and explores related ethical issues that arise when respect for autonomy is in tension or conflict with other values or principles. Under what circumstances, and for what reasons, is it justifiable to enact care plans without the patient’s consent or to restrict or impede patient autonomy? What criteria should we use to determine whether a patient’s decision is adequately informed and freely chosen and whether a patient has the capacity to give or refuse consent? The chapter also contains extensive discussion of the legal 117

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framework for informed consent and for assessment of capacity. The cases for this chapter deal with issues that illustrate the complexity of the concept of autonomy: advocating for voiceless patients, a substitute decision-maker’s insistence on continuation of life support that the health care team believes is futile, and assessment of capacity for persons with mental health issues.

1. THE MEANING(S) OF AUTONOMY The word “autonomy” derives from the Greek words autos, meaning “self,” and nomos, meaning “custom” or “law.” In ancient Greece, it had a predominantly political meaning. To say that a state was autonomous meant that it was independent and freely governed itself according to its own laws. A state would not be autonomous or free if, like a colony, it was ruled by another state that imposed its laws upon it. Within a given state, a citizenry lacks freedom or autonomy to the extent its rulers are not chosen by the people and enacts laws without regard to the people’s wishes or consent. Many wars have been fought to preserve, or to regain, political autonomy. In the health care context, the term “autonomy” has come to be used in several different senses or meanings referring to individuals. For example, we sometimes speak of someone lacking autonomy, or having diminished autonomy in consequence of illness or disability. Autonomy in this sense pertains to ability or capability in regard to some function: Someone who becomes paralyzed due to an accident loses ability or capability in regard to motility; someone who has suffered a brain injury may lose ability or capability—mental capacity—in regard to processing information and reasoning. This sense of autonomy, which is itself varied in meaning, is related to, but significantly different from, the sense of autonomy intended when we speak of “respect for autonomy.” Respect for autonomy has to do with treating others as free beings entitled to make their own choices in matters that concern their own good or well-being. Discussion about issues rooted in autonomy will be at cross-purposes if different people have in mind different meanings of the term. Building from Miller (1981) we will distinguish four main meanings of autonomy relevant to the health care context: (1) autonomy as free action, (2) autonomy as effective deliberation, (3) autonomy as authenticity, and (4) autonomy as moral reflection.

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1.1. Autonomy as Free Action A key meaning of autonomy, both in health care situations and more generally throughout society, is “free action” or “liberty.” Autonomy in this sense is associated with the right to make or control decisions that affect primarily your own well-being, subject to certain constraints or limitations that will be discussed later. It means being allowed to do what you want to do or, conversely, not being coerced to do something you do not want to do, or not having something done to you without your permission. Individuals are autonomous to the extent that they are free to use their reason to make decisions for themselves. Children are not autonomous to the extent that they lack the maturity of reason to govern themselves; until they reach maturity, they are subject to rules laid down or agreed to by parental authorities. The passage from childhood to adulthood is a passage toward increasing autonomy, as the range of decisions the child is permitted to make expands. Autonomy as freedom or liberty is aligned with its political meaning as concerns not just the relationship of one state with another but of a state with its citizens. In democratic states, autonomy is highly valued as a fundamental right and important for individuals and the state to flourish. Democratic governments have voting processes for citizens to choose their rulers, who represent them and their wishes in the acts they perform as legislators. Recognizing the tremendous power that governments have over citizens, democratic states place various checks and safeguards to ensure that governmental exercise of power does not limit or constrain the freedom of citizens more than necessary for government to fulfill its legitimate purposes, such as maintaining peace and order. In Canada, the highest expression of the importance and value of freedom is the Charter of Rights and Freedoms, which states that “everyone has the right to life, liberty and security of the person and the right not to be deprived thereof except in accordance with the principles of fundamental justice” (s.7). The Charter is the highest law in the land and is used to check all and any laws that the government might pass to ensure that their impact on freedom or liberty is minimal and justified. In the health care context, the value of autonomy or freedom underpins certain ethical and legal responsibilities of health care institutions and providers as concerns their relationship with patients. As we will come to later, these responsibilities include seeking consent for treatment and not unduly restricting a patient’s exercise of freedom.

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1.2. Autonomy as Effective Deliberation To be autonomous in the freedom of action sense—being able or permitted to make choices for oneself—says nothing about the quality of the decision process or reasoning leading to whatever choice one wishes to make. People often make choices for themselves that are uninformed or impulsive and in so doing choose freely in a minimal sense, but without much or any deliberation at all. A quite different sense of autonomy—autonomy as effective deliberation—pertains to the quality of the reasoning process leading to a given decision. Effective deliberation is close in meaning to rationality. It presupposes two main requirements: knowledge and reasoning ability. To the extent someone does not know or understand information relevant to a given decision, or acts impulsively without deliberating about the decision and its consequences, the resulting action is not autonomous. To the extent someone is incapable of understanding the relevant information or of reasoning effectively—for example due to a head injury—he or she lacks autonomy, even if he or she chooses freely in the minimal sense of not being impeded or constrained by others. 1.3. Autonomy as Authenticity Autonomy as authenticity pertains to the relationship between someone’s choice or action and their total being or character. Is the choice expressed consistent with the settled dispositions, values, and character of the person? Does it express who the person really is in some core and abiding sense? Or is the choice something of an anomaly, perhaps less an expression of the person’s true self than of some impairment or momentary passion? The trauma of pain, sickness, and suffering can cause someone to behave in a way that is “out of character.” For example, a normally outgoing person may become quiet and withdrawn; a person who is normally very cheerful may become depressed or irritable. Observing a striking inconsistency between past and present behaviour, it may seem to friends or family that the person’s behaviour or choice is not an expression of who they really are—not autonomous in the sense of being authentic or true to their character—but of some impairment. Imagine a middle-aged woman who has led a quiet and uneventful life and is known to her family to be conservative in her life choices. After learning that she has an aggressive cancer, she decides to go on a safari before beginning treatment, despite being informed that this will jeopardize her health and that

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the delay in starting treatment will reduce the chances of its being effective. Her family see her as acting out of character and believe that she is not thinking clearly—which of course is possible. But it is also possible that she has been shaken to the core by learning that she has cancer and as a result has reassessed and changed her values. Character is not static. We change over time in response to life experience. We may reject values that we have held for a long period of time, and go on to embrace new ones. For example, we may change long-held political views, or move toward, or away from, a religious affiliation. The experience of losing health and independence can reinforce a person’s values, or change them radically. Facing death can be a life-changing experience. The change observed by this woman’s family may reflect a fundamental personal change or change in character, and her decision may very well be authentic from that new standpoint. In short, just because a decision appears to be out of character does not establish that it is inauthentic. Moreover, even if someone makes a choice that is inauthentic, that does not necessarily mean that they lack the capacity to deliberate effectively. 1.4. Autonomy as Moral Reflection Our identities as persons and the beliefs and values we hold are formed over time by way of a variety of influences: what has been inculcated in us, in words and example, through our upbringing in families; our formal education; our friends; the music we have listened to and the movies we have watched; the news media we have been exposed to; and so on. Initially at least, the beliefs and values that largely define us as the persons we have become are less chosen than instilled—passively taken on board. Choices express values, and people may be more or less self-conscious about the values they express in their choices. Moral reflection involves becoming aware of the values expressed in making choices and choosing consistently in view of values and principles that have been subjected to thoughtful examination. Have the values expressed by the choice been freely and deliberately chosen? Or have they been adopted unconsciously and uncritically? Autonomy as moral reflection is similar in meaning to autonomy as authenticity. However, beyond mere consistency of choices with abiding character it requires a certain measure of self-examination. Someone who is habitually rude and inconsiderate to other people may be acting authentically in the

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bare sense of acting characteristically. However, it may be that they have never reflected on themselves in this regard. Are they aware of their behaviour and how they affect and are perceived by others? Have they made an explicit choice to be that sort of person? Autonomy in the sense of moral reflection, sometimes referred to as moral autonomy, names the process in which we subject our beliefs and values to critical examination, becoming progressively more autonomous as we own our choices. In and through this process we become responsible moral agents, accountable for our choices. 1.5. Meanings of Autonomy in Health Care The most significant development in modern bioethics has been the rise in prominence of autonomy. The early beginnings of this rise can be traced to the Nuremberg war trials that were held following the defeat of the Third Reich. The Nuremberg Code (Permissible medical experiments, 1949) was formulated in response to the horrifically invasive and harmful medical experimentation conducted in the Nazi concentration camps to which inmates, mainly Jewish, were unwillingly subjected without regard for their autonomy or their well-being. Its first and foremost principle was that the voluntary and informed consent of research subjects is an essential condition of morally justifiable research. At trial, defence lawyers for the Nazi physicians had tried to minimize their clients’ wrong-doing by arguing that allied countries had also conducted dangerous experiments on prison inmates. They tried to liken experiments in the camps to experiments conducted in the United States at Stateville Penitentiary, in which prisoners were infected with malaria to test their response to potential treatments (Shuster, 1997). The American expert for the prosecution pointed out that there were significant differences, and, importantly, that in the Stateville experiments the prisoner research subjects were “volunteers.” However, he “acknowledged that there were no written principles of research in the United States or elsewhere before December 1946,” and presented the court with three principles he had formulated at the request of the American Medical Association. He claimed that these principles, the first of which was a requirement that consent be informed by disclosure of relevant hazards, reflected common, albeit hitherto unwritten, research practices (Shuster, 1997, p. 1348). The Nuremberg Code grew out of these principles.

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The development of the principle of autonomy occurred in relation not just to research but also to medical care. However, there is an important difference in these two contexts as concerns the development in each. The Nazi experimentation in response to which the Nuremberg Code was formulated disregarded not just the autonomy but also the well-being of the research subjects. Certainly, it was not beneficent; in fact, it was positively maleficent—knowingly harmful to the research subjects. The provision of medical care, in contrast, was beneficent—oriented to the well-being of patients. Indeed, beneficence was valued to the point of disregard for autonomy. For example, up until the latter half of the last century in Canada and the United States it was not uncommon for care providers to withhold information from patients, such as a bad news diagnosis, in the belief that doing so was necessary for the patient’s own good. In the context of health care, autonomy developed largely in response not to disregard for patient well-being, but to an excess of beneficence—to a valuing of patient well-being to the point that patient autonomy was eclipsed in importance. Benign paternalism was the primary obstacle to autonomy. Today, the requirement of voluntary and informed consent for treatment, and more broadly, respect for autonomy—is solidly established in health care law and ethics. However, it should not be forgotten that this has occurred, with some resistance, in a gradual evolution. In the past, health care professionals, and physicians in particular, were entrusted with broader authority for decision-making in health care than they are today. Often the wishes of the patient were not solicited, and even if known were sometimes ignored. Sometimes information was withheld, or presented in a misleading way, to avoid causing the patient worry or harm. The early development of nursing as an adjunct to medical care made nurses partners in these practices. Nurses educated in the 1980s and earlier will recall that as students they were instructed not to give patients such basic information as temperature, blood pressure, or even the name of a medication. Such practices were supported and rationalized through the paternalistic notion that “the doctor knows best.” The nurse was expected to passively follow physicians’ orders; patients were expected to comply. This paternalism is no longer acceptable today. Respect for autonomy has become prominently enshrined in the code of ethics of medicine and of other health professions, which have become more independent from medicine—more autonomous one could say—in exercising their responsibilities to patients. Autonomy as free action or liberty underpins the principle of respect for autonomy and the right of patients to make decisions concerning their health

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care. Nurses demonstrate respect for autonomy by respecting the choices of competent patients and by helping patients, whose ability to act freely has been diminished by illness or disability, to maintain as much control over their lives as possible. Moreover, since institutional health care environments can be more or less conducive to the patient’s ability to exercise control, nurses advocate for institutional rules, policies, and practices that enable patients to exercise freedom and control to the extent possible consistent with their mental capacity. Autonomy in the sense of effective deliberation and of authenticity both pertain to the quality of the reasoning that informs decision-making and action. Autonomy in either of these senses can be relevant to assessing a patient’s capacity to provide consent. The decision of a patient who is capable of effective deliberation should be respected, even if their care providers disagree with the patient’s choice. That is the minimum that respect for autonomy in the sense of free action means. However, if a patient lacks this capacity to deliberate effectively—lacks the capacity to give informed consent or refusal with respect to a given treatment decision—it is justifiable on paternalistic grounds for a substitute decision-maker to decide on the patient’s behalf. Autonomy in the sense of moral reflection is significantly different from the other senses. Autonomy as freedom of choice, effective deliberation, and authenticity pertain primarily to patients, and conversely to the responsibilities providers have in caring for patients. Autonomy in the sense of moral reflection, on the other hand, applies primarily to health professionals. It indicates a value to which health professionals aspire. To be sure, it is something that everyone should strive for, and nurses can help patients to examine and clarify their values relative to their decision-making. However, moral reflection is not expected of patients and is not strictly relevant to the assessment of capacity for decision-making, which is a less demanding standard. Patients who are competent have the right to make treatment decisions whether or not they have reflected on their values relevant to the decision. Autonomy in the sense of moral reflection enjoins health professionals to examine themselves: to become aware of and examine their own values and be mindful of the influence of their values on their actions and decisions. Moreover, they do so in relation to the values collectively espoused by the profession. One of the purposes of a code of ethics is to facilitate such reflection. For example, the Canadian Nurses Association (CNA) Code of Ethics for Registered Nurses (2017) notes that “nurses’ self-reflection and dialogue with other nurses and health-care providers are essential components of ethical

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nursing practice” (2017, p. 4). Indeed, the purpose of this book is to facilitate moral reflection. In becoming more aware of their own values and the values of the profession, nurses become better prepared to fulfill their responsibilities in relation to patients, and to help patients who wish to reflect on their own values as those values bear on the decisions they face.

2. AUTONOMY AND CONSENT Three main conditions determine the extent to which someone is able to act or choose autonomously: the liberty or freedom to decide and act unimpeded or uncoerced by others, being adequately informed relative to the decision to be made, and having the rational capacity to understand and deliberate effectively toward decision. These conditions are central to the doctrine of consent in health care, in relation to which patients have certain rights and providers have certain ethical and legal responsibilities. The past fifty years or so have seen monumental change in attitudes and beliefs, and in legal and professional norms, concerning consent. Through a series of landmark legal cases and changes in the law, there has been a profound shift in the power relationship between health professionals and patients as patient rights grounded in autonomy, and the duties of health professionals with respect to those rights, became established. Many health professionals resisted these changes. One reason for this resistance was the once widely held belief that clinical information relevant to treatment decisions was too complex for patients to understand. This reason supported the paternalistic concern that if given the choice patients could be overwhelmed by the burden of choosing, or even by knowledge of their diagnosis and prognosis, and might choose options that, from the health professional’s point of view, were not in the patient’s interests. These beliefs and attitudes still persist in some measure, and in practice legal and professional norms concerning consent are not always followed, or followed in a perfunctory or cursory way. 2.1. The Law of Consent The law of consent has evolved to incorporate ethical norms rooted in autonomy. Generally, for consent to be legally valid, the person must give it voluntarily, be adequately informed, and have the capacity to consent. With respect

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to voluntariness, the fundamental idea is that the decision about whether or not to be administered a given treatment or to engage in a particular care plan belongs by right to the patient. The provider is responsible for seeking the patient’s consent and respecting the patient’s decision to accept or to refuse treatment or a plan of care. To proceed without the patient’s voluntary consent is to violate that right and could constitute assault and battery, even if the provider has acted with the best of intentions. With respect to being informed, the provider is responsible for providing the patient with information relevant to the patient’s treatment and explaining and responding to questions about the information as appropriate. Failing to adequately inform the patient, the provider could be open to a charge of negligence. Capacity is different from the other two conditions for valid consent in that it determines whether the patient’s consent is required to begin with. Capacity refers to the ability to deliberate effectively. If the patient has capacity, his or her decision to accept or to refuse treatment, and to withdraw treatment, must be followed. If the patient lacks capacity, authorization for the treatment decision must be sought by an appropriate substitute decision-maker. The law of consent is complex. Although there are small differences in specifics in the law across the country, the fundamental requirements are essentially the same. In this section we will illustrate the fundamentals with reference to the law in Ontario. This law is expressed in several different statutes, but most comprehensively is covered in a dedicated statute called the Health Care Consent Act ([HCCA], 1996). Similar statutes exist in all other Canadian provinces/territories (see, for example, Part 3 of the Health Information Act of the Government of the Northwest Territories [2016]).

2.1.1. The Elements of Consent In Section 11.1, the Ontario HCCA lays out the following elements of consent: 1. The consent must relate to the treatment. 2. The consent must be informed. 3. The consent must be given voluntarily 4. The consent must not be obtained through misrepresentation or fraud. These elements together articulate the concept of informed consent, and are consistent with elements for consent across all Canadian provinces/territories.

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The requirement of voluntariness pertains to the consent aspect of informed consent. What constitutes a truly voluntary decision? Voluntariness exists on a spectrum; cases at one end are more or less involuntary, and at the other more or less voluntary. For example, coercion or threats undermine voluntariness. Inducements to some lesser extent undermine voluntariness, as can persuasion to the extent it is manipulative. Other elements speak to the informed aspect of informed consent. The doctrine of consent evolved over time from simple consent—the bare indication of agreement or refusal—to informed consent (Menendez, 2013, p. 141). The knowledge requirement of informed consent pertains to the patient’s understanding and appreciation of information relevant to the decision at hand. What constitutes an adequately informed consent? Clearly, if the patient is provided with false information, whatever decision he or she might make based on that information is not adequately informed. Fraud and misrepresentation aside, how much information, and of what sort, does the provider need to disclose? This question is answered in law by what is called “the standard of disclosure.” The standard of disclosure outlines the type and scope of information that should be provided to the patient in the context of the consent process. This standard has evolved over time through landmark legal cases. Today, the standard is articulated in what is called the “reasonable person test”: What information would be relevant or material to the decision of a reasonable person in the particular circumstances of the patient? This test superseded the prior “reasonable physician test,” which asked what the reasonable physician in the same circumstances would disclose. This change marked a shift in the balance of power away from the medical community in the direction of greater patient control. The Ontario legislation codifies the reasonable person standard by stating that a consent is properly informed only if, prior to giving it, “the person received the information ... that a reasonable person in the same circumstances would require in order to make a decision about the treatment” (11.2). The general information contents that, presumably, would be relevant or material to the decision of a reasonable person in the circumstances of a patient, and that should be disclosed to the patient, is listed at section 11.3: 1. The nature of the treatment. 2. The expected benefits of the treatment. 3. The material risks of the treatment.

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4. The material side effects of the treatment. 5. Alternative courses of action. 6. The likely consequences of not having the treatment. As articulated, this standard gives providers important guidance for deciding just what information to disclose in the context of consent. Even so, the test is open to interpretation, since individual patients differ in their values and preferences related to the receipt of information. Getting to know the patient in the context of a developing relationship and two-way discussion enables providers to tailor their disclosure to the subjective preferences of the individual patient. Importantly, the legislation adds to the conditions for informed consent that the person must have “received responses to his or her request for additional information” (11.2). The information necessary for an informed decision—the amount of detail about proposed treatments and alternatives, for example—varies not just according to the subjective preferences of the individual patient but also depending on the nature of the treatment decision and its gravity. A major surgery is obviously more complicated and consequential than treatment for a mild skin irritation. Information needs are obviously different. Moreover, the Ontario legislation also differentiates consent according to the nature of the intervention, distinguishing consent to treatment, consent to admission to a care facility, and consent to personal assistance. The information needs will be different for each. Consent to research has its own particular nuances and is not specifically addressed in the HCCA but is addressed in other regulatory documents. There are some subtle differences between provinces and territories in their approaches to consent. For example, it is noteworthy that in British Columbia the Health Care (Consent) and Care Facility (Admission) Act (1996) imposes on the provider a “duty to communicate in an appropriate manner”: not simply to provide appropriate information and respond to questions but also to “communicate with the adult in a manner appropriate to the adult’s skills and abilities” (8). The Ontario legislation and other jurisdictions also distinguish express and implied consent (11.4). Consent is explicit when the patient explicitly and directly indicates agreement orally or in writing. Consent can be implied indirectly by the patient through words or behaviour that indicate to the provider the patient’s voluntary agreement to treatment, even if the patient does not explicitly state agreement. For example, a patient who rolls up his or her

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sleeve when a nurse reaches for a blood pressure cuff can thereby be taken to indicate agreement to the procedure (British Columbia College of Nursing Professionals [BCCNP], 2019, Principle 7). However, relying on implied consent can be problematic. In one of the cases considered in the chapter on endof-life, a patient opening her mouth upon a spoon being placed before her was taken as evidence of consent. Since implied consent involves the provider making an inference about the patient’s agreement, it can be more ambiguous and open to interpretation than explicit consent. Generally, the more serious the nature of the intervention, the more explicit the consent should be to reduce the possibility of misunderstanding or disagreement about whether in fact a consent was valid. To further reduce this possibility, and to protect providers and institutions from legal liability, explicit consent is often recorded in a document signed by the patient.

2.1.2. Capacity to Consent Capacity is a fundamental requirement for valid consent. If a patient lacks capacity, the requirement to obtain his or her consent does not apply and other rules come into play. In some instances, it is obvious and indisputable that the patient lacks capacity, for example, someone who is unconscious, or an infant. However, in other instances it may be less clear and disputable whether a patient has this capacity. Given the significance of a finding of incapacity, the standards and tests used to assess whether a patient has capacity are crucially important. In the Ontario HCCA, for example, a “person is capable with respect to a treatment, admission to a care facility or a personal assistance service if the person is able to understand the information that is relevant to making a decision about the treatment, admission or personal assistance service, as the case may be, and able to appreciate the reasonably foreseeable consequences of a decision or lack of decision” (1996, c. 2, Sched. A, s. 4 [1]). The type and scope of information is that which would ordinarily be disclosed in the consent process, as described in the previous section. Importantly, the legislation specifies that capacity should be presumed unless the provider has reason to believe otherwise (4.2 & 3). This presumption puts the onus on providers to assess capacity in the particular circumstances of the patient and decision to be made and checks the tendency providers may have to assume lack of capacity based on dubious inferences and unreliable indicators. For example, the presumption of capacity rules out a status approach

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to capacity. On the status approach, lack of capacity is assumed based solely on membership in a group statistically associated with lack of capacity, such as early teen adolescents, persons with certain health conditions such as mental illness and Alzheimer’s disease, and residents of psychiatric and long-term care facilities. Even if many persons in these groups typically do lack capacity, not all do. Capacity must be individually assessed if autonomy is to be upheld. Moreover, one should not assume that, because someone lacks capacity to make one kind of decision, they lack capacity to make any decisions. In the past capacity was thought to be an all or nothing affair: Either patients could make decisions about all aspects of their lives, or no parts of their lives. This contrasts with the functional approach used today, which takes into account the particular nature of the decision in the circumstances of the individual patient. The functional approach recognizes that our lives involve many different types of decisions, with different levels of complexity. A person with the diagnosis of clinical depression could have the capacity to decide what medications to take, but when faced with decisions about entering a research study the same person might lack the capacity to assess the risks and benefits of participation. A doubt about capacity represents a doubt about specific tasks or decisions, and not necessarily about all decisions. The Ontario HCCA specifically indicates that “capacity depends on treatment,” noting that “a person may be incapable with respect to some treatments and capable with respect to others” (15.1). Capacity for treatment is not the same as capacity for other decisions, such as pertain to management of finances (15.1). This approach is echoed in other provinces/territories. In British Columbia’s Health Care (Consent) and Care Facility (Admission) Act (1996), for example, capacity for decision-making is supported through the statement that “an adult’s way of communicating with others is not, by itself, grounds for deciding that he or she is incapable of understanding” (Part 1). Capacity can also fluctuate over time. For example, a person taking pain medications may develop a delirium, become acutely confused, and within a matter of hours lose the capacity to make decisions. The Ontario HCCA notes that a person may be “incapable with respect to treatment at one time and capable at another” (15.2). A person with Alzheimer’s disease may exhibit the “sundowning effect”—that is, the ability to reason and deliberate is relatively intact in the morning but diminishes considerably toward the end of the day. Evidence of confused or delusional thinking, severe pain or anxiety, severe depression, and impairment by prescribed medications, alcohol, or other

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substances does not in itself indicate a lack of capacity, although any of these may be reason enough to question whether the patient has capacity for a given decision and to initiate a capacity assessment using the legislated criteria. The presumption of capacity also rules out assumptions about capacity based solely on the health care provider’s assessment of the patient’s choice. Regrettably, providers sometimes form opinions about capacity based not on a proper assessment but, rather, on whether the patient’s views about treatment converge with their own. They deem the patient who elects for an option contrary to what is recommended to be incapable. In such instances, the patient’s apparently “irrational” or “unreasonable” decision is taken as evidence of incapacity, based on the doubtful assumption that no one in his or her “right mind” would make such a decision. Likewise, the fact that someone has made a choice that is out of character for them is sometimes taken as evidence of lack of capacity. To assume lack of capacity for such reasons misconstrues the concept of capacity, which pertains to the quality of the process of decision-making and not to its outcome. It also fails to acknowledge that treatment decisions involve value judgments. To infer incapacity based solely on one’s negative assessment of the decision the patient has made may mean little more than that the provider does not agree with the patient’s value judgment and would decide differently. However, the patient’s right to make his or her own treatment decision allows for the patient to decide in accordance with his or her own values and preferences. For example, a patient may decide that the chances of the chemotherapy succeeding are not great enough given the likely adverse effects, or that quality of life will not be endurable even if the treatment is as successful as it can be. The provider, and perhaps most other patients, might decide differently based on their values. However, that value judgment does not belong to the provider. A Jehovah’s Witness believer may refuse a life-sustaining transfusion that is a safe and frequently used intervention. If the person is capable, the decision is respected even if nurses and colleagues prefer that they accept life-sustaining care. Consistent with the right of autonomy, the decision belongs to the patient, and respect for patient autonomy means respecting the patient’s decision even if one disagrees with it. Although the bare fact that a patient’s decision is contrary to what a provider thinks the patient should choose, or appears to be out of character for the patient, is an unacceptable test for assessing capacity, it may be reason enough to suspect that there is a capacity issue, or to trigger a formal capacity

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assessment. The key point is that indications that signal the need for a capacity assessment ought not to be confused with legitimate tests of capacity to be used in such assessments. In cases where it seems that the patient may lack capacity it is important to probe the patient’s reasons and reasoning. The patient may be perfectly capable of reasoning or deliberating about the decision, but be basing the decision on a false belief or making a mistake in reasoning, or be unclear about his or her own values relevant to the decision. Even when a person has been found to lack capacity through a proper capacity assessment in accordance with the legislated criteria, the finding is open to challenge. In Ontario, for instance, anyone who has been found to be incapable with respect to a treatment has the right to appeal the finding to a review board.

2.1.3. Substitute Decision-Making Except under specific circumstances, such as in an emergency where the patient is not in a position to consent and significant harm could occur if intervention were delayed in order to seek consent from a substitute decision-maker, care provided must be authorized by consent. When a patient clearly lacks the capacity to make specific treatment decisions, the responsibility falls to others to decide on the patient’s behalf. The Ontario legislation is typical of other Canadian jurisdictions in ranking possible substitute decision-makers in order of priority, with those ranked lower assuming the role only if there is no one appropriate or available who is ranked higher. For example, if someone has named a power of attorney for personal care or treatment, that person has higher priority than a spouse or a partner, who likewise has higher priority than a parent, who likewise has higher priority than a sibling. A health care professional providing care to a patient cannot assume this responsibility. The Ontario legislation also identifies two main principles to guide the substitute decision-maker in giving or refusing consent on behalf of an incapable person: Consider any wishes the person may have expressed while capable that are applicable to the circumstances, and if such wishes are not known, act in the best interests of the person (21.1). In deciding what is in the incapable person’s best interests, the substitute decision-maker takes into consideration several factors, including whether the treatment is likely to improve the patient’s condition or well-being, whether the expected benefit outweighs the risk of harm to the patient, and whether any alternative that is less restrictive or intrusive would be as beneficial (21.2). Importantly, and consistent with

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respect to autonomy, the legislation specifies that taking into account the patient’s best interests includes consideration of “the values and beliefs that the person knows the incapable person held when capable and believes he or she would act on if capable” (21.2). This focus on the significance of the values and beliefs of the incapable person is consistent across Canadian provinces and territories. For example, in Saskatchewan, The Health Care Directives and Substitute Health Care Decision Makers Act (2017) notes that the substitute (or proxy) decision-maker must act “according to the wishes expressed by the person making the directive prior to that person’s incapacity to make a health care decision, if the proxy has knowledge of the person’s wishes, or (b) according to what the proxy believes to be in the best interests of the person making the directive, if the proxy has no knowledge of the person’s wishes” (p. 6).

2.1.4. Living Wills and Advance Directives The requirement to take into account an incapable person’s prior express wishes and what is known about their values and beliefs underscores the enduring importance accorded to autonomy. Capable patients can take action to control the care they will receive in the event that they become incapable, such as by appointing a power of attorney or representative decision-maker, or creating a living will or advance directive. Legislation concerning such things varies from one jurisdiction to another. In some jurisdictions, such as British Columbia, advance directives have legal weight, and health care professionals are legally obliged to follow them. They may in a general way indicate the patient’s wishes or values regarding treatment decisions—such as how he or she feels about risk-taking or quality of life issues—or may be specific about particular conditions that could arise and preferences regarding treatment options for those conditions. However, dispute can arise concerning the interpretation of such documents, and even their legal validity. The case of Mrs. Bentley discussed in chapter 8 illustrates this and points to the potential for patients to misunderstand the legal significance of such documents.

2.1.5. Specific Consent and Capacity Issues for Different Populations The summary thus far has included a profile of the Ontario HCCA, which is typical of legislation in other jurisdictions. However additional consent and

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capacity legislation tailored to the special circumstances of some patient populations also exists. For example, the Ontario Mental Health Act has specific provisions concerning such matters as detention under the Criminal Code, community treatment orders, rights of appeal, and access to a Rights Advisor. Persons with mental health issues and certain other patient populations, such as residents in long-term care facilities, have the same rights as anyone else, including rights with respect to consent and capacity. However, they are often subject to autonomy-diminishing stereotypes and prejudices and are especially vulnerable. It can be more difficult for them to exercise their rights or to have them respected given such prejudices, their compromised health condition, the power imbalance that exists between them and their providers, and the complex and imposing nature of health care institutions. Care of adolescents can pose special challenges. It is generally agreed that adolescents should be included in the consent process (Schacter et al., 2005, p. 534). Typically, adolescents in their early teen years have acquired the cognitive ability to understand the information necessary to make significant treatment decisions. In Ontario, for example, there is no age requirement for giving consent. An adolescent who is identified as a “mature minor” can make treatment decisions. A mature minor is someone between the ages of twelve and eighteen who is considered to be capable of understanding the scope of his or her illness and the consequences of accepting or rejecting treatment for that illness. As with a person of any age, an adolescent’s capacity to consent needs to be individually determined based on their ability to understand and appreciate pertinent information. Challenges can arise, though, when adolescents thought to be capable of making treatment decisions by accepted legal standards are not seen as such by their parents or guardians.

3. NURSING ETHICS AND CONSENT Typically, the fundamentals of consent as expressed in law make reference to “providers” or “practitioners” generically, and in doing so of course apply to nurses. Nurses can play several roles in connection with consent, including: initiating a capacity assessment in situations where lack of capacity is suspected, conducting a capacity assessment as an evaluator (upon completing approved training), obtaining consent as appropriate, and witnessing a consent. However, there are several caveats. As previously noted, although consent

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laws agree in fundamentals, they vary from one jurisdiction to another. For example, British Columbia has specific provisions for advance directives but Ontario does not. Additionally, although the main elements of the law of consent may be expressed in a single piece of legislation, such as a health care consent act, the body of common law, regulations, and other acts of legislation, such as a mental health act or an act regulating health care facilities, also address aspects of consent. Moreover, in addition to generic rules that apply to all health care providers, there are some that apply, or apply differently, to different professions. In sum, the law of consent is quite complicated. Nurses should know the law as it applies in the jurisdiction in which they work. Fortunately, nursing associations and regulatory bodies have issued helpful guidelines and standards that distill complex consent legislation as it applies specifically to nurses. The College of Nurses of Ontario (CNO) has a practice guideline on consent (2017) that extracts the main elements of the HCCA and clarifies its significance for nurses. For example, the HCCA has specific provisions that address consent in the context of team-based care plans. The CNO practice guideline on consent (2017) notes that “one health care practitioner can propose a plan of treatment and obtain consent to the plan on behalf of all the health care practitioners involved in the plan” (p. 3). The BCCNP (2019) also has a practice standard that discusses responsibilities in relation to consent law in that province, which is somewhat different from Ontario. Their standard notes that “nurses are responsible for obtaining consent for care or treatment they carry out (e.g., taking blood pressure, starting an intravenous)” but goes on to say that “it is not appropriate for nurses to take responsibility for obtaining consent for care or treatment provided by another health professional (e.g., surgery, anesthesia)” (Principle 4). Practices and policies with respect to consent and capacity may vary somewhat between provinces and territories and among institutions (even within the same jurisdiction) and nurses should be aware of those that apply where they work. 3.1. Ethics and Law It is noteworthy that although both of the guidance documents discussed in the previous section are primarily focused on clarifying the law, they distinguish ethical and legal obligations. For example, the CNO (2017) practice guideline on consent begins by saying that “nurses have ethical and legal

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obligations for obtaining consent.” The BCCNP (2019) consent document likewise begins: “Nurses have both legal and ethical obligations regarding consent for proposed care, treatment and research.” The prominence given to the distinction between ethics and law is important. There are several ways of distinguishing legal and ethical obligations. Firstly, whereas laws or legal norms tend to be enforceable upon threat of sanction or punishment, typically ethical norms in themselves are not. Often, ethical norms express aspirations or ideals to strive for. Secondly, just because a norm is ethical does not mean that it is (or should be) codified in law, or conversely that because a norm is codified in law that therefore it is ethical. For example, there is widespread agreement about the ethical norm that as a rule one should not lie. However, no one would suggest that lying should be against the law, except in very specific instances involving such things as fraud. Additionally, there are laws that, from the standpoint of ethics, may be evaluated as being unethical. Prior to the introduction of medical assistance in dying (MAID), those who advocated for assisted death to be legal argued that the provisions in the criminal law prohibiting it were unethical. From the standpoint of opponents of assisted death, the law that was passed permitting MAID is unethical. This relates to a third point, which is that disagreement about what the law is, or about what our legal obligations are, can be resolved with reference to an authoritative body of law as interpreted by the courts. Disagreement about what the law should be, or about what our legal obligations should be, is an ethical disagreement and cannot be resolved in this way. Even when ethical obligations are codified in a code of ethics, they are often expressed as principles that are too vague or general to resolve disagreement about them in a given instance, or as unenforceable guidelines that are not binding. Moreover, as there can be ethical disagreement about what the law should be or prescribe, so too there can be ethical disagreement about what a code of ethics should prescribe. To be sure, ethics and law overlap, and ethical rights and obligations overlap with rights and obligations codified in law. This is not surprising because changes to law are often prompted by ethical arguments about what the law should be, as certainly happened with the law of consent. However, although the law of consent overlaps with ethics, and mirrors ethical principles, the standards it sets for behaviour are minimum standards. Ethical principles set a higher and more comprehensive standard than mere compliance with the law.

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3.2. Nursing Roles and Ethical Responsibilities Regarding Consent Ethical responsibilities with respect to consent and capacity exceed strictly legal responsibilities and go beyond mere compliance with the law. They are grounded in the principle of respect for autonomy. This is evident in the guidance documents we have mentioned. The CNO (2017) practice guideline on consent, in addition to referring its reader to specifically ethical obligations concerning consent laid out in the college’s ethics practice standard, includes an appendix titled “Advocating for Clients,” which says that nurses use “professional judgment to determine the scope of advocacy services to assist the client in exercising his/her options” (p. 9). The BCCNP (2019) consent document, in addition to covering the legal obligations of nurses, also discusses the “ethical obligations of nurses ... to recognize, respect and promote the client’s right to be informed and make informed choices” (Preamble). It is framed in terms of a number of “principles” that straddle law and ethics, or that go beyond what the law strictly requires. It too references the nurse’s role as an advocate. This role encompasses more than the legal obligation to ensure consent or refusal as appropriate for the care they provide, and additionally obliges nurses involved in care that is being provided by another professional to make sure consent has been given. This includes helping the client to “understand information that has been provided by others,” and if necessary, advocating “for clients to acquire” additional information from other health professionals if necessary (BCCNP, 2019, Principle 12). Nurses are “obligated to take action” if they have concerns about the quality of a consent. Along similar lines, the CNO (2017) practice guideline on consent notes that nurses “need to advocate for clients’ access to information about care and treatment if it is not forthcoming from other care providers” (p. 8). Moreover, nurses “should not provide a treatment if there is any doubt about whether the client understands and is capable of consenting ... whether or not there is an order, or even if the client has already consented” (p. 8). Such guidance is furnished in diverse provincial/territorial documents across Canada. The Nova Scotia College of Nursing (2019), for instance, points to the importance of being “truthful, honest and engaging in respectful dialogue” as well as “performing all activities in a fair and consistent way, precluding bias against anyone.” Nurses are well situated to play an important role in the consent process by virtue of the frequency and intimacy of their contact with patients and the relationships that they are able to foster over time. Patients may feel more

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comfortable raising questions about information they have been provided by others with a nurse with whom they have developed a relationship and who may be more accessible to them. In some cases, patients will have been provided written material, a video, or an on-line tutorial that provides information about procedures, medications, and surgeries, or through their own initiative may themselves have consulted such sources on the Internet. Nurses are therefore positioned well to respond to questions about the information. Because of their frequent and intimate contact with patients, nurses are often able to observe the dynamics of a consent process over time and may witness coercive pressure being brought to bear on the patient by family members or others. In addition to being there to respond to patient questions and concerns, nurses can help patients manage coercive pressures, taking appropriate action to advocate for the patient if necessary. In this regard, nurses of course need to be alert to their own biases and the potential that they can undermine the voluntariness of a patient’s decision in how they communicate and discuss information with a patient about a decision to be made. Non-verbal communication can be powerful, and biases can be expressed in a nurse’s communication style, even without the nurse being aware of this. Having a bias is not by itself a problem, but acting on it can be. The line between communication and persuasion can be blurry, as can be the line between persuasion and manipulation. As is indicated in the quotation above from the Nova Scotia College of Nursing, nurses need to be aware of this, and also to be aware of the influence they have in virtue of their role and status, the trust patients vest in them, and the power imbalance in the relationship. As the CNA Code of Ethics (2017) also notes, “Nurses are sensitive to the inherent power differentials between care providers and persons receiving care” and “do not misuse that power to influence decision-making” (p. 11). The dynamics of a consent process can be additionally complicated in view of cultural factors. Patients from diverse traditions can have unique perspectives on health and illness. Cultural values may influence “how patients interpret their illnesses and comprehend the diagnostic, prognostic and treatment-related information provided by members of the health care team” (Hunter, 2005, p. 308). Some people’s familial and/or cultural backgrounds may mean that there is an expectation that spouses, family members, or other members of the community will play a significant role in the decision-making process. Being sensitive to such cultural dynamics can pose challenges to operationalizing respect for patient autonomy.

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3.2.1. Consent, Choice, and Respect for Autonomy Interpreted from a nursing ethics perspective, consent is grounded in respect for autonomy. As Menendez (2013) notes, the “ethical significance of informed consent is based on the opportunity that the process presents for the patient to exert autonomy” (p. 141). Indeed, from the standpoint of respect for autonomy, the term “consent,” and even “informed consent,” is itself somewhat problematic, for several reasons. In the first place, the term “consent” suggests that the point of the consent process is to “obtain consent” from the patient. This is understandable, insofar as consent is necessary for treatment and in a majority of instances it is likely that the patient will consent to what is offered. However, this way of thinking skews the process toward consent as its conclusion, whereas the process can very well lead not to consent but to refusal. It would be more faithful to the principle of respect for autonomy to think of the process as aimed not at obtaining consent, but rather at ascertaining the patient’s choice or decision, whether that be a yes or a no, and assisting the patient in this as appropriate. Secondly, consent suggests passivity on the part of patients: Patients react to options that are presented to them. In nursing, and consistent with respect for autonomy, the patient’s involvement in his or her care is represented in more active terms. For example, the patient tends to be represented as someone who “manages” his or her care, as the first principle stated in the BCCNP document on consent puts it. This suggests and includes more than responding to options presented. Many in the nursing profession have moved away from the term “patient” in favour of the term “client” for similar reasons, because the term “client” suggests a more active involvement, and better represents the patient in terms of autonomy. Thirdly, the range of choices a patient may make is broader than those concerning acts or interventions subject to the law of consent. Seemingly mundane choices—from whether to see visitors or which clothes to put on in the morning—can be very important expressions of autonomy and can enable patients to maintain or regain control. This is particularly true for institutionalized patients. For these and other reasons, the term “choice” or “decision” would be more apt and expressive of respect for autonomy than “consent,” even for those choices or decisions to which the law of consent applies. In this regard, it is noteworthy that the CNO (2017) practice guideline on consent refers to

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the ethical obligations of nurses in terms of “client choice” (3). The BCCNP (2019) standards document speaks of the “client’s right to be informed and make choices” (Preamble). The CNA Code of Ethics (2017) discusses consent under the heading “Promoting and Respecting Informed Decision-Making,” and clarifies this value in saying that “nurses recognize, respect and promote a person’s right to be informed and make decisions” (p. 17).

4. LIMITING AUTONOMY: PATERNALISM, PROTECTION OF OTHERS, AND JUSTICE Autonomy—in the sense of liberty or freedom of action—is limited as a matter of circumstance in a variety of ways. Sickness and health problems can be impediments to the exercise of freedom insofar as they reduce or compromise our abilities or powers. If I have a broken leg, I lack the freedom to walk to the store or to the park. Someone who has had a stroke may no longer have the freedom to perform mental or physical activities that were once taken for granted. An elderly person living with chronic arthritis of the hip may become considerably less independent despite working with health professionals to maintain, or regain, diminished abilities in the activities of daily living. The limitation of freedom in such instances is circumstantial in that it comes about in consequence of accidents or happenstance. No one deliberately impedes us from choosing or doing what we want. The situation is markedly different when our freedom is limited or restricted by someone in a position of authority or who has power over us. For example, a political state exercises its authority and power to limit or even constrain the freedom of its citizens in many ways, most notably through laws that are enforced by police and through the courts. Freedom can also be constrained by non-governmental authorities and powers. A young child who wants to go outside for a walk has to ask for permission from a parent or guardian, who, for one reason or other, may say no or otherwise curtail the child’s freedom. Healthy elderly persons who want to go for a walk can put on their coat and walk outside. However, an elderly person with Alzheimer’s disease may find that locked doors or other obstacles have deliberately been placed in their way to impede them from doing this. Our focus in this section will be on the deliberate limitation of individual freedom by others who are in a position of authority or power to do so. Such deliberate limitation can be more or less coercive, ranging from refusing

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to assist someone to interfering with someone’s freedom by restricting, constraining, or confining them so that they are prevented from doing what they wish. In these instances, individual freedom is limited not just by circumstance but by other people, who bear responsibility for their lack or loss of freedom. Given the value that attaches to freedom, such deliberate limitation requires justification. The more serious the limitation of freedom, the more weighty the justification must be. In health care settings, freedom as a fundamental value is recognized in the principle of respect for autonomy. Health professionals have knowledge and skills that patients ordinarily lack and have authorities and powers by virtue of their professional or employment role. Given this imbalance in knowledge and power, and the situation of being in need or weakened by illness or disability, patients are in a vulnerable position, particularly in health care institutions. Respect for autonomy is an especially important value in health care given the vulnerability of patients and the power imbalance in the health care relationship. The most important way health professionals express respect for patient autonomy is by assisting the patient to make informed and effective choices to the extent they are capable and to manage their lives to the extent they can. However, in the context of health care—as in society more generally—there are circumstances in which it is justifiable not to comply with the wishes even of a patient who is autonomous and has the capacity to decide, or even to constrain or limit their freedom to decide or act. As important as it is, autonomy is not the only value that matters in health care. It can be in tension with other values. In this section, we will discuss three main justifications for limiting freedom or autonomy: for the good of the patient, for the good of others besides the patient, and justice. 4.1. Paternalism and the Limitation of Autonomy In addition to valuing patient autonomy and respecting their wishes, health care professionals are oriented toward doing good for the patient, using their knowledge and skills to restore or improve the patient’s health. These two values, respect for autonomy and beneficence, are in tension or conflict when what the patient wishes or would choose is contrary to what the health professional believes is good for the patient, or even positively harmful. Respect for autonomy is premised on the idea that it is the right of the patient to determine his or her own good, even if the health care provider

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disagrees. However, respect for autonomy is a relatively recent value in the history of the helping professions that came to prominence around the middle of the twentieth century. For the longest time, beneficence was the dominant value in health care and patients were treated more as passive recipients of treatments and care plans decided by their physicians and other providers. Such treatment was ostensibly for the good of the patient, rather than supporting them as autonomous persons entitled to make decisions concerning their own good. Patient input into this decision-making was minimal. For example, patients were not asked whether they wanted life-saving treatment: It would be provided to them for their own good, even if they explicitly said they did not want to receive it. This beneficent orientation to the good of the patient, without regard to, or even irrespective of, the patient’s wishes, is called paternalism. In the case of patients who lack the capacity to make their own decisions—for example, children, or adults with very serious cognitive impairment—paternalism is not in tension with autonomy. Paternalism in such instances could be called “weak paternalism.” Weak paternalism justifies limiting autonomy in the sense of free choice “to prevent self-regarding harmful conduct only when it is substantially non-voluntary, or when intervention is necessary to establish whether it is voluntary or not” (Feinberg, 1971, p. 113). Think of stopping a child running across the street and into danger. If a patient lacks capacity, or if there is good reason to believe this is the case, it can be justifiable to limit freedom for his or her own good, at least until such time as an assessment can be done. Patients having auditory hallucinations instructing them to harm themselves are rightly prevented from doing so. The ethics of paternalism is different in the case of patients who do have the capacity to decide. This “strong paternalism” is typically what is meant when paternalism is spoken of today. In what follows we will use the term in this sense. The classic critique of paternalism dates back to the nineteenth-century philosopher John Stuart Mill. In On Liberty, Mill (1859/1975) asserted a simple principle as a means of determining whether the restriction of the freedom or liberty of someone who has the mental capacity and maturity to decide is justifiable: That principle is that the sole end for which mankind are warranted, individually or collectively, in interfering with the liberty of action of any of their number, is self-protection. That the only purpose for which

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power can be rightfully exercised over any member of a civilized community, against his will, is to prevent harm to others. His own good, either physical or moral, is not a sufficient warrant. He cannot rightfully be compelled to do or forbear because it will be better for him to do so, because it will make him happier, because in the opinions of others, to do so would be wise, or even right. (pp. 10–11)

According to Mill’s argument here—his famous “harm principle”—the reason for limiting a capable person’s freedom is critically important. Limiting a capable person’s freedom in order to prevent them from harming others is justifiable. This much is necessary for collective life together. However, doing so for the person’s own good—which is essentially what paternalism means— is not. In matters that concern their own good, people should be allowed freedom to make choices, even if one thinks the person’s choices are not in their interest or are bad for them. As concerns their own good, choice belongs to the person as a matter of right. Capable persons have a right to choose what they consider good for them, and even to make “bad choices,” provided that those choices do not harm other people. Mill’s harm principle has significantly shaped modern society and is evident in landmark declarations that articulate freedom as a right, such as the Canadian Charter of Rights and Freedoms. Although Mill was not specifically referring to the health care context, his criticism of paternalism is especially apt given that beneficence—beneficent paternalism in the name of the patient’s good—has until relatively recently been the primary value and norm for health professionals and autonomy has had a much lesser importance than it does today. In consequence of changing social values and landmark laws and legal cases in which the present doctrine of informed consent evolved, the value of beneficence was diminished relative to the rising value of autonomy. To be sure, beneficence remains a fundamental value in the health professions, but it is weighed in the balance and held in check by autonomy. Paternalism has been supplanted by respect for autonomy in health care ethics. However, the rising importance of autonomy in health care, and the subordination of beneficence to autonomy, has not been without challenge and controversy. There has been, and still is in some lesser measure, considerable resistance to these changes in the health care context. Moreover, as these changes were occurring several prominent ethicists (for example, Pellegrino & Thomasma, 1988) expressed concern that change in the direction of respect

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for autonomy had gone too far, and argued in defence of traditional medical ethics to restore beneficence to a higher value. Along these lines, one could argue that, even if autonomy rights as they have evolved in modern society are generally a good development, the application of these rights in health care is problematic because of unique features of the relationship between health professionals and patients. For example, patients in health care contexts—even if legally assessed to have capacity to make their own decisions—can be especially vulnerable in virtue of being sick and in need. Some health professionals and ethicists believe that the pendulum has swung too far. As will later be discussed, proponents of what has been called “relational autonomy” argue that the concept of autonomy as currently interpreted misrepresents what it is to be a person by over-emphasizing separateness and independence from others. This emphasis, it is argued, obscures our nature as inter-related and interdependent social beings, defined and self-defining in networks of relationships with others, in power-laden socio-political contexts. 4.2. Limiting Autonomy to Prevent Serious and Imminent Harm Although Mill’s principle ranks respect for autonomy as a higher value than beneficence, it also recognizes a justification for limiting or interfering with a capable person’s freedom. According to Mill, it is not justifiable to limit someone’s freedom for their own good. However, it is justifiable to do so to prevent him or her from harming someone else. In this regard, Mill distinguishes “self-regarding” actions, actions that concern only ourselves and that therefore belong by right to us, from “other-regarding” actions, which adversely impinge on other people and for which the rights of other people come into play. In common parlance, “your right to swing your fists ends at the point you touch my nose.” It is widely agreed in general terms that this distinction is useful and important for determining when it is justifiable to limit or restrict someone’s freedom, but it has generated much debate in particulars. The line between self-regarding and other-regarding actions is blurry. For example, a patient’s decision to refuse a life-saving treatment can also impact family members and others. There are several ways of addressing this point, such as by distinguishing whether the decision is primarily self-regarding, or whether its impact on others is indirect, or according to likelihood and extent of any consequential harms to others. To be sure, there are grey areas but there are many cases when

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the line can be clearly drawn. Treatment decisions are primarily self-regarding, even if they can have indirect adverse effects upon others. However, when our decisions or actions cause direct harm to others that is substantial, as when a patient—capable or not capable—is violent, a clear case for restricting their freedom can be made. 4.3. Justice and the Limitation of Autonomy Paternalism in the case of capable patients is generally not a good enough reason to limit or restrict autonomy, at least not in ways that are severe, such as restraining them or imposing or forcing treatment upon them. However, concern to protect others from serious and imminent harm is, even in the case of capable patients, and even in ways that are severe. A quite different reason for limiting autonomy is justice. Justice will be discussed at length in a later chapter (see chapter 6), but here we will briefly discuss the relationship between justice and autonomy. Considerations of justice can justify limiting patient choice insofar as costs may be attached to those choices, and others beside the patient bear those costs in one way or another. In a publicly funded system, such as Canada’s, this occurs through taxation. Governments are accountable to citizens for how tax dollars are expended and are expected to allocate resources as efficiently as possible to minimize costs. Moreover, the primary consideration in allocating money to the system is meeting our needs, which are not the same as our wishes or desires. Choice is limited by the health care system, and within health care institutions, as concerns the options made available from among which patients may choose. In theory at least, although not always in fact, the available resources will be sufficient to meet patient needs but may not be sufficient to meet their wishes. Autonomy is limited, to the extent that options a patient would prefer may not be available. To be sure, this limitation is different in kind and less severe than limiting someone’s autonomy by restricting their movement or imposing a treatment. Forcing someone to do something against their will, or even preventing someone from doing something they choose to do, is more problematic than failing to provide them with their preferred options, particularly if options that are provided are sufficient to meet their needs. However, the concept of need is somewhat elastic, and there can be debate about whether needs are indeed being met and the extent to which available options do meet needs.

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When, or to the extent, resources are rationed with a view to fairness and maximizing efficiency and effectiveness for the general good, patients may not be able to gain access to what they want, or perhaps even what they need— for example, access to expensive treatments and drugs. Similar principles also apply to low-tech and high-touch care, such as home care. The fact that available resources are lacking or scarce, and that patient choice is limited accordingly, may itself pose issues of justice. For example, fractured hips are a common health problem for elderly women. Community-based geriatric rehabilitation programs cannot meet the demand. Therefore, some patients will be transferred from surgical units to long-term care facilities (or sent home, with no professional support) for convalescence, even though they would prefer to go to a rehabilitation centre. Such constraints on choice, whether in accordance with justice or not, are different in kind from those sanctioned by paternalism or based on a concern to protect people from harming themselves or others. Additionally, when resources are provided to one patient, the pool of resources available to others is diminished. To meet the wishes of one patient may mean not being able to meet the needs of another. Meeting needs comes before fulfilling wishes. Moreover, in emergency triage situations, it is necessary to prioritize access even to needed resources. 4.4. Limiting Choice in Health Care Contexts In health care contexts, the freedom of patients can be limited, sometimes unjustifiably so, in different ways and circumstances and for different reasons. Examples include by information control, particularly if it involves withholding information or deception, by limiting options (not offering or providing certain options), by refusing to assist, by constraining, or by giving treatment without consent. The means of limiting can be more or less intrusive or severe, and the reasons for doing so more or less compelling. In deciding whether a given limitation is justifiable, three main considerations apply: the capability of the person; the means by which freedom is impeded, which can be more or less limiting or restrictive; and the weightiness of the reason for the limitation. The CNO practice standard on ethics (2019) offers several examples of what it considers to be justifiable “limits to client choice,” including “policies that promote health,” such as restrictions on smoking; lack of “resources available in a particular situation”; and refusal to meet a client’s request “to perform an act that is illegal or may cause serious harm” (p. 6).

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Some means used in health care limit choice or autonomy much more invasively or restrictively, and therefore require much weightier reasons for justification. In what follows, we will discuss two examples: the use of restraints, particularly in the case of elderly patients, and involuntary admission and treatment, particularly in the case of patients with mental health issues.

4.4.1. The Use of Restraints and the Principle of the Least Restrictive Alternative Restraints to prevent or restrict someone from doing what they choose to do are sometimes used in health care, most commonly in long-term care and mental health facilities. Restraints include “physical, chemical or environmental measures used to control the physical or behavioural activity of a person or a portion of his/her body” (Registered Nurses’ Association of Ontario [RNAO], 2012, p. 12). Physical restraints restrict movement, and include such things as restraints on a patient’s arms, legs, or around their waists, and devices such as side rails. An example of an environmental restraint is the use of a secure unit to prevent involuntarily detained patients or patients with dementia from leaving while allowing them to walk around the unit unfettered. Chemical restraints are medications “used not to treat illness, but to intentionally inhibit a particular behaviour or movement” (p. 12). The RNAO cites a 2009 study of physical and chemical restraint use in long-term care homes that found a wide variation in use among difference countries, with Canada having the highest prevalence of over 31 per cent (p. 19). The RNAO also cites a 2010 study of 2,721 psychiatric patients in Canadian mental health facilities that found that “23.2% had been placed in seclusion and that 17.5% of them had been secluded with (physical) restraint” (p. 19). The majority of health facilities today have policies or guidelines concerning the use of restraints. Consistent with the approach taken in the Ontario Patient Restraints Minimization Act (2001), such policies and guidelines seek to reduce or minimize the use of restraints, while at the same time recognizing that there are instances in which it may be justifiable to use restraints to prevent harm to patients or others, or when the use of restraining measures such as a locked door to a unit allows patients greater freedom than they could otherwise enjoy. In some jurisdictions, such as Ontario, health facilities are required by law to have such policies. Additionally, several professional organizations in Canada have legally based guidelines or standards for use of restraints. Further,

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The Patient Safety Education Program—Canada (PSEP—Canada) Curriculum (2013–2017) has produced related educational resources. The reasons for the use of restraints are varied. Typically, their use is justified along the lines of weak paternalism. For example, a common reason for the use of restraints is to prevent cognitively impaired patients from harming themselves by falling or wandering off. In some instances, restraints are used to prevent someone who is acting aggressively from harming others. Patients at risk to themselves or to others can present considerable challenges to nurses, particularly in contexts where staff resources are strained. There are two main arguments that count against the use of restraints. Firstly, autonomy is a cherished value in health care. Restraining people is a serious limitation of their freedom and an affront to their dignity. It requires a justificatory reason serious or weighty enough to trump autonomy. Secondly, as the RNAO (2012, p. 19) notes with supporting evidence, the use of restraints can itself produce harms. Considerations of autonomy aside, the harm that could be produced by the use of restraints may itself be greater than whatever harm the use of restraint is intended to avoid. Given arguments against the use of restraints, the policy trend in current regulations and guidelines is toward eliminating, or at least reducing, the use of restraints. The most fundamental principle that guides current thinking about restraints is the principle of last resort. For example, the RNAO (2012) situates restraint as the last resort in a comprehensive prevention strategy aimed toward the avoidance of restraints. This strategy begins with individualized assessment of risk factors (such as for falls) and consideration of alternative approaches to managing risks (such as through exercise or use of a walking aid). The logic of this strategy is that the need for restraint can be significantly reduced or eliminated by early care and planning directed toward prevention. Only after preventive measures and other alternatives have been considered and tried can the use of restraints be justified. The second most fundamental principle concerning restraint use is the principle of the least restrictive alternative. The idea is that, when all other alternatives have been exhaustively considered or tried and the use of restraints is justified, the means of restraint should be no more restrictive than it needs to be to achieve the purpose for which it is intended. When restraints are used, they should only be used for as long as needed, and there should be frequent review of the situation with the aim of discontinuing their use as soon as possible. Physical or chemical restraints to manage at-risk patient behaviour should never be used without first exploring the reasons for being at risk. Otherwise,

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one could miss an opportunity for resolving the issue with a less restrictive alternative, even without restraints, by addressing the underlying reasons for the behaviour. If restlessness contributes to the patient wandering off, perhaps there are less restrictive ways of addressing the root problem, such as exercise. If the person’s risk of falling is exacerbated by poor vision, perhaps the impairment can be addressed by surgery. If mobility is impaired, perhaps a mobility aid would significantly reduce the risk. Unfortunately, sometimes the means to address underlying causes of risk is not available in the circumstances of the patient. For example, the patient may not be able to afford the cost of a mobility aid. Beneficent use of restraints to protect the well-being of at-risk patients should be tempered by respect for autonomy, with a view to enabling the patient to exercise their autonomy to the fullest extent possible given their circumstances. The RNAO (2012) stresses the importance of individualized care plans tailored to the needs of the individual patient in their particular circumstances. Consideration should be given to individual preferences, even, and perhaps especially, in the case of patients whose autonomy has been diminished or significantly impaired. This is consistent with the CNA Code of Ethics directive to nurses to “support persons receiving care in maintaining their dignity and integrity” (2017, p. 12).

4.4.2. Limitation of Autonomy in Mental Health Health care involving people with mental illness poses special challenges as concerns consent and capacity. The means by which autonomy is limited or restricted, such as detainment and restraint, can be very invasive and engage fundamental human rights. Moreover, mental health patients are especially vulnerable and are often viewed through the lens of negative stereotypes. Paternalism is more prevalent in the field of mental health than in other fields of health. To be sure, given their diminished autonomy and capacity for decision-making, non-consensual interventions are often justified for these patients along the lines of “weak paternalism.” However, the history of mental health is one in which patients were subject to paternalist interventions as a matter of course, beyond what is today considered justifiable. The stigma of mental health and excessively paternalistic attitudes still persist. Mental health law “balances the liberty and autonomy interests of persons suffering from mental disorder,” on the one hand, “with society’s

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interest in protecting persons who, due to mental disorder, are at risk of harm to themselves or others or, who are at risk of substantial physical and mental deterioration,” on the other (Byrick & Walker-Renshaw, 2016, p. 3.1). The law has evolved significantly, in line with changing societal attitudes, and in some measure prodded by the patient’s rights movement. Procedural safeguards, such as the involvement of rights advisers in admissions and various processes for review, have been developed that afford greater protection to liberty and autonomy interests and that constrain, temper, and abate excessively paternalistic attitudes and tendencies. The law varies from one jurisdiction to another in how it strikes the balance between autonomy and the societal interest in protecting mental health patients from themselves and from others. Moreover, exactly how this balance should be struck remains subject to controversy, as evident by recent edited volumes that deal broadly with coercive interventions, autonomy, and human rights (e.g., Kallert & Monahan, 2011; Spivakovsky et al., 2018). We will focus on two especially controversial issues in what follows: involuntary detention and involuntary treatment.

4.4.2.1. Involuntary Detention One of the most controversial areas in mental health law and care concerns involuntary detention and admission. As Byrick and Walker-Renshaw (2016) emphasize, “the authority to detain persons who are suffering from a mental disorder against their will, for the purpose of care and treatment in a psychiatric facility, is an extraordinary power” (p. 3.1). In Ontario, for example, patients can be involuntarily detained and admitted to a psychiatric facility for treatment of a mental disorder according to several protocols. Patients found to be incapable may be admitted upon the authorization of a substitute decision-maker. Such patients are termed “informal patients.” However, patients who are older than 16 cannot be admitted as informal patients if they object. To this extent, adult admission as an informal patient is not clearly voluntary, since they do not consent, but is not clearly involuntary either, since they can object. However, when adult patients do object, this often results in steps being taken to admit them as involuntary patients. Involuntary assessment and admission pose more serious issues. Provision exists in Ontario law, for instance, for persons to be taken to a facility for psychiatric assessment and detained for up to 72 hours without their consent, or the consent of a substitute decision-maker, and even if they

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explicitly object. This can occur if a physician attests that they meet certain conditions: They have caused, or threatened to cause, bodily harm to self or to another or in consequence of a mental disorder are likely to do so, or if they lack competence to care for self and are likely to suffer serious impairment. Additionally, and more problematically, apprehension and detention for assessment may occur if a patient has previously been treated successfully for a disorder that, if not treated, will likely result in serious bodily harm to self or another or if the patient is substantially deteriorating. The application process can be initiated by a family member or anyone in the community who swears before a justice of the peace that the patient meets the relevant conditions. If convinced, the justice of the peace will issue an order allowing for the person to be taken into custody and brought to a physician for examination, subsequent to which the physician may file an application for psychiatric assessment if he or she determines that the patient meets the conditions. Police may also initiate the process leading to examination by a physician and subsequent application for assessment. The criteria used in the psychiatric assessment are similar to those used in the application for assessment. If upon psychiatric assessment the relevant conditions are met, the patient may be admitted as an “involuntary patient” for a limited period of time, after which application must be made for renewal of the admission certificate and the patient reassessed. Admission can also occur for up to two months upon a court order by a judge. The law is very complicated, with different criteria to be met for different assessment applications and admission certificates depending on circumstances, and various review and appeal processes. The admission status of a patient can change in the course of ongoing assessment and review. A voluntary patient can become an involuntary patient or vice versa as his or her mental health improves or declines. Assessment and review criteria, which contain somewhat subjective terms such as “serious bodily harm” and “serious impairment” and require judgments concerning the “likelihood” of harm, are open to interpretation. Families of people with mental health issues, whose lives can be filled with significant disruption and anguish in consequence of their behaviours, can find it difficult to navigate such a complex system. Some families complain that too much emphasis is given to autonomy rights and that it can be too difficult to get their loved ones into care; some rights advocates and people with mental health issues complain that autonomy rights are not given enough weight and that the system is too coercive.

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4.4.2.2. Involuntary and Coerced Treatment Processes for assessment and admission to a psychiatric facility are especially problematic insofar as they provide for involuntary detainment and confinement. Whether this occurs for the patient’s own good, the protection of others, or some combination of the two, it is important to note that it occurs for the purpose of treating the disorder that precipitated the assessment or admission. Treatment poses its own unique issues from an autonomy standpoint. In the past, involuntary treatment and involuntary admission tended to be joined. The fact of being an involuntary patient was taken as evidence of incapacity and psychiatric treatment could be administered as a matter of course without assessing capacity for specific treatment, without consent, or even against the objection of the patient. This remains the case in British Columbia. The British Columbia Mental Health Act does not require that involuntary patients be assessed for capacity to decide psychiatric treatment or allow the patient to appoint a substitute decision-maker. These provisions are controversial. In 2016 a court challenge was initiated by advocacy groups on the grounds that the British Columbia law violates the Charter rights of involuntary patients to equality and to life, liberty, and security of the person. However, some advocacy groups and families support the current provisions in the BC law because they are more concerned about ensuring that needed treatment is administered than about the protection of autonomy rights. In Ontario and most other jurisdictions, the law has been reformed in line with the individualized approach to capacity described earlier, which recognizes that capacity is not an all or nothing approach. Someone who has been assessed to lack capacity for one sort of decision may have capacity to make another sort of decision, or while admitted may regain capacity. Each patient must be assessed individually in relation to the nature of the decision to be made. The rationale behind these legal protections was succinctly articulated in a landmark case concerning involuntary treatment that came before the Ontario Court of Appeal in Fleming v. Reid (1991). The court acknowledged that “mentally ill persons are not to be stigmatized because of the nature of their illness or disability; nor should they be treated as persons of lesser status or dignity” (IV). Many patients who have met the assessment criteria for involuntary admission also lack capacity to make treatment decisions. However, this is not true of all involuntary patients, and applying this stereotype across the board denies involuntary patients their autonomy rights as individuals. The fact that someone has met the criteria for involuntary admission does not mean that they therefore lack the capacity to

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make treatment decisions, which must be assessed independently. As the court expressed the matter, their “right to personal autonomy and self-determination is no less significant, and is entitled to no less protection, than that of competent persons suffering from physical ailments” (IV). Some mental health conditions, such as schizophrenia, pose somewhat unique treatment challenges. Significant advances have been made, but nonetheless they remain difficult to treat effectively (Vergunst et al., 2017). Moreover, some treatments have undesirable side-effects and some patients are inclined to discontinue treatment, even when effective, to avoid these. The treatment administered may be sufficiently effective in controlling the patient’s symptoms that the patient no longer meets the criteria for being an informal or involuntary patient. His or her status under the law, and the rules for administering treatment, will therefore change and the patient may be released from the institution. However, if the treatment ceases to be effective once the patient has been discharged to the community—often because the patient stops taking the prescribed medication—the patient’s condition may deteriorate and the symptoms may reoccur. In consequence, the patient living in the community may cause harm to self or others, or become likely to, and the process of involuntary detention for assessment and admission may begin anew. In the interests of protecting the patient and others, it is therefore important that these patients obtain treatment and continue in treatment upon release into the community, particularly given the tendency of patients to discontinue treatment due to undesirable side-effects. Community treatment orders (CTOs) were designed largely to address this revolving door problem. CTOs were introduced in Ontario in 2000 in amendments to the Mental Health Act. The catalyst for these amendments was the 1995 murder of Brian Smith, a popular Ottawa television sportscaster, by Jeffrey Arenburg, who had been diagnosed with paranoid psychosis and had several psychiatric admissions dating back to 1990 in relation to threats against others and acts of violence. In 1991 he had been admitted specifically in relation to death threats he had made in the belief that staff of a local radio station were broadcasting his thoughts on the radio. A review board overturned his involuntary admission, and he discharged himself. Later that same year he was admitted again and treated as an involuntary patient in another province and subsequently released. Over the next several years he continued to have psychotic episodes and he continued to complain to authorities about radio waves, including

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during a trial related to an assault charge, but was not reassessed or readmitted. In 1995 he shot and killed Brian Smith with a rifle outside the television station where Mr. Smith worked. CTOs require someone who has been admitted as an involuntary patient to comply with a “community treatment plan” as a condition for release and, upon release, as a condition for remaining in the community. The treatment plan, which in addition to medication can include presentation as directed for medical appointments and abstinence from alcohol and non-prescribed drugs, is developed with input from the patient and/or substitute decision-maker. A CTO is issued by a physician, subject to the consent of the patient, if capable at the time, or a substitute decision-maker, if the patient is not capable. If a CTO is consented to, and the patient fails to comply with the treatment plan, a physician can request that the patient be apprehended by police and brought in for an examination. Upon examination, the physician can have the person detained for a mental health assessment according to the protocol described earlier and if the applicable conditions are met, the person can be readmitted as an involuntary patient. CTOs are a way of encouraging patients to obtain, and continue to receive, needed treatment, which proponents argue are justified for the patient’s own good, and for the safety of others. Many families who live with patients are supporters, having seen marked improvement in their relatives under treatment and having experienced the anguish of seeing the reappearance of symptoms when they go off their medications. Proponents argue that CTOs are the least restrictive alternative for achieving the purpose of protecting the patient and others, or at least less restrictive than the alternative of being confined as an involuntary patient to achieve this purpose. The patient’s desire to be released, or once in the community to avoid readmission, incentivizes (opponents would say “coerces”) the patient to consent to the CTO and subsequently to comply with the treatment plan and conditions included in the CTO. As long as the patient is being treated, the patient is able to live in the community without posing an undue risk to self and others. Opponents of CTOs object that, in addition to failing to address root causes of the revolving door problem, such as poverty and other social determinants of health, lack of community health services, over-reliance on medications, and lack of funding for non-medical approaches, they are coercive. Opponents argue that a patient’s consent to a CTO, and subsequent compliance with its treatment plan and conditions, is not truly consensual and

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voluntary because the consequence of refusal or failure to comply can be continued admission or forced arrest and readmission as an involuntary patient. They consider treatment under an order “forced” or “compulsory” treatment, since the choice is to accept treatment or to face arrest. Some patients report “feeling coerced and controlled” (Corring et al., 2017, p. 76); some describe it as “being on a leash.” Clinicians recognize the benefits, but struggle with the coercive aspect (Corring et al., 2018, p. 791). Supporters of CTOs may concede that consent is coerced but argue that this coercion is justified to protect the safety of the community and, paternalistically, for the welfare of the patients being “coerced.” Advocacy groups have twice unsuccessfully challenged legal provisions for CTOs before Ontario courts on the grounds that they violate liberty rights under the Charter. An appeal to the Supreme Court is pending. It is evident that CTOs are problematic from the standpoint of autonomy. However, the concept of autonomy as it has been applied in health ethics and law is itself problematic, particularly as concerns mental health (see Downie & Llewellyn, 2012). Nunnelley (2015) suggests that a relational approach to autonomy is promising, noting the work of commentators such as Sherwin (2008) and Wildeman (2012) who have applied a relational approach to the law of consent (p. 11). She proposes that “a relational autonomy lens would require that law and policy attend to the numerous contextual factors—interpersonal, institutional, and cultural—that interact with the person to enhance or undermine autonomy.” More specifically, Nunnelley (2015) notes that “it has been used to argue for a legal shift from substituted decision-making to supported decision-making,” which “starts from the premise that we all make decisions with varying levels and forms of support” (p. 11). Certainly, autonomy interpreted in the sense of individual liberty and rights, although fundamentally important, is not by itself enough to address the complex issues related to psychiatric admission, readmission, and treatment, such as poverty, lack of social support, and inadequate community mental health resources. The scholarly literature points to the need for a more comprehensive conceptualization of and approach to issues of coercion, autonomy, and human rights (e.g., the collection of critical perspectives on coercive interventions edited by Spivakovsky et al., 2018).

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5. AUTONOMY, ADVOCACY, AND EMPOWERMENT What it means to respect autonomy depends in some measure both on how one construes autonomy and how one construes the role of the nurse. The consumer model of health care, for example, tends to see autonomy in relatively narrow terms, as free action. The patient is viewed narrowly as the bearer of the right to act and decide freely, as this right is enshrined in, and limited by, law. Respect for patient autonomy means little more than non-interference except as provided by law, and the provision of information or technical assistance as required by law. The nurse is little more than an instrument of the patient’s wishes, subject to legal limitations. The clinical and ethical responsibilities of the nurse are diminished. More active roles for the nurse in promoting patients’ autonomy build on a more holistic way of looking at autonomy that situates or grounds the patient’s freedom in the particular life circumstances in which the patient exists and in relation to which the patient may be more or less autonomous. These circumstances are less the product of the patient’s freedom than the field in which the patient exercises his or her freedom. The role of the nurse is to support the patient to exercise his or her freedom to the extent possible in view of both the constraints imposed, and opportunities afforded, by the circumstances in which the patient finds his or her self. “Respect for patients’ autonomy,” Storch (1988) writes, “essentially means that patients be kept as much in command of themselves, their symptoms, and their situation as possible” (p. 215). Viewed along these lines, the nurse’s role is to assist patients to assume control, or greater control, in situations in which, for any number of reasons, they may be especially vulnerable and lack the ability to assume or maintain control. Perhaps disoriented by sickness or the loss of control that sometimes comes with being in an alien environment and unable to exercise his or her freedom in a meaningful way, a patient may need help to maintain or regain autonomy in the fuller sense of effective deliberation, authenticity, or even moral reflection. The nurse looks beyond the surface to identify barriers to understanding and comprehension, and helps the patient to critically reflect on his or situation and on information and considerations relevant to the patient’s exercise of freedom and control. Nurses advocate for individual patients to ensure that they get the best care possible and, when called for, advocate for system and institutional changes in the direction of enabling patients to assume as much

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control of their situation as possible. The health system is complex and patients and their families may need help navigating its rules, policies, and practices in order to access resources and to make meaningful and effective choices. Institutional environments can themselves be disempowering and chaotic. Patients can get lost or even forgotten in the maze. Schedules, policies, and practices can impede patients’ choices, even when the patient has adequate mental capacity for decision-making. Consider a longterm care facility in which the scheduling arrangement is that residents are woken and prepared for breakfast just before the morning shift change. This imposed arrangement may be agreeable to most residents of long-term care facilities. However, it may be intrusive for someone trying to maintain lifelong habits and preferences—for example, sleeping late in the morning—who is woken and prepared for breakfast according to the schedule. To be sure, there is a good reason for the scheduling: to organize residents according to a common fixed schedule is less resource intensive than allowing them to set their own schedules. Efficiency in the use of resources—in this case, staff time—relates to justice, which is an important value. From the perspective of administrators and caregivers, this reason may be good enough, and sufficient, to justify what they consider the relatively minor limitation of freedom for residents who would prefer to wake at a different time. From the perspective of residents, who consider the institution their home and expect to make decisions about their daily schedules, this limitation of autonomy may be significant. Patients who complain about or do not cooperate with an institution’s way of doing things may run the risk of being labelled “difficult” and of having uneasy relationships with nurses and care aides—people they rely on to meet their basic needs. When residents or patients are heavily dependent and vulnerable, nurses should seek ways to support their autonomy, respecting their choices and protecting their dignity to the extent this is possible without unduly impinging other values. This may mean working for changes in institutional practices and policies that unduly thwart patients’ desire to maintain control, or gain more control, over their lives. At minimum, nurses should take care to avoid labelling patients who complain about, or do not cooperate with, an institution’s way of doing things and be careful not to act punitively in the provision of care to such patients. The example above illustrates that respect for autonomy encompasses much more than respecting patients’ wishes with respect to treatment and minimally interfering with their freedom. It also means assisting patients to maintain control

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over their lives and decisions to the extent possible. This is especially important in institutional contexts, in which controlling or managing patients in the name of efficiency may be at odds with patient control or freedom. Sometimes, even very small things and relatively minor limitations of choice matter. If autonomy is represented in the image of the fully alert and mentally competent adult processing information and weighing alternatives, it is clear that some patients are not fully autonomous in this sense. When a patient is significantly cognitively impaired, advocating on behalf of their autonomy alone would make no sense. However, capacity to decide is a matter of degree, and for those whose impairment is not so stark what it means to respect autonomy is complex. Patients with diminished capacity to make treatment decisions or who do not meet the capacity threshold for informed consent may nonetheless have sufficient capacity to make some decisions. Moreover, autonomy can also be interpreted in terms of authenticity and consistency with personal values. Respect for autonomy requires that decisions now taken on behalf of someone who has become significantly cognitively impaired be consistent with what is known about the values of that person. This consideration of advocacy and empowerment in connection with autonomy calls for a few caveats. Firstly, not only are there different conceptions of autonomy, but in some measure, autonomy is viewed and valued differently from one cultural or ethnic group to another and even from one individual to another (Hanssen, 2004). This is a particularly important consideration in a diverse, multicultural society such as Canada. Some ethnic groups have an expectation that spouses, family members, or other members of the community will play a significant role in the decision-making process. This expectation may be at odds with the prevailing value of autonomy in the health professions and is therefore a potential source of conflict. To point this out is not to say that nurses should simply submit to the moral norms of the culture or ethnic group of the patient when those norms are at odds with respect for autonomy. However, nurses should at least be sensitive to such norms and take them into consideration in their practice and decision-making. Otherwise, as Hanssen (2004) argues, “one may coerce the patient into a kind of autonomy that is alien to him or her” (40). Importantly, respect for autonomy is not incompatible with recognizing the right of a patient to share with, or even delegate to, family members the burden of decision. Moreover, patients from diverse traditions may understand health and illness quite differently from that of the perspective of Western health care

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(Coward & Ratanakul, 1999). Different values may have a bearing on “how patients interpret their illnesses and comprehend the diagnostic, prognostic and treatment-related information provided by members of the health care team” (Hunter, 2005, p. 308). Learning to listen to how all patients and family members make sense of their health and illness experiences is therefore important (Anderson et al., 2009; Coward & Ratanakul, 1999). Secondly, as important as autonomy is in the sense of free action, and regardless of how effectively deliberated and authentic one’s choices, autonomy is not the only value that matters in health care or in society at large. Some commentators believe that autonomy has been given too much prominence in contemporary health care and society, at the expense of eclipsing the importance of other values, such as beneficence and justice, which can be in tension or conflict with autonomy. A third caveat is that some commentators believe that autonomy has been construed too narrowly and abstractly, to the point of distorting our understanding of the individual person and occluding the context and network of relationships in which individuals have been shaped and, in turn, shape their identity as individuals. Susan Sherwin (1998) argues that autonomy is only ever enacted in a complex network of relationships between individuals and organizations, and that such relationships are themselves embedded in broader sociopolitical contexts. She reconceptualizes autonomy as relational autonomy to take into account that patients are not isolated individuals acting alone but rather are deeply affected by the people, social institutions, and sociopolitical discourses around them. Mackenzie and Stoljar (2000, p. 21) argue along similar lines that “an analysis of the characteristics and capacities of the self cannot be adequately undertaken without attention to the rich and complex social and historical contexts in which agents are embedded.” On their account, autonomy is conceived as a characteristic of agents who are emotional, embodied, desiring, creative, and feeling, as well as rational. Agents are seen as relational “because their identities or self-conceptions are constituted by elements of the social context in which they are embedded” and “because their natures are produced by certain historical and social conditions” (p. 22). Similar points are made by Bergum (2013) and Rodney, Kadyschuk, et al. (2013). If we are to help patients and nurses to realize their autonomy in its relational dimensions we must try to understand, and connect across, the differences that these relationships create (Doane & Varcoe, 2005). For example,

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when nurses encounter a person in an emergency department who has been living on the street and has drug addictions, they should consider how that person has been affected by experiences in her or his family of origin, by schooling, or by illnesses or injury. In particular, they ought to consider how they will be damaged by the negative stereotyping that they too often meet as they enter the emergency department (“just a drug addict,” “medication-seeking,” “frequent flyer,” for example).

6. CONCLUSION One of the most remarkable developments in health care and in health care ethics has been the ascendance of the value attached to patient autonomy. The legalization of MAID, which we address in chapter 8, is a recent case in point. Respect for autonomy represents a formidable commitment for nurses, especially given the different meanings of the concept. There can be doubt or uncertainty about whether a patient has the capacity to make a given treatment decision. Challenges can arise when a patient, or a patient’s substitute decision-maker, chooses a treatment option that is incompatible with the nurse’s professional judgment, with the agency or institution’s policy or practices, or with the plan of care. Respect for autonomy may come into conflict with other values such as beneficence and justice. When respect for autonomy can be realized only at the expense of some other value, it can be difficult to decide which value should take precedence. A commitment to respect for autonomy does not mean that nurses or other health professionals are mere instruments in the service of patient wishes. Nurses are accountable and responsible for their practice. They must use their knowledge, skill, and judgment to decide what care to provide, why, and when. If respect for patient autonomy is not to be a mere slogan, nurses will have to think carefully about these matters. They will need to weigh respect for autonomy as a value together with other possibly conflicting values and to develop sound judgment in determining how best to advocate for their patients. Nurses should discuss these difficult cases with colleagues, mentors, and their professional organizations when appropriate. In most institutions a clinical ethics resource will be available for consultation. Many ethical problems are framed as conflicts between the rights of one person or group and the rights of another person or group. Nurses need to

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be sensitive to Canada’s multicultural composition. In Western cultures, personal freedom tends to be highly valued—and sometimes placed above the welfare of others or of the community. In other cultures, individual autonomy is not valued to the same extent relative to other values. For example, it may be part of a cultural tradition that decisions about treatment are made not by the patient but by, or shared with, family members. This is not inconsistent with respect for the autonomy of the patient provided that the patient in effect delegates his or her right to make treatment decisions, as any patient is free to do. However, based on the fact that a given patient belongs to a cultural tradition that typically vests decision-making in family members, one should not assume that the patient has made or would make such a delegation. In the first place, one’s understanding of that cultural tradition and its typical practices regarding patient decision-making may be superficial or even incorrect. In the second place, even if there is a typical practice of patients deferring to family members about treatment decisions, the patient may or may not accept that traditional practice. In place of assumptions, it is necessary to learn from the patient what his or her wishes are with respect to the involvement of family members in decision-making.

CASE STUDIES CASE 1: Advocating on Behalf of Vulnerable and Voiceless Patients Respect for autonomy includes more than honouring the wishes of a clearly competent patient, as important as that is. It also comes into play in relation to patients whose autonomy is in question, or who for one reason or another cannot make their preferences known. Individuals, such as young children or persons with dementia unable to identify or articulate their needs and preferences may be at risk of being ignored. Nurses spend long hours with patients and may have insight into what care the person wants or does not want. With patients whose autonomy is diminished or otherwise impaired but who may still be capable of some measure of autonomy, respect for autonomy may require a special effort. Nurses will need to help determine what the patient really wants, perhaps by supporting the patient to become more

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assertive and helping him or her to achieve greater control in the situation. The task may be increased when institutional arrangements are not conducive to the flourishing of patient autonomy. In some institutions, patients may be treated in ways that effectively infantilize or manipulate them and suppress autonomy. Michelle, 35, is a registered nurse who works in intensive care. She now happens to be a patient in the same hospital that employs her. She is well liked and respected by her colleagues. An accomplished amateur hockey player, she fell on the ice during a game and sustained a concussion. Examinations revealed a brain tumour that is suspected to be malignant. Her clinical team thinks her prognosis is good. Surgery is recommended. Michelle is accompanied to the hospital by her partner, Kathleen. As an experienced nurse, Michelle knows that before the surgery she will be asked about resuscitation. She wants to say no to the resuscitation, but is worried that her colleagues will resent that decision. She well remembers hearing comments made when patients with a good prognosis asked for no cardiopulmonary resuscitation ( CPR ): “ Why are we bothering if they don’t want to live?” She now fears that her colleagues will be thinking, “ Why are we working so hard, if she doesn’t want CPR ?” But Kathleen supports her decision, and together they approach her nurses and physicians to ask for a do-not-resuscitate ( DNR ) order, and subsequently complete an advance directive saying that if she has a cardiac arrest during the procedures she does not want CPR . Michelle takes the time to explain her point of view: If she arrests, the probability of her recovering from the surgery will be significantly diminished. Also, she makes clear that she does want other life-support interventions of intubation, oxygen, and antibiotics. The neurosurgery team expresses surprise at her decision. The team argues that if she does have a cardiac arrest she could come through it and do well. Michelle says she is not willing to take that chance. Michelle starts to put her affairs in order. She calls her parents, with whom she has had little contact for the past five years. When she “came out,” they did not approve of her lifestyle because it conflicted with their religious beliefs. She left her hometown and moved to a large urban community. She has kept in touch with her parents through cards on annual holidays, and occasional phone calls and emails. They take the “don’t ask, don’t know” approach. When they hear she has brain cancer, they fly from the East Coast

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to be with her, planning to stay until after the surgery. They take turns with Kathleen at her bedside. The day before her surgery Michelle has pre-operative medication that will sedate her. Kathleen is exhausted and goes home for some rest. The parents stay at their daughter’s bedside. Kathleen plans to return to be with Michelle during the evening before surgery. Michelle, in an induced coma, arrests. Her parents are with her. They tell her nurse, Tapeessa Maksagak, that they want her to be resuscitated. Tapeessa tells them that Michelle stated that she would not want to be resuscitated. The parents insist, Tapeessa immediately summons the attending physician, and a code is called. The team works for 20 minutes before Michelle is pronounced dead.

Case 1: Commentary In this case the patient had clearly planned ahead, making her wishes known in the event that she arrested. However, her parents were unaware of her wishes and would not have approved because of their religious beliefs. They were not her substitute decision-makers. Her nurse, Tapeessa, was aware that same-sex partners rank higher than parents on the list of substitute decision-makers, and she knew what Michelle wanted. Still, in the face of the insistence from Michelle’s parents, Tapeessa and the health care team followed their wishes. Despite the intense pressure she was under, Tapeessa and the health care team had a moral obligation to advocate for Michelle and to explain to her parents that they should respect their daughter’s stated wishes. It would need to be explained to them that Kathleen has been assigned the role of substitute decision-maker, and that Michelle’s prior wishes should not be overruled. Unfortunately, when Michelle was conscious the health care team did not help her discuss her wishes with her parents and they could not have informed her parents of these wishes without her permission because the information was confidential. Given that this conversation did not happen, the parents were shocked and insisted on CPR. Tapeessa and the team complied with the parents’ frantic demand that Michelle’s life be saved. To prevent this situation from happening again, the unit team reviewed the hospital policy regarding advance directives, including the rights of same-sex partners as substitute decision-makers and situations in which hospital staff can refuse requests from a family that are contrary to the patient’s prior wishes.

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Certainly, it is difficult to advocate for a voiceless person at such a time. Yet Tapeessa and members of the arrest team ought to have respected the patient’s wishes. One consequence of their decision was that Michelle experienced a less peaceful death than should have been the case. Tapeessa, along with all the clinical team at the arrest, had a duty to advocate for the good of the patient and to recognize her partner as her lawful substitute decision-maker. This issue can also be approached through the principle of autonomy. Nurses should be aware of any impediments to the realization of patient autonomy and act in ways that increase the opportunities for patients to become more autonomous. Nurses need to think about whether patients are intimidated or silenced by the culture of the unit. Patients may be hesitant to ask for cessation of life support, oxygen, antibiotics, DNR, or a transfer to palliative care. As an intervention that can be refused, CPR is only one of many that are available to sustain life. No to CPR does not mean no to all other interventions. Each option must be discussed. Michelle did not want CPR, but she did want surgery, oxygen, antibiotics, and intubations, for example. The ability of patients to exercise their autonomy rights can be strengthened or diminished depending on how the health care team relates to them. Explicitly stated or implied expectations can convey strong messages. For example, when members of the health care team use the language of battle or war—such as “you can defeat this disease”—a patient may fear being considered weak or a coward if he or she decides to “give up the fight.” The patient may think she or he is letting the team down. The unit’s expectations, implied or explicit, that the patient can “fight the illnesses” can have the effect of silencing patients or making it stressful for them to ask questions, challenge their clinical team, ask for a second opinion, or refuse recommended care. A vicious circle might be at work here: Patients, feeling vulnerable, put themselves in the hands of the oncology staff; in turn staff respond by putting forward a brave manner, offering everything in their arsenal to beat the illness or disease. It is difficult to challenge the culture under such circumstances. It takes empathy and time to respect autonomy by allowing patients to voice fears and ask questions, and in waiting for them to make complex decisions. Patients need to know that they can disagree with recommendations without being penalized. After this incident Tapeessa and her colleagues recognized that they had to work to change the culture of the unit. They wanted patients to feel free to ask questions and change their treatment plans without running the risk

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of rejection or angering the team. The entire unit’s staff became aware of their influence over patients and agreed to seek out hospital ethics resources. They reminded themselves that patient-focused care meant that they had “to walk the talk.” They admitted that some of them were not up to date on the rights of same-sex couples. Looking at their practice, nurses realized that they needed to find ways of advocating for patients and being supported by their team. They talked about the thorny issue of providing CPR when the clinical facts make it clear that the person will not survive the resuscitation. The nurses, with support from the professional development staff, also took and implemented a program about learning how to communicate empathetically with cancer patients and to support them to make informed, freely made decisions. Staff learned that when a patient accepts some interventions but not others—for example, oxygen, antibiotics, and surgery but not resuscitation and intubations—it is not a question of patients being weak and of staff being let down. In choosing how to respond to this issue, nurses are making a decision about what kind of practitioners they want to be. If they conform to the tradition of the unit, they might well be sacrificing their moral integrity. Tapeessa had the support of her colleagues when she asked that they all learn from the situation. Sometimes nurses who advocate for the profession and for patients are at risk of being labelled as troublemakers. The work environment may be soured; the nurse may feel isolated and want to leave the profession. To prevent such problems, nurses in leadership roles should ensure that discussions of professional practice standards include welcoming calls to examine practice to make certain that caregivers are supported in hearing and respecting the autonomy of patients.

Case 1: Questions 1. Tensions can arise between nurse and nurse, nurse and patient, nurse and substitute decision-maker, and substitute decision-maker and other family members. Analyze this case in terms of these four tensions. How can nurses respond and manage such tensions? 2. Discuss how nurses, their colleagues, and institutions and institutional factors such as structures, policies, or rules, can either promote or suppress patient autonomy.

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3. Advocacy in nursing includes both advocacy with respect to the patient’s health and well-being, and advocacy with respect to the patient’s exercise of autonomy. Give an example of each and discuss how they are different. 4. Discuss the following statement: “Respect for patient autonomy does not mean that I have to agree with what the patient chooses; likewise, I can and should advocate on behalf of what the patient wishes even if I disagree with what the patient wishes.” Do you agree or not? Give reasons. CASE 2: Hassan Rasouli, Withdrawal of Life Support, and Limits of Autonomy Health care ethics and law pertaining to autonomy continues to evolve. As discussed earlier in this chapter, some commentators believe that the pendulum has swung too far in favour of autonomy, to the relative neglect of beneficence and other values. The case of Mr. Hassan Rasouli raises important questions about the limits of the principle of autonomy and potential tensions or conflicts between autonomy and other important values in health care. In April 2010 Hassan Rasouli, a 59-year-old engineer from Iran, immigrated to Toronto with his wife, Parichehr Salasel, who was a family physician, and their two adult children. In August, he presented to his family doctor with dizziness and numbness of his right ear. Investigative tests revealed that he had a benign brain tumour. On October 7, 2010 he underwent surgery for its removal at Sunnybrook Health Sciences Centre. Post-operatively, he developed complications that caused severe, widespread brain injury. The day after his surgery he was placed on life support and by October 16 had passed into a coma. On October 17 a neurologist determined that he met the conditions for a diagnosis of persistent vegetative state ( PVS ), except for the condition, which he would later meet, that a patient must have been in that state for at least three months. In mid-November 2010 the chief of critical care at Sunnybrook, Dr. Brian Cuthbertson, informed P. Salasel that her husband’s loss of consciousness was irreversible. According to him, he sought to have P. Salasel’s “acquiescence” to the removal of life support; according to P. Salasel, he sought her “consent.” In any event, she strongly opposed removal of life support on the grounds that this would be contrary to her husband’s religious

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values and beliefs as a practising Shia Muslim. Moreover, she did not agree with the assessment of her husband’s condition. She remained opposed despite ongoing discussion with staff. The physicians responsible for Mr. Rasouli’s care believed that “appropriate treatments for his condition had been exhausted ... that there was no realistic hope for recovery” and that “continuing life support would not provide any medical benefit to R and may cause harm.” They sought “to remove his life support and to provide palliative care until his expected death” (Cuthbertson v. Rasouli, 2013, para. 6). P. Salasel filed to the court for an injunction to prevent the removal from occurring. This initiated a legal process that eventually ended up in the Supreme Court of Canada ( SCC), Cuthbertson v. Rasouli (2013). Early in 2011, Mr. Rasouli began to exhibit behaviour—movement of eyes and fingers—that his family interpreted as evidence of awareness and communicativeness. Several neurological examinations were conducted that confirmed a PVS diagnosis, but in a consequence of a January 2012 neurological examination his diagnosis was changed from PVS to minimally conscious state, a relatively new diagnosis characterized by intermittent periods of awareness and a somewhat better prognosis. However, this was not relevant to how the SCC decided the legal issue before it. The legal issue turned on whether, under Ontario’s HCCA (1996), P. Salasel’s consent was required for the removal of life support. That issue, in turn, depended on whether the term “treatment” in the HCCA included the removal of life support even when, as Mr. Rasouli’s physicians claimed, life support was not medically beneficial. If such removal were considered treatment, P. Salasel’s consent as her husband’s substitute decision-maker would be required. In the HCCA framework, the substitute decision-maker must decide in accordance with any known wishes of the incapable person (21.1). If there are no known wishes, she or he is required to take into consideration several factors related to the incapable person’s best interests, including “the values and beliefs that the person knows the incapable person held when capable and believes he or she would still act on if capable” (21.2a) and whether the treatment is likely to be beneficial in terms of the incapable person’s well-being (21.2c). In the event of an unresolved dispute about treatment between the responsible physician and the substitute decision-maker, resolution would be up to the Consent and Capacity Board ( CCB ), an entity created along with the HCCA . The onus would be on the physician to establish that

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the substitute decision-maker did not appropriately apply the guiding criteria specified in the HCCA . In a five-to-two ruling written for the majority by Chief Justice (C.J.) McLachlan, the SCC upheld the ruling of two lower courts that removal of life support in the circumstances was treatment, that therefore P. Salasel’s consent was necessary for its removal, and that the appropriate recourse to challenge her refusal of consent would be through the CCB . The appellants, Drs. Cuthbertson and Rubenfeld, elected not to pursue the matter further through the board.

Case 2: Commentary Mr. Rasouli’s story was widely publicized. Television programs, YouTube videos, and Facebook pages presented the story in detail. The problem was sometimes characterized as a David and Goliath story: New immigrant family challenges the decisions of physicians at a major Canadian hospital. The family’s position was based mainly on respect for autonomy. P. Salasel believed that removal of life support was treatment under Ontario’s HCCA (1996) and that, as her husband’s substitute decision-maker, her consent was therefore required for the removal of life support. She claimed that, given his religious beliefs and values, her husband would want to be kept alive, notwithstanding his diminished quality of life. According to his beliefs and values, being kept alive could itself be considered a benefit of life support. Additionally, she was hopeful that her husband’s condition would improve. She was encouraged in this by changes in his behaviour that she interpreted as indicating awareness, and by the subsequent change in his diagnosis from PVS to minimally conscious state. The position of the physician appellants, rejected by the SCC majority, was that consent was not required because life support is not treatment when, in the physician’s assessment, it provides no medical benefit, and that likewise the withdrawal under the circumstances was not treatment. Therefore, the substitute decision-maker’s consent was not necessary. The onus would be on P. Salasel to challenge their medical decision, not through the CCB (which would only make sense if, as the appellants denied, her consent was legally required) but through a court applying principles of common law.

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C.J. McLachlan made clear that the majority’s ruling was specifically based on provisions in Ontario’s HCCA. The ruling would not be applicable to other provinces that did not have a similar statutory framework for resolving conflict. Frameworks may vary in details, but there needs to be some legal means of resolving disagreement or conflict about end-of-life care or treatment between care providers and patients or their surrogates when it cannot be otherwise resolved through dialogue and negotiation. These situations are relatively rare, but they do arise. The appellants did not object in principle to the framework as such but rather argued it was not applicable in this case because they did not consider removal of life support to be treatment in this instance, and therefore did not believe that consent was required in the first place. They considered the provision of life support in Mr. Rasouli’s case to be “futile” and believed therefore that it was not “medically indicated” and had ceased being a treatment. They did not expect Mr. Rasouli to improve substantially. Several neurologists and intensive care specialists supported this assessment. The physicians believed they had a professional and ethical duty to act in Mr. Rasouli’s best interests. Ontario’s HCCA (1996) defines treatment as “anything that is done for a therapeutic, preventive, palliative, diagnostic, cosmetic or other health-related purpose, and includes a course of treatment, plan of treatment or community treatment plan” (Section 2.1). C.J. McLachlan rejected the Appellant’s argument that life support is not treatment when it is not medically beneficial. She did so on the grounds “that it substitutes a physician-made criterion for treatment (medical benefit) for the criterion specified in the HCCA for consent (health-related purpose).” C.J. McLachlan did not dispute the appellant’s view that in circumstances such as Mr. Rasouli’s, life support provides no medical benefit, which view she noted is widely held in the medical community. Rather, she reasoned that the definition of treatment in the HCCA, which includes “anything that is done for ... health-related purposes,” is broad enough to include measures that simply keep a patient alive or prevent death from occurring. She pointed out that the “wording of the HCCA does not limit ‘health-related purpose’ to what the attending physician considers to medically benefit the patient” and that in fact the HCCA does not use the term “medical benefit” at all (para. 29). If, as the appellants argued, “medical benefit” were a condition necessary for a given intervention to be considered treatment, the decision about whether a given intervention was treatment, and hence required consent, would be a

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clinical decision, about which physicians could rightfully claim expert authority. This would support the status quo allowing physicians to decide unilaterally whether to withdraw life support. The term “health-related purpose,” by contrast, is not a clinical term to be applied unilaterally by physicians as medical experts but rather a legal term of art (i.e., not strictly medical, and therefore not to be decided unilaterally by physicians) that the HCCA deploys for the purpose of deciding whether a given intervention requires consent. C.J. McLachlan’s point can be further elaborated. One problem with allowing terms like “no medical benefit,” “futile,” and “not medically indicated” to do the work of deciding whether consent is required is that, notwithstanding the apparent objectivity of these terms, they can mask a value judgment that arguably belongs to the patient, or in this case the patient’s surrogate, to make. The term “health-related purpose” is more supportive of the patient’s right to decide what counts as a benefit. From P. Salasel’s perspective, deciding on behalf of her husband, simply staying alive on life support was a benefit for him given what she knew about his values and beliefs. Additionally, beginning signs of awareness gave her reasons to hope, even against expert opinion to the contrary, that his prognosis would improve. Another key issue raised by the SCC ruling concerned the ethical challenge that physicians would face if they were required by law to provide care that, in their clinical opinion, did not provide benefit, or was not medically indicated, or was futile, or was even harmful. The appellants argued that in effect being “compelled to continue providing life support, even where they consider it to provide no benefit, or even to harm, the patient” could put them in an “untenable ethical situation” in which “they would have to go against their legal and professional obligations to act in the patient’s best interests” (para. 71). C.J. McLachlan accepted that “a physician may feel that his legal obligation not to withdraw life support is in tension with his professional or personal ethics” but pointed out that “such tensions are inherent to medical practice” (para. 73). She deftly noted that “the law of consent evolved through cases of conflict in which the physician felt a professional obligation to treat and the patient did not wish to be treated” (para. 73). In either case—a legal requirement not to treat or a legal requirement to treat—the law has evolved and is applied “irrespective of the ethical imperative a physician may feel” (para. 73). In whichever way the law draws a line concerning treatment, “it is inevitable that physicians will face ethical conflicts regarding the withdrawal of life support” (para. 75). She expressed sympathy for physicians who find themselves

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in an “untenable ethical situation” in consequence of legal obligations but suggested that practical solutions, such as transferring a patient to another facility or to another physician who does not feel the same way about their ethical obligations, “could go far in averting any ethical conflict” (para. 75). Two of the seven justices dissented from the majority opinion and interpreted the applicable legal norms quite differently. Justice Karakatsanis, joined by Justice Abella, noted that the HCCA “is designed to give effect to the principle of autonomy” and does permit “a patient to refuse medical treatment, no matter the consequences” (para. 165). However, he argued that “neither the HCCA nor the common law permits a patient to dictate treatment.” He reasoned that to “permit a patient to insist on the continuation of treatment that is medically futile” would amount to “an extension of the principle of autonomy” and this extension “would have a detrimental impact on the standard of care and legal, ethical, and professional duties in the practice of medicine” (para. 165). He asserted that the “role of patient autonomy must be balanced with the physician’s role, expertise, and advice” (para. 166). There is difference between the right to refuse treatment and the right to refuse withdrawal of a treatment that the physician considers to offer no benefit, or even to be harmful. However, it is important to note that C.J. McLachlan limits the reach of her conclusion narrowly to the claim “that ‘treatment’ in the HCCA should be understood as extending to withdrawal of life support” in situations like Mr. Rasouli’s, and clarifies that her conclusion “does not stand for the proposition that consent is required under the HCCA for withdrawals of other medical services or in other medical contexts” (para. 70). Justice Karakatsanis’s implication that C.J. McLachlan’s ruling would permit the patient “to dictate treatment” and to “insist on the continuation of treatment that is medically futile” does not take into account this important qualification. C.J. McLachlan’s carefully circumscribed conclusion does not apply to any instance of care a physician may deem to be futile but very specifically to the withdrawal of life support in situations like Mr. Rasouli’s. The Rasouli case illustrates complexities in the key concepts around which this book is organized and interconnections among them. In the first place, it raises questions about how the principle of autonomy should be interpreted. Not so long ago, the right of a patient to refuse care was contentious. However, over time it came to be deeply rooted both in legal statutes, such as Ontario’s HCCA, and in the common law. According to the SCC ruling, the law in Ontario and other provinces with similar legal frameworks extends the

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principle of autonomy beyond the right to refuse treatment to the right to be provided with continued treatment even against the medical standard of care, albeit in the narrowly delimited circumstances of withdrawal of life support. This expansive interpretation in law of the principle of autonomy is undoubtedly a “win” for autonomy, but may not be so from the standpoint of other values engaged or in play. From the standpoint of beneficence, one could construe the law as interpreted in the SCC ruling as an instance of autonomy trumping beneficence. Mr. Rasouli’s physicians believed that continued life support was not medically beneficial, and was even harmful to his interests. Indeed, they argued, and even C.J. McLachlan did not deny, that compliance with the legal requirement to continue life support in such instances would create a tension with their professional or personal ethics and could put them in an “untenable ethical situation.” To this extent, the “win” for autonomy could be counted as a “lose” not only for beneficence, but also for integrity insofar as it can place physicians in the “untenable ethical situation” of being expected to provide care inconsistent with their personal or professional ethics. It is noteworthy that around the same time the SCC was considering the Rasouli case, three intensive care unit physicians resigned their positions rather than obey a court injunction to treat a similar patient in a near-vegetative state, which they believed would have required them to breach their ethical responsibilities (Schafer, 2013). One way of looking at these resignations is to suppose that, in order to maintain their integrity—to hold steadfast to what they believed to be their professional or personal ethics—the physicians felt it necessary to resign. Being placed in an “untenable ethical situation” is an experience that is familiar to nurses, and one that can cause significant moral distress, as discussed elsewhere in this book. Moreover, in cases like Mr. Rasouli’s the burden on nurses who feel that continued life support is not beneficial or even harmful can be even greater since they will have more continuous and intimate contact with the patient on a daily basis and be expected to perform or assist in various procedures necessary to sustain the patient on life support. Ethicist Arthur Schafer (2013) imagines that Mr. Rasouli’s “body will inevitably deteriorate further” and that the support necessary to sustain him will include “a tube down his throat so that he can breathe, a catheter in his bladder, large central tubes for fluids and medications, frequent surgical removal of infected skin tissue to prevent gangrenous infections, suctioning of his lungs to remove fluids that would make him choke, and so on.” He points out that these procedures

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are “collectively distressing,” and claims that when “there is no compensating benefit, critical-care doctors are likely to describe the treatment as ‘torture’” (Schafer, 2013). Justice Karakatsanis hinted at yet other issues in noting that “there are a myriad of important interests, such as the integrity of our health system, at stake” (para. 166). One such stake is the societal interest in ensuring that limited health care resources are used prudently and distributed fairly to those in need of them. The Sunnybrook physicians did not argue their point along these lines and it did not figure in the reasoning of the Supreme Court justices. However, the ruling does have implications as concerns justice in resource allocation. Sibbald et al. (2014) call this “the elephant in the room,” noting that “substantial resources are required to maintain patients on life support where it is argued that there is no medical benefit and treatment lies outside the standard of care” (p. 328). An intensive care unit (ICU) bed is a scarce and valuable resource. At the time of writing, the average cost of an ICU bed is almost $3,000 per day. Patients usually stay in the ICU for much longer. The goal is that they will benefit and be transferred to a different level of care. When the patient is not improving and benefitting from the ICU resources, a decision has to be made about how long the person will continue to have a chance to improve and whether it is time to move to a different level of care. In the three years leading up to the SCC ruling, Mr. Rasouli’s care would have cost more than three million dollars. Schafer underscores that “one person’s provision is another person’s deprivation,” meaning by this that expending resources to keep patients like Mr. Rasouli alive takes away from the pool of limited resources that could otherwise be used to benefit other persons in need. Resource allocation considerations of this sort, balancing resources to individual patients against the collective good, will be discussed at greater length in the chapter on justice (see chapter 6). It will take time for the full implications and repercussions of the Rasouli case to emerge. To date we have very little evidence concerning its impact (Hawryluck et al., 2014; Sibbald et al., 2014). The extent of the potential conflict or tension between an evolving interpretation of the principle of autonomy and other important values will depend on several factors. Will other jurisdictions adopt legal frameworks substantially similar to that in Ontario? Will the principle of autonomy in such legal frameworks be extended beyond withdrawal of consent for life support to include other treatments a physician

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may believe to be futile? How will physicians and other providers alter their practices in view of the ruling? Downar et al. (2014) write: If the Supreme Court decision in this case applies only to situations of intractable disagreement about continuing life support in similar cases in Ontario, then it will affect few patients. Physicians, patients and substitute decision-makers usually agree about care decisions. Intractable conflicts about withdrawal of life support are rare, as are applications to the Consent and Capacity Board. Yet futile care may be common, and the number of referrals to the Consent and Capacity Board for withdrawal of life support has increased recently. (p. E623)

In a study of the impact of the Rasouli decision on the behaviour of Canadian intensivists, Cape et al. (2016) report that “many Canadian ICU physicians report providing a higher intensity of treatment, and less subjectively appropriate treatment, in situations of dispute over EoL care” (p. 180). Downar et al. (2016) note that following the Rasouli decision the College of Physicians and Surgeons of Ontario (CPSO, 2019) updated its policy on end-of-life decision-making to “include a new requirement for physicians to obtain consent to withhold cardiopulmonary resuscitation ... regardless of the medical situation” (p. 245). Downar et al. argued that this new requirement could have a broad and negative impact on end-of-life care in Ontario (p. 245). However, the legal and regulatory situation is fluid. In August 2019 the Ontario Superior Court (Wawrzyniak v. Livingston, 2019) dismissed a medical malpractice lawsuit brought by the daughter of a man who claimed that her father’s physicians did not meet an acceptable standard of care in writing a DNR order without her consent as his substitute decision-maker. As in Rasouli, the issue of consent centred on the interpretation of treatment according to the HCCA definition, but the Ontario Superior Court determined that the two situations were significantly different. The Rasouli case was about the withdrawal of life support, which does count as treatment under the HCCA, and for which therefore consent is required. The Wawrzyniak case, however, was about the decision not to offer or administer CPR, and the Ontario Superior Court determined that such a decision does not constitute treatment, and therefore does not require consent. In response to the decision in the Wawryzniak case, the CPSO (2019) revised its policy to read: “If the patient experiences cardiac or respiratory arrest while conflict resolution is underway regarding the writing

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of a no-CPR order, physicians must provide all resuscitative efforts required by the standard of care, which may include CPR.” In other words, ultimately the decision to administer (or not administer) CPR in the moment belongs to the physician, to be made in view of the clinical circumstances and in accordance with the professional standard of care.

Case 2: Questions 1. Present ethical arguments that support the position of Mr. Rasouli’s substitute decision-maker and ethical arguments that support the decision of the physicians caring for Mr. Rasouli to cease life support. Which arguments do you find more compelling and why? 2. The elephant in the room was the cost of intensive care. Give reasons for and against the view that costs should be considered in decision-making about end-of-life care. 3. It is not uncommon for nurses to disagree with treatment decisions their patients or substitute decision-makers make. What challenges does this pose for nurses? How can or should nurses manage such situations to best support the autonomy of patients and their families, and to maintain their moral integrity and that of other members of the health care team? 4. Imagine the situation of a nurse who strongly believes that continuation of life support is morally wrong and contrary to professional obligations when there is no reasonable expectation of improvement or recovery. Do you believe that accommodation should be made for the nurse to avoid being directly involved in caring for a patient under these circumstances? CASE 3: Scott Starson, Mental Illness, and Capacity to Decide Scott Starson’s story highlights ethical issues persons with mental illness experience in relation to the health care system, as well as the dilemmas faced by family, caregivers, nurses and other health care professionals. His story is complex and illustrates how health care providers may respond differently to the refusal of care by a person with a diagnosis of mental illness as opposed to, for example, a person with cancer. There are several goals for studying the case:

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to reflect on attitudes and behaviours toward persons with mental illness, to understand and apply principles related to respect for autonomy, and to understand the legal framework that guides mental health care. Scott Starson (who changed his name from Scott Jeffery Stutzman) was a graduate of Ryerson University’s engineering school. He co-authored articles on physics that had been published in scholarly journals, and was accepted as a peer by some physicists who later wrote endorsements of his abilities. Starting in 1985, he was admitted to multiple psychiatric institutions in the United States and Canada and diagnosed with bipolar disorder (Starson v. Swayze, 2003). He was detained against his will (as an involuntary patient) for one year in an Ontario psychiatric hospital. His psychiatrists ordered pharmacological management using neuroleptics, mood stabilizers, anti-anxiety medication, and anti-Parkinson medication. Mr. Starson refused to take these medications. He stated that these medications caused him to be slow in his thinking. In the event that the medication made him “ normal,” he stated that being “normal would be like a death sentence for me, because I have always considered normal to be a term so boring that it would be like death” (Makin, 2003). His caregivers thought this decision demonstrated that he lacked capacity to make treatment decisions and that his mother, his substitute decision-maker, should make decisions about his medications. From the perspective of his physicians, his mother, and many caregivers, he lacked capacity. From their perspective, he did not meet the requirements to make an informed consent. The Ontario HCCA (1996) permits a person to be treated without consent on grounds of lack of capacity, defined as a lack of the ability “to understand the information that is relevant to making a decision about the treatment and to appreciate the reasonably foreseeable consequences of a decision or lack of decision.” Across Canada there are different processes to appeal an assessment of incapacity. In Ontario, an appeal is made to a quasi-legal panel called the CCB (Consent and Capacity Board), composed of health care professionals, lawyers, and members of the public. Patients can have assistance from a patient advocate, a lawyer, who may be funded by legal aid. Mr. Starson applied to the CCB for a review of the physician’s assessment and the CCB confirmed that he lacked capacity. He denied he had a mental illness, and he thought the proposed pharmacological management plan would do more harm than good. He was willing to try non-pharmacological interventions.

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Mr. Starson disagreed with the finding that he lacked capacity to make treatment decisions about his psychiatric illness. His position was that he did not have an illness but that he did think differently than other people. His experience with the recommended medications was that they interfered with his ability to concentrate on his academic and research interests. For him, the decision was based on sound reasoning and in his best interests. From the perspective of his physicians and the CCB, his responses were evidence that he was not deliberating effectively and lacked capacity to make treatment decisions about his illness. His denial of his diagnosis was interpreted to mean that he did not understand his clinical condition. Because Mr. Starson denied having a mental illness he could not meet the requirements of being capable to give consent to treatment. In the event that he agreed he had an illness and refused recommended pharmacological management on the grounds that the medication was more harmful than the disorder, again his capacity to understand and appreciate treatment options could be challenged. Finally, the decision not to accept recommended medications was also considered evidence he was not acting in his best interests. An important aspect of mental health law is that built into the legal system are opportunities to appeal the decision of incapacity. Starson was persistent and took his case to an Ontario court, which ruled that the CCB had erred. His physicians were persistent also: They appealed this decision at the provincial level and were unsuccessful. They went to the SCC for a hearing, and again the decision was that Mrs. Starson had capacity to make treatment decisions regarding his mental illness. The SCC decision states succinctly why they thought he had capacity to say no to recommended medication. In its reasons for decision, the SCC wrote: The presumption of capacity can be displaced only by evidence that a patient lacks the requisite elements of capacity provided by the Act. Capacity involves two criteria: first, a person must be able to understand the information that is relevant to making a treatment decision and second, a person must be able to appreciate the reasonably foreseeable consequences of the decision or lack of one. The legislative mandate of the Consent and Capacity Board is to adjudicate solely upon a patient’s capacity and the Board’s conception of the patient’s best interests is irrelevant

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to that determination. The question under review, namely the Board’s determination of capacity, is a question of mixed fact and law: The Board must apply the evidence before it to the statutory test for capacity. In the absence of any error of law, this question is relatively fact intensive. Applying the pragmatic and functional approach to this question, it is clear that reasonableness is the appropriate standard of review. In this case, the reviewing judge applied the proper standard of review and correctly held that the Board’s finding was unreasonable. The Board’s determination of incapacity turned on two findings: that the respondent was in “almost total” denial of a mental disorder, and that he failed to appreciate the consequences of his decision. A careful review of the evidence demonstrates that there is no basis for either of these findings. Although the patient did not conceive of the condition as an illness, he was quite aware that his brain did not function normally. There was also no evidence that the proposed medication was likely to ameliorate the respondent’s condition. Moreover, the respondent appreciated the intended effects of the medication. The Board’s conclusion that treatment would improve his chances at future review board hearings is entirely speculative. There was no basis for the Consent and Capacity Board to find that a possible benefit of treatment would be the resumption of the respondent’s work as a physicist. Lastly, the respondent was never asked at the hearing whether he understood the possibility that his condition could worsen without treatment. Consequently, there is no support for the Board’s ultimate finding of incapacity. (Starson v. Swayze, 2003) In summary, a person’s family or caregivers’ belief that the person’s decision about treatment is not in his or her best interest is not a reason to conclude that the person lacks capacity. Similarly, someone’s disagreement with a diagnosis is not a reason to conclude lack of capacity. The case poses questions about how to assess for incapacity and whether there is a double standard for persons with a diagnosis of mental illness.

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Case 3: Questions 1. Have a class debate. The motion is: Mr. Starson had the capacity to make his own treatment decisions and the SCC made the right decision. For the motion: Mr. Starson, a patient advocate, and a nurse caring for Mr. Starson. Against the motion: Mr. Starson’s mother, a CCB member, and a nurse caring for Mr. Starson. 2. In your province or territory what is the procedure to be followed by nurses, physicians, and family members when a determination is made that the patient lacks capacity? Discuss the relevance of autonomy in relation to capacity assessment. 3. A colleague says, “If you are in hospital because you are a danger to yourself, obviously you are not thinking clearly enough to decide on how to treat your illness. The substitute decision-maker should be making treatment decisions for you.” Have you heard this point made by health care professionals? Explain the context. From an ethical perspective do you agree with the statement? Is the statement legally correct? 4. Advocacy groups say that the root causes of persons with mental illness needing hospitalization are poverty, lack of community mental health supports, and stigmatization. They claim that in order to improve the lives of those diagnosed with mental illness, there should be less medicalization of the mental illness and more social and economic programs. Do you agree or disagree, and why? Relate your discussion to the impact of a person’s life situation and access to resources on their autonomy.

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REFERENCES Anderson, J.M., Rodney, P., Reimer-Kirkham, S., Browne, A.J., Khan, K.B., & Lynam, M.J. (2009). Inequities in health and healthcare viewed through the ethical lens of critical social justice: Contextual knowledge for the global priorities ahead. Advances in Nursing Science, 32(4), 282–94. Bergum, V. (2013). Relational ethics for health care. In J. Storch, P. Rodney, & R. Starzomski, (Eds.) Toward a moral horizon: Nursing ethics for leadership and practice (2nd ed., pp. 127–42). Pearson-Prentice Hall. British Columbia College of Nursing Professionals (BCCNP). (2019). Practice standard: Consent. https://www.bccnp.ca/Standards/RN _NP /PracticeStandards/ Pages/consent.aspx Byrick, K., & Walker-Renshaw, B. (2016). A practical guide to mental health and the law in Ontario, revised edition. Ontario Hospital Association. Canadian Nurses Association (CNA ). (2017). Code of ethics for registered nurses. https://www.cna-aiic.ca/-/media/cna/page-content/pdf-en/code-of-ethics-2017edition-secure-interactive.pdf Cape, D., Fox-Robichaud, A., Turgeon, A.F., Seely, A., Hall, R., Burns, K., Singal, R.K., Dodek, P., Bagshaw, S., Sibbald, R., & Downar, J. (2016) The impact of the Rasouli decision: A survey of Canadian intensivists. Journal of Medical Ethics, 42(3), 180–85. College of Nurses of Ontario (CNO). (2017). Practice guideline: Consent. http://www. cno.org/globalassets/docs/policy/41020_consent.pdf College of Nurses of Ontario (CNO). (2019). Practice standard: Ethics. http://www. cno.org/globalassets/docs/prac/41034_ethics.pdf College of Physicians and Surgeons of Ontario (CPSO). (2019). Planning for and providing quality end-of-life care. https://www.cpso.on.ca/Physicians/Policies-Guidance/ Policies/Planning-for-and-Providing-Quality-End-of-Life-Car Corring, D., O’Reilly, R., & Sommerdyk, C. (2017). A systematic review of the views and experiences of subjects of community treatment orders. International Journal of Law and Psychiatry, 52, 74–80. Corring, D., O’Reilly, R.L., Sommerdyk, C., Russell, E. (2018). What clinicians say about the experience of working with individuals on community treatment orders. Psychiatric Services, 69(7), 791–96. https://doi.org/10.1176/appi.ps.201700492 Coward, H., & Ratanakul, P. (Eds.). (1999). A cross-cultural dialogue on health care ethics. Wilfrid Laurier University Press. Cuthbertson v. Rasouli, SCC 53 (CanLII) (2013).

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Doane, G.H., & Varcoe, C. (2005). Family nursing as relational inquiry: Developing health promoting practice. Lippincott, Williams, & Wilkins. Downar, J., Sibbald, R.W., Bailey, T.M., & Kavanagh, B.P. (2014). Withholding and withdrawing treatment in Canada: Implications of the Supreme Court of Canada’s decision in the Rasouli case. CMAJ, 186(16), E622–E626. Downar, J., Warner, M., & Sibbald, R. (2016). Mandate to obtain consent for withholding nonbeneficial cardiopulmonary resuscitation is misguided. CMAJ, 188(4), 245–46. Downie, J., & Llewellyn, J.J. (Eds.). (2012). Being relational: Reflections on relational theory and health law. University of British Columbia Press. Feinberg, J. (1971). Legal paternalism. Canadian Journal of Philosophy, 1(1), 105–24. Fleming v. Reid, 82 D.L.R. (4th) 289 (Ont. C.A.) at 316 (1991). Hanssen, I. 2004. An intercultural nursing perspective on autonomy. Nursing Ethics, 11(1), 28–41. Hawryluck, L., Baker, A.J., Faith, A., & Singh, J.M. (2014). The future of decision-making in critical care after Cuthbertson v. Rasouli. Canadian Journal of Anesthesia, 61(10), 951–58. Heath Care Consent Act (HCCA), S.O. 1996, c. 2, Sched. A (1996). Health Care (Consent) and Care Facility (Admission) Act, British Columbia (1996 & current to June 12, 2019). The Health Care Directives and Substitute Health Care Decision Makers Act. (2017). Saskatchewan. Health Information Act of the Government of the Northwest Territories. (2016). Government of the Northwest Territories. Hunter, L. (2005). From the local to the global: Bioethics and the concept of culture. Journal of Medical Philosophy, 30(3) ( June), 305–20. Kallert, T.W., Mezzich, J.E., & Monahan, J. (Eds.). (2011). Coercive treatment in psychiatry: Clinical, legal and ethical aspects. John Wiley & Sons. Mackenzie, C., & Stoljar, N. (2000). Autonomy refigured. In C. Mackenzie and N. Stoljar (Eds.), Relational autonomy: Feminist perspectives on autonomy, agency and the social self (pp. 3–31). Oxford University Press. Makin K. (2003, May 3). Brilliant man in asylum fights doctors to top court. The Globe and Mail. Menendez, J.B. (2013). Informed consent: Essential legal and ethical principles. JONAS Healthcare Law, Ethics and Regulation, 15(4),140–44; quiz 145–46. Mill, J.S. (1859/1975). On liberty. In D. Spitz (Ed.), On liberty: A Norton critical edition (pp. 1–106). W.W. Norton.

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Miller, B.L. (1981). Autonomy and the refusal of lifesaving treatment. Hastings Center Report, 11(4), 22–28. Nova Scotia College of Nursing. (2019). Welcome to NSCN. https://nscn.ca/ Nunnelley, S. (2015). Coercive care in civil mental health law: An autonomy lens. Comparative program on health and society. Munk School of Global Affairs at Trinity College. Patient Restraints Minimization Act, S.O. 2001, c 16, Bill 85 (2001). http://canlii. ca/t/30r The Patient Safety Education Program: Canada. (2013–2017). Module 13d: Mental health care: Seclusion and restraint: When all else fails. Patient Safety Education Canada & the Ontario Hospital Association. Pellegrino, E.D., & Thomasma, D.C. (1988). For the patient’s good: The restoration of beneficence in health care. Oxford University Press. Permissible medical experiments. (1949). In Trials of war criminals before the Nuremberg Military Tribunals under Control Council Law no. 10 (Vol. 2, pp. 181–82). US Government Printing Office. https://www.loc.gov/rr/frd/Military_Law/pdf/ NT_war-criminals_Vol-II.pdf Registered Nurses’ Association of Ontario (RNAO ). (2012). Promoting safety: Alternative approaches to the use of restraints. Rodney, P., Kadyschuk, S., Liaschenko, J., Brown, H., Musto, L., & Snyder, N. (2013). Moral agency: Relational connections and support. In J.L. Storch, P. Rodney, & R. Starzomski (Eds.), Toward a moral horizon: Nursing ethics for leadership and practice (2nd ed., pp. 160–87). Pearson-Prentice Hall. Schacter, D., Kleinman, I., & Harvey, W. (2005). Informed consent and adolescents. Canadian Journal of Psychiatry, 50(9), 534–40. Schafer, A. (2013, October 18). Right-to-die ruling: Win for families, loss for common decency. The Globe and Mail. Sherwin, S. (1998). A relational approach to autonomy in health care. In S. Sherwin & the Feminist Health Care Ethics Research Network (Eds.), The politics of women’s health (pp. 19–47). Temple University Press. Sherwin, S. (2008). Whither bioethics? How feminism can help reorient bioethics. International Journal of Feminist Approaches to Bioethics, 1(1), 7–27. Shuster, E. (1997). Fifty years later: the significance of the Nuremberg Code. New England Journal of Medicine, 337(20), 1436–40. Sibbald, R., Chidwick, P., & Hawryluck, L. (2014). Standard of care and resource implications of the Cuthbertson v. Rasouli ruling. CMAJ, 186(5), 327–28.

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Spivakovsky, C., Seear, K., & Carter, A. (Eds.). (2018). Critical perspectives on coercive interventions: Law, medicine and society. Routledge. Starson v. Swayze, 1 S.C.R. (2003). Storch, J.L. (1988). Ethics in nursing practice. In A.J. Baumgart & J. Larsen (Eds.), Canadian nursing faces the future: Development and change (pp. 211–21). C.V. Mosby. Vergunst, F., Rugkåsa, J., Koshiaris, C., Simon, J., & Burns, T. (2017). Community treatment orders and social outcomes for patients with psychosis: A 48-month follow-up study. Social Psychiatry and Psychiatric Epidemiology, 52(11), 1375–84. Wawrzyniak v. Livingstone, ONSC 4900 (CanLII) (2019). Wildeman, S. (2012). Insight revisited: Relationality and psychiatric treatment decision-making capacity. In J. Downie & J.J. Llewellyn (Eds.), Being relational: Reflections on relational theory and health law (pp. 255–86). University of British Columbia Press.

CH A P T E R 4

TRUTHTELLING AND TRUTHFULNESS The truth is rarely pure, and never simple. —Oscar Wilde

The paternalism that for so long has been entrenched in the health professions has been especially evident in matters of truth-telling and truthfulness. Changed attitudes toward death and dying and increased emphasis on personal autonomy and informed consent called such paternalism into question. The general presumption today is in favour of openness and the disclosure of information to patients. How to tell the truth is as important as what to tell. Obfuscation, talking in jargon, ambiguity, and communicating in mixed signals may be impediments to the honest communication of the truth. Patients’ values in connection with truth-telling are to some extent culturally variable, particularly in the context of breaking bad news. Collaborative care delivered by multidisciplinary teams means that roles and responsibilities with regard to the provision of information to patients may sometimes overlap or be uncertain. Uncertainty or disagreement about these roles and responsibilities should be resolved in discussions among team members. Case studies in this chapter include: communication of a mental health diagnosis, withholding information from a patient whose family insists on this for cultural reasons, a request for bad news in an emergency situation, and disclosing and reporting a medication error.

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1. TRUTHFULNESS AND TRUTH-TELLING IN HEALTH CARE Health professionals possess general knowledge about the functioning of the body and the symptoms of, and treatments for, various conditions, as well as salient information and opinions about the health status of the patients in their care. The imbalance of knowledge and patient-specific information between health professionals and their patients can raise ethical issues, especially with respect to information related to diagnosis and prognosis, or that otherwise bears on a patient’s ability to make informed choices. Given that the practitioner possesses information of concern to the patient, what are the ethics of concealing and revealing this information? Under what circumstances, if any, is it justifiable to withhold information from or lie to a patient? Is withholding information less ethically problematic than outright lying? How important is being truthful as weighed against other values? In the past, the health professions expressed little concern in their ethical codes for being truthful with patients (Bok, 1978). While it was unacceptable for lawyers or accountants to deceive their clients, in medicine deception was widely practised and justified. To understand why, one must look at the traditional value system that shaped the health professions. Until the later part of the last century, the good of the patient was the overriding concern. In the hierarchy of values, truthfulness was assigned a subordinate place in relation to benefiting the patient and preventing harm. Decisions about what, when, and whether to tell patients the truth about their medical condition were based on what would be best for the patient’s own good. Health professionals subscribed to what Veatch (1976) referred to as a special sort of “utilitarianism,” in which the anticipated harms and benefits of being either truthful or untruthful are compared to determine which will result in the greatest net benefit. Since disclosure of the truth was often associated with harmful consequences such as anxiety and distress, truth-telling often lost out to the concern to do good for the patient (beneficence), or at least to do no harm (nonmaleficence). Thus a 1961 study found that 88 per cent of 219 physicians surveyed said that they did not as a rule inform their patients of a cancer diagnosis (Oken, 1961). When an almost identical study was done less than 20 years later, 98 per cent of 278 physicians surveyed said that it was their general policy to disclose this information (Novack et al., 1979). This indicates a profound attitudinal shift, which has continued to the present. For example, in a recent study of stroke patients, Renjo et al. (2017) found that truth-telling was the accepted norm.

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Several factors may account for the change in attitude and behaviour that has occurred. Being truthful with patients is less associated with harm than it used to be. Indeed, there is a greater awareness of the therapeutic benefits of information disclosure in general. Even from the perspective of the patient’s good as the primary concern, there is reason to be more truthful. Sisk et al. (2016) point out that “problematic issues such as a fear of talking about death ... might contribute to the carers’ strategy to hide truth to protect, aiming to protect both next of kin and themselves” (p. 108). Death and dying can still be a difficult topic to broach but there is much greater openness about the once taboo topic of death and dying. An even more important factor is that the perspective of beneficence is no longer accorded the primacy it once had in the health professions. The paternalistic style of practice has been superseded by a more co-operative approach that places greater emphasis on patient autonomy, patient education, and informed participation in health care decision-making (see Pullman & Hodgkinson, 2016). Beneficence—especially as associated with paternalism—has been devalued in proportion to the ascent of patient autonomy as a value.

2. ARGUMENTS FOR AND AGAINST TRUTHFULNESS IN HEALTH CARE Sociological and historical considerations aside, what arguments can be given for and against openness and truthful disclosure in the health care context? These will be considered below. The main arguments on either side of the issue depend on how one situates truthfulness in relation to other values, namely, beneficence, autonomy, and trust. 2.1. Truthfulness and Beneficence The main argument against truth-telling is that health professionals have a duty to prevent harm to patients, such as emotional distress, and telling the truth may cause harm. To the extent this is so, truth-telling is indeed at odds with beneficence (or nonmaleficence). The greater the harm foreseen, the more serious the conflict between the obligations. Argued in these terms, the issue depends on how one weighs these duties or values relative to each other.

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However, there is reason to doubt the factual basis of the worry that disclosure will result in harm, or, in balance, will result in greater harm than benefit (Avci, 2017). After all, both evasion and outright dishonesty can cause the patient considerable distress and may even prolong the adjustment process (Fallowfield et al., 2002). To what extent is the practitioner able to predict harm in advance with any accuracy? A blanket assumption that disclosure will prove harmful is dubious at best. Rosenberg et al. (2017) note that the belief that disclosure would be harmful gradually came to be “undermined as evidence suggested most patients (1) were already aware of their serious diagnosis; (2) imagined the worst in the absence of specific details; and (3) were denied both opportunities to make plans for the future as well as an open and honest environment to explore their fears and hopes” (p. 1114). In its review of the subject, the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1982) found that the fears of health professionals about the negative consequences of disclosure tend to be exaggerated: Despite all the anecdotes about patients who committed suicide, suffered heart attacks, or plunged into prolonged depression upon being told “bad news,” little documentation exists for claims that informing patients is more dangerous to their health than not informing them, particularly when the informing is done in a sensitive and tactful fashion. (p. 96)

The commission’s point about informing patients in a “sensitive and tactful fashion” is an important one. To the extent that disclosure may have harmful consequences, the harm can be minimized, if not avoided altogether, by the development of a thoughtful and sensitive bedside manner (Matzo et al., 2003; Rassin et al., 2006). Moreover, much can be said in support of the claim that the consequences of disclosure, rather than being harmful, or in addition to being harmful, may be beneficial. Bok (1978) writes: The damages associated with the disclosure of sad news or risks are rarer than physicians believe; and the benefits which result from being informed are more substantial, even measurably so. Pain is tolerated more easily, recovery from surgery is quicker, and cooperation with therapy is greatly improved. The attitude that “what you don’t know won’t hurt you”

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is proving unrealistic; it is what patients do not know but vaguely suspect that causes them corrosive worry. (p. 234)

Other benefits could be added to Bok’s list. Disclosure makes it possible for patients to express their feelings, and this alone may have therapeutic value. Knowing what is wrong and what to expect can remove needless fears and anxiety, and may enhance the patient’s ability to cope (Pratt & Wilkinson, 2003). As well, “truth-telling is a prerequisite for trusting relationships” (Pergert & Lutzen, 2012, p. 22) and in trusting relationships practitioners are able to learn patients’ stories and come to know their values, beliefs, and wishes. 2.2. Truthfulness and Autonomy While the main arguments supporting limited disclosure and deception are founded on beneficence (or nonmaleficence), those supporting greater openness and disclosure tend to focus on respect for autonomy and informed decision-making. For example, the College of Nurses of Ontario ([CNO], 2019a) practice standard on ethics notes that “client choice means self-determination” and that nurses are expected to respect clients even when their wishes are not the same as their own (p. 6). The Canadian Nurses Association ([CNA], 2017) notes that to support informed decision-making, nurses “provide persons receiving care with the information they need to make informed and autonomous decisions related to their health and wellbeing” (p. 11). Clients need relevant information in order to fully exercise their autonomy. Along these lines, arguments for openness and disclosure parallel those in support of informed consent. To promote informed decision-making, nurses “work to ensure that health information is given ... in an open, accurate, understandable and transparent manner” (CNA, 2017, p. 11). In being truthful, health professionals enable patients to make informed choices on the basis of the information presented. Conversely, lack of information, or false information, impedes the patient’s capacity to deliberate effectively and make open-eyed choices. A closely related point is that truthfulness promotes autonomy also by helping patients to maintain a sense of control over their lives. People who are dying, in particular, have an obvious interest in planning whatever time remains to them, and knowing the truth about their situation affords them the opportunity to do so (Fallowfield et al., 2002; Starzomski, 2009).

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Knowing about their condition or prognosis is more important to some patients than to others. Indeed, some patients do not want to know the truth about their condition, particularly when the medical problem is severe or fatal (Rassin et al., 2006). Telling patients the truth against their wishes may be not only harmful but would fail to respect their autonomy. The crucial question concerns what counts as evidence that the patient does not wish to be told the truth. A clear statement to this effect from the patient is one thing; an inference based on a generalization is another. It would not be sufficient simply to assume or project that the patient does not wish to know, especially as there is evidence that in general people do want to know the truth. Tuckett (2004) recommends that, rather than making assumptions about what should be disclosed or withheld, practitioners “ought to rely on therapeutic communication and ask patients and patients’ families what informational requirements are preferred” (p. 509). 2.3. Truthfulness and Trust Another reason in favour of truth-telling is its importance for the practitioner-patient relationship (Hodkinson, 2008; Pergert & Lutzen, 2012; Tuckett, 2004). The concept of trust plays a pivotal role here. Trust requires that the partners in the relationship relate to each other in a truthful manner. Rejno et al. (2017) argue that “truthfulness ... is the minimum required to maintain trust” (p. 102). Deception or the withholding of information would endanger this trust and jeopardize the relationship. The consequences of deceptive practices may extend beyond the particular relationship to jeopardize the practitioner-patient relationship more generally. If as a result of the publication of deceptive practices it came to be believed that such practices were common, people entering therapeutic relationships would become more uncertain that they were being told the truth and hence more distrustful. 2.4. Truthfulness and the Practitioner-Patient Knowledge Gap Arguments in support of deception or limited disclosure are sometimes based on the difference between health professionals and patients with respect to their ability to assess, understand, and interpret information. One argument is that the information in which health professionals trade is too difficult for lay people to understand. A related argument has it that health professionals

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are sometimes unable to tell patients the truth with regard to their exact conditions or prognoses because they themselves do not know this with certainty. Practitioners are often uncertain about the meaning and implications of the information available to them and reluctant to communicate information that may be misinterpreted or lead the patient to jump to unwarranted conclusions. The field of genetic counseling, which is fraught with uncertainty, is a special case in point (Brookes-Howell, 2006; Jenkins & Arribas-Ayllon, 2016). Being truthful with patients does not require that practitioners communicate in five minutes everything that they know but only what is relevant to the patient’s wishes, needs, and interests. It is important to distinguish between complete information and accurate information. The fact that our knowledge may be incomplete or uncertain does not exempt us from the duty to be open and accurate about what we do know. Truth-telling is not a single event but a process, or part of an ongoing dialogue (Tobin & Begley, 2008). The objective of such dialogue is not simply to impart information to patients but to help them to understand over time what the information means to them in their particular circumstances. If all the information available leaves the patient with an unconfirmed diagnosis, the uncertainty should be acknowledged and the patient assured that more definite information will be provided and discussed as available, perhaps in light of pending tests. To be sure, the communication of this knowledge will sometimes pose a challenge, but this is part of the professional role. To the extent that the practitioner feels incapable of communicating relevant information to the patient in an understandable way, he or she is deficient in a very important clinical skill and should seek to become more competent in communicating with lay people. Suggestions to enhance communication practices include physician-nurse teams meeting with oncology patients, along with interdisciplinary education about how to discuss prognosis and end-of-life needs to support nurses to provide care (McLennon et al., 2013). Efforts to be more collaborative with other health care providers when communicating in clinical practice can also be an impetus for enhanced communication with the recipients of care and their families. Although the knowledge gap between practitioners and patients is undeniable, the fact that such a gap exists is not a sufficient reason for being untruthful or deceitful. Because patients are unable to understand information as deeply or in as great detail as practitioners does not mean that they are unable to understand key facts. One way to address the knowledge gap is to ask patients if they want a detailed explanation or a summary with the

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main take-away messages. Additionally, asking patients to give their summary of the discussion can be a good way of validating whether the relevant information has been successfully communicated and understood. With the rise of the Internet, patients today can be much more knowledgeable about their conditions and treatments. Health literacy is an important asset that can be developed through education to “support more comprehensive options for the management of disease, enable the development of skills to foster confident interactions with health care providers, and the ability of patients to navigate or negotiate the health care system” (Nutbeam, 2008, p. 2077).

3. CULTIVATING GOOD JUDGMENT On balance, the arguments we have reviewed tend to support a general presumption in favour of openness and disclosure. The ethical consensus today is that patients have a right to know the truth, even if disclosure is likely to be harmful. Nurses are expected to provide information required to make health related decisions in an “open, accurate, understandable and transparent manner” (CNA, 2017, p. 11). However, the presumption in favour of truth-telling does not cancel out the need for judgment. One reason judgment is necessary is to determine whether or when an exception should be made to the general rule of truth-telling. Rejno et al. (2017) discuss instances in which caregivers prioritized patient best interests over truth-telling; on those occasions withholding of truth was seen as beneficial by not adding to a burden of sorrow. Avci (2017) suggests that in some instances social harms might outweigh disclosure, for example, discussing a case in which misattributed paternity was discovered during the medical preparation preceding a transplant. Upon considering the risks of severe and imminent threats related to marital infidelity, the physician decided in favour of integrity of life and survival over disclosure and withheld information. Delayed disclosure can be justified in terms of helping the patient cope with a diagnosis. Children who think their father has early cognitive impairment may ask the geriatric assessment team to delay giving their father this diagnosis until they can be with their father, to give him emotional support. A different issue that points to the unavoidable need for judgment concerns not whether to tell the truth, but rather how to tell or not tell it, and exactly what to tell or not tell. What is the truth and what does it mean to be

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truthful in the first place? As Sisk et al. (2016) point out, “though we can say that patients ‘ought to know,’ it is difficult to know exactly what they ought to know and how to best share this information” (p. 77). Often, the truth is equated with “the facts,” and telling or not telling the truth is reduced to being “accurate” or “inaccurate” in presenting patients with information about their medical condition. Such a framework is much too narrow. A factually true statement is not necessarily a truthful statement. A statement may be accurate as judged against the facts, but deceptive, as when a practitioner speaks in jargon knowing that the patient will not understand what is being said. Similarly, we can be truthful although stating something that is factually untrue, as when we are unknowingly in error. Considerations such as these illustrate a distinction between truth in an empirical or factual sense and truth in a moral sense, to which Bok (1978, p. 6) applies the term “truthfulness.” Truthfulness is not so much a matter of accuracy as it is of honesty. Thus Bok insists that the “moral question of whether you are lying is not settled by establishing the truth or falsity of what you say. In order to settle this question, we must know whether you intend your statement to mislead” (p. 6). The moral status of practices such as withholding information, equivocating, being ambiguous, communicating mixed signals, misleading, and outright lying can be ascertained only if we go beyond the factual accuracy of what is said to consider the context in which it is said. This context encompasses not only the intentions of the speaker, but also the wishes, interests, expectations, and cognitive competence of the listener. What are the listener’s interests in the matter? What or how much does the listener want to know? Under the circumstances, how is the listener likely to interpret what is said? What does the speaker intend the listener to understand or infer from what is said? What is literally said may be one thing; how it is likely or predictably to be interpreted in the context may be something altogether different. This difference between what is said and what will be understood or inferred can be exploited for the purpose of deception. Even without saying anything inaccurate, our statements (and silences) can have the deliberate effect of creating or confirming a false belief, allowing a false belief to go uncorrected, or otherwise keeping the truth concealed. We can deceive just as surely by telling the literal truth as by telling a literal lie. In what Veatch (1976) calls the “truthful lie,” health professionals superficially fulfill the duty to tell the truth by using medical jargon, knowing that the patient will be unable to decipher from what is said the truth the practitioner knows

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(p. 222). The language may be factually accurate but the communication is untruthful to the extent that its intended effect is not to reveal the truth but to conceal it from the patient. To be truthful—as opposed to merely uttering something that is true—is to communicate with the intent that, on the basis of our communication, the listener will understand what we ourselves know or believe to be true about some matter of concern. To be untruthful, on the other hand, is to intend as the effect of our communication that what we know or believe to be true is and remains concealed from the other. Lying, in which we say something we know to be untrue for the purpose of deceiving another, is but an extreme instance of a phenomenon that includes gestures, false clues, understatement, exaggeration, manipulation, the use of jargon, withholding information, evasion, and silence. For example, by withholding or omitting information we are untruthful to the extent that by remaining silent we are deliberately concealing something from the other. Assuming that as a rule one intends to be as truthful with patients as possible, other questions arise about how best to achieve this. Untruthfulness is not the only barrier to the communication of truth. A practitioner may say something false believing it to be true, and in so doing will be speaking truthfully or honestly. Nevertheless, the effect of the communication could be that the patient will not learn the truth. Certainly the intention to speak the truth is important, and patients are generally owed this much at least, but patients are entitled not just to honesty but also to reliable information. The practitioner’s commitment to the patient requires that efforts be made to ensure accuracy as well as honesty. Even if the truth is presented honestly and accurately, communication may still fall short of an important goal insofar as information is presented in a manner that is not understandable or relevant to the patient. The truth at issue in clinical situations may be very difficult for patients to understand, especially if their mental capacity is diminished or they are in the grip of powerful emotions. The truth is more than an impersonal body of facts and statistics, and must be tailored to the specific context or circumstances of the patient. An honest communication of the facts may not be enough, since the patient will be concerned to know what the facts mean. The statement “you probably have about six months to live” may be factually correct and at one level it is obvious enough what it means. However, it will have a different significance for different patients: For one it may be heard as a death sentence, for another as a prompt to begin getting his or her affairs in order.

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In order to ensure that the patient understands, practitioners need not only good intentions and a reliable knowledge base but also good judgment and good clinical skills in understanding and communicating with patients as the unique individuals that they are. Although some patients will be limited in their ability to understand by intelligence and education, and will be overwhelmed by too much detail, others will be very keen to understand and will appreciate being given as much information as possible. Especially if the truth amounts to “bad news,” various psychological factors such as denial or intellectualization may impede the patient’s ability to understand what is being said. 3.1. Communicating “ Bad News” The truth that is at issue in many clinical situations is of a sort that may be very painful and hard to bear. Although this does not constitute a reason to be untruthful with patients, it does mean that sensitivity, thoughtfulness, and good judgment must be exercised when communicating difficult truths or “bad news.” Of course, the commitment to communicate the truth does not mean that one must do so in a blunt or insensitive manner. As far as possible, one ought to communicate the truth in such a way as to preserve one’s duty to benefit and prevent harm to the patient. Since oncologist Robert Buckman (1992; 2005) produced his ground-breaking work, the question of how best to communicate bad news to patients has received much attention in the health professions (Keefe-Cooperman & BradyAmoon, 2013). As Bumb et al. (2017) note in their review of evidence-based models for breaking bad news, the SPIKES model (Setting, Perception, Invitation/Information, Knowledge, Empathy, and Summarize/Strategize) and the PEWTER model (Prepare, Evaluate, Warning, Telling, Emotional response, Regrouping preparation) are the most common ones discussed in the literature and agree on main points. Warnock (2014) points out that “traditionally, breaking bad news has been perceived as the moment when a doctor provides significant information about diagnosis, prognosis or treatment to patients and their families” (p. 51). This perception “restricts the scope of bad news to key moments in the medical pathway” (Warnock, 2014, p. 52). According to this depiction, nurses are relegated to a very limited role: assisting in and witnessing the physicians’ delivery and providing support to the patient afterwards.

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Warnock (2014) challenges this way of thinking about bad news as being too narrow, simplistic, and untrue to the experience of those receiving or providing information, particularly in how it focuses on the moment in which the physician delivers dramatic bad news, and narrows the scope of information that it classifies as bad news (p. 52). She notes that it “affords little consideration to the contributions of nurses and other members of the healthcare team who engage in an increasingly diverse range of breaking bad news activities” (Warnock, p. 52). She lists many ways that nurses play an important role in the understanding, questioning, and planning that unfolds after the meaning of a diagnosis or bad news is shared with a patient, including: “assessing the needs for further information of patients and relatives and recognizing their cues and prompts”; “explaining and discussing the information provided and its implications”; and “acting as an intermediary between patients, relatives and the healthcare team” (p. 54). Just about all patients can be expected to react negatively to news of a cancer diagnosis, a bleak prognosis, or the need for a risky treatment. However, bad news may be defined more broadly to include virtually any information that will be negatively received by patients. What counts as “bad news” is thus to some extent subjective and may vary from patient to patient. Therefore, a “wide range of information can be classified as bad news, including subjects that often lie within the remit of the wider multidisciplinary team” (Warnock, p. 52). It is evident that when bad news is more broadly defined nurses play a much greater role in the process of communicating bad news than when it is narrowly restricted to “key moments in the medical pathway.” Moreover, even with respect to traditional bad news scenarios concerning a grim diagnosis or prognosis, bad news communication is not time-limited to the moment when the information is first delivered. Nurses may also be involved in activities before this delivery, “anticipating and preparing the patient or relative so they know they are going to receive significant information” and afterwards, “clarifying the understanding, supporting decision making and helping patients and relatives adapt to the consequences of bad news” (Warnock, p. 52). Tobin and Begley (2008) helpfully explore the information and psychosocial needs of oncology patients from the standpoint of how they experience bad news. Recognizing that the information disclosure is not just a one-time event, they chronicle the changes in meaning and knowing that patients experienced throughout what they call the “bad news trajectory.” Thoughtfulness and careful preparation for breaking bad news—ensuring a private setting, choosing the right words and manner of putting things,

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and so forth—can make a significant difference in communicating bad news. Finding the right time to communicate requires judgment that comes with experience (Rejno et al., 2017). In a sense, the practitioner and patient could be viewed as “co-interpreters” of the truth. Ongoing dialogue within a therapeutic relationship (Hodkinson, 2008; Pergert & Lutzen, 2012) makes it possible for practitioners to tailor their communication to the specific wishes, interests, and capacities of the individual patient so that information, and bad news in particular, can be communicated not only truthfully, accurately, and understandably, but also in accordance with concern for the patient’s good. 3.2. Truth-Telling and Cultural Difference A further point to be raised in discussing the need for judgment at the clinical-ethical interface concerns the cultural variability of norms and expectations about truthfulness and truth-telling. Rosenberg et al. (2017) usefully review the literature on cultural difference regarding beliefs and attitudes to truth-telling. They reference several studies that “suggest immediate deference to individual patient autonomy is specific to Western cultures” and that “collusion (defined as a cultural practice in which family members request withholding information from the patient) is common in regions where families, rather than individual patients, are considered the central unit of decision making” (p. 1114). This can present issues for health professionals in Western societies when providing care to patients in the context of families who adhere to cultural traditions at odds or in tension with Western norms. How should health professionals respond to culturally based requests for “collusion” from families—such as to withhold a bad news diagnosis from a patient? There are of course good reasons to be respectful of cultural differences, not least of all because caring for patients in a holistic way means seeing them in the context of the network of relationships in which they exist, which includes family relationships and relatedness to their cultural values. However, respect for cultural traditions and recognition of the centrality of families in caring for individual patients does not mean that professionals must yield to family requests rooted in cultural traditions. Health professionals are not obliged to comply with family requests, culturally based or not, that are contrary to their professional values as are enshrined in the ethical code of their profession or to the laws and policies by which they are governed. Moreover, nurses and other health professionals may themselves belong to different

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cultures—and increasingly so. In some case, they may personally adhere to contrary values but nonetheless are bound to the professional values, laws, and policies by which they are governed. To be sure, respect means listening to and engaging with individual patients and their families with respect to the values they bring to the health decision-making context. Respectful dialogue is important and in many cases can resolve issues arising from cultural differences. However, in such dialogue nurses need to be aware of their own values, and steadfast as concerns the professional values to which they are committed. Other cautions are also in order. The main reason for sensitivity to cultural values pertaining to truth-telling stems from the importance of tailoring one’s communication as much as possible to the specific beliefs, desires, and values of the patient with respect to truth-telling, particularly as concerns “bad news.” One size does not fit all. Some patients will want very detailed information; some will not. Some will want their family members to be involved with them in decision-making—or even to make decisions on their behalf—and some will not. Beliefs, desires, and values about such matters are culturally variable to some extent but responsiveness to cultural values should not be based on broad generalizations about the patient’s (or family’s) beliefs, desires, or values. Generalizations—or stereotypes—about a given culture may be false or based on insufficient evidence. Moreover, that someone belongs to a culture in which certain beliefs, desires, and values with respect to truth-telling are indeed widespread does not of course mean that they hold or adhere to them. Dialogue is essential and in each specific case values need to be carefully elicited, and not assumed. In such dialogue, health professionals should be alert not only to the possibility that cultural norms that apply to some or even most members of a given culture do not necessarily apply to all, but also to the possibility that the patient may not share the same beliefs, desires, and values about truth and information sharing.

4. TRUTHFULNESS AND THE CIRCLE OF CARE Although issues of truth-telling arise for all health care professionals, in nursing these issues can be further complicated because the role of nurses in the health care system may place them between the physician and the patient. In hospital settings, the nurse’s patient is also a patient of one or more physicians.

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Ideally, the roles of physicians and nurses will be complementary, but in some instances they may conflict. Information disclosure is one issue around which conflict often arises. Although the nurse and the physician alike may possess or have access to information of concern to the patient, the disclosure of information about diagnosis is typically the prerogative of the physician. In consequence, nurses can become caught in difficult predicaments. The nurse may feel obliged to communicate certain information to the patient, yet be forbidden to do so, or able to do so only at the price of conflict with the physician. The fact that in many situations nursing work is performed in continuous proximity with patients makes the predicament more acute. Patients and their loved ones often direct their questions to nurses. How should nurses respond when they possess the information necessary to answer questions accurately and appropriately but are bound not to because such disclosures are deemed to be the exclusive prerogative of the physician? The CNO (2015) notes that, according to the Regulated Health Professions Act, “[c]ommunicating a diagnosis to a client or their representative is a controlled act that is not authorized to RNs or RPNs.” However, “they can discuss a client’s diagnosis with him or her, after the client has received the diagnosis from practitioners who are authorized to communicate them.” They can also “communicate test results, as well as health conditions (such as pregnancy), which are neither diseases nor disorders” and “can communicate findings from an assessment to clients.” A nurse in a predicament with a client who is asking for information about a diagnosis that has not yet been presented to them “can recommend, when appropriate, that clients follow up with practitioners who are authorized to provide definitive diagnoses to clients, such as physicians or NPs.” Nurse practitioners’ scope of practice includes giving a diagnosis. To be sure, there are grey areas in which there may be uncertainty or even disagreement about the respective roles of nurses, physicians, and other health care providers related to the provision of information to patients. In deciding what is appropriate in a given situation, it is prudent for nurses to consider the professional and legal implications of communication that may be perceived as being beyond their scope of practice and to be aware of any institutional policies that bear on this. In the context of team-based care, open and frank discussion among team members about information disclosure to patients and

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their families can help to prevent situations where nurses feel conflicted about what should be disclosed, by whom, and under what circumstances. Changes with respect to the interprofessional dynamics of truth-telling can be seen as part of a larger shift in the delivery of health care that has been occurring. With the move to collaborative and interprofessional care, the model of care that foregrounded the doctor-patient relationship and put all other health professionals on the periphery has given way to a “circle of care” model of collaborative and shared decision-making and information sharing. Nurses and other health professionals in the “circle of care” have greater roles and responsibilities in connection with the provision of information to patients. The ability of patients to access their own information, which is recognized as a right in recent health information legislation in most jurisdictions, is also changing the dynamics of information sharing. Patients have access to their electronic medical records. They may have learned diagnostic and other relevant information before this has been provided to them by a physician or nurse practitioner. This change in the order of receiving medical information has an effect on the role of the clinical team, including nurses, nurse practitioners, and physicians. They become less the bearers of information than they do educators and counsellors working together with the patient. Dilemmas about what information to share with a patient and who may communicate what information arise less frequently in a context in which patients themselves have access to information about themselves as a matter of right.

5. CONCLUSION Issues of truthfulness and disclosure are among the most difficult and delicate ethical issues for health professionals. Because of changing values, health professionals are expected and obliged to be more open and truthful in communicating with patients than they were in the past. In the context of collaborative care, different members of multidisciplinary teams have different roles and responsibilities as concerns the provision of information to patients. To the extent there is uncertainty or conflict about respective roles, discussion among members of the team is needed. The cases we will examine below illustrate some of the challenges that the commitment to truth-telling and truthfulness presents for health professionals, and especially for nurses. In assessing and evaluating one’s options in light of

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this commitment, contextual factors are crucial. In matters of truthfulness and truth-telling, it is especially important that ethical sensitivity be backed up by good clinical and interpersonal skills.

CASE STUDIES CASE 1: Issue Concerning Communication of a Mental Health Diagnosis Truth-telling supports autonomy (Pergert & Lutzen, 2012; Starzomski, 2009), and it also conveys respect to the patient, both of which are important to the therapeutic relationship and to care. Pergert and Lutzen (2012) emphasize the complexity of truth-telling, which involves the reason for disclosure, the nature of the facts disclosed and the manner in which the information is conveyed. The meaning of a diagnosis may vary from person to person. As Gold (2004) puts it, “the needs of each person must be evaluated individually because illness is, in the first instance, a subjective experience, influenced by cultural, personal and religious beliefs and traditions” (p. 579). Nurses who practice in mental health settings know that the populations they serve are especially vulnerable. Diminished health status and some treatment interventions can contribute to a diminished cognitive capacity. Cognitive and affective adjustment to living with a persistent condition that requires careful attention to lifestyle and health behaviours can be overwhelming. Learning about and coming to terms with a persistent mental health condition takes time and can be emotionally taxing. Under trying circumstances, patients may be expected to consider treatment decisions or to accommodate to those made by a substitute decision-maker. These situations can be challenging for patients, their families, and the professionals who work with them. The following case illustrates such a challenge experienced by nurses and their colleagues concerning the disclosure of a diagnosis of mental illness. Paul Thompson, 17 years old, presents himself at the emergency department. He is with a friend who says they have just come from a party. The friend reports that some people at the party had drugs and he knows that

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Paul has had both cocaine and crystal methamphetamine. Paul also had these drugs the day before with another friend and has used marijuana almost daily in the last few months. Paul presents with disorganized speech and some disorientation, and says that two groups of people he just passed on the street know who he is and are “out to get him.” He says that if they come near him he will kill them before they kill him. Paul’s parents are away on vacation and are expected to return home in two days. The emergency team agrees that Paul should be admitted because of the imminent risk of harm to others and to determine whether he is experiencing a drug-induced psychosis or symptoms of a psychotic disorder. As Paul is found to be incapable to consent to treatment, his parents, reached by telephone, agree to the plan of care and to treatment. On their return from vacation Paul’s parents visit him in hospital and meet with the treatment team. Paul is now more organized in his thoughts and fully oriented, but his paranoia persists and he is not attending to his self-care. He also spends most of his time in his room. Paul’s parents provide collateral information. His grades at school have recently deteriorated and he tends to spend more time in his room. His parents were surprised that he actually went to a party with his friend. They report that Paul has an older sister who was diagnosed with schizophrenia five years earlier. For reasons of not following her medication regimen, among others, she now lives in a shelter and has sporadic contact with her family. He also has an aunt who has had multiple hospitalizations for treatment of refractory schizoaffective disorder. Recently, she spent nine months in a unit of the local mental health facility, showing little improvement during that time. The team tells Paul’s parents that they believe Paul may have paranoid schizophrenia. As the week progresses it becomes increasingly clear to the team that Paul has a psychotic disorder; his parents’ early suspicions that he has paranoid schizophrenia are confirmed. What do the caregivers tell Paul? Granted he has the right to know his diagnosis, but is it safe to provide him with this information at this time? He has already begun to ask the nurses whether he is “crazy like everyone else in here.” He asks, “Will I be in and out of hospital, like my aunt and sister? If I will be like them, I do not want to live. My aunt’s life is a tragedy. She looks like she is drugged, lives in a bad rooming house, and is poor.” He adds that his sister now lives in a shelter and he has heard that she is often back in hospital. Paul says that if he has the same illness as either his aunt or sister, he will kill himself. His plan is to jump off a bridge near his house.

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The nurses have told him that they know things are difficult for him right now, but that it will take a little time to be certain about what is going on. They know from experience that timing is important and that especially with younger adults it is better to wait until they are in a stable condition before telling them the diagnosis. When Paul is better able to understand his diagnosis, treatment options, and prognosis he will begin to appreciate that he can make choices about how he will live his life with a persistent mental illness. During visits, his parents see that he is experiencing the same difficulties that his aunt did at the onset of her illness. They take Paul’s talk about suicide seriously, as do his caregivers. His aunt made a serious suicide attempt when she had her first “break” and that was when she was hospitalized with the same illness. Paul’s status is changed to involuntary because of the serious threat to his safety.

Case 1: Commentary Although it is within a physician’s or nurse practitioner’s scope of practice to disclose a medical diagnosis, the decision is often discussed among the treatment team and input is sought from the nurses and allied health professionals who work closely with the patient. Nurses care for Paul daily and need to respond to his questions. What options do they and the health team have for responding to Paul? One option would be to be vague and disclose very little in response to Paul’s queries. For example, they could take a “what-if ” approach and talk to Paul hypothetically about the diagnosis he fears. Or they could take a “delayed disclosure” approach, try to “buy time” by telling him that it is too early to know for certain if he has schizophrenia, and use the occasion to discuss options with him if this turned out to be the case. However, the omission of relevant information is not fully truthful, and arguably is deceptive. A study of nurses who used deception or lying in their practice (Tuckett, 1998) reported that some participants distinguished between the two. They saw lying or bending the truth as different from what they described as stepping back from the truth; in their view, lying is spoken, thus, not disclosing or not fully disclosing is not lying. The justification nurses gave for lying or not disclosing was to benefit or improve the patient’s well-being or to avoid harm. One example was not telling a patient with Alzheimer’s

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disease the truth when the patient asked about a partner who had died many years earlier. The justification was that, although the patient would not recall the answer a few minutes later, at the time telling the truth about the partner’s death would cause the patient grief. In Paul’s case, not being fully truthful may not be sufficient to quell his fears and itself carries risks. Patients today are sophisticated consumers. Using the Internet or with the help of visitors Paul may be able to acquire information that would indicate he likely has schizophrenia. Learning his diagnosis this way would provide him with little immediate support and could put him at even greater risk of harming himself than if he were told directly. Additionally, his trust in his nurses would be undermined if he learned they were withholding information from or lying to him (Nyquist Potter, 2008). It would be understandable if he became angry and did not want to communicate with the team. They would lose the opportunity to help him understand his situation and learn about treatment options and available resources. Continuing care is based on trusting those who provide that care, and this would be a very poor start for Paul’s relationship with his mental health team. After discussing the issue amongst themselves, his nurses agreed at a team meeting that the best approach would be sensitive disclosure in the context of the therapeutic relationship already developed with him based on “active listening, trust, respect, genuineness, empathy and responding to patient concerns” (Registered Nurses’ Association of Ontario [RNAO], 2002, p. 15). One nurse mentioned the CNA Code of Ethics for Registered Nurses (2017) injunction that nurses should recognize the potential vulnerability of their patients and not “exploit their trust and dependency in a way that could threaten the quality of the therapeutic relationship” (p. 13). The nurse argued that if a beginning relationship is laced with deception or outright lies, it is not a good dynamic for working with someone over time. In addition to being dishonest, not telling him the truth would violate the trust upon which the therapeutic relationship is based. The team accepted that Paul’s health information—such as his diagnosis, possible treatments, and resources to support recovery—belonged to Paul. The team spent some time discussing how best to approach the truth-telling issue in the context of an overall plan of care based on relationships they had established with Paul and his parents. His condition had been made worse by his use of street drugs. Recovery would require not just finding the right medication for him and his continuing to take it, but also learning to cope and

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manage his stresses, and avoiding street drugs. Recognizing that his parents could play a crucial role in Paul’s recovery and successful return to school, a meeting was set with the parents to learn their perspective and to discuss continuing support. As the RNAO Best Practice Guideline: Supporting and Strengthening Families (2006) points out, “partnerships with families are built on mutual trust, honesty and collaboration” (p. 21). The team decided that the psychiatrist and one of the nurses would explain to Paul gently but honestly his health problem and treatment options. To be sure, the team recognized that a truthful approach carried the risk of suicide. However, that risk would exist no matter which approach they took. Moreover, they believed that by sensitively providing information and treatment options they could minimize the risk of suicide. Depending on his reaction, he could be cared for as an involuntary patient and placed on continuous observation as necessary. Truth-telling is more that sharing facts, since the recipient “interprets a meaning embedded in this information” (Pergert & Lutzen, 2012, p. 22). In Paul’s situation the meaning of a diagnosis for him was at the crux of the team’s concern. Not all mental health patients who have been told their diagnosis actually agree with or accept it. Some indicate that they refuse to accept such a label, and others simply refuse to acknowledge that the condition described has anything to do with them. Yet many in this group continue to take medication and see a professional care provider on a regular basis. The plan and hope for Paul going forward is that, with adequate information and support, he will come to see that his condition is manageable and that rather than this leading to regular institutionalization or living on the street, it will be possible for him to lead a full and meaningful life.

Case 1: Questions 1. How would a deontologist and act and rule utilitarianism analyze the issue of truth-telling in this case? 2. With reference to Paul’s case, discuss the difference between lying to Paul, for example saying he has a bad virus, and withholding information when he asks why he is staying in hospital. Do you believe that the difference is morally significant?

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3. One reason truth-telling is important is because it helps to foster a trusting therapeutic relationship. What other reasons can you think of why truth-telling is important? 4. Paul can register for a secure and confidential online system like My Chart and read his personal health record. Imagine that the nurses and physicians debate whether his access should be blocked. What ethical reasons can be given for blocking or allowing access? 5. Suppose that the disclosure of his diagnosis was delayed until supports to help him manage, such as his caregivers and family, could be arranged. When Paul learns his diagnosis, Paul complains to them that they were paternalistic and treated him like a child. How would you respond to Paul? CASE 2: Cultural Values of Family Opposed to Informing Patient of Bad News Diagnosis Western society normally assumes a practice of full disclosure. Ethical codes, standards, and consent legislation support or require telling patients the truth to enable them to make informed decisions about their care. In this context, the truth refers to the health information known by the clinical team, such as diagnosis, options, and prognosis. Privacy legislation reinforces the protection of confidential information, and health care professionals are custodians of that information. Ultimately, the patient should control who knows what and when. In Western society the focus of decision-making is usually on the individual, not the family or the community. Families, and the relationship between patients and their families, can vary a great deal within a given cultural group, and especially between different cultural groups. Different cultural communities may hold different values relevant to truth-telling, to patient care, and to involvement of families in this care. Some ethnic groups value patient independence and autonomy above all, while others give greater value to interdependence, relationships, and a network of obligations (Candib, 2002; Kazdaglis et al., 2010). Surveys of cultures regarding preferences for being informed about a diagnosis found that in Western populations 83 to 99 per cent of respondents would like to be informed, compared with 24 to 74 per cent of non-Western populations (Gold, 2004). While these figures vary widely from culture to culture, it

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cannot be assumed that even the preferences of people of the same culture will be identical (Gold, 2004). Attending to families’ values and responding to specific requests made to the team constitutes part of the work of health care providers. This work requires careful and thoughtful responses to these requests. Mrs. Taneka, aged 65, lives with her husband and three grown children. She came to Canada ten years ago. She knows a little English. Her family describes her as a “ traditional Japanese elderly lady.” For the past few months she has been excitedly helping to arrange her son’s wedding but lately has been feeling extremely weak and tired. Her family takes her for a medical assessment. When a doctor tells her family privately that she has a metastasized cancer and possibly only a short time to live, her family insists that she not be told about the diagnosis. They do not want her to be upset, especially with the wedding date drawing near. Also, they explain that in their culture it is an accepted practice for a person not to be told that he or she has a terminal illness. They believe that given this knowledge the person’s situation will deteriorate and there will be increased suffering for no purpose. Some of the nurses who have provided care for Mrs. Taneka believe that she should be told about her diagnosis and prognosis. Their reasoning is that she has a right to know about her health condition. Second, they think that now is the right time for telling her. At her son’s wedding she will come into contact with many family members and friends whom she has not seen for a long time and who live some distance away. Since the wedding will likely be the last occasion for her to see these friends and relatives, she may want to find the opportunity to have conversations or connect with them in some way that would be especially meaningful to her. Other nurses argue that the family’s wishes should be respected based on the accepted pattern of decision-making about health matters in this and other cultures. They also believe that the bad news should not be allowed to interfere with Mrs. Taneka’s and the family’s enjoyment of the son’s upcoming wedding.

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Case 2: Commentary To work with patients in a way that is respectful and reflects fidelity in the therapeutic relationship involves putting individual patients at the centre in terms of their needs and wishes, as they see them. The nurse-patient relationship is one of unequal power. The patient, no matter the age, education, or communication skills, is vulnerable because of an altered health state and dependency on nurses and the clinical team for information. Nurses and their colleagues must be aware of and sensitive to the power imbalance. Patients expect that they can trust their nurses to work for their best interests, which includes telling them what they need to know to make informed decisions. The truth-telling issues in this case are complicated by two factors: 1) The patient’s family is requesting that the patient not be told the truth; and 2) the patient and her family belong to a cultural tradition with attitudes to truth-telling and to the involvement of family members in decision-making that are at odds with an individual-based, patient-centred understanding of the therapeutic relationship. According to prevailing values and norms in Canadian health care, competent patients are the ultimate decision-makers about the care they are offered and should be provided information pertinent to their care. The input of family members is valued by and valuable to the health care team, but in the final analysis it is the interests and values of the patient, and not the family, that are at the centre. This is especially important to keep in mind in instances where the views and interests of the patient appear to be at odds with those of the family. In this case, it may be that Mrs. Taneka shares the same cultural beliefs as her family, and that their wish that she not be told the truth is in line with her own interests and values. However, based on the case description we do not know whether this is so. The RNAO Best Practice Guideline, Embracing Cultural Diversity in Healthcare (2007), recommends ways in which individual nurses can reflect about their own sensitivity to patient and family needs as related to culture, conflicts they might have regarding these matters, and their capacity to deal with these issues. The guideline encourages nurses to “acquire knowledge of the range of cultural norms, beliefs and values, relevant to patients and colleagues as a starting point to foster understanding—and further inquiry” (p. 31). This means acquiring some measure of cultural competence in order to provide appropriate care for patients belonging to various traditions and

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cultural communities. Some nurses, influenced by critiques of the Eurocentric medical model that permeates Western health care, frame their approaches to caring for patients by being mindful of the prejudices embedded in this model and the elements of power and control (McGibbon et al., 2014; Puzan, 2003). To provide ethical and compassionate care for Mrs. Taneka her nurses should become aware of, and take into account, any cultural beliefs she may have relevant to the care they are providing and how they approach her. They can learn from her family and other resources about Japanese traditions, although they should not assume these latter would necessarily be relevant here. Mrs. Taneka’s family has referred to her as a “traditional Japanese elderly lady.” Japanese culture is commonly understood to be family-oriented (Woo, 1999). Family members are normally involved in decisions about health information and decision-making. A study of Japanese elders reported that Japanese-Americans prefer to make end-of-life decisions themselves, whereas those living in Japan relied more on physicians and family members (Matsui et al., 2008). Only 14 per cent of Japanese elders living in Japan had discussed terminal care, in contrast with 47.7 per cent of Japanese elders living in the USA. Matsui et al. (2008) attributed this to the Japanese norm of “respect for the authority of the physician” and the desire “to keep patients from ‘losing hope’” (p. 172). What then should Mrs. Taneka be told, or not told? The nurses who favour telling her the diagnosis and prognosis have given two main reasons for doing so. One is that knowing the truth will enable her to make better use of her remaining time, considering the opportunity her son’s approaching wedding presents for her to see friends and relatives, perhaps for the last time. This is a beneficence argument and it is noteworthy that nurses who favour not telling Mrs. Taneka appear to have a contrary view on this very point: They think it will be better for her, and the wedding will be more enjoyable, if she does not know. The second and more compelling reason given in favour of telling the truth is based on the view that health information belongs to patients and they have a right to know the truth. In health care, this right is typically derived from autonomy. However, although autonomy and truth-telling tend to go hand in hand, they do not always. Autonomy surely encompasses the right to know the truth. However, in the health care context at least it also encompasses the right not to know the truth. If Mrs. Taneka did not wish to exercise the right to know the truth—if she actually preferred not to know the truth—telling her the truth about her condition would not be respectful of her autonomy.

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A patient’s understanding of his or her health situation can be more or less explicit. Japanese nurses, in a study of American and Japanese nurses, noted that even when patients have not been given information about their diagnosis and prognosis they are often aware of what is truly happening or have a sense that their condition is terminal (Wros et al., 2004). Some patients might not want to hear the truth that they implicitly understand put into words. Sensitive to these sorts of subtleties and respectful of the patient’s wishes, health professionals often communicate to patients about their condition and situation without being explicit. Expert clinicians often give information to patients indirectly, “using metaphors or non-verbal messages, without breaking cultural rules of communication” (Wros et al., 2004, p. 137). Nurses are well positioned to pick up cues from patients as concerns their preferences in matters of truth-telling and should be vigilant regarding these cues. Ideally, the nurses would be able to get a read of Mrs. Taneka’s wishes through their interactions with her but language appears to be a barrier. However, as indicated above, there is reason to suppose that, given the generic information we know about her cultural background, her family members are in a good position, and indeed better positioned than the nurses, to know what her wishes are with respect to family involvement and knowing the truth about her condition. Mrs. Taneka may have assented to her family providing direction in her care—an approach that does not follow the usual Western practice of obtaining explicit, informed consent. However, if the health team decides to follow the family’s wishes in this instance, this need not be (and arguably should not be) for the reason given by some of the nurses who say that “family’s wishes should be respected based on the accepted pattern of decision-making about health matters in this and other cultures.” The CNA Code of Ethics (2017) is helpful on this point: “Nurses recognize that capable persons receiving care may place a different weight on individualism and may choose to defer to cultural, family expectations or community values in decision making” (p. 11). The key thing to note in interpreting this statement is that, according to the CNA, even for patients for whom individualism has lesser weight relative to “cultural, family expectations or community values,” the individual patient is nonetheless at the center of decision-making insofar as the individual patient chooses “to defer.” A choice to defer is a choice all the same. Along these lines, it is not the family’s wishes or cultural beliefs that need to be respected in Mrs. Taneka’s case but rather her wishes and her cultural beliefs. In this instance what the family wishes and

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believes may be a reliable guide to Mrs. Taneka’s wishes and beliefs but they are not a substitute. If the team concludes that Mrs. Taneka in effect chooses to defer to her family at this time, and if at some later time she indicates that she wants to be informed, or that she wants her family to have less involvement, the approach to information-sharing would have to be reassessed. They would need to meet with the family and explain that in their view Mrs. Taneka now wants and needs to know. The advice and cooperation of the family should then be sought as concerns how to approach telling her. To provide appropriate and respectful care to Mrs. Taneka the nurses will need to employ excellent skills of communication and assessment. There is no “one size fits all” rule that guides every approach to truth-telling. Instead, what might work best is a “case-by-case clinical judgment based on a relationship and thoughtful understanding of the context” (Wros et al., 2004). When different and sometimes conflicting cultural norms are in play, nurses need to be alert not just to the values of their patients and their families but also to their own personal and professional values.

Case 2: Questions 1. Present your recommendations to Mrs. Taneka’s health care team about following her family’s request to withhold information. Provide a rationale for your position, including reference to cultural values along with the ethical principle(s) that inform your view. 2. If Mrs. Taneka makes it clear (i.e., through a professional translator) that she wants to know what is happening, would you tell her family of this request? What process would you recommend for giving Mrs. Taneka the information she wants? To come to an understanding of how difficult these discussions about truth-telling can be for nurses and families, you might try to role-play these scenes in class. 3. Suppose Mrs. Taneka were told that she has stage four lung cancer (lung cancer is staged one to four; stage four being the most advanced). In conversation with one of the nurses shortly after being told, she tells the nurse: “Stage four lung cancer: That is not so bad. At least I do not have stage ten, thank goodness.” How should the nurse respond?

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4. Nurses come from many cultures and backgrounds. Consider your cultural and personal values about truth-telling. Can you imagine a situation in which you would want to withhold news of terminal illness from a family member? Why or why not? 5. Based on cultural considerations, discuss situations in which caregivers could dispute a family’s request for the patient to be protected from bad news. CASE 3: Patient Request for Bad News Information in Trauma Centre Nurses in trauma centres face distinct ethical challenges. Decisions need to be made quickly with the best information available—and that information is often insufficient. Patients are often critically ill and the team may be struggling to keep them alive. Their emergent condition may change abruptly for the worse; different treatments may have to be tried with very little time for discussion. Often, patients are unconscious, or their capacity to consider options or make decisions is diminished due to trauma. Family and friends may not be available to give consent. Police officers may want to conduct an investigation. Urgent surgery may be required. In emergency situations, and particularly when patients are fighting for their lives, the guiding norms or principles with respect to autonomy and truth-telling that apply in non-emergency situations may not apply, or may be weighted differently. Autonomy and truth-telling take a back seat to beneficence or nonmaleficence. The focus of the health team is on the patient’s health condition and trying to secure the best health outcome possible. This case explores the issue of truth-telling in an emergency situation in which to tell the truth could jeopardize a patient’s health, and possibly life. Deborah Mullins is on a highway driving in a car with her same sex partner, Carole, and their three-year-old daughter, Samantha. They are hit by a drunk driver in a multivehicle accident. Ambulances quickly arrive on the scene, and Deborah and Carole, both seriously injured, are rushed to a nearby hospital in separate ambulances. Samantha is taken with minor injuries in another ambulance to a children’s hospital ten kilometres away. In the hospital emergency room Carole’s vital signs are absent. The trauma team tries to resuscitate her, but their efforts fail. Deborah, awake in the same hospital’s trauma room, is not aware of her partner’s death. She

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asks about her family. At the same time her vital signs deteriorate because she has lost a lot of blood. Her colour is pale and her lips are cyanotic. One lung has collapsed and her breathing is laboured. She has had kidney damage on one side, sustained from the impact from another vehicle. She urgently needs to have surgery and whether she will survive the surgery is uncertain. If she does survive, she will be in an induced coma for a week to allow her body to heal. Her physical status is unstable, and the nurses and their colleagues fear and know that any further stress could seriously impair her capacity to survive the surgery and post-operative care in a coma. Deborah receives medications to sedate her and loses consciousness. Then suddenly and briefly she awakes and asks, “How are Carole and Samantha?” The nurses tell her that Samantha is well and at another hospital. No one on the team wants to answer Deborah’s question about Carole. They are aware of the risks of telling her now. One of the nurses evokes the concept of “therapeutic privilege” to justify not telling her the truth. At the same time, there is discomfort about not being honest. One of the nurses points out that Deborah could die in the operating room or intensive care unit without knowing the truth about Carole. The police officers ask to speak to Deborah before she goes to surgery. They want a statement from her before she loses consciousness.

Case 3: Commentary There are two separate issues in this case: whether to permit police to question the patient and whether to answer the patient’s question promptly and honestly. The emergency room nurses caring for Deborah are primarily oriented toward producing the best outcome possible for her—to maximize benefit and minimize harms to her. The situation is critical; the stakes are high. As concerns police access to the patient for questioning, the team’s priority is Deborah as a patient and what is best for her. Any delay in her care caused by police questioning could be seriously detrimental. Moreover, the questioning, even if done sensitively, could lead to distress. Additionally, it could happen that she learns or figures out in the questioning process that her partner has died, and then experiences all the distress that could cause. The hospital will have a policy regarding police access to the trauma area and to patient information in view of patient privacy and confidentiality. The

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nursing staff should be familiar with what the policy permits or requires. Typically, such policies, while recognizing the legitimate forensic and informational needs of police conducting an investigation, prioritize the patient’s medical interests above all. Under the circumstances, permitting the questioning is counter to the patient’s best interests and should not occur at this time. The truth-telling issue is thornier. What are the immediate options? One option would be to lie and tell her that her partner is still alive. Another option would be to avoid answering the question, perhaps by deflecting the question or giving a vague response with the intention of telling her the truth at some later, more opportune time. A third option would be to tell her the truth that her partner has died. How should we assess these options? Undoubtedly, there are good reasons not to tell Deborah the truth under the circumstances. These nurses have extensive experience with trauma cases and understand the potential risk to her health status from the physiological, psychological, and emotional reaction that she could experience given her precarious state. Under the circumstances, learning about her partner’s death could seriously threaten her own fragile status. However, to lie to her, or even to refuse to give her a straight answer, would violate important moral norms that would ordinarily apply in non-emergency situations. Outright lying—saying something that one knows not to be true—is a greater affront to truth-telling norms than withholding information would be. If merely evading an answer would be sufficient for present purposes, it would at least be better than outright lying. The ordinary rule or norm that one should tell the truth has exceptions. Is this an exception? The nature of the truth in question makes a difference. The duty to be truthful with patients is most weighty insofar as it is linked with patient autonomy and the ability to make informed choices concerning treatments. Patients need to know in order to make informed choices. Incomplete, and even more so false information, hinders the patient’s ability to make informed decisions. Moreover, information about a patient belongs to the patient and grounds the patient’s right to receive this information. In this case, however, the truth in question is not, in the first instance, about Deborah or her condition but rather about her partner. Deborah is not owed this information in the same way she is owed information about her own health condition. One of the nurses has evoked the concept of “therapeutic privilege” to justify not providing her with the information. The concept of therapeutic privilege recognizes exceptions to rules of consent that ordinarily apply. It allows that, if the provision of information to the patient to which the patient would

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ordinarily be entitled could be seriously harmful, it may be withheld from the patient (Richard et al., 2010). However, in this case therapeutic privilege is not quite relevant because the information is not about the patient herself and not pertinent in the course of an informed consent process. In any event, since the information in question is not Deborah’s information, whatever duties nurses might have, the duty to speak the truth is lesser. If as a rule nurses would otherwise provide such information, the circumstances in the present case seem serious enough to constitute an exception. All things considered, the best plan, short of outright lying, may be to avoid or deflect or otherwise delay the question for now until Deborah has her surgery and her condition becomes more stable. The team could plan for this later disclosure of the terrible truth, perhaps arranging to have family members at her side when she is told, or even to have another family member tell her. Case conferences and ethics consultations (Swetz et al., 2007) can be helpful in such situations to support the team in determining and providing the best approach to care, but may not be timely enough. Establishing a standard way of responding to these cases, which are not uncommon in trauma units, can be helpful. After responding to this case, the team should consider a critical incident debriefing. Whatever their decision, the team must be extremely sensitive to the physical condition of the patient when they make a disclosure about the status of the patient’s partner. If deception could be justified in a case such as this, it could only be as a last resort, assuming that the less ethically troubling option of avoiding answering the question was not sufficient.

Case 3: Questions 1. Do planned deception or delayed disclosure have a legitimate role in providing health care to Deborah? Support your answer with reference to ethical principles and values. What would you do if you disagreed with the team decision that Deborah should be protected from receiving this tragic news before her surgery? 2. Discuss the concept of paternalism and how it applies to this case. 3. Rules about disclosure of health information to patients and families have exceptions. What exceptions do you think apply in the case of the rule that patients should be told the truth when they ask?

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4. Trauma staff may be asked by police officers to provide personal health information. Review the policy where you study or are employed. What are the guiding ethical principles of this policy? CASE 4: Disclosing and Reporting a Patient Safety Incident Not telling the truth can mean outright lying—saying something one knows to be false, covering up the truth with a falsehood. It can also mean something less direct and less morally problematic, such as omitting to say or disclose something one knows to be true, or saying something that is only partially true. Some truth-telling issues come down to the following dilemma: whether to tell the patient something that one believes would be harmful for the patient to know, or instead to avoid the harm one believes telling it might cause by deliberately not telling it. Thus described, this dilemma weighs the value of truth-telling as a rule, on the one hand, against the value of nonmaleficence (avoiding causing harm), on the other. As discussed in this chapter, attitudes have changed from earlier paternalistic times when this dilemma would be resolved in favour of greater priority to avoiding harm than to the patient’s right to know or to be informed. A different type of truth-telling issue arises when the value of telling the truth is weighted not against concern to avoid causing the patient harm but against concern to avoid some harm to oneself. For example, such a dilemma might arise if one mistakenly gave a patient the wrong dose of a medication, or administered the wrong medication. Such events are often referred to as “medication errors” (for example, CNO, 2019b). If one feared that disclosure or reporting a medication error would mean being shamed or blamed or punished in consequence, understandably one might be tempted not to disclose or report. That is a different and less noble reason for not telling the truth than is concern that telling the truth about a diagnosis or prognosis will harm the patient. On the other side of the issue, in favour of telling the truth about errors or mistakes, different reasons also come into play. In addition to reasons having to do with accountability and the patient’s right to know, and particularly in cases where harm has resulted to the patient, reporting such incidents can be important for making quality improvements to prevent similar incidents in the future. The incident may be symptomatic of a systemic problem that, if not addressed, could result in harm to other patients in the future. If the incident is reported in the context of quality improvement, careful examination of the

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factors that contributed to the occurrence could be used to make improvements to the system, even if no one is faulted for the incident, and whether the patient is informed or not. Such mistakes and errors are but one source of harm that can arise for patients from the provision of health care itself rather than from underlying disease or injury. The Canadian Patient Safety Institute (CPSI) refers to such harm as “healthcare associated harm” (p. 20), noting that “prior to analysis, it may be difficult to discern if the harm is a result of the patient’s natural progression of the underlying medical condition, the risk inherent in the patient’s investigation or treatment, system failure(s), provider performance or a combination of any or all of these” (2011, p. 22). There has been growing awareness of the prevalence of health care associated harm and concerted effort on the part of health care institutions and organizations working together, such as the Canadian Institute for Health Information (CIHI) and the Canadian Patient Safety Institute, to better gauge and understand it with a view to preventing it from occurring (CIHI & CPSI, 2016). Overall, the emphasis is on improving patient safety in the context of the health care delivery. Various patient safety initiatives use different terminology, which can be confusing. Based on an analysis of how the concept of “patient safety” is used, Kim et al. (2015) offer an operational definition of patient safety “as the outcome of collaborative efforts by healthcare providers in a well-integrated healthcare system to prevent medical errors or avoidable adverse events, thereby protecting patients from harm or injury” (p. 2500). CPSI (2011), also noting differences in terminology, uses the term “patient safety incident” to refer across the board to “an event of circumstance which could have resulted, or did result, in unnecessary harm to the patient” (p. 22). CPSI distinguishes three types of patient safety incidents: a “harmful incident,” which includes what are sometimes called “adverse events”; a “no harm incident,” which includes incidents that reached the patient but did not cause discernable harm, and a “near miss,” in which a harmful or no harm incident was detected or avoided before it reached the patient (p. 22). Truth-telling is essentially important for patient safety approaches, both because such approaches assign high value to disclosing patient safety incidents to patients and because from a systems perspective, they are aimed at reducing or preventing such incidents from occurring in the future, which requires accurate and timely reporting. CPSI avoids the term “error” in its

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guidelines for disclosure for two main reasons related to its systems approach to improving care. One reason is that “patient safety incidents are known to most often result from a complex interplay of factors” besides provider actions or inactions, which can include “latent conditions such as equipment and facilities design, training and maintenance, and organizational factors such as policies, procedures, clinical practices and resources” (p. 12). Along similar lines, Sorrell (2017) points out that “medical errors are not typically caused by a negligent or incompetent healthcare professional” but rather “are often the result of a breakdown in processes that guide delivery of patient care.” The second reason CPSI gives for avoiding the term “error” is that use of the term can suggest that the provider is morally or legally at fault, which often is not the case. “Focusing on provider error,” CPSI notes, “promotes a punitive environment that undermines reporting and learning from patient safety incidents and ultimately the system changes needed to improve patient safety” (p. 12). This does not mean, however, that health care providers should not be held to account. CPSI (2011) notes that even with the complex interplay of factors that can contribute to an “error,” “organizations and providers are still responsible and accountable for the quality of their clinical work” (12). Nonetheless, there is a tension between the goals of quality improvement, which can be impeded when providers are inhibited from disclosing or reporting in fear of the consequences of doing so, and accountability, which includes the potential consequence that one will be found to be at fault with respect to the incident one has reported. Regardless, a “punitive environment” undermines reporting not just for quality improvement purposes, but also for purposes of accountability. Unfortunately, punitive “shame and blame” environments still exist, to the detriment both of quality assurance and accountability. The case study that follows illustrates a truth-telling issue for a nurse working in an institution in the process of shifting from a punitive, shame-and-blame culture to a system-based, quality-improvement culture in which reporting is encouraged. Danielle Leduc practises as a registered nurse on an in-patient mental health unit. She has worked there for the last twenty years. She knows the patients well given that many are frequently readmitted due to persistent mental health challenges. Today Danielle feels under pressure because the unit is short-staffed. The charge nurse has asked Danielle to care for two additional patients and Danielle agreed to the heavier patient assignment. The two

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extra patients, Mr. Chan and Mr. Chang share a room. Both have the diagnosis of paranoid schizophrenia. At 10:00 patients attend the morning group program, a key part of their treatment plan. From the start of the shift until 10:00 nursing staff assess the patients, make sure they eat breakfast, take their vital signs, and administer medications. Danielle is working fast to make sure all her patients are ready for the program by 10:00. Her patients all arrive on time for the morning program. The unit has embraced digital health technologies with the goal of improving patient safety and reducing adverse events or critical incidents. There has been a change of culture in the hospital, inspired in part by disclosure guidelines issued by the CPSI (2011). The previous “report and blame” approach has been replaced with a “report and learn” approach focused on quality improvement for patient safety. Part of the rationale for the shift away from blaming is to encourage staff to be forthcoming in reporting incidents, the idea being that they will be more likely to do so if they are not fearful of being blamed. In this new approach, “medication errors” are now referred to as “patient safety incidents” or “adverse events.” A systems approach is used to understand systemic and environmental factors that contributed to an incident and to make changes as necessary to reduce the possibility of such events in the future. Medications are prepared in the pharmacy and dispensed on the unit. Bar-coded medication administration ( BCMA ) and an Electronic Medication Administration Record (eMAR ) are used. Each prepared medication package has an item-specific identification via the bar-code on the package that must match the patient’s identification bracelet. As Danielle turns to preparing the medication for Mr. Chan and Mr. Chang the scanning system is “down” : She cannot scan the medications and their identification band. Using the override function, Danielle opens the locked medication cupboard and removes the medications. As she passes Mr. Chang his medications, he tells her that “these meds look different.” Danielle assures him that he is receiving the correct medications. She watches Mr. Chan and Mr. Chang take their medication and signs the medication administration record. After the patients are in their morning program and things are a little less hectic, Danielle reflects back on Mr. Chang’s statement about his medications looking different. She reviews his medication orders and realizes that she has mixed up the medications for these two patients. Danielle experiences a

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knot in her stomach, and her mouth becomes dry: She has administered the wrong medicine. She is mortified. What should she do? Danielle checks both patients during the day. She observes no change in their status and neither patient complains about feeling different. She is relieved by this, but all the same remains troubled. Thinking about her obligations to her patients, her manager, the institution, and her profession, she feels torn between remaining silent about the incident or telling the truth. Her professional licensing organization and the hospital provide guidelines about reporting medication errors or adverse events in a timely manner. In this case, however, there was no apparent harm to the patients. She reflects that it would do the patients no good to be told about the mix-up, and could even make them distrustful of her and other nursing staff. Even so, in large part the point of the quality-assurance, patient-safety approach is to reduce harms to patients by identifying ways to reduce the potential for harm and make improvement in the processes and systems that are in place. From this point of view, even incidents in which no harm resulted can be instructive to the extent they reveal systems-level deficiencies that could potentially result in harm. Danielle is supportive of the idea behind this new quality-assurance approach adopted by the hospital. However, although the culture has significantly shifted away from the older “report and blame” approach, that mentality still persists. Danielle knows that her manager is “old school” and likely to shame and blame her. Danielle reminds herself that she got into this situation in the first place because of her good-natured willingness to accept an increased workload out of commitment to caring for patients and her colleagues. As she goes back and forth in her mind about what to do, two phrases come to her mind: “To err is human” and “no good deed goes unpunished.”

Case 4: Questions 1. Decide what Danielle should do, using these ethical theories to guide her actions: ■ Deontology ■ Act utilitarianism ■ Rule utilitarianism

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■ Feminist ethics ■ Virtue ethics 2. Was any harm done to the patients? Clarify what you mean by harm. Do you think it is important to be truthful in reporting all medication errors or adverse events, whether the patient was harmed or not? Discuss the reporting policy in an institution with which you are familiar. 3. Danielle thinks that the pressure of additional workload and malfunctioning medication administration system contributed to her making a medication mix-up. Do these systems issues reduce her accountability and obligation to tell the truth? 4. There has been a major shift in patient safety and institutional responses to patient safety incidents and adverse events. Discuss how the following principles form the ethical foundation for this approach to reporting adverse events: truth-telling, respect for autonomy, beneficence, nonmaleficence, justice, and integrity. 5. The rationale for reporting errors or patient safety incidents can be different depending on to whom the report is to be made and the nature of the event. How is the rationale for disclosing to the patient different from the rationale for reporting to the institution? How is the rationale different when a harm has occurred versus when no harm has occurred?

REFERENCES Avci, E. (2017). Should physicians tell the truth without taking social complications into account? A striking case. Medical Health Care and Philosophy, 21(1), 23–30. Bok, S. (1978). Lying: Moral choice in public and private life. Pantheon Books. Brookes-Howell, L.C. (2006). Living without labels: The interactional management of diagnostic uncertainty in the genetic counseling clinic. Social Science and Medicine, 63, 3080–91. Buckman, R. (1992). How to break bad news: A guide for health care professionals. Johns Hopkins University Press. Buckman, R.A. (2005). Breaking bad news: The S-P-I-K-E-S strategy. Community Oncology, 2(2), 138–42.

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Bumb, M., Keefe, J., Miller, L., & Overcash, J. (2017). Breaking bad news: an evidence-based review of communication models for oncology nurses. Clinical Journal of Oncology Nursing, 21(5), 573–80. Canadian Institute for Health Information (CIHI) & Canadian Patient Safety Institute (CPSI). (2016). Measuring patient harm in Canadian hospitals. Canadian Nurses Association (CNA ). (2017). Code of ethics for registered nurses. https://www.cna-aiic.ca/-/media/cna/page-content/pdf-en/code-of-ethics-2017edition-secure-interactive.pdf Canadian Patient Safety Institute, Disclosure Working Group. (2011). Canadian disclosure guidelines: Being honest and open with families. Canadian Patient Safety Institute. Candib, L. (2002). Truth-telling and advance planning at the end of life: Problems with autonomy in a multicultural world. Families, Systems & Health, 20(3), 213–28. College of Nurses of Ontario (CNO ). (2015). Communicating a diagnosis. http:// www.cno.org/fr/exercice-de-la-profession/educational-tools/ask-practice/ communicating-a-diagnosis/ College of Nurses of Ontario (CNO). (2019a). Practice standard: Ethics. https://www. cno.org/globalassets/docs/prac/41034_ethics.pdf College of Nurses of Ontario (CNO). (2019b). Practice standard: Medication. Toronto. Fallowfield, L.J., Jenkins, V.A., & Beveridge, H.A. (2002). Truth may hurt but deceit hurts more: Communication in palliative care. Palliative Medicine, 16, 297–303. Gold, M. (2004). Is honesty always the best policy? Ethical aspects of truth-telling. Internal Medicine Journal, 34, 578–80. Hodkinson, K. (2008). How should a nurse approach truth-telling? A virtue ethics perspective. Nursing Philosophy, 9(4), 248–56. Jenkins, S., & Arribas-Ayllon, M. (2016). Genetic counseling for psychiatric disorders: Accounts of psychiatric health professionals in the United Kingdom. Journal of Genetic Counseling, 25, 1243–55. Kazdaglis, G.A., Arnaoutoglou, C., Karypidis, D., Memekidou, G., Spanos, G., & Papadopoulos, O. (2010). Disclosing the truth to terminally ill cancer patients: A discussion of ethical and cultural issues. Eastern Mediterranean Health Journal, 16(4), 442–47. Keefe-Cooperman, K., & Brady-Amoon, P. (2013). Breaking bad news in counseling: Applying the PEWTER model in the school setting. Journal of Creativity in Mental Health, 8(3), 265–77. Kim, L., Lyder, C.H., McNeese‐Smith, D., Leach, L.S., & Needleman, J. (2015). Defining attributes of patient safety through a concept analysis. Journal of Advanced Nursing, 71(11), 2490–2503.

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Matsui, M., Braun, K., & Karel, H. (2008). Comparison of end of life preferences between Japanese elders in the United States and Japan. Journal of Transcultural Nursing, 19(2), 167–74. Matzo, M., Sherman, D., Sheehan, D., Ferrell, B., & Penn, B. (2003). Communication skills for end-of-life nursing care: Teaching strategies from the ELNEC curriculum. Nursing Education Perspectives, 24(4), 176–83. McGibbon, E., Mulaudzi, F.M., Didham, P., Barton, S., & Sochan, A. (2014). Toward decolonizing nursing: The colonization of nursing and strategies for increasing the counter-narrative. Nursing Inquiry, 21(3), 179–91. McLennon, S.M., Uhrich, M., Lasiter, S., Chamness, A., & Helft, P. (2013). Oncology nurses’ narratives about ethical dilemmas and prognosis-related communications in advanced cancer patients. Cancer Nursing, 36(2), 114–21. Novack, D.H., Plumer, R., Smith, R.L., Ochitill, H., Morrow, G.R., & Bennett, J.M. (1979). Changes in physicians’ attitudes toward telling the cancer patient. Journal of the American Medical Association, 241(9), 897–900. Nutbeam, D. (2008). The evolving concept of health literacy. Social Science and Medicine, 67, 2072–78. Nyquist Potter, N. (2008). Off the radar: Truth-telling in psychiatry. Harvard Review of Psychiatry, 16(3), 381–87. Oken, D. (1961). What to tell cancer patients: A study of medical attitudes. The Journal of the American Medical Association, 175(13), 86–94. Pergert, P., & Lutzen, K. (2012). Balancing truth-telling in the preservation of hope: A relational ethics approach. Nursing Ethics, 19(1), 21–29. Pratt, R., & Wilkinson, H. (2003). A psychosocial model of understanding the experience of receiving a diagnosis of dementia. Dementia, 2(2), 181–99. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. (1982). Making health care decisions: A report on the ethical and legal implications of informed consent on the patient-practitioner relationship (Vol. 1). Government Printing Office. Pullman, D., & Hodgkinson, K. (2016). The curious case of the De-ICD: Negotiating the dynamics of autonomy and paternalism in complex clinical relationships. The American Journal of Bioethics, 16(8), 3–10. Puzan, E. (2003). The unbearable whiteness of being (in nursing). Nursing Inquiry, 10(3), 193–200. Rassin, M., Levy, O., Schwartz, T., & Silner, D. (2006). Caregivers’ role in breaking bad news. Cancer Nursing, 29(4), 302.

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Registered Nurses’ Association of Ontario (RNAO). (2002). Establishing therapeutic relationships. Registered Nurses’ Association of Ontario (RNAO). (2006). Supporting and strengthening families. Registered Nurses’ Association of Ontario (RNAO). (2007). Embracing cultural diversity in health care: Developing cultural competence. Rejno, A., Silfverberg, G., & Ternestedt, B. (2017). Reasoning about truth-telling in end-of-life care of patients with acute stroke. Nursing Ethics, 24(1), 100–10. Richard, C., Lajeunesse, Y., & Lussier, M. (2010). Therapeutic privilege: between the ethics of lying and the practice of truth. Journal of Medical Ethics, 36, 353–57. Rosenberg, A.R., Starks, H., Unguru, Y., Feudtner, C., & Diekema, D. (2017). Truth-telling in the setting of cultural differences and incurable pediatric illness: A review.  JAMA Pediatrics, 171(11), 1113–19. https://doi.org/10.1001/ jamapediatrics.2017.2568 Sisk, B., Frankel, R., Kodish, E., & Isaacson, J.H. (2016). The truth about truth-telling in American medicine: A brief history. The Permanente Journal, 20(3), 74–77. Sorrell, J.M. (2017). Ethical issues with medical errors: Shaping a culture of safety in healthcare. OJIN: The Online Journal of Issues in Nursing, 22(2). Starzomski, R. (2009). Truth-telling at the end of life. The CANNT Journal, 19(2), 36–37. Swetz, K., Crowley, M.E., Hook, C.C., & Mueller, P.S. (2007). Report on 255 clinical ethics consultations and review of the literature. Mayo Clinic Proceedings, 82(6), 686–91. Tobin, G., & Begley, C. (2008). Receiving bad news: a phenomenological exploration of the lived experience of receiving a cancer diagnosis. Cancer Nursing, 31(5), 31–39. Tuckett, A. (1998). “Bending the truth”: professionals’ narratives about lying and deception in nursing practice. International Journal of Nursing Studies, 35, 292–302. Tuckett, A. (2004). Truth-telling in clinical practice and the arguments for and against: A review of the literature. Nursing Ethics, 11(5), 500–13. Veatch, R.M. (1976). Death, dying and the biological revolution. Yale University Press. Warnock, C. (2014). Breaking bad news: issues relating to nursing practice. Nursing Standard, 28(45), 51. Woo, K. (1999). Care for Chinese palliative patients. Journal of Palliative Care, 15(4), 70–74. Wros, P., Doutrich, D., & Izumi, S. (2004). Ethical concerns: Comparison of values from two cultures. Nursing and Health Sciences, 6, 131–40.

CH A P T E R 5

PRIVACY AND CONFIDENTIALITY I … will hold in confidence all personal matters committed to my knowledge in the practice of my calling. —Florence Nightingale Pledge

What I may see or hear in the course of the treatment or even outside of the treatment in regard to the life of human beings which on no account one must spread abroad; I will keep to myself, holding such things shameful to be spoken about. —Hippocratic Oath

Confidentiality has a long history in health care. The Hippocratic Oath dates back to the fifth century BCE. The importance of confidentiality is tied to trust. If patients could not trust health professionals to preserve confidentiality, they would not be as open about sharing information as necessary for the appropriate and effective delivery of care to them. Breaches of confidentiality, even when apparently harmless, can undermine the patient’s trust in health professionals. As a rule, patient permission is required for the disclosure of their personal information. However, information sharing among health care professionals in the patient’s circle of care can be assumed in most instances. Additionally, the law requires health professionals to disclose confidential information in some cases, such as when doing so is necessary to prevent serious harm from occurring. Digitalization and electronic health records have changed the health information landscape in various ways, such as by facilitating the development of large-scale databases and rendering health information more accessible and useful for a variety of purposes. Health care organizations, professional bodies, and legislators have 225

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acted to protect digitally stored and transmitted health information but ethical vigilance is necessary to keep up with ongoing changes and innovations. The use of social media introduces new opportunities but also new privacy risks and challenges and blurs the boundary between professional and private life. Cases in this chapter explore confidentiality in the workplace, sharing confidential information with a patient’s family or friends, release of confidential information to third parties without patient consent, and privacy and social media.

1. HEALTH PROFESSIONALS, PERSONS, AND THE PERSONAL We live out our lives in different roles and relationships: employee, employer, colleague, friend, lover, spouse, partner, parent, child, and so on. Whatever role we play, we selectively reveal and conceal different parts of ourselves, parts of what makes us a whole person. In a relationship with a spouse we might reveal things that we conceal, or at least remain silent about, with colleagues; our children know things about us that we would never share with acquaintances. If our lives are like stories, we are not open books; different pages and chapters are open, and closed, to different people. That we open and close ourselves selectively does not mean that we are deceitful. Rather, it attests to the multidimensionality of life. The ability in some measure to choose which parts of our lives and which information about ourselves will be open to which people is part of what it is to be a person. We regard some parts of our lives as more personal than others. Health care professionals inquire about parts of their patients’ lives that are off limits to most other persons. In the interest of promoting, preserving, and restoring health, patients allow health professionals access to knowledge about themselves that is otherwise guarded as being private or personal. Patients allow their bodies to be touched and examined. They sometimes open pages of their lives that are closed even to others in their most intimate relationships. In doing so, they become vulnerable. The information they reveal has the potential to cause embarrassment or serious harm. Their personal dignity, well-being, and even security can be threatened. A sense of control over personal information can be vital to a patient’s integrity and well-being. That health care reaches deeply into personal lives and makes people vulnerable adds gravity to the imperative for health care

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professionals to be respectful of privacy and hold in confidence knowledge disclosed in the therapeutic relationship. Patients open personal dimensions of their lives to health professionals trusting them to respect their privacy and hold in confidence what is disclosed to them.

2. PRIVACY AND CONFIDENTIALITY Confidentiality and privacy are related, but they are not the same thing. Confidentiality pertains to the character of knowledge or information about someone that is confided or acquired in special relationships. Respect for confidentiality is a responsibility or duty of someone with whom such information has been shared or confided not to share that information without the consent or knowledge of the person who has confided it. Privacy is a broader concept that pertains not just to information—information about ourselves that is personal—but also to our bodies and personal space. The right to privacy, for example, has been invoked as a legal basis for a woman’s right to choose whether to have an abortion. Arguments against mandatory screening (e.g., for genetic defects, for illicit drugs) and testing (e.g., HIV, hepatitis B) are frequently couched in terms of “invasion of privacy.” In health care the issues of privacy and confidentiality can be distinguished as follows: Moral claims in connection with privacy concern the right of individual patients to limit access of others to their person or their personal information. Confidentiality, by contrast, pertains to the duty or obligation of those who have become privy to personal information not to disclose it or to access it without the person’s knowledge or permission. Privacy pertains broadly to individual people, in their personhood and dignity; confidentiality pertains to information about a person held in a special relationship of trust. Privacy is a right or moral claim of the patient with respect to their person and to their personal information; confidentiality is a duty of a health professional. We could say, then, that a nurse who receives confidential information from or about a patient is under a duty of confidentiality. The nurse is a custodian of health data. This duty corresponds to a right of privacy on the part of the patient with respect to this information. However, privacy encompasses more than personal information. A nurse who averts her eyes from a patient who is undressing demonstrates respect for the patient’s privacy; safeguarding

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whatever information the nurse may have learned in the encounter with the patient would demonstrate respect for confidentiality. Some writers believe that privacy has a core, essential, unitary meaning; others believe that the concept gathers meanings related not so much by essence as by overlapping family resemblances. Warren and Brandeis (2001) offer the most famous and influential definition of privacy as the “right to be let alone” (p. 278). Their account is noteworthy not only for the assertion of privacy as a right but also because they specifically ground privacy in “inviolate personality” (p. 278). “Inviolate personality” encompasses our sense of modesty and dignity, but is also linked to self-determination and autonomy. Alan Westin (1984), the father of contemporary privacy studies, emphasizes the link between privacy and autonomy in defining privacy as “the claim of individuals, groups, or institutions to determine for themselves when, how and to what extent information about them is communicated to others” (p. 7). Adding to this mix is the concept of group or community privacy. The disclosure of information about me, and my genetic information in particular, may also reveal information about others, such as family members. Information about me as an individual may indirectly contribute to a composite picture or representation of some community or group to which I belong or of people with whom I share a genetic heritage. The picture thus formed of my group or community can be hurtful or harmful to others in that group or community, whether or not I am harmed as an individual. For this reason, groups prone to being negatively stereotyped insist that consent from, or on behalf of, the community as a whole should be sought for research studies that may reflect negatively on the community.

3. BREACHES OF CONFIDENTIALITY The duty of confidentiality is enshrined in the various promissory statements— ethical guidelines, codes of ethics, legislation—that govern the health professions. However, professional promise and official statements notwithstanding, in practice the observance of confidentiality has often fallen short of the ideal. A breach of confidentiality occurs when information about someone is shared with or made available to others without patient authorization, and when that information is a matter of confidence between the person and those to whom it was entrusted for safekeeping. Breaches can be either deliberate

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and intentional or inadvertent and unintentional, and additionally can be justifiable or not justifiable. A hospital nurse who has acquired health information or knowledge about a friend or neighbour who has been admitted to the unit and who shares that information with others not directly involved in the person’s care would be knowingly and intentionally breaching confidentiality. The information in question would be confidential and the purpose for which it was shared would not be consented to. This would not be justified or justifiable. However, in some cases there may be legitimate reasons for sharing such information because some other value was at stake. A breach of confidentiality may be justified, morally and legally, as an exception to the general rule that confidences should be preserved. For example, if the nurse learned that the person was at risk of self-harm or suicidal, or planning to harm others, he or she might be obliged to disclose that information to others, even if the person did not give permission for this. Inadvertent or unintentional breaches of confidentiality, by contrast, occur when health professionals do not realize that they are breaching confidentiality or engaging in practices that can result in improper disclosures. A conversation among nurses overheard in a cafeteria, an unguarded answer to a seemingly innocuous question about a patient, a chart or record left momentarily unattended, a computer screen that does not close automatically after the user leaves the terminal: These are but a few examples. Inadvertent and unintentional disclosures need to be considered in context. Health care providers are not necessarily blameworthy for them, or solely responsible. To be sure, breaches are sometimes the result of carelessness or thoughtlessness, and nurses should be held to account for them. However, a major reversal has occurred in how we think about errors, not just with respect to breaches of confidentiality but more generally in the provision of care. Systemic processes and factors beyond the nurses’ control can also cause, or at least contribute to, error. Nurses rushing from a computer terminal to stop a person from falling may understandably neglect to log-out. Systems-level changes can reduce the risk of the errors of inadvertent disclosure. For example, computer terminals can be programmed to close after a computer is left idle for a short time. Private areas can be provided for counseling and discussion out of earshot of those who have no need or right to hear what is being said. Charts and patient boards can be securely located away from prying eyes. Protocols can clarify and remind nurses about what information can be disclosed to whom under what circumstances.

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An emphasis on system changes and security should not, however, be construed as absolving nurses from individual responsibility. Nurses need to exercise care and be vigilant about not identifying patients when they mention or discuss cases away from their unit—which sometimes happens, quite properly, for instance, when a nurse meets up with a colleague and takes the opportunity to have an important discussion about patient care. The norms and attitudes that nurses hold is critical. There is a positive and significant correlation between nurses’ attitudes toward respect for privacy and confidentiality and their planned behaviours (Tabak & Ozon, 2004). Ways of influencing attitudes and behaviours include education and workplace policies that support nurses in carrying out their responsibilities in connection with confidentiality.

4. INFORMATION-SHARING, PATIENT AUTHORIZATION, AND THE CIRCLE OF CARE Information contained in health records belongs to the patient. The nurse who receives access to the patient’s information is a custodian of that information. The ultimate authority over confidential information is the patient, and the health professional has a duty to safeguard information for the patient in trust. With some exceptions to be discussed later, sharing confidential information is thus authorized or not depending on whether the patient agrees or consents to passing on that information. If confidential information is released to an outside party without the patient’s consent, that act represents a breach of confidentiality; if the patient consents to the release, it is not a breach. Yet patients do not specifically have to expressly agree to and authorize every instance of information-sharing in the health care setting. Sharing information on a “need-to-know” basis with other health professionals in the “circle of care” who have a part in the care of the patient can be critically important for the provision of timely and effective care. The patient’s consent for needto-know sharing may reasonably be implied when the information shared is necessary for the purpose for which the care is being sought, provided that the patient has not indicated any wishes to the contrary. The College of Nurses of Ontario (CNO) practice standard on privacy and confidentiality (2019b), referring to Ontario health privacy legislation, notes that “generally, consent to use information to provide care can be assumed by the health care team” (p. 5). In many institutions, as a matter of policy patients will be informed about

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need-to-know sharing of information (e.g., as part of the process of admission to hospital). Today’s health care systems use a team-based approach to health care. The circle of care can be very extensive as interdisciplinary health care teams in hospitals and the community collaborate on many aspects of care. Integrated health care teams can include health care professionals and caregivers along a continuum of care, including nurses, physicians, chaplains, community care providers, social workers, nutritionists, speech therapists, physiotherapists, laboratory technicians, administrative staff, and volunteers. These extended and extensive circles of care pose challenges and difficulties as concerns confidentiality. In a hospital setting, community health care providers such as a family physician, nurse practitioner, or community services organization can only be included in the circle of care for purposes of information sharing when the patient consents to their inclusion. In the community, a patient may request that the family physician or nurse practitioner provide only pertinent information in a letter requesting a consultation with a specialist. The CNO (2019b) notes that, under the “lockbox provision” in Ontario legislation, clients “have the right to instruct that a part of their personal health information not be shared with other providers,” adding that if “a client instructs a nurse not to release a part of his/her health information to another practitioner, the nurse must advise the practitioner that some relevant information has been withheld at the direction of the client” (p. 6). Not all persons in the circle of care need to know all the details entered in the patient’s health record. It is enough for most of them to know only what they need to know in order to contribute effectively to the patient’s care. For example, on a need-to-know basis the nursing staff in a nursing unit would have access to patient laboratory reports, but administrative staff would not. Those who are privy to confidential information may need to use judgment to determine not just who is in the circle of care but also what information may be shared with them on a need-to-know basis without the patient’s specific consent. In some cases, decisions about what information is needed for care purposes put caregivers in a grey zone that requires consultation with the patient and clinical team. If there is uncertainty about who is within the circle of care, or what information can be shared with someone who is in the circle of care, clarification should be sought. It should be obvious that the patient is at the centre of the circle of care. Ironically, however, in the recent past patients were not able to access their

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own health information. Today, health information legislation across the country affirms the right of patients to access their health information. Health care institutions have developed protocols to enable this to occur. The ability to access one’s own health information enables one to assume greater control over one’s health care.

5. DETERMINING WHETHER INFORMATION IS CONFIDENTIAL Related to the issue of authorization to disclose confidential information is the issue of whether a given item of information is confidential to begin with. Suppose that in an occupational setting a senior manager asks the occupational health nurse to provide a log documenting whether and when a certain employee has been to the health unit in the past six months. Is this information confidential? The answer here is fairly clear-cut: The employee and the health unit have an implicit agreement that information collected under the auspices of the unit is confidential and will be treated as such. In this case, even the very fact of having visited the health unit is confidential, and therefore cannot be shared without authorization. Other cases can be less straightforward. Suppose that the parents of a woman who has just given birth phone the nursing station and enquire whether they have a grandson or a granddaughter. Is this information confidential? A nurse might understandably assume that the patient would not mind this information being shared with their family. The information in question, after all, is normally considered to be “happy news” and even somewhat non-consequential. It might be hard to imagine why the patient would mind. However, there are reasons why the patient could consider information about the birth to be a private and even sensitive matter. The patient could have reasonable grounds for objection if this information were shared without her consent. Regardless of whether the patient or the nurse considers the information to be sensitive—the information is confidential because of the context. The important point to note is that individual practitioners cannot rely upon their own estimation of the information’s intrinsic sensitivity to determine whether it is confidential or not. What makes information confidential is not its specific detail. The decisive factor is the context in which the nurse becomes privy to the information. In the context of health care and when the nurse receives health information in a professional capacity, there is a strong

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expectation of confidentiality. As a general rule, therefore, the answer to the question as to whether information is confidential and needs to be treated as such is simple: If nurses become privy to information in the course of their professional duties, the information is confidential. It is not appropriate for nurses to share confidential information—however innocuous that information may seem—without the permission of the patient or unless otherwise authorized. The CNO practice standard on ethics (2019a) clarifies that “all information relating to the physical, psychological and social health of clients is confidential, as is any information collected during the course of providing nursing services” (p. 7). Although the patient’s consent to share confidential information can reasonably be implied or assumed in some cases, this assumption can be made in error. The more that is assumed or left implicit between nurse and patient, the greater the risk of misunderstandings. “But I assumed that you would treat that as being confidential between us,” a patient might say. Nurses can guard against such misunderstandings and potential complications by being as explicit as possible with patients about what sorts of things will or should be protected under the umbrella of confidentiality. This approach is especially important in cross-cultural exchanges. Sensibilities about privacy and confidentiality vary somewhat not just from person to person but also depending on the cultural backgrounds of providers, patients, and their families.

6. EXCEPTIONS TO THE RULE OF CONFIDENTIALITY The duty of confidentiality is not absolute: There are exceptions to the rule of confidentiality, and conditions under which it is justifiable to breach it. When it comes into conflict with other duties, confidentiality must sometimes yield. Indeed, under certain circumstances nurses are required by law to disclose confidential information without patient consent. Controversy exists about what constitutes a legitimate or justifiable exception to the rule of confidentiality. The most uncontroversial legal exceptions typically have to do with preventing a serious harm from occurring. A landmark legal case in this regard is Tarasoff v. Regents of the University of California. The case involved a man who had killed his girlfriend—and had previously confided his intention to do so to his psychologist, who was employed by a hospital at the university (Clarke, 1986; Tobriner, 1986).

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Although the psychologist took steps to protect against this danger, at one point even having the patient detained by the university police, he did not communicate the threat to the woman. Obviously, he did not do enough to prevent harm from coming to her. The family of the young woman who was murdered took the matter to court, arguing that she should have been warned or otherwise protected from the danger. The court ruled that if in the course of a therapeutic relationship a therapist is given reason to believe that a patient may present a significant danger to others, that therapist has a “duty to warn” of the danger. Both the magnitude (how bad would it be if it happened?) and the probability of the harm foreseen (how likely is it to happen?) are morally relevant and have to be weighed together in decisions to disclose without consent. As concerns magnitude, harms can be distinguished along a continuum ranging from the less serious, such as embarrassment, to the gravely serious, death. The more serious the harm foreseen, the more compelling is the case for a breach of confidentiality. As concerns probability, the risk of the harm may range from being very low to very high. The psychologist whose patient confided an intention to kill a former girlfriend apparently believed—mistakenly—that this act had a very low probability of actually occurring. The ethical codes of health professions agree that under certain conditions it is justifiable, and sometimes obligatory, to disclose confidential information without a patient’s permission in the interests of averting harm. The nurse is not morally obligated to maintain confidentiality when the failure to disclose information will place the patient or third parties in significant danger. Legal requirements to disclose are morally justified by the same criterion. For example, generally nurses are bound by law to report suspected abuse to a child protection agency. Noting that nurses sometimes “learn information which, if not revealed, will result in serious harm to the client or others,” the CNO practice standard on ethics (2019a) advises that in such instances nurses should “consult with the health care team and, if appropriate, report the information to the person or facility affected” (p. 7). The standard adds as well that the “client or substitute decision-maker should be told of the need to report the information,” thus affording them the opportunity to decide to disclose (p. 7). As a rule, patients are entitled to know the conditions under which confidential information about them might be released to others without their consent. In this regard, nurses should be aware—and as appropriate make their

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patients aware—of any laws or policies that permit or require nurses or other health professionals to disclose confidential information.

7. PRIVACY AND CONFIDENTIALITY IN THE DIGITAL AGE The health system has undergone vast changes due to digitalization of health records and the use of social media. The following is a partial list of ongoing developments and emerging initiatives that indicates the impact of these changes: ■ the use of comprehensive electronic health records systems in all health organizations, small and large; ■ the creation of health information systems and networks and a “Health Infoway” across the country to facilitate greater access to, and sharing of, information scattered in various repositories or “silos”; ■ the proliferation of databases linking information from a variety of sources, including registries for various diseases and conditions; ■ a trend to public/private partnerships in connection with health information systems and, related to this, the increasing commercialization of health information and information management systems; ■ the emergence of “big data,” which refers to large collections of data from many sources, including electronic health, medical and personal health records that can be combined with other pools of information from business, insurance companies, Internet use and information found on Facebook, Twitter, and other social media; ■ initiatives for quality assurance and improvement, health policy development, and research that depend on access to information; and ■ developments in the field of genetics and genomics and increased interest in access to genetic samples and information for a variety of purposes. With current and future information collection and processing systems, vigilance about and ongoing review of practices and policies concerning access to health records is necessary.

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7.1. Benefits, Risks, and Detriments Before the use of computers and information technology it was difficult to obtain information for reasons other than the provision of care and local quality assurance programs and audits. With information scattered in filing cabinets, the human and financial costs of gaining access to or assembling data were significant impediments to secondary uses. In digitalized form, health information is easier and less costly to reproduce, process, and share. At the micro level, benefits are directly enjoyed by patients and those working on their behalf in their circle of care. Nurses with computers at the bedside or during community visits can input data immediately. This data is readily available and allows timely analysis, collaboration, and evaluation of care. In urgent situations, fast access to data can improve patient outcomes. There can be less duplication of tests, which in addition to managing costs can directly benefit patients. Health care providers can collaborate without physically meeting, which can be especially important in rural and remote communities. Patients appreciate having access to their health records through systems such as MyChart, which can enable them to be better informed when participating in discussions about their condition and treatment options. There are also significant benefits at the macro and meso levels. The data can be used to improve the health system and to manage it more effectively. Aggregate data can be employed by researchers, policy makers, and administrators to benefit groups, communities, and larger populations. Beneficial outcomes include population health promotion and prevention policies, system improvements, and efficiencies resulting in financial and human resources savings. Nurses lead or participate in many of these research and quality improvement programs. With these important benefits come new risks, detriments, and ethical issues. The use of electronic records, linked databases, and “big data” raises apprehensions that Big Brother (or Big Sister) will learn about and monitor every detail of patient interaction with the health system and link with other information systems. It may be banal if an Internet search for hotels or Facebook communication with friends about travel leads to unsolicited information about hotels and car rental. It would not be banal if a search for a long-term care home leads to unsolicited information about products for frail persons or to a query from the searcher’s insurance company about their health condition. Big data comes with powerful new analytic productive processes coupled with artificial

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intelligence. Even when identifiers are removed, there may be risks and detriments, in some cases including the potential for data subjects to be identified or reidentified from aggregate data. And even if individuals cannot be identified by policy makers or researchers working with aggregated data, members of a group or community may object to how their group or community is represented, portrayed, profiled, or stigmatized by the data. The right to control what happens to one’s personal information is central to privacy; this right is assured by the requirement of consent for disclosure or sharing. There have always been exceptions to the requirement for consent, enabling the non-consensual disclosure or collection of information outside the circle of care. However, these have been very narrowly limited for secondary purposes beyond the provision of direct care to the patient. Consent requirements impede the flow of patient information and make it less useful or altogether impractical, particularly for secondary purposes beyond the provision of care. Given the beneficial uses of health information, the list of legally sanctioned exceptions to the consent requirement for information sharing has grown. To be sure, non-consensual sharing of health information by health care custodians with third parties, such as government, researchers, and law enforcement, is carefully regulated so as to minimize the possibility of harm rebounding to patients whose information is shared. For example, information that could identify individual patients may be removed or masked without unduly compromising most research purposes. Access to a database in which information from patients is stored can be limited to “authorized users” and carefully protected against unauthorized use. One could argue that as long as the information is protected so as to minimize the risk of harm rebounding to patients, there is no reason to require consent. This line of argument grounds privacy and confidentiality in nonmaleficence. Avoiding causing harm to patients is certainly an important reason why privacy and confidentiality is important. However, an alternative argument grounds privacy and confidentiality in autonomy. From this point of view, non-consensual information sharing is itself a detriment to privacy and a breach of confidentiality as long as the patient has no choice in the matter, and regardless of how carefully the information is protected or how low the risk of harm rebounding to an individual patient is. It is of course important that “unauthorized” sharing be prevented, but even “authorized” sharing violates privacy and confidentiality if the “authorization” is not given by the patient or does not require the patient’s consent.

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Although the information technology age we live in increases the urgency of concerns about privacy and confidentiality, the key moral questions and issues arising are far from new. Traditionally, disclosure without consent has been justified under very tightly limited, specific conditions, but these traditional norms have become increasingly strained, largely in consequence of increased demands from secondary users of health information—for instance, health planners, health care professionals, and researchers. Questions about who should have authorized access to personal health, and under what conditions, go to the heart of confidentiality. These questions continue to be debated today. It is important to distinguish these sorts of questions from others having to do with implementing measures to protect information so that those who do not have a right to it are unable to access it—in other words, to distinguish these questions from issues of security. Given the sensitivity of health information, patients are rightly worried about failures of security. The risk of hackers breaking into computer systems, or of people inside an organization gaining access beyond what they are authorized to access, is serious. Health care professionals, managers, and designers of health records systems can be held accountable for the use of these systems. Patients cannot be expected to be experts on the design of system security, just as most nurses are not experts. They rely on privacy officers, cyber experts, and information technology professionals, some of whom are nurses with expertise in informatics. Patients and front-line nurses expect organizations to have security measures such as entry codes, audit trails, and encryption in place to prevent unauthorized access to, and modification or deletion of, confidential information. Patients also trust nurses and other health professionals to respect their privacy and safeguard the information to which they are privy. The confidentiality and security of private health information is a priority for health care institutions and for professional organizations, who have amended their codes, policies, and standards to include guidance about electronic records. Typically, guidelines are based on ethical principles of respect for privacy and confidentiality and refer to legal protection provided by federal and provincial privacy laws, which in recent years have been created or amended to include digitalized information and information flow in light of the changes discussed at the beginning of this chapter. A common provision in recent laws and guidelines is that patients are entitled to know how their information is protected and the circumstances in which it may be shared with others without their consent. Another common provision, which is a

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significant advance for patient rights, is the codification of the common law that patients own their information, and are entitled to have access to health information about them that is held by custodians. Advances in genetics pose new challenges. Counseling is imperative when persons are considering screening for genetic or communicable conditions and diseases and should include information about when disclosure to others outside the circle of care is mandatory or permitted. The rules about disclosure can be different for different conditions. Nurses who test positive for HIV do not have to inform their employer but information about nurses who are found to have TB will be given to their employer. Developments in genetic testing raise very serious concerns. The information gleaned from such testing may be revealing, sensitive, and potentially harmful to patients and related family members. There are a variety of reasons why such information might be of interest or even of importance to third parties, including employers, insurance companies, the police, and family members. For example, an adult child of a person with Huntingdon’s Disease (HD) has a 50 per cent chance of being a carrier. Pre-screening counseling is essential for persons contemplating genetic screening along with knowledge of legal protection from discrimination based on test results.

8. PRIVACY, CONFIDENTIALITY, AND SOCIAL MEDIA Nurses are professionals. The conduct of nurses as professionals is guided by, and nurses are accountable for their conduct as assessed in light of, the norms of the profession. What are these norms by which nurses are supposed to live and in light of which they are accountable? There are several sources. Nursing has a “code of ethics” that asserts various ethical values and norms. These are essentially complementary to enforceable legal norms, norms proclaimed by nursing regulatory bodies, and norms expressed in institutional policies and guidelines. These conduct-guiding norms, articulated by a variety of sources and sometimes expressed in different ways, can be called “professional norms.” Increasingly today, nurses use the Internet and social media—blogs, Twitter, Facebook, Instagram, and so on—for various purposes, some personal and some professional. As this is relatively new and social media continue to evolve, questions arise about how professional norms apply to nursing conduct on social media. Terms used by nurse commentators such as

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“cyberprofessionalism” (Marnocha et al., 2015) and “e-professionalism” (Wolf et al., 2015) suggest that social media poses somewhat new and unique questions as concerns what professional norms apply and how they apply, and generally how nursing conduct on social media should be guided and regulated. Commentators on the use of social media and networks point out that it is double edged. Depending on how it is used, social media and networking has the potential to advance professional goals but it also has the potential to undermine professionalism (Gage-Bouchard et al., 2017; Marnocha et al., 2015; Wolf et al., 2015). As De Gagne et al. (2019) express this double-edged aspect of social media, “it is evident that the use of social media has potential for positive professional development” but “when used inappropriately, it can degrade the working and learning environment, harm reputations, and negatively affect patient safety” (p. 25). In some cases, inappropriate conduct rises to the level of norm violation subject to legal or regulatory penalties. Marnocha et al. (2015) report that a “majority of nursing and physician licensure boards report having addressed 1 or more complaints involving social media” (p. 119). Westrick (2016) describes several legal cases and Brown (2016) reviews legal and regulatory norms that apply in the employment context. Many issues arise in connection with nurses’ use of social media. One problem is determining the boundary between professional and private lives. Professional life—when someone is acting in a professional role—is obviously subject to professional norms. However, an off-duty nurse who discloses confidential information about a patient acquired in his or her professional role clearly violates professional norms of patient confidentiality. However, no professional norm is violated if the confidential information disclosed concerns not a patient but a friend who has told the nurse a secret in confidence, although its disclosure violates other non-professional norms that apply to the nurse as they do to anyone. The distinction between professional and private life is clear in these contrasted instances, and it is clear how professional norms apply in the first instance but do not apply in the second. In other instances, the distinction is not so clear. For example, boundaries are somewhat blurred, and whether professional norms apply may not be obvious, when private life— “off-duty” as it were—nurses conduct themselves in such a way as to bring disrepute to the institution by which they are employed or to the profession. There is a line to be drawn, the crossing of which constitutes unprofessional behaviour even in private life, although there can be debate about precisely where that line should be drawn.

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In some respects, boundary issues are not significantly different as concerns conduct on and off social media. A nurse who discloses confidential information about a patient violates a professional norm whether he or she does so over dinner with family members or in a Facebook posting. Conduct that crosses the line in bringing disrepute to the profession violates a professional norm whether it occurs on or off social media. However, there are distinct features of social media use that contribute to the blurring of boundaries. There is a risk that nurses and all social media users will be less careful to self-regulate their behaviour on social media than when using traditional communication methods: to make comments that they would not otherwise say, or to say things less carefully. Related to this, as the Canadian Nurses Association ([CNA] 2012) cautions, “when we combine the use of technology with social connections, the line between what we think of as ‘private’ and ‘public’ is blurred” (p. 2). People tend to think of social media as being more private and less public than it really is, not taking into account the potential that communications on social media are recorded and can be shared with, or accessed by, unknown others. Although users of social media often believe that their postings are available only as intended to friends and family, “social network sites such as Facebook, and blogs, are firmly in the public domain” (CNA, 2012, p. 4). A disparaging comment about a colleague or about the quality of care provided in a given health care institution shared over lunch with friends is more private than if posted on Twitter, a record of which may persist and circulate in ways that are not anticipated. In both contexts, the comment may be controversial. However, once the comment is on social media the nurse has greater exposure and risk of being considered unprofessional to the point of harming the image of the profession. The case of Carolyn Strom presented later in this chapter illustrates the need to be clear about professional boundaries. The use and abuse of social media and networking among nursing students has received more attention in the literature than has its use by practising nurses. In a study of schools with accredited associate and/or bachelor’s degree nursing programs, Marnocha et al. (2015) found that of the 293 respondent deans and directors, “225 (77%) were aware of incidents of unprofessional content posted online by nursing students in their schools, and 46% were aware of such incidents involving nursing students at other schools” (p. 120). The most frequent recent instances of unprofessional conduct respondents reported were “negative comments about patients, peers, their work environment, or

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the nursing profession (58%); profanity (37%); patient confidentiality (31%); and discriminatory language (29%)” (p. 120). De Gagne et al. (2019) studied what they call “cyberincivility” among nursing students using Twitter. They examined a total of 8934 tweets from 163 users over a six-week period (p. 27). Sixty of those users tweeted inappropriately at least once, and on average had 6.93 inappropriate tweets. Of the 413 tweets they categorized as uncivil, 240 related to nursing (as opposed to being merely personal). These included nine instances of confidentiality violations and 29 instances of demeaning patients, which included “inappropriately venting about a patient’s condition, making jokes about a patient’s situation, or otherwise tweeting unprofessionally about a patient” (p. 27). A critically important question in such studies concerns the normative criteria according to which instances are classified as being unprofessional or uncivil. For example, De Gagne et al. (2019) defined uncivil tweets as “ill-mannered, disrespectful, or containing annoying, derogatory, disruptive, and/or aggressive remarks,” acknowledging that this is a “big umbrella of online misbehaviors that are often perceived as inappropriate, unprofessional, impolite, and/or unethical by most members of the nursing or health professions community” (p. 27). Some instances thus classified will be relatively trivial compared with more egregious and serious instances. Moreover, it could be debated whether some instances, such as some tweets categorized under the heading “use of profanity,” should be classified as an instance of incivility at all. De Gagne et al. acknowledge that “there continues to be disagreement in the literature and the opinions of health professions students as to what constitutes unprofessional behavior” (p. 29). Reviewing the literature addressing “the impact on professional boundaries of personal social media use” and the “nursing practice challenges” it poses, Slobogian et al. (2017) identified three key themes. The first is that “the onus of boundary maintenance is on health professionals” (p. 394). What nurses reveal and how they present themselves on social media can have a bearing on how they will be perceived in their professional roles by patients. “It is unrealistic,” Slobogian et al. (2017) point out, for nurses “to imagine that their personal engagement in social media cannot or will not in any way be linked to their professional nursing roles” (pp. 394–95). A patient who comes across a posting by a nurse talking about a wild evening of intoxication and partying and who subsequently interacts with the nurse in a professional role will perceive the nurse in light of this social media information. This perception of the

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nurse could potentially undermine the professional relationship, particularly if the patient is struggling with alcohol addiction. To place the onus of boundary management on health professionals is to emphasize that it is the responsibility of health professionals to set and maintain boundaries so as to protect the integrity of their professional role and their relationship with patients. The second theme Slobogian et al. (2017) find in their review of the literature is that “the most common boundary violations are related to breaches of confidentiality” (p. 394). They note that “[c]ase reports of disciplinary actions detailing stories of nurses who have intentionally or unintentionally disclosed information that can be linked to a patient are common” (p. 395). As an example, they discuss a photo posted on social media of a group of nurses at work celebrating an event, with the patient board visible in the background. Even though the nurse posting this does not intend to reveal this patient information, and may not even realize that it is visible, it amounts to a breach of confidentiality. The third theme Slobogian et al. (2017) identify is that “there is an obvious gap in organizational policy to assist providers in navigating these issues” (p. 394). The introduction of new technologies often creates uncertainty and ambiguity about ethical and professional norms. This is especially true of social media. In many instances, professional norms will have a clear and obvious application to social media use. However, in other instances, there may be a lack of clarity and things may be murky, particularly as concerns the boundary between personal life and professional role or between what is private and what is public. In view of the complexities of boundary management in the personal use of social media, nurses may not know what acceptable activity is “and require assistance in navigating this” (p. 395). The authors found that “many employers do have social media policies” but that “these policies are general and offer little specificity in terms of how nurses might navigate the complexities of online relationships with clients or coworkers” (p. 395). They found this to be true also as concerns the guidance of regulatory bodies and professional interest groups in their nursing field, oncology. “Broad statements around maintaining professionalism and safeguarding client privacy,” the authors write, “are often not concrete enough to be applied in practice” (p. 395). In view of the potential for blurred boundaries, lack of awareness or clarity about how professional norms apply, and evidence that conduct thought to be unprofessional or uncivil is not infrequent, commentators emphasize the importance of clear and up-to-date guidelines to help nurses and nursing

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students navigate their use of social media (Barnable et al., 2018). De Gagne et al. (2018), who reviewed guidance documents in 230 nursing schools with master’s programs, add that it is not enough to have a policy: “Students and faculty need to be aware of it and understand it” (p. 40). Slobogian et al. (2017) note that only one of the social media policy guidance documents they reviewed “included a clear list of ‘dos and don’ts’” (p. 35). It can be helpful to include such lists in guidance documents, at least regarding conduct on social media that would plainly violate professional norms expressed in law or by regulatory documents. However, there is room for disagreement or debate, concerning the application of professional norms, and about what constitutes unprofessional or unethical conduct. Certainly nurses are subject to professional norms in their personal use of social media. The CNA (2012) appropriately advises that nurses “should maintain the same level of professionalism when using social media as they would when communicating face to face” (p. 4). However, even in face-to-face communication there are grey areas. Nurses are professionally accountable for their conduct even when they are not acting in a professional role. Different values can be in tension or even conflict in applying professional norms. Nurses are also entitled to a private life and, as with other members of society, have a right to freedom of expression. There are issues about how professional norms should be applied, and how they should be weighed against competing values such as freedom of expression, when someone is not acting in a professional role. Reasonable people can disagree about what conduct counts as uncivil or as bringing an employing organization, or the profession itself, into disrepute. In sum, there are clear “dos and don’ts,” and nurses should be aware, or made aware, through organizational policies and guidance documents, what these are. However, professional norms need to be interpreted and applied in view of particular circumstances. The responsible exercise of one’s moral agency as a nurse cannot be reduced to mere compliance with a list of “do’s and don’ts.” In some cases, there are values in tension or conflict that need to be weighed. In the use of social media as in other matters, nurses must use their judgment. The point of guidance about the use of social media is to guide judgment, and not to replace it. In addition to generating awareness and sharpening understanding of professional norms, well-chosen cases and vignettes can help nurses to develop their judgment. For example, the CNA (2012) helpfully illustrates the application of professional norms to a wide range of issues posed by

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social media use through discussion of vignettes, which include posting information about a patient on Facebook, responding to a “friend” request from a patient, and discussion about workplace issues in a blog. Moreover, attention to the potential for social media to be used inappropriately should not eclipse the potential benefits of social media. The personal use of social media by nurses can serve many useful purposes. Social media can be used in various ways to promote professional nursing goals, including for provision of evidence-informed information for client discussion, as a teaching tool, for hosting client and family support networks, and for developing professional connections and mentoring relationships (Nova Scotia College of Nurses, 2019, p. 2). As the CNA (2012) emphasizes, “The possibilities are limited only by our imagination, our knowledge about social media and our understanding of the ethical dimensions that bringing such tools into our practice creates” (p. 13). No list of “dos and don’ts” can substitute for the advice which the CNA offers at the conclusion of its discussion, which is to “pause before you post.” That moment of pause is the moment of thoughtful reflection in which nurses exercise responsible agency (p. 13).

9. CONCLUSION Until the late 1980s nurses working with a patient typically documented the case in a chart that was available to a restricted number of colleagues—specifically, only those who needed to have that information in order to provide care to the patient. With computerization and developments in health informatics, how personal information is documented, stored, and shared has changed dramatically. Nurses are often members of health care teams that serve large organizations with large populations. And with the restructuring of health care, nurses work in a widening variety of settings and contexts besides hospitals—clinics, industry, the community, schools, and remote outposts. The future will bring more ways to document, store, and share patient health information. What remains constant is that nurses are afforded privileged access to what is otherwise confidential information about patients. With this knowledge, nurses also acquire power—a double-edged power that can bring ill as well as good upon patients. In turn, patients, already made vulnerable by illness, become even more so. In such a relationship, trust is vitally important. In assuming this trust, nurses should be as clear as possible about

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what they can and cannot promise by way of information disclosure, and about what patients can and cannot expect. Granted, all human interaction takes place against a background of understandings and assumptions that can never be rendered fully explicit. But when the consequences of misunderstanding will be serious, nurses and patients together should try to make their shared understanding as explicit as possible. The strains and stresses on confidentiality are changing. As nurses try to keep abreast of these changes, they need to remember the fundamentals of confidentiality to ensure that they deserve the trust patients vest in them.

CASE STUDIES CASE 1: Confidentiality in an Occupational Health Unit The workplace and the nature of the work undertaken can cause or contribute to employee health problems. Whether the causes are work-related or not, sickness and ill health can have significant negative impacts for employees and employers alike, including the financial costs of absenteeism. Nurses have one of the highest absenteeism rates of all employment groups. Statistics Canada Labour Force data show that “in 2010, on average 19,200 Canadian nurses were absent from work every week due to illness or disability” (Berry & Curry, 2012, pp. 36–37). Referencing the same data, the authors note that “nine percent of public-sector health care nurses who usually work at least 30 hours per week were absent due to illness or disability,” which is “nearly twice the rate of all other occupations, and remains higher than all other health care occupations” (p. 37). In addition to the human costs of nurse absenteeism, there are economic costs, which the Canadian Federation of Nurses Unions estimated to be 710 million dollars in 2010 (Berry & Curry, 2012, p. 37). Employers have introduced policies and programs to address issues of employee health, particularly as it impacts on workplace productivity and absenteeism. Policies and employment contracts typically specify such things as the number of paid sick days. Some employers have introduced attendance-management programs in response to high absenteeism rates. As part of these programs, employees may be expected to attend an interview once they

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have taken a specified number of sick days. These meetings are typically presented as a way to help the employee reduce sick days but employees may feel coerced to release confidential information to management. Large employers often have occupational health units that employees can visit to seek help for work-related health problems and employee assistance programs for help with health, family, and work-related problems. Nurses working in such units may face special challenges with respect to confidentiality. They often work alone, without the support of other health professionals on site. The patient and the nurse are often both employees of the same company or institution. Occupational health nurses may find themselves conflicted because they are expected to represent the interests of both the management and the patients/employees. Managers may have different priorities than the occupational health nurses and attach less weight to confidentiality. When the occupational health unit is in a hospital and not only is staffed by nurses but also has nursing staff as its clientele and nurses in management positions, issues of confidentiality may have added layers of complexity, as the following case illustrates. Amir Patel is the nursing manager of the occupational health unit in a large downtown hospital. He reports to the vice-president of human resources, Sarah O’Leary, who is also a nurse. Amir and Sarah have sometimes disagreed on practices related to confidentiality. When the hospital implemented an attendance program a year ago, Amir worried that the program could be a way of getting around the occupational health unit’s confidentiality safeguards. Since the program was implemented, his worries have been confirmed as he has heard that nurses attending program meetings feel pressured to disclose their health information and that some nurses have not been taking sick days to avoid being in the program. Amir’s worries are further reinforced in light of an issue that arises concerning Evelyn Green, a registered nurse who has been employed by the hospital for twenty years. Evelyn has had an excellent employment and attendance record. However, since her husband’s suicide a year ago she has taken eleven sick days. According to the hospital policy, she is entitled to twenty paid sick days per year, but after ten days she must enroll in the employee attendance program. Evelyn comes to the occupational health unit and asks Amir for help to get into a recovery program. Amir immediately arranges for her to be assessed

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by an alcohol and drug use program, which has a contract with the hospital. Plans are made for her to enter a recovery program on a priority basis. Amir also fills out a form certifying that due to illness Evelyn will be on sick leave for a minimum of one month. In keeping with accepted procedure, the form did not indicate the nature of the sickness. This omission was important to Evelyn, who feared that she might lose her job if her employer learned about her admission to a substance-use rehabilitation program. Upon receiving the form, Sarah contacted Amir and asked him the nature of Evelyn’s illness. Amir indicated that he could not share that information with her because it was confidential. Sarah did not press the issue further, and Amir thought that was the end of the matter. However, a few days later Sarah sent an email to Evelyn asking her to attend an attendance program meeting with her, informing Evelyn that the purpose of the meeting, and the goal of the program, was to support Evelyn and help her to return to employment as soon as possible. Evelyn called Amir and asked for guidance. She told Amir that she did not feel mentally and physically strong enough to attend what she feared would be a difficult meeting in which she would feel pressured to disclose the reason for her sick leave. Amir offered to meet with Sarah on Evelyn’s behalf and to explain that Evelyn was not well enough to attend. Evelyn thought this was a good plan and thanked him. When Amir met with Sarah, Sarah was irritated that Evelyn was not participating. She said to him: “I have heard that Evelyn has a drinking problem. Is that true? I understand that it must have been difficult for her to deal with her husband’s suicide and I am sympathetic. But I am doubtful that she will ever be able to come back to work and be reliable. I need to know what is going on with Evelyn so I can do proper resource planning.” After listening to Sarah, Amir maintained that he would not provide the information Sarah was seeking. Sarah responded: “I know this is hard for you. But I have to be guided by what is best for patients and staff. I need the information on my desk by tomorrow morning. And don’t forget that I too am a nurse and take confidentiality very seriously. I won’t disclose this information to anyone.”

Case 1: Commentary The main issue raised in this case involves a conflict between the employer’s need to know (or claimed need to know) and the occupational health nurse’s

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duty of confidentiality. A related issue is raised by Sarah’s request and expectation that Evelyn meet with her as per the protocol for the attendance program. In the background, there may be other issues, such as the stigmatization of and discrimination against persons with substance dependency problems. A first question to raise in analyzing this case is whether the information being sought is confidential. The answer to this question is plain: Evelyn’s information clearly pertains to her health status. Moreover, it was acquired in the context of a health care service and initially shared with a health professional, Amir, under a duty of confidentiality. It might seem that because the person whose information is at issue is an employee, and the information is related to her work, the protection afforded to hospital patients do not apply. However, Evelyn’s status as an employee is irrelevant as far as the confidentiality of the information is concerned. Whether Evelyn is called an “employee,” or a “client,” or a “patient,” when she initially made this information available to nurses in the occupational health unit, she trusted them to respect her privacy and expected confidentiality. A second question is whether the fact that Sarah is a nurse makes any difference as concerns whether sharing this information with her would be a breach of confidentiality. A key point here is that Sarah’s claimed “need” for the information is not for purposes of providing care to her. Although Sarah is a nurse, and as such bound by professional duties of confidentiality that nonnurse managers would not be, she is not part of Evelyn’s “circle of care.” Even if she were, it is clear that there is no “implied consent” since Evelyn is explicit that she does not want to share the information with management. Her role and responsibilities are quite different than Amir’s, who although a “manager,” does not represent the employer and is clearly involved in the provision of care to Evelyn. Although Sarah is a nurse, she is not in a nursing relationship or role with Evelyn, unlike Amir. Her comments about her professional responsibilities as a nurse regarding confidentiality are beside the point because the issue is not about whether she would disclose the confidential information to someone else, but about whether Amir, who has acquired it in a nursing role, should release it to her. The worry about sharing it isn’t that she might disclose it to someone else but that she would use it to make decisions that could jeopardize Evelyn’s employment situation and be harmful to her. Given that the information is indeed confidential, and that to share it with Sarah would be a breach of confidentiality, a further question is whether this is the kind of situation in which confidentiality could justifiably be breached.

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Sarah claims that she “needs” the information. As indicated above, whatever her need, it is not for the purpose of providing care to her and is not consented to by Evelyn. Disclosing it to her would be a breach. Could such a breach be justified? If Sarah needed the information in order to prevent some serious harm to patients or staff and Evelyn would not herself disclose the information, she could have a valid argument for accessing the information despite its confidentiality, and Amir could have a valid reason to share it with her despite his duty to preserve confidentiality. However, there is no such harm to be avoided in this instance. Although Sarah has a legitimate concern about ensuring continuous care to hospital patients, and her concerns about replacement costs are also real, Evelyn is not putting others directly at risk of harm. Moreover, Sarah does not need to know the nature of Evelyn’s illness in order to address the legitimate concerns she has in her role as human resource manager. Because the information is confidential and no compelling justification for breaching confidentiality exists, it is inappropriate for Sarah to demand the information from Amir, and he would be failing in his duty as a health professional if he were to give it to her. Doing so would be inconsistent with the nursing profession’s code of ethics and standards of practice, as well as with the requirements of the law. There are good reasons why this is so: Inappropriate sharing of health information can cause harm to patients. Regardless, sharing this information without consent would undermine trust in the occupational health unit and those who worked there. If employees could not trust the unit to safeguard their confidential information, they could be less than truthful and forthcoming when using the service, or avoid using it altogether. Amir has a dilemma. He is under pressure to disclose confidential information to his employer. This would mean breaching confidentiality, without adequate justification, against his ethical and legal duty to respect patient confidentiality. If he does not comply with the demands of his superior, his own employment situation or career in the organization could be in jeopardy. However, if he does comply and violates his duty to preserve confidentiality, he would be sacrificing or compromising his integrity and the integrity of the occupational health department, and opening himself up to charges of professional misconduct for the breach. What options does Amir have? He could discuss the issue with Evelyn and ask her to release the information voluntarily. That is not a very good option because under the circumstances Evelyn might feel a sense of guilt or responsibility knowing that Amir’s job is at stake if she does not do as he asks.

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Clearly in this case, the best option for Amir would be to discuss the matter further with his superior, Sarah. As vice-president of human resources, she is responsible for ensuring appropriate staffing levels economically. This can be a significant challenge and she could herself be under significant pressure. Amir could acknowledge the legitimacy of her concern but simply remind her of the professional norms under which nurses and other health professionals practice. Indeed, as a senior nurse, even though she is in a management role and not part of the circle of care, Sarah should know that it would be inappropriate for Amir to share this information with her. It is remarkable that she appears not to know this, and even more remarkable if she does know this but is not concerned. Moreover, as a manager she should know that were she to threaten Amir with negative repercussions for preserving confidentiality she would be opening herself, and the organization itself, to charges of unethical and possibly illegal action. A compromise of sorts could be worked out. Although it would be improper for Amir to give to Sarah the health record or even to mention the diagnosis, Sarah does not need to know these details to carry out her planning and take action. She needs to know, in essence, approximately how long Evelyn might be off work. Without breaking confidentiality Amir could indicate that he expects Evelyn to be off work for a certain length of time and he will monitor her progress; he will update management and provide proper notice of her return, thus allowing time for effective planning. If Amir has any doubts about whether providing this general information to Sarah represents a breach of confidentiality, he could talk to Evelyn and explain to her the employer’s need to plan for continuous care in her absence. Although Amir has good arguments on his side, and in an enlightened workplace his position regarding confidentiality would prevail, the unfortunate reality is that some workplaces prove to be less than ideal. Many regulatory colleges require nurses to participate in a legal protection program and Amir may seek legal counsel when faced with an employer that does not respect his ethical duties. Issues concerning breach of confidentiality aside, this case presents other issues. Given that employers have no legitimate grounds for accessing confidential information from their occupational health units, they could be tempted to obtain it by other means. Since confidentiality would not be breached if employees themselves provided this information, pressure could be applied to have them do so, even if this were not required. Indeed, Amir’s initial worry that the Employee Attendance Program would be used to work around the unit’s confidentiality safeguards seems to be confirmed by his

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experience. To address this larger issue, it would be helpful for him to gather data on the extent to which employees in the program are, or feel, coerced to provide health information themselves, or go to work sick instead of taking a sick day once they have reached the point where taking a sick day would require them to enroll in the program. Until he addresses and resolves this problem with the employer, he should consider advising nurses to be silent about their health information in the attendance meetings and refer questions about their health information to him. Another issue raised by this case concerns Sarah’s attitude and beliefs regarding substance use. She is not alone in thinking that persons with substance dependency problems may struggle even after efforts at rehabilitation and that they may be less reliable. Moreover, substance dependency carries a stigma and many people see it as a weakness or personal failing. Nurses learn to be nonjudgmental with patients who have substance dependency problems but may not adopt this professional mindset when the patient is a colleague or an employee. Amir could consider ways of educating staff and management about substance dependency, such as by arranging for employee assistance program rehabilitation specialists and the mental health unit to prepare an online learning module about stress, substance dependency, and mental health problems. Indeed, perhaps Sarah might be persuaded that her office should co-sponsor such an initiative.

Case 1: Questions 1. More and more employers have attendance management programs like the one in this case study. Staff must report to the occupational health unit when they are away. The days away are tallied, and staff members who are away more than a specified number of days must meet with the employer. The goal is to develop a plan to reduce their sick days. Identify possible ethical issues with this type of human resources management program. What do you think about this approach? Support your position. 2. Students at post-secondary institutions have privacy rights. A professor receives a letter from the Academic Accommodation Student Support Centre. The letter states that a student should have double time to complete tests and exams. The professor says to this student, “What’s going on? You look fine to me. Why do you need more time?” Must the student

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tell the professor why accommodation is needed? Explain your answer with reference to privacy policy where you study or have studied. 3. You are a nursing student on a surgical unit at a teaching hospital. List the people who you include in the patient’s circle of care. Discuss whether the community nurse practitioner, the community physician, and community care coordinator would be included in that circle. When would you need explicit consent to share personal health information with another health care provider? 4. Sharing experiences and seeking support from colleagues is a common phenomenon in hospitals as in other workplaces. Spreading unfounded information and gossip can cause harm. In this case study, Sarah tells Amir that she has “heard that Evelyn has a drinking problem.” Suppose that Sarah had overheard this comment from nurses who were venting about how they “found Evelyn was not keeping up with the fast pace on the unit” and in consequence their workload was becoming heavier. What ethical issues do you think this raises? Under what circumstances would the information that “Evelyn has a drinking problem” be confidential? CASE 2: Disclosing Information to Patient’s Friends and Family In the previous case of the hospital occupational health unit, the third party who wanted confidential information was not an intimate of the patient and they were not primarily focused on the patient’s well-being. Often, though, requests for confidential information come from family members or significant others who share the nurse’s concern for the well-being of the patient. This intimacy and concern may seem to give these other parties a greater claim to access confidential information. Usually, patients are quite willing to share information with intimates, whose desire to know often arises out of concern. Perhaps they are worried or anxious about the patient, and knowing more will help them to cope with the situation. Perhaps knowing more will put them in a better position to help or support the patient. Nonetheless, sometimes a patient may not want family members or intimates to have access to health-related information, or may want family to know some things, but not others; or may want only certain family members, and not others, to be informed. A variety of reasons can come

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into play. Patients may be estranged from their families, or certain members of their families. Or they may want to protect family members from bad news. They may feel guilty or ashamed about their condition. The human immunodeficiency virus (HIV) can lead to acquired immunodeficiency syndrome (AIDS). HIV is mainly transmitted through intravenous drug use and sexual activity. Sexuality is a deeply personal and private part of most people’s lives. Partners, friends, family, and even health care professionals may judge lifestyle choices harshly and negatively. Consequently, patients may choose to keep certain dimensions of their lives secret. Indeed, some people conceal aspects of their sexual lives even from those with whom they are sexually and emotionally intimate. HIV and AIDS are chronic health conditions that can be managed with a regime of medications, healthy living, and medical supervision. There are medications that can prevent transmission to a fetus through breast feeding. Screening protocols to detect HIV have been established in a number of areas in the health care system. Employers and educational institutions cannot ask for testing for HIV or AIDS. However, persons seeking health insurance or certain health services, such as fertility treatment, may be asked to be tested for HIV and AIDS. The screening can indirectly reveal information about patients’ sexual history and activity that they would rather keep to themselves. In the following case concerning information about HIV, confidentiality issues are complicated by the fact that testing for HIV was done in the context of a treatment involving a couple. After four years of trying unsuccessfully to start a family, and numerous medical consultations, Cheryl and Lucas have been referred to a fertility clinic. Lucas is a nurse in a busy emergency department. Cheryl is a respiratory technologist in the same hospital. According to policy, the clinic screens couples for a number of health problems, including HIV. The couple receive pre-test counselling about the purpose of the testing and are required to sign a waiver allowing the clinic to share all clinically relevant information with both partners. If either of them tests positive, treatment will be interrupted until after a counselling team, including a social worker and psychologist, meets with the couple and discusses options. Cheryl’s test for HIV is negative, but Lucas’s is positive. In a private post-test meeting that he alone attends with the clinic nurse, Ethel O’Neill, Lucas reveals that he had a sexual encounter when he was out of town at a

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conference, and that Cheryl does not know about it. He is afraid that Cheryl will leave him if she learns of this and does not want her to know. He plans to tell Cheryl that he tested positive, but that his exposure to the virus must have been due to a recent incident when he was cleaning up needles from a park across the street from their house that is frequented by drug users. Ethel says she does not condone his deception but agrees not to tell Cheryl what he has confided about how he contracted HIV .

Case 2: Commentary Ownership of, and rights with respect to, Lucas’s information is relevant to this question. The nurse-patient relationship is somewhat complicated in this case because more than one person is involved in the treatment for which Lucas presented. There is even some ambiguity about whether Cheryl and Lucas constitute two discrete patients or are in some sense a single patient. Although the information at issue is clearly confidential, some uncertainty exists as to whether Lucas alone owns and has the exclusive right to control it. After all, Lucas and Cheryl presented at the clinic as a couple and not as two strangers. It is as a couple that they would be the recipients of the treatment. Thinking of the two together as a sort of “combined patient” rather than as two discrete patients would suggest that each of them should be privy to whatever information is generated or otherwise brought to light in the process. However, this line of argument stretches the concept of confidentiality as it is traditionally understood. In the standard confidentiality case, the patient is normally (and unambiguously) a discrete individual. But the case of Cheryl and Lucas is different. The Ethics Committee of the American Society for Reproductive Medicine (2018) notes that “Fertility care providers routinely advise couples that they are both part of the treatment dyad, and encourage open communication and honesty” (p. 620). Regardless, the argument that Cheryl is entitled to this information insofar as she is a sort of co-owner depends in part on what they were told and promised when they began the program in the first place. In this case, they signed a waiver agreeing that “clinically relevant” information would be shared, but how Lucas contracted HIV is not “clinically relevant.” One of the factors that sets this case apart from the previous case is that one patient is putting another at immediate and significant risk. Although

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Cheryl has not tested positive for HIV , she would have been exposed to it, since she and Lucas were actively trying to conceive. Moreover, it could be that she is in the “window period,” which could be up to three months depending on the person and the type of test, during which time the antibodies or antigens that indicate HIV do not show up in testing. If she is in fact infected, and has unprotected sex with someone else, she could infect that person. As well, if she managed to conceive, there is a risk that the virus could be transmitted to the fetus. Moreover, depending on the circumstances, in virtue of the fact of exposure alone a post-exposure prophylaxis may be indicated. If, on the other hand, she is not infected, she would be at risk of becoming infected if she continued to have unprotected sex with Lucas. Whether she is infected or not, there are good reasons why it would be important for her to know Lucas’s HIV status so that she could take steps to reduce risks both for herself or for others, were she to have unprotected sex with them. If Lucas had refused to inform her of his HIV status and refused to give the clinic his permission to do so, it would be a breach of confidentiality for the clinic to inform her. Whether such a breach would be justified is a different question. Confidentiality, after all, is not an absolute value, and there are exceptions to the duty to preserve confidentiality. Given the significant risks and the opportunity for Cheryl to reduce these risks, there would indeed be justification for breaching Lucas’s confidentiality and an argument could be made for disclosing to Cheryl in those circumstances. Regardless, the clinic would report the results of Lucas’s test to public health, which in the course of contact tracing would contact Cheryl to inform her that she had been exposed and would counsel her accordingly. However, Lucas is not refusing to share information about his HIV status with Cheryl. Rather, he is proposing to deceive her as to how he acquired HIV in order to keep concealed the fact that he has been unfaithful to her. Ethel knows how Lucas really acquired the virus because he confided that information to her and she knows that he plans to deceive Cheryl. She has made it clear to him that she does not condone his deception, but she is not being asked or expected to lie to Cheryl on his behalf. However wrong it is for Lucas to deceive Cheryl about this, Ethel would not be justified in disclosing to Cheryl how he contracted HIV, and neither would public health. The purpose of reducing risk is compelling in the case of HIV; however, to achieve this purpose it is not necessary for Cheryl to know Lucas acquired it. Moreover,

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although he has signed a waiver agreeing to share clinically relevant information with Cheryl, how he contracted HIV is not clinically relevant. Learning that one is HIV -positive can be devastating given the potentially grave consequences. Understandably, Lucas may be in shock and not know how to deal with the news. He should, of course, be offered post-testing counselling, as is the standard practice. Also, he should be offered support in informing Cheryl of his HIV status, and asked to consider being honest and open with her about how he contracted it. The clinic should also assess its pre-testing counselling to ensure that its practice and policy regarding confidentiality are appropriate and clearly communicated to couples using its services, particularly as concerns the meaning of “clinically relevant” in its waiver.

Case 2: Questions 1. The nursing profession places an emphasis on the importance of relationships with patients and their families. How would you compare and contrast the nurse-patient relationship, on the one hand, with the nurse-family relationship? What reasons can you think of for and against thinking of the whole family as the patient? 2. Suppose Lucas asked Ethel and the medical record manager to remove the test and test result from his health record. He knows that his personal health information belongs to him and he can control who has access to information in his clinical record. He says he has the right to put this data in a “lockbox.” Is he correct about the right he is claiming? What is the “lockbox” he is referring to? 3. Reflecting on your nursing experience, has there been a time when a patient asked that information not be given to a family member? How did you feel about this? What did you think about the implications of the request and what did you do? 4. In this chapter we have discussed the principle that the disclosure of confidential information, when justified, should be limited to what is necessary for the purpose for which it is disclosed. How does the concept of “clinically relevant” relate to that principle here? Explain.

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5. In small towns and villages people tend to know one another and to know more about one another than do those who live in larger communities. What special challenges do you think nurses in such settings may face concerning confidentiality that nurses in large urban centres do not? Identify a few and suggest how you would address them. CASE 3: Release of Confidential Information to Third Parties without Consent Privacy and confidentiality challenges arise frequently in emergency departments and are often complex. Decisions must be made quickly under stressful circumstances. The need for patient information may be urgent. The practice environment itself presents its own set of challenges. There are physical barriers to providing privacy and ensuring that conversations are confidential. Stretchers may be lined along hallways; patients may be separated only by curtains. When no private interview area is available, or staff has no time to take the person to a quiet area, assessments and interviews may have to be completed within hearing of other patients and families. Information may come to light that patients would prefer to remain hidden. Relatives, friends, health care professionals in other departments and organizations, the press and media outlets, and police officers may ask for information nurses or their colleagues have received or acquired in confidence. In some instances, nurses may be required to provide confidential information to third parties. Issues of suspected abuse or illegal activity can pose especially difficult confidentiality issues. Nurses in emergency departments may be the first health care professionals to meet people who are victims or witnesses of violence. Domestic or family violence is an under-detected and under-reported health problem. A minority of cases are reported to health care professionals and the police. This silence is understandable. Often, when victims or witnesses do report there are major social, financial, and emotional consequences, especially when children are involved. The kind of holistic assessment that nurses do includes being vigilant for abuse, neglect, and domestic violence across the lifespan. Reviewing best practice guidelines for woman abuse, Fitzgerald et al. (2012) encourage nurses in all practice settings to screen for woman abuse, noting that “nurses are well-positioned” to do this “because they are accessible, enjoy a high degree of public trust, and work in a variety of settings” (p. 19). Nurses can play a critical role in identifying, assessing, responding to,

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and reducing the continuation of a pattern of living with violence. In addition to screening and assessment, nurses can help organize a safety plan and link women to community supports, such as counselling services or shelters. Health organizations have complex communication and organizational systems. Nurses in the emergency department collaborate with interdisciplinary teams, including physicians, social workers, chaplains, and volunteers. They must establish who is included in the circle of care and also when and why they can disclose requested information. They need to be aware of ethical responsibilities and organizational policies regarding disclosure with and without patients’ consent. Nurses should know what is legally required in their jurisdiction regarding mandatory disclosure. Disclosure of confidential information may be necessary to protect vulnerable persons at risk of serious and imminent harm. Nurses may need to consult with specialists in domestic abuse involving children, adults, and older persons when they suspect neglect and abuse. Administrators and quality-risk management staff may need to become involved in complex cases. Suhita is the nurse team leader in the emergency department in a downtown urban hospital. She has 24 years of experience and is well respected by the team. The surrounding community is ethnically diverse, with thousands of young families and older adults living in the area’s many apartment and condominium buildings. Frequently these residents come to the emergency department for help because they do not have a family physician available on weekends. The emergency department employs two primary care nurse practitioners. Other resources available to the emergency staff are a domestic violence team and a geriatric nurse clinician specializing in emergency care. In the past year all of the staff have had specialized training in the assessment of abuse and neglect. On the Sunday of a long weekend, several patients had arrived by noon. First came Jason, aged 20, a university student living in residence. Jason had a serious but not life-threatening gunshot wound. His roommate had found him and called 911. He had told his roommate that he had attempted to end his own life. Soon after he was rushed into the trauma room, police officers arrived and told staff that they believed he was a victim of a gang shooting. They wanted to know his name, age, and the nature of his injuries. They also wanted to interview him. Suhita was aware of the hospital policy, which had been drafted in response to new laws regarding mandatory gunshot

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reporting in the province. The policy indicated that the institution was obligated by law to report that it was treating a patient for a gunshot wound and to provide the patient’s name. Suhita had been opposed at the time the law was being proposed. Reluctantly, she provided the patient’s name to the police but refused to comment further on the nature of his injuries beyond confirming that he was indeed being treated for a gunshot wound. Additionally, she informed the police that Jason was not well enough to be interviewed and that even telling him that the police wanted to interview him could cause him undue distress. A second case involved Kate Parker, a 35-year-old woman with a bruised eye and broken arm. She came with her twin sons, aged three years old. The boys had bruises on their arms and backs. Kate initially explained that they had fallen when they were playing on playground equipment. Suhita noted that the injuries were not consistent with playground equipment injuries and asked the domestic violence team to assess the family. The team established a relationship with Kate, who after a time admitted that the children’s injuries were not caused by playing on the equipment. They carefully probed further, suspecting that Kate herself could be a victim of abuse. She disclosed that her husband had hit her because he was frustrated with her but she blamed herself because she had been giving all her time and attention to the twins. She did not want to involve the police. The team informed her that although they did not have a legal obligation to report suspected abuse concerning her, they did have a legal obligation to report their suspicion that the children’s injuries were caused by abuse to the Children’s Aid Society ( CAS ). In discussing the matter further, Kate agreed that the involvement of the CAS would be in the best interest of the children because her husband had to get the message that taking his anger out on the children was not acceptable. When Kate asked to call her husband to tell him what was happening, Suhita explained that if he was alerted about the CAS involvement, their investigation could be compromised. Kate understood. After considering all her options, she worked out a plan with the domestic violence team that she and her boys would move to a safe home and not return to their residence. Suhita was relieved that Kate chose this option. Kate would be protected from involvement with her husband during the investigations and would receive counselling and legal advice. Mrs. Leblanc, age 75, came to the emergency department with her only son, James. She had a fractured hip and shoulder. Her son had called 911

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(emergency response services) saying that his mother had fallen in the bedroom and he couldn’t lift her. Suhita noticed that Mrs. Leblanc was nervous and evasive when asked about her fall. In addition, she had bruises on her arms and back, which she said came from falls in the bathroom. It was obvious to Suhita that the bruises could not have been caused by falls. Abuse seemed a more likely explanation. Her suspicion of abuse was heightened when one of the nurses remembered that recently James himself had been brought by the police to emergency in connection with substance abuse. The police had found him inebriated and causing a disturbance in a shopping mall. They had initially considered charging him but when they learned that he was his mother’s primary caregiver decided it would be more helpful to bring him to the emergency department which, they hoped, would connect him with resources to address his drinking problem. In the emergency department, James had said he would go to Alcoholics Anonymous and stop drinking for his mother’s sake. The community home care nurse had followed up and reported that his mother was receiving good care from him. Considering all this information, Suhita decided to ask the hospital’s geriatric nurse specialist to assist in assessing Mrs. Leblanc for physical abuse. They met with her in a private area without her son present. After initially being evasive, Mrs. Leblanc revealed that her son was rough with her and had pushed her when he was helping her walk to the bathroom during the night. Nonetheless she excused him, saying that he had his own problems and couldn’t cope with her. She admitted that he sometimes lost his temper when he drank, but that afterwards he always apologized and treated her very well. In further discussion, she said that she had made James her power of attorney for financial matters. Since she could not get out to the bank, he was cashing her pension check to pay the rent and household bills but was also taking out money for himself, which left her short. The geriatric nurse specialist consulted with colleagues on the domestic violence team. The team agreed that Mrs. Leblanc’s home was not safe because James was likely to be abusive again and they suspected that he had been more abusive in the past than Mrs. Leblanc was admitting. They believed that the situation was serious enough that police should be involved. Mrs. Leblanc agreed that her home was unsafe but refused to involve the police, saying that doing so would bring shame on her and her son. She said she loved her son and that in his heart he was a good person. Although the team would rarely breach confidentiality in a case such as this, they felt that if Mrs. Leblanc

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would not report to the police, they would do so on her behalf. Suhita was worried that if the team did breach confidentiality it would undermine the trust in light of which Mrs. Leblanc had shared the confidential information in the first place, and undermine her relationship with her and other nurses. She was aware that although there is a legally mandatory duty for nurses to report elder abuse that occurs in residential care, there was no such duty in the hospital emergency context. Kate’s case was still fresh in her mind and she wondered what justification there was for respecting the patient’s decision not to involve the police in Kate’s case but not in Mrs. Leblanc’s. She spoke privately with Mrs. Leblanc to try to persuade her to involve the police. She expressed empathy for her son as well as for Mrs. Leblanc and explained that, in addition to her needing protection from her son, her son needed to realize the seriousness of his behaviour and get help for his drinking problem. The situation they were living in was not good for either of them; they both needed help. Mrs. Leblanc agreed. The police arrived, photographed her injuries, took a statement from her, and interviewed her son.

Case 3: Commentary Nurses learn from the beginning of their education that they have a duty to protect confidential health information and not to share it without patient consent except if there is a serious risk of harm that cannot be removed without disclosure, or if they are required to do so by law. Patients depend on them to be trustworthy guardians of their confidential information. The decision to disclose confidential information without consent requires careful assessment of the situation and options. Often nurses work with colleagues to develop a response to ethically challenging situations. Suhita and her colleagues had to deal quickly with all of these challenging issues in a hectic and demanding environment. Being knowledgeable about relevant legal rights and responsibilities and about hospital policy enabled her to act quickly and decisively. It was also helpful that she was able to collaborate with colleagues with expertise in family violence and in geriatrics and knew about resources available for the patients involved. As concerns Jason’s case: In most Canadian jurisdictions, including Jason’s, there is a mandatory reporting requirement for gunshot wounds. These laws are fairly recent in Canada—Ontario’s was introduced in 2005—and have

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been quite controversial (Martin, 2016). Many health professionals and organizations opposed such laws, for several reasons (Pauls & Downie, 2004). One of the main reasons is that if patients know that their care providers will be legally required to breach confidentiality, they may not seek needed treatment. Moreover, it is argued that the mandatory requirement undermines the therapeutic relationship, compromising the primary mission and orientation of health professionals to the good of their patients by subordinating that mission and orientation to that of law enforcement. Supporters argue that the overall societal good of preventing and investigating crime takes priority, particularly in the context of rising concern about gang violence. Suhita was herself opposed to the mandatory reporting requirement but recognized that she was bound to comply regardless. However, in doing so she forcefully foregrounded her therapeutic relationship with the patient, making clear to the police that her concern and commitment was to the health of the patient. The information she had been provided was that Jason’s wound was self-inflicted, which was at odds with the police suspicion that he was a victim of a gang shooting. Suhita was not at the time in a position to determine with any certainty the truth of the matter about the cause of the wound—Jason could have been lying to his roommate, or the police could have been misinformed or have jumped to conclusions. Either way, her primary concern is to restore Jason to good health, which is quite different from and potentially at odds with the primary concern of police, which is to investigate crime. To treat the gunshot wound, it doesn’t make a difference whether the wound was self-inflicted. However, to treat Jason it will make a difference whether he is or was suicidal, in which case it would be all that much more important not to involve the police any more than strictly required. In Kate’s case, it was appropriate for the domestic violence team to assess her and her children. Kate felt safe to share information not only about the children’s injuries but also about her husband’s abusive behaviour toward her. The team demonstrated respect for Kate by not coercing her to report the incident in which her husband had harmed her. This approach is consistent with best practices in nursing. Fitzgerald et al. (2012) note that it is “the woman’s right to choose if she wishes to have police involvement and she must consent to this involvement prior to the nurse initiating such action,” and, moreover, “nurses must respect the woman’s decision and advocate for her right to choose” (7). However, although in “Canada, there is no mandatory obligation to report woman abuse to the police” (p. 7), it is mandatory to report suspected child abuse.

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The team’s approach gave Kate time to think through the options available to protect her children and herself. Because of their respectful approach, she did not feel betrayed or controlled. Suhita had good reason to challenge her wish to let her husband know what was happening. The team had a serious obligation to reduce the possibility of future risk to the children. Advance warning gives suspected offenders time to tailor their evidence and may put children or spouses in even greater danger. If Kate’s husband had been informed of the Children’s Aid Society involvement, he might have changed his story before being interviewed. Suhita was fortunate that there was a geriatric nurse specialist available and she found it helpful to consult with her. Geriatric nurses would be familiar with patterns of abuse in the case of older people, and in several ways Mrs. Leblanc was typical. Financial abuse is the most common form of mistreatment, and in discussion with Mrs. Leblanc they were able to learn that not only was she emotionally and physically abused but also was being financially exploited. Older people are often deeply embarrassed about being abused and conflicted about their feelings when the abuser is their child. Many fear re-victimization if they tell anyone about their situation or involve health care professionals, lawyers, or the police. Suhita and the geriatric nurse specialist demonstrated respect for Mrs. Leblanc’s privacy by taking her to a private room and by talking with her alone. By building trust, they helped her to disclose to them what was really going on. This put them in a difficult situation though because what she disclosed to them about her situation and her son’s behaviour confirmed their suspicion that she was at risk of harm. The domestic violence team believed the risk was serious enough that they were prepared to report the case to the police if Mrs. Leblanc would not. Suhita knew that there was no duty to report in this case, but appreciated that her colleagues on the domestic violence team felt ethically obligated to do so all the same. Suhita was greatly aided in working through and resolving the ethical challenges she faced by experienced and talented resource people who were readily available in the emergency department, including a domestic violence team and a geriatric nurse. Not all emergency departments are so well resourced.

Case 3: Questions 1. What are the arguments for and against mandatory disclosure of gunshot wounds to the police? Which side of the argument do you agree with, and

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why? Where there is mandatory reporting of gunshot injuries, do you think the law should exclude self-harm attempts or not, and why? Do you think it is inconsistent for someone to believe that there should not be mandatory reporting of gunshot wounds but should be mandatory reporting of suspected child abuse? 2. Why is it mandatory to report suspected abuse or neglect of children and not adults? Do you think there should be mandatory reporting of abuse of people of all ages? Why or why not? Do you think that ageism played a part in how the team responded to Kate’s confidential disclosure of abuse, on the one hand, and Mrs. Leblanc’s, on the other? 3. What reasons can you think of as to why it is mandatory for health professionals to report suspected elder abuse in a retirement home or long-term care home but not in other health care settings? Do you think it should be mandatory for health care professionals to report elder abuse in all health care settings? Discuss your ideas in light of ethical principles. 4. Why do victims of abuse sometimes refuse to report that they have been abused to the police? Do you think nurses who become aware of abuse in confidence should respect the decision of an abused woman not to report? Support your position. CASE 4: Nurse Privacy and Social Media Most nurses use social media of one kind or another in their personal lives, as do other members of society. Additionally, nurses use the Internet and social media to advance professional goals. Wolf et al. (2015) note that “several nursing professions and health organizations ... successfully use the Internet and social media to extend their services virtually in various ways, such as in educational programs, community health networking groups, and information about health resources and regarding best practices” (p. 70). However, they also underscore that the use of social media carries serious risks and caution that nurses “must understand how to separate their personal and professional life virtually when using the Internet and social media to communicate with peers, patients, family, and friends” (p. 69).

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The case below concerns a nurse who was disciplined by her regulatory body for posting social media content criticizing the care her grandfather received in a palliative care facility. It raises questions about the boundary between personal and professional life and about the right to freedom of expression as that right is limited by professional responsibilities. Information about the case, and all quoted material, is taken from the 2016 Decision of the Discipline Committee and the 2017 Penalty of the Discipline Committee of the Saskatchewan Registered Nurses Association (SRNA). Carolyn Strom’s grandfather died in January 2015. The following month she posted a Facebook message, which she also tweeted to the Minister of Health, criticizing the palliative care staff at St. Joseph’s Health Facility in Macklin, Saskatchewan. She wrote: My grandfather spent a week in palliative care before he died and after hearing about his and my family’s experience there ... it is evident that Not Everyone is “up to speed” on how to approach end of life care ... Or how to help maintain an Ageing Senior’s Dignity (among other things!) So ... I challenge the people involved in decision making with that facility to please get All Your Staff a refresher on this topic AND more ... to those who made. [his] last years less than desirable, Please Do Better Next Time! And a caution to anyone that has loved ones at the facility mentioned above: keep an eye on things and report anything you Do Not Like! That’s the only way to get some things to change. She subsequently posted several other messages on Facebook and twitter responding to people who commented on her messages, saying that “as an RN and an avid health advocate myself, I just HAVE to speak up! Whatever reasons/excuses people give for not giving quality care, I Do Not Care. It. Just. Needs. To. Be. Fixed. And NOW !” She suggested that some of the nurses “do not actually care about” their patients, and that for them nursing was “just a job, with a paycheque.” She acknowledged that some facility staff “provided excellent care” but urged those who “made Grandpa’s last years less than desirable” to “do better next time.” As the social media exchange unfolded and attracted increasing attention, including from residents’ family members who were worried by Strom’s

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claims, nurses in the facility became aware of it. According to one staff member, “staff felt demoralized about the Facebook post and they were also angry about it as they saw its contents as [a] one sided and an unfair attack.” One of the facility nurses, “writing on behalf of my RN colleagues and myself,” filed a complaint with the SRNA , the regulatory, disciplinary body in the province, saying: “ We find it unprofessional in that it specifically names our facility and location on page one then she identifies herself as a RN on page three. With previous SRNA instructions and caution warnings to all members about appropriate use of social media, we find her posting inappropriate.” Following an investigation, the SRNA proceeded with a disciplinary hearing. The SRNA Discipline Committee assessed Strom’s actions against the duties and expectations of nurses laid out in several authoritative regulatory documents and considered the defence that she provided. The committee noted that she represented herself as “an avid health care advocate” and “saw” her action “as part of her role as an advocate nurse,” but rejected this line of argument. Along these lines, it was significant that Strom did not follow proper channels in expressing her complaints but instead went public without acquiring knowledge of all the facts and without first having raised the issues with the facility. The committee also rejected the claim that the “Code and Standards did not apply to her, because she was not acting as an RN,” finding “that Ms. Strom’s purpose in identifying herself as a registered nurse was to give credibility and legitimacy to her comments.” It concluded that her social media messaging did “have a connection to her position as a registered nurse.” The Discipline Committee judged that she was guilty of professional misconduct under the Nurses Act and that she had breached provisions in the Code of Ethics and the Standards & Foundations Competencies. In a subsequent hearing to determine penalties, she was issued a reprimand and several conditions were set out for her to be allowed to continue in practice: She would have to review the Standards & Foundations Competencies and the Code of Ethics and write a “self-reflective essay” on each indicating that she understood the expectations and would be able to act in conformity with them in the future. Additionally, she would have to prove that she had completed the CNA online ethics module. She was fined $1,000, and ordered to pay $25,000, a portion of the costs of the SRNA disciplinary process. The decision was opposed by the Saskatchewan Union of Nurses and by a number of nurses and nursing students. A GoFundMe page was created and in less than two weeks it received more than enough to cover the $26,000

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Strom was required to pay. Strom’s appeal of this decision was dismissed by the Saskatoon Court of Queen’s Bench in April 2018. She appealed that dismissal judgment to the Saskatchewan Court of Appeal, which heard her case in September 2019 and will have issued its decision by the time this book is published.

Case 4: Questions 1. The Discipline Committee insisted that “it does not seek to ‘muzzle’” registered nurses from using social media, but warned that “registered nurses must conduct themselves professionally and with care when communicating on social media.” Nonetheless, a popular nursing blog that publishes “opinion pieces written by nurses and nursing students” and “promotes critical analysis and debate on issues related to health, social justice, policy, politics” has been very critical of the SRNA on this and other points. One piece written by several graduate nursing students claims that “Strom was speaking out as a grieving grand-daughter, not as a nurse” and asks, “Will we, as future leaders and patient advocates, have to fear speaking up in our private and/or professional lives as well?” (Stake-Doucet et al., 2016). What do you think? The blog has published several pieces by nursing students on this issue, and many comments. As an additional exercise, review the comments on the blog and discuss in class. 2. The Discipline Committee noted that “Carolyn Strom is a professional bound to act with integrity and in accordance with the Code of Ethics,” implying that she had not acted with integrity. How do you see the concept of integrity applying in this case? 3. Social media can support professional growth and be used as an educational tool. Some educational institutions and employers encourage reflection on nursing practice by means of social media. Study the policies and expectations on the use of social media in your organization or regulatory college. Do you think the expectations are too strict, too lax, or out-of-date with how information is shared in a digital age? Do you think they infringe on the right of nurses to have a private life, or to advocate on behalf of patients?

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4. Reflect on how you and your colleagues or fellow students use social media and discuss implications this may have for your professional life. 5. Several professional and regulatory bodies for nurses have issued guidelines or position statements on social media. For example, the Nova Scotia College of Nurses (2019) and the International Nurse Regulator Collaborative (2017), a joint venture of organizations from around the world that regulate nursing, including the College of Nurses of Ontario and the College of Registered Nurses of British Columbia. Select a guidelines document for review and discuss. 6. A nursing student posts on his Facebook page that he is having a poor experience in his pediatric nursing placement. Although he does not identify the hospital, there is only one hospital where students have a pediatric clinical placement. The hospital’s privacy officer found the Facebook posting through their regular searches for privacy breaches. The privacy officer informed the nursing faculty chair that the student had breached the hospital’s privacy policy and he could not return to the hospital. Do you agree or disagree with this decision? Provide a rationale for your response.

REFERENCES Barnable, A., Cunning, G., & Parcon, M. (2018). Nursing students’ perceptions of confidentiality, accountability, and E-professionalism in relation to Facebook. Nurse Educator, 43(1), 28–31. Berry, L., & Curry P. (2012). Nursing workload and patient care. Canadian Federation of Nurses Unions. Brown, D.W. (2016). Social media policies for employers and employees: Regulatory and statutory considerations. The Journal of Nursing Regulation, 6(4), 45–50. Canadian Nurses Association (CNA). (2012). Ethics in practice for registered nurses: When private becomes public: The ethical challenges and opportunities of social media. https://www.cna-aiic.ca/~/media/cna/page-content/pdf-en/ethics_in_practice_feb_2012_e.pdf Clark, W.P. (1986). Minority opinion in Tarasoff v. Regents of the University of California. In T.A. Mappes & J.S. Zembaty (Eds.), Biomedical ethics (2nd ed., pp. 155–58). McGraw-Hill.

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College of Nurses of Ontario (CNO). (2019a). Practice standard: Ethics. https://www. cno.org/globalassets/docs/prac/41034_ethics.pdf College of Nurses of Ontario (CNO). (2019b). Practice standard: Privacy and confidentiality—Personal health information. http://www.cno.org/globalassets/docs/ prac/41069_privacy.pdf De Gagne, J.C., Hall, K., Conklin, J.L., Yamane, S.S., Roth, N.W., Chang, J., & Kim, S.S. (2019). Uncovering cyberincivility among nurses and nursing students on Twitter: A data mining study. International Journal of Nursing Studies, 89, 24–31. De Gagne, J.C., Yamane, S.S., Conklin, J.L., Chang, J., & Kang, H.S. (2018). Social media use and cybercivility guidelines in US nursing schools: A review of websites. Journal of Professional Nursing, 34(1), 35–41. Ethics Committee of the American Society for Reproductive Medicine. (2018). Ethical obligations in fertility treatment when intimate partners withhold information from each other: An Ethics Committee Opinion. Human immunodeficiency virus (HIV) and infertility treatment: a committee opinion. Fertility and Sterility, 110(4), 619–24. Fitzgerald, K., Lead, S.P., Aylward, D., Gatkowski, L., & Guruge, S. (2012). Best practice guideline—Woman abuse: Screening, identification and initial response (guideline supplement). Registered Nurses’ Association of Ontario. https://rnao.ca/sites/ rnaoca/files/BPG_Women_Abuse_Supplement_Only.pdf Gage-Bouchard, E.A., LaValley, S., Mollica, M., & Beaupin, L.K. (2017). Cancer communication on social media: examining how cancer caregivers use Facebook for cancer-related communication. Cancer Nursing, 40(4), 332–38. International Nurse Regulator Collaborative. (2017). Social media use: Common expectations of a nurse prepared by the International Nurse Regulators Collaborative. https://www.inrc.com/resources.htm Marnocha, S., Marnocha, M.R., & Pilliow, T. (2015). Unprofessional content posted online among nursing students. Nurse Educator, 40(3), 119–23. Martin, A.F. (2016). The adoption of mandatory gunshot wound reporting legislation in Canada: A decade of tension in lawmaking at the intersection of law enforcement and public health. McGill Journal of Law & Health, 9(2), 173–214. Nova Scotia College of Nurses. (2019). Social media practice guideline (Draft). https://cdn1.nscn.ca/sites/default/files/documents/consultation/ SocialMediaGuideline_ExternalReview.pdf Pauls, M.A., & Downie, J. (2004, April 13). Shooting ourselves in the foot: why mandatory reporting of gunshot wounds is a bad idea. Canadian Medical Association Journal, 170(8), 1255–56.

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Saskatchewan Registered Nurses Association (SRNA), Discipline Committee. (2016). Decision of the discipline committee (in the case of Carolyn Strom). Saskatchewan Registered Nurses Association (SRNA), Discipline Committee. (2017). Penalty of the discipline committee (in the case of Carolyn Strom). Slobogian, V., Giles, J., and Rent, T. (2017). SOCIAL MEDIA: #Boundaries: When patients become friends. Canadian Oncology Nursing Journal, 27(4), 394–96. Stake-Doucet, N., Dufour, C., Hudson, E., & Carrier, J. (2016). Nursing students want to talk about silence. The Radical Nurse. https://radicalnursesite.wordpress. com/2016/12/04/nursing-students-want-to-talk-about-silence/ Tabak, N., & Ozon, M. (2004). The influences of nurses’ attitudes, subjective norms and perceived behavioural control on maintaining patients’ privacy in a hospital setting. Nursing Ethics, 11(4), 366–77. Tobriner, M.O. (1986). Majority opinion in Tarasoff v. Regents of the University of California. In T.A. Mappes & J.S. Zembaty (Eds.), Biomedical ethics (2nd ed., pp. 151–55). McGraw-Hill. Warren, S.D., & Brandeis, L.D. (2001). The right to privacy. In D. Bonevac (Ed.), Today’s moral issues (4th ed., pp. 274–83). McGraw-Hill. (Original work published 1890). Westin, A. (1984). The origin of modern claims to privacy. In F. Schoeman (Ed.), Philosophical dimensions of privacy: An anthology. Cambridge University Press. Westrick, S.J. (2016). Nursing students’ use of electronic and social media: Law, ethics, and e-professionalism. Nursing Education Perspectives, 37(1), 16–22. Wolf, D.M., Wenskovitch Jr., J.E., & Anton, B.B. (2015). Nurses’ use of the Internet and social media: Does age, years of experience and educational level make a difference? Journal of Nursing Education and Practice, 6(2), 68.

CH A P T E R 6

JUSTICE Our philosophical theories and principles should serve as goals and guides to our practical and ethical reasoning and actions. If the theories are simply silent about central aspects of the lives of human beings such as concern for health and longevity, or they fit inadequately with relevant empirical facts and theories, or they are far removed from how we actually evaluate issues such as the multi-dimensional approach we take to concerns related to health and longevity, then the theories and principles probably need revising. —Sridhar Venkatpuram, 2013

Issues of justice concerning health and health care range from ones that arise in daily nursing practice to broader societal issues of public policy. How should patients in need of care or treatment be prioritized? How should a hospital allocate resources in its annual budget? Who should have a say or input, and to what extent, into this decision-making, and into other decisions about various hospital policies? How should governments decide how much money to allocate to the health care sector relative to other sectors, such as education, social services, the arts, or parks and recreation. What input should and can nurses have into such broad issues of public policy? How should our society address inequities in health status and access to health care across different segments of the population, and in particular as concerns Indigenous communities? These questions, spanning from everyday encounters with patients to matters of institutional planning and policy, through to governmental policy, engage with justice. This chapter covers a wide range of justice issues in health and health care and presents theories, concepts, and distinctions useful for recognizing and analyzing 273

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such issues. Becoming informed about justice issues and developing the ability to analyze them enables nurses to become more responsive and responsible participants in health care at all levels, from clinical encounters with patients to serving on a hospital committee making recommendations about patient safety policy and procedures, to adding one’s voice, however expressed, to public deliberation and debate about governmental health policy and planning. Cases in this chapter explore a variety of issues, including: tension between providing access to care and ensuring that care accessed is quality of care, fair and efficient allocation of student clinical placements, equitable allocation of nursing time and care, rationing of beds in intensive care, medical tourism, and jumping waiting list queue with private pay.

1. JUSTICE IN THE DISTRIBUTION OF HEALTH CARE AND RESOURCES FOR HEALTH The concept of justice has different meanings and applications. In its broadest sense, it has to do with determining what someone or some group is owed, merits, or is entitled to. Does the student really deserve an A+ on the assignment? Does the drug dealer merit a long sentence of imprisonment? Are people with physical disabilities entitled to special consideration in the hiring process? In the context of health and health care, however, the sense of justice that is most relevant is “distributive justice,” which pertains to fairness in the distribution or allocation of resources. Issues of distributive justice arise whenever the supply of resources falls short of the need or demand for them. Choices must then be made between competing resource needs and claims. Distributive justice overlaps with what today is called “social justice.” Resource allocation issues are prominent and pervasive in health care, as evidenced by the amount of attention they receive in the ethics literature and in media. Recent stories that have attracted the public’s attention include patients going to the United States for specialized treatment, shortage of longterm care facilities for the elderly, lack of services in rural and remote areas, and the relatively poor health and access to health care services in Indigenous communities. Such media reports have served to inform the public about problems with the health care system, and have foregrounded Canadians’ concerns about its sustainability.

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Several factors account for the high profile of health-related justice issues. A heightened consciousness about personal health and advances in health care have fuelled public expectations. Much more can be done to help people. Improved health care makes it possible for the elderly to become more elderly, for at-risk babies to become children (and later elderly), and for disabled persons to become more fully integrated members of our society. With these added benefits come added costs. There is significant concern about health care expenditure and a growing consensus about the need to set limits. In an effort to control costs, government, businesses, and other institutions give greater scrutiny to how resources are allocated: “efficiency,” “reallocation,” “cost containment,” and “prioritization” are some of the watchwords of the day. A critical understanding of watchwords like these is necessary for informed and responsible decision-making about justice issues—which in turn requires understanding the main theoretical perspectives on distributive justice. Issues of justice arise not only in the distribution of health care resources but also in the distribution of resources for health. Health care is but one determinant of health; other determinants, such as income and the natural and social environment, significantly impact health status. Inequity in living conditions with respect to determinants of health significantly contributes to inequity in health status as concerns socially disadvantaged groups. The work of the Truth and Reconciliation Commission (2015) has raised public awareness and concern about health inequities in Indigenous communities. Justice in this broader sense encompassing the determinants of health will be the focus later in this chapter in the context of “social justice.”

2. THEORIES OF JUSTICE Our views on particular issues of justice in health care are informed or influenced by our intuitions and values about fairness and the nature of distributive justice. Disagreements about these issues arise because different people have different intuitions and emphasize different values in thinking about them. Theorists probe existing intuitions and values pertaining to justice, and systematize them. In this they have articulated different theories about justice. Foremost among those theories are libertarianism, utilitarianism, and egalitarianism. The brief outline of these theories below does not do them justice,

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but in broad strokes it at least delineates different value orientations or perspectives from which issues of justice may be viewed and which will be further elaborated later in the chapter. 2.1. Libertarianism Above all else, libertarians value individual freedom or liberty. Issues such as which services should be made available, and made accessible under what terms and conditions, are to be decided mainly with reference to this value. Libertarians favour a free-market approach to resource allocation as being most compatible with the ideal of individual freedom (and additionally, most likely to yield an efficient distribution of resources). A free-market system distributes health care resources in accordance with what consumers are willing and able to pay, whether directly for services or through the purchase of private insurance. Libertarians tend to view allocation systems in which some people are required to subsidize expenditure for the health needs of others as unjustifiable intrusions on freedom. 2.2. Utilitarianism The main value that guides utilitarian decision-making in matters of resource allocation is beneficence or maximizing good. For the utilitarian it is not so much the good of the individual that is the focus of concern as it is the aggregate good of society as a whole. What allocations or distributions will produce the greatest amount of good or benefit for the greatest number of people? The answer to this question requires a comparative cost-benefit analysis of various options. The resource allocation likely to produce the most overall benefit would be favoured. 2.3. Egalitarianism Egalitarians are guided by the ideal of equality. The distribution or allocation of resources for health and health care should respect and promote equality. However, equality can be interpreted in different ways. For example, equality of opportunity is different from equality of outcome. Aiming for equality in the relative health level of populations groups is different from aiming to ensure that members of these groups have equal access to health care.

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Egalitarians emphasize the fact that people have unequal needs, and interpret equality with reference to need. Because needs are unequal, the commitment to equality requires apportioning resources in proportion to need: Those who need more should get more, or those needs that are most urgent should be most urgently met. It is right and just that those who are sickest should receive more than an equal share because generally they have greater needs.

3. TENSIONS AND CONFLICT AMONG THEORETICAL ORIENTATIONS These three theoretical orientations to justice may be complementary with respect to a given allocation decision, but often they will be in tension or conflict. For example, allocating resources on the basis of the ability to pay (libertarianism) is bound to result in an unequal distribution of resources; an allocation that best realizes equality (egalitarianism) may not produce the most overall benefit (utilitarianism). Furthermore, each of these theoretical orientations is related to a political theory about what constitutes a just society overall (Rodney et al., 2004). Rawls’s very influential work, A Theory of Justice (1971/1999), which is essentially egalitarian, is an example of comprehensive theory that mediates the tensions among liberty, utility, and equality. Health systems can be differentiated according to how much relative weight they give to each of these theoretical orientations and the values that underlie them. For example, the United States health system has been primarily oriented along libertarian lines, based on the belief that the market is the most efficient means of allocating resources and most conducive to consumer choice. The 2010 Patient Protection and Affordable Care Act initiated by then President Barack Obama challenged this orientation and modified the system from an egalitarian point of view. Its objective was to ensure that adequate health insurance is extended to the entire population, a large percentage of which has long been underinsured or without coverage. The libertarian orientation of the United States system has also been challenged on utilitarian grounds, with critics arguing that the money spent on health care could be deployed more efficiently to produce greater benefit if government played an even greater role. Libertarians tend to dispute this claim, arguing that greater government intervention will not only infringe on liberty but also increase inefficiency.

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In Canada the dynamics of current policy debates are almost the opposite. The philosophical foundations of the Canadian health care system are primarily egalitarian in that universal insurance for most health care services—available to all Canadians—is publicly funded. However, from the beginning of medicare some health services, such as dentistry and pharmaceuticals, were not covered. The public needs to purchase these services unless they have benefits that cover these expenses in full or in part. Across the country there has always been a patchwork approach to home care, rehabilitation, and payment of medications needed for catastrophic illnesses (Commission on the Future of Health Care in Canada, 2002; Storch, 2010). Several commentators (e.g., Armstrong & Armstrong, 2003; Commission on the Future of Health Care in Canada, 2002; Saul, 1997; Storch, 2010) have warned that the egalitarian foundation of the Canadian health system is under threat from increased privatization. A number of health care services have been privatized and private, for-profit providers have moved in to fill the gap when publicly available services have become less accessible (Pauly, 2004). The reasons for this movement to privatization are complex and several, but appeals to liberty figure large, as expressed in catch phrases such as “consumer choice.” The dynamics of the privatization issue are illustrated by a landmark case at the Supreme Court concerning the legality of private health insurance enabling quicker and enhanced private access to services that are also covered by the public system (see Yeo & Lucock, 2006; Yeo et al., 2009). The debate in this country continues (Coffey, 2008; Podgorsak, 2009). Egalitarians argue not only that privatization should be resisted, but also that the public system should be expanded to cover additional private services. When the costs are not covered in part or in full, individuals rely on their benefits, insurance, and savings. Family members, especially women, sometimes have to give up gainful employment to look after their ill relatives (Peter, 2004). Some individuals and families have to do without care due to the cost.

4. SUBSTANTIVE PRINCIPLES OF JUSTICE In discussion and debate about particular justice issues, arguments and points of view will tend to be divided along the lines of the three theoretical justice orientations described above. Delving into these theories, we can further differentiate and clarify several specific principles relevant to distributive justice:

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liberty, utility, equality, need, and restitution. These principles are substantive in that they specify a distributive criterion for resource allocation decisions and indicate what a just outcome would be. A substantive principle of justice helps complete the sentence “a fair distribution of resources would be one in which ...” Think of a pie to be divided among a determined number of persons. Should the size of the slice one gets, if one gets one at all, be determined by how much one has contributed to making or purchasing it? Will the distribution of slices be guided by the ideal of producing the greatest good for the greatest number of people? Will everyone get a slice of the same size? Will the person who is most hungry or in need of nutrition get the largest slice? Will someone who has been unjustly deprived in previous distributions get a larger share to make up for this? The answer to these questions will vary depending on how much relative weight one gives to liberty, utility, equality, need, and restitution. 4.1. Liberty Liberty, the fundamental value or principle underlying libertarianism, pertains to the right or liberty of individuals to make choices in matters of their own good and with respect to their own business, without undue interference from others. One such right—which is claimed especially by libertarians—is the right to dispose of your personal resources as you see fit. A just distribution of health care resources is one that is based on respect for this right. Protection of free choice is paramount. A just society protects property and liberty. Health insurance should be private, and purchase should be voluntary. Access to health care is not regarded as a right. Resources ought rather to be allocated in accordance with what people are willing and able to pay for them. It is not a responsibility of government to provide for everyone’s health care needs, although some public expenditure on health will be justified as a good investment to the extent that the poor health of the population is linked with poor economic development and serious social problems, and the overall benefit outweighs the costs. From the standpoint of liberty, the ideal system for allocating health care resources is a free market in which supply is adjusted to consumer demand. Some argue that the free market is also the most effective and efficient way of allocating health care resources, although this claim is contested (Pauly, 2004; Stein, 2001). An obvious benefit of the liberty approach accrues to those who can purchase health care or health care insurance and generally (but not necessarily) receive excellent care. But this approach has its problems with respect to other

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substantive principles of justice. Basing allocation decisions on liberty places certain individuals or groups at a disadvantage. Some people will not have the means of purchasing health care, particularly when insurers set prohibitive rates for people with poor health status and pre-existing conditions. Insurers can pick and choose the people least likely to require expensive treatments. In the United States not only low-income persons but many middle-class families have been unable to afford health care insurance. A more indirect way the principle of liberty may factor in resource allocation is through consideration of how people came to be in need in the first place. Some people argue that health services directed to needs resulting from supposedly voluntary behaviour (e.g., tobacco smoking) would be granted a lower priority, and individuals or groups presenting with health needs related to such behaviour would have reduced access to available services, or be denied access altogether. This is an approach that could amount to “blaming the victim” (Martin, 2001). One problem with its logic is that people who engage in tobacco smoking or excessive alcohol consumption or intravenous drug use or other such activities are profoundly influenced by social factors such as the support they received in their family of origin, their level of income, their access to safe housing, or the availability of detoxification and rehabilitation services (MacDonald, 2002; Pauly, 2008). Additionally, the principle of liberty has other applications in health care beyond issues of distributive justice, which will be discussed in other chapters. For example, the principle of liberty also relates to the notion of autonomy and encompasses the freedom of individuals to make treatment choices based on adequate information and to select the caregivers who will administer to their health needs. 4.2. Utility The principle of utility is expressed in the injunction “do what will yield the greatest good for the greatest number.” The basic premise is simple: Among available options, choose the one that will produce the most good or benefit overall. Measure and compare the benefits and costs: Options that yield the most benefit for the least cost are favoured. Decision-making thus becomes reduced to measurement and calculation. Cost-benefit comparisons—and some more so than others—are bound to be controversial when human lives and health are at stake. How can health

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and health benefit be measured? Health care economics and epidemiological research play a major role in such measuring. Objective measures of morbidity and mortality get at something essential, but they cannot capture important dimensions of health and benefit and need to be complemented by evaluations of less tangible factors such as quality of life, including physical, social, and psychological well-being. Nurses and other health care professionals have been involved in research using various measures of both objective and subjective health and quality of life status, which enables more comprehensive analyses of costs and benefits (see, for example, Blom et al., 2016; McNelly et al., 2016). Utility calculations and comparisons of various sorts are pervasive in health care resource allocation in Canada and elsewhere. The principle of utility underlies many public health interventions, such as health promotion and disease prevention programs. Consider, for example, a child immunization program. Utilitarian reasoning would have us first calculate both the likely cost and the benefit of such a program, both short-term and long-term, and compare the results to the costs and benefits of other options, including not having such a program. When these sorts of calculations are done, public health interventions often appear in a favourable light and indeed often save costs in the long run. Information from utility measurements and calculations is no doubt useful, and even necessary, in allocation decision-making, including decisions about what treatments should be funded. But using the principle of utility as the sole basis for decision-making can be problematic. This is so not just because there are issues about how the measurements and calculations are to be made but because other things matter besides aggregate utility. For example, in applying only the principle of utility, and depending on the calculations, researchers might logically conclude that programs to promote smoking—as opposed to preventing or ending it—make sense because with the push to continued smoking fewer people would live to old age, and thus the associated health care costs would decrease. Even if you accept this approach as maximizing utility, other objections to it would arise. It would mean, for instance, that society was willing to sacrifice the health and well-being of some people—those whom the program influences to smoke—for the supposedly greater good that would come about through cost-saving. The problem here is that the principle of utility considers only the aggregate good, and does not consider the distribution of benefits and costs among individuals and groups.

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4.3. Equality Equality is the main principle that informs an egalitarian approach to justice. Intuitions about equality in health care are rooted in a sense of solidarity, of being together in the same boat with everyone else and sharing a common humanity. The Canadians who banded together in Saskatchewan in the 1930s to start what would evolve into our publicly funded national health care system realized that forming a co-operative would enable coverage of health care expenses beyond the reach of many of them in the event they became ill (see Storch, 2006, 2010). Equality can be applied in different ways, including equality of access, equality of shares, and equality of health status. Gorovitz (1988, p. 570) distinguishes four main senses of equality: equality in the amount of money spent on each individual; equality in individual health status; equality in the maximum to which each person is benefited; and equality in the treatment of similar cases. Others yet could be listed. Each sense of equality furnishes a different criterion for resource allocation decisions. Equality is not the same as equity, which takes into account that the circumstances and needs of various individuals and population groups is not equal to begin with. From an equity standpoint, those with equal needs should be allocated equal resources, and among those with unequal needs resources should be allocated unequally to achieve equity. It can be justifiable to allocate resources unequally because people have unequal needs, and some will therefore require more than an equal share of resources to reach a condition of health that approaches equality with that of others in society. The injunction “treat like cases alike” permits differential treatment based on need while forbidding discrimination based on factors such as sexual orientation, gender, race, and religion. The World Health Organization (WHO) defines equity as “the absence of avoidable or remediable differences among groups of people, whether those groups are defined socially, economically, demographically, or geographically,” adding that “health inequities entail a failure to avoid or overcome inequalities that infringe on fairness and human rights norms” (WHO, 2014). Consistent with this thinking, some commentators argue that spending by provincial governments should be shifted to reflect increased attention to the social determinants of health in order to advance efficiency and equity in the health care system (Smith et al., 2016).

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4.4. Need The principle of need is based on the belief that the condition of being in need imposes an obligation on the part of others to help meet this need. At the level of politics, a just society is one that is compassionate and humane. A critical measure of this is how well “basic” or “essential” needs are met. Sickness and disability are significant impediments to well-being and prosperity in society and we are not all equal in our health needs. Due to the social and “genetic lottery,” each of us is born with different opportunities to achieve health and happiness. Some people require more resources than others to meet their health needs and to have more or less equal opportunities in society. As Daniels (2001) observes, “By keeping people close to normal functioning, healthcare preserves for people the ability to participate in the political, social and economic life of their society” (p. 3). Egalitarian theory combines the principles of need and equality. According to the theory, government should provide for the basic needs of people, making available the services necessary to meet those needs and ensuring equal terms and conditions to meet that goal. In general, nursing practice in Canada is based on this egalitarian approach. Just as at the level of patient care nurses should allocate their time to those they serve based on the assessment of the patients’ needs, so too at the level of public policy government should allocate resources proportionate to needs among the population. The Code of Ethics for Registered Nurses (Canadian Nurses Association [CNA], 2017) is implicitly egalitarian in the sense of the “fairness” it invokes in this passage: “Nurses make fair decisions about the allocation of resources under their control based on the needs of persons, groups or communities to whom they are providing care. They advocate for fair treatment and for fair distribution of resources for those in their care” (CNA, 2017, p. 15). 4.5. Restitution According to the principle of restitution, individuals or groups disadvantaged as a consequence of past or continuing injustice deserve preferential consideration. In the context of health care, restitution is about privileging or compensating people who have been in some sense “victimized” or whose need for health care arises in consequence of some neglect or injustice. On these grounds, for example, Indigenous people would be entitled to a proportionately greater

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share of health resources based on their historic victimization through unjust practices that have contributed to their present state of need (Commission on the Future of Health Care in Canada, 2002; Royal Commission on Aboriginal Peoples, 1996; Stephenson, 1999). The same rationale could be applied to so-called “healing packages” given to Indigenous people who were abused as children in residential schools. On grounds of restitution the Canadian government offered compensation packages to persons who unknowingly received blood products carrying the HIV virus. The rationale for provision of enhanced access to health services by workplace safety and compensation boards to workers who have incurred injury on the job can also be understood with reference to the principle of restitution.

5. PROCEDURAL PRINCIPLES OF JUSTICE Procedural justice concerns the process followed in making decisions. If substantive principles of justice answer questions related to the criteria that determine the outcome of resource allocation and the public funding of services, procedural principles answer questions such as, “Who has the rightful authority to make or influence these decisions?” and “Which individuals or groups need to be consulted or considered in decision-making?” and “What is a fair process for making decisions?” They help complete the sentence: “a fair process for making resource allocation decisions in health care is one in which ...” These questions fall under three main procedural principles: explicitness or publicity, accountability, and autonomy. 5.1. Explicitness According to the principle of explicitness or publicity, the criteria for allocation decisions and the processes by which they are reached should be explicit and open (transparent) to public scrutiny. The fact that a decision-making process is not publicly explicit may be an indication that the process is flawed and would not be defensible if it were revealed. One of the reasons explicitness is desirable is that in the knowledge the process will be scrutinized decision-makers will be less tempted to make decisions on grounds that would not be widely endorsed if publicly known.

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Explicitness applies not only to the process of decision-making but also to the reasons for a given decision. Through ethical analysis and deliberation, values in tension or competition concerning a given decision, which might otherwise be vague or confused, are clarified. Clarifying and making explicit reasons for a given decision enables more informed discussions and decision-making. 5.2. Accountability The principle of accountability expresses that those entrusted to make allocation decisions should be accountable—and capable of being held accountable—for the decisions that they make. The public, and especially those most affected by the decision, have a right to know how decision-makers reach their decisions and on what grounds, and to have input into these decisions as appropriate. Decisions should be supported by reasonable and publicly defensible explanations. In furnishing these reasons and making them available as appropriate, decision-makers can be held accountable for their decisions. Procedures should be in place to ensure that their decisions are consistent with whatever mandate they have been given that authorizes their decisions. Furthermore, the principle of accountability requires a process to be in place for appealing a decision that harms an individual or group. 5.3. Autonomy According to the principle of autonomy, people are entitled to input or representation in decision-making that affects them or in which they have a stake. The greater their stake, the more input or representation they should have. For example, Fridkin (2012) emphasizes the importance of including Indigenous peoples in health policy decisions. She also cautions about the risk of recreating inequity and marginalization through that process and suggests that “foundational changes to the Canadian policy system are integral to addressing health inequities” (Fridkin, 2012, p. 119). In a publicly funded system the public is the ultimate source of authority, and therefore decisions ought to express the will of the public. At the level of macro-allocation, considerations of autonomy inform trends toward “devolution” or “decentralization” in resource allocation decision-making (although such initiatives may have less to do with promoting autonomy than with reducing costs or shifting responsibility). At the microlevel, the doctrine of informed consent is rooted in the principle of autonomy.

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6. INTEGRATING SUBSTANCE AND PROCESS In the context of substantive justice, fairness has to do with outcomes. To say that a given allocation is fair means that it is consistent with or follows from a preferred substantive principle of justice. From the standpoint of substantive norms, the evaluative question takes the form: “Is the outcome of this decision—i.e., the distribution of resources that will follow from it—fair with respect to substantive values such as liberty, utility, equality, need, and restitution?” Does it curtail or interfere with peoples’ liberty? Does it distribute benefits more or less equally? Is it superior to other options with respect to meeting needs? Will it yield more benefit for the cost than other alternatives? Does it take into account past injustices if appropriate? The main challenge here is that these principles are often in tension or conflict, and need to be interpreted and balanced by decision-makers. In the context of procedural justice, fairness has to do with process. To say that a given allocation is fair in this sense means that it has been decided by a process consistent with procedural principles of justice. From the standpoint of procedural norms, the evaluative question becomes: “Has the decision been reached through a process that is fair?” Was the decision-making transparent and open to public scrutiny? Can the decision-makers articulate the reasons for deciding as they did? Were they sufficiently representative of the stakeholders of the decision, and were stakeholders given appropriate influence over the decision? The main challenge posed by these procedural values concerns how best to translate principle into practice. In general, procedural principles are more complementary than are substantive principles. Indeed, they are rooted in a common value—the quintessential democratic value—namely, the right of stakeholders to have a voice or representation in decision-making that concerns them. However, the application of procedural principles poses challenges. Some of these concern the practicalities of realizing these values. How do we determine which stakeholders should be involved in decision-making? Exactly what form should this involvement take? Does having one or two designated public representatives on a decision-making body mean that the process is participatory? How should they be selected? Given that the people and organizations that tend to be most effective in consultative processes are articulate and financially well supported, decision-makers have a responsibility to ensure that the voices of vulnerable and disadvantaged persons and groups are heard. Outreach to

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community organizations is needed, and innovative ways of obtaining input should be pursued. Where public input is sought, decision-makers ought to make the role of the public clear. Other difficulties and questions penetrate deeper. What is the value of the procedural principles? Decision-makers need to think about the point of greater public involvement in choices around the allocation of resources. Is decision-making valued for its own sake, or because it is expected that such involvement will lead to better decisions? If the latter, is this a reasonable expectation? Experts may worry that the public is not sufficiently informed or qualified to work through the clinical, economic, and scientific issues on which many allocation issues turn. Supporters of public involvement argue that the public cannot be stereotyped. Some people may want to learn more than others do. Some may join a well-informed advocacy group. Patients and their families may contend that they are the real experts because they live with the health problems and have to work with the health care system. The realization of substantive and process principles for health care decision-making can involve various mechanisms. Efforts have been made to “decentralize” or “devolve” decision-making away from central planners and move it closer to the ultimate users of health care, although in some jurisdictions there has been a move to reverse decentralization. Different ways of ensuring greater stakeholder participation include public opinion polling, referenda, focus groups, town hall meetings, and the appointment of community representatives on health care boards. Nurses are represented by their professional bodies on many local, provincial, and federal health care committees and proactive in their commitments to substantive and procedural principles of justice.

7. LEVELS OF RESOURCE ALLOCATION AND DECISION-MAKING Resource allocation decisions can be grouped into two main kinds: decisions related to the allocation of already available resources to or among individuals; and decisions related to which services and programs, and of what quality, will be available. The former is the level of micro-allocation. Micro-allocation concerns “the distribution of resources such as a treatment, a piece of equipment, a drug or procedure, to an individual in need” (O’Brien, 1983, p. 218). At this level, what is mainly at issue is the question of access. Which individuals will

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receive the limited resource or how will they be prioritized on a waiting list (e.g., treatment, organ transplant, prenatal class)? If a given resource (e.g., a liver transplant, home care) is available in a supply that falls short of the need or demand for it, individuals will be in competition for the resource—thus giving rise to the issue of which of these individuals should have access to it. The more limited the availability or supply, the more acute are issues of access or micro-allocation. Micro-allocation issues do not arise if the supply of a given resource is adequate to the need or demand for it. Accessibility of resources, and the micro-allocation issues that arise in consequence of scarcity, thus depend to some extent on prior decisions that have determined availability or supply. These decisions occur at higher or more general levels of decision-making. For example, higher-level, prior decisions about the nursing staff to be available on a particular unit will limit the amount of nursing care time available for allocation to individual patients. Decision-making about the relative allocation and prioritization of resources among programs within an institution occurs at the level of meso-allocation. How much funding or support is or should be allocated to which services and programs within a given institution? The level of macro-allocation, in turn, refers to broad public policy decisions, for example, decisions made by federal, provincial, and territorial governments about funding and priorities, including how resources will be allocated among institutions or sectors. Decisions at a higher level of generality constrain or limit decision-making at a lower level of generality. Government macro-allocation decisions about how much money will go to health as against other sectors constrain allocation decisions within health spending. In turn, decisions at this level, such as how much money will go to hospitals as against community health, health promotion, and other programs, set limits on and constrain decision-making at a lower level, such as within a hospital or a neighbourhood health centre. At the micro-level, decision-makers allocate to or among individuals a resource that is limited in supply as a consequence of meso- and macro-allocations made at higher levels of generality. The notion of opportunity costs is important for understanding ethical issues in resource allocation. The opportunity cost of deciding for a given option is the lost opportunity of meeting some other demand or realizing some other option. For example, funds allocated to health care reduce what is available for other useful services or programs such as education, preserving

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the environment, or a national daycare program. Within health care, dollars spent on acute care are dollars not available for health promotion. These lost or negated opportunities—e.g., a possible program that could otherwise be funded if some other program were not—are easily and often overlooked. Such costs or lost opportunities, and the values in tension or conflict in deciding among options, should be factored or taken into account. However, considerations that are appropriate at higher levels of decision-making are not necessarily appropriate at the micro-level. 7.1. Micro-Allocation, Gate-Keeping, and Access The level of micro-allocation is the face-to-face level at which health professionals provide services to patients, families, and communities. At this level, health care professionals have some control over the allocation of available resources to those they serve. They control the “gate” to health resources, as it were, deciding who gets access to some needed resource within their power to allocate, even if only their time, and how much of it. Insofar as health professionals are gate-keepers, controlling the access gate to care or treatments, they should use the resources available to them prudently with a view to meeting the needs of those they serve. However, gate-keeping can mean several different things, some of which are morally problematic (Pellegrino, 1986). The micro-allocation of resources to a given individual patient is a cost, which may come at the expense or cost of foregoing some other opportunity to which the resource might otherwise have been directed. The resources used for a costly diagnostic test or a surgical procedure, for example, might otherwise be used to produce some other and perhaps even greater benefit for some other individual or group of individuals. It may be appropriate, and indeed responsible, at the meso-level for the hospital or the agency to weigh such costs and benefits in program planning and budgeting, which will determine and constrain what resources are available for health professionals to allocate at the micro-level. However, at the micro-level it can be problematic for health professionals to factor economic costs in decision-making about individual patients. Traditionally, the professional-patient relationship has relied on the understanding that the professional’s foremost duty is to the good of the individual patient. This duty is compromised, and the loyalty of the health professional is divided, when he or she acts as a gatekeeper in the sense of rationing resources, for example by denying or limiting

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an individual patient’s access to available care or treatment on the grounds of cost containment. The patient’s trust in the health care professional, which is critically important for the therapeutic relationship, may be eroded if this duty is moderated by a consideration of costs, or of the good of others outside the relationship. At the front line of health care, providing resources for one patient may come at the cost of not being able to provide resources for another patient. When the supply of a given resource available to the health professional to allocate—a transplant, a therapy, or even the professional’s time—falls short of the needs of different individuals seeking access to it, a decision must be made about how that resource will be distributed among those individuals. In this case the opportunity costs are concrete and readily apparent: A decision granting access to one individual means limiting or perhaps denying the access of another needy individual. A classic scenario for these triage-like decisions is the allocation of the last remaining bed in an intensive-care unit. The decision about who will get the last bed is at the same time a decision about who will be denied it. Every effort should of course be made to prevent such win-lose scenarios by exploring other options, such as transferring the least acutely ill person to another unit and requesting additional nursing care for the transferred patient. However, in some instances tragic choices are unavoidable. Nurses’ micro-allocation decisions are not always so dramatic, but their allocation of nursing-care time is an everyday challenge that can generate a great deal of moral distress (Hardingham, 2004; Varcoe & Rodney, 2009; see also chapter 8). To the extent tragic choices are recurrent and unavoidable, the issue should be addressed collectively by the health care team and prioritization criteria formulated in policy guidance. A number of criteria have been suggested for prioritizing allocation options at the level of micro-allocation. Edwards and Graber (1988, pp. 709–10) group these under five main headings: medical criteria, random selection criteria, constituency criteria, present and/or future quality-of-life criteria, and social worth criteria. More than one type or group of criteria might be weighed together, or arranged serially in order of priority. Gorovitz (1988, p. 573) and Curtin (1984, p. 8) each list five slightly different principles for decision-making in these contexts. Some authors have advocated for a decision method that combines various criteria in order of priority. Some micro-allocation criteria are more controversial than others. Among the least controversial and most widely used is the likelihood of medical

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benefit. Social-worth criteria are ethically suspect for several reasons, but especially because assigning a higher value to one person’s life over that of another offends against notions of equality and runs counter to nurses’ ethical obligations (CNA, 2017). Random selection criteria (e.g., first come, first served; a lottery), by contrast, preserve equality, and therefore are favoured by some in the event that other acceptable criteria are insufficient to decide the issue (e.g., Childress, 1983; Rescher, 1988). One criterion that Edwards and Graber do not list, and which has generated much debate, is personal responsibility for illness (Gollust & Lynch, 2011). According to this criterion, it is morally appropriate that “persons in need of health services resulting from true, voluntary risks are treated differently from those in need of the same services for other reasons” (Veatch, 1988, p. 599). Smokers, for example, might be given a lower priority than non-smokers for access to treatment for heart disease based on the rationale that “they brought their sickness upon themselves.” Some commentators have suggested that those with alcohol use problems should be denied liver transplants in favour of those whose livers fail through no “fault” of their own. However, judgments about whether a particular behaviour is the cause of a particular illness and, further, about whether the behaviour in question is truly voluntary, are highly controversial. Moreover, even if causality and voluntariness could be established beyond a doubt, those who emphasize equality or neediness will object to resource allocations based on such considerations—a position consistent with the guidance provided by the CNA (2017) Code of Ethics, which has it that nurses ought to allocate resources based on need. Moreover, allocating resources with reference to personal responsibility for being in a situation of need is inconsistent with the prevailing approach today according to which such self-harming behaviours as smoking and alcohol abuse are viewed not as moral faults but as addictions. In some instances, punitive reasons for denying resources to persons based on notions of personal responsibility may overlap with medical reasons. For potential liver transplant recipients in Ontario, for example, criteria state that contraindications include “any alcohol and/or illicit drug misuse within six months” and “for patients with alcohol associated liver disease, inability to absolutely abstain from alcohol and/or illicit drug use for six months” (Trillium Gift of Life Network, 2018, p. 4). Obviously this disadvantages patients with alcohol abuse problems, but this can be justified on the grounds that outcomes are less likely to be successful with such patients rather than on moralistic grounds.

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To the extent resources are not scarce, and in typical cases, the provision of services at the micro-level should be based solely on the needs of the individual, and respectful of the patient’s right to make treatment decisions (CNA, 2017; McPherson et al., 2004; Pellegrino, 1986). 7.2. Meso-Allocation and Macro-Allocation Decisions about who should have access to an already available resource, and how much of it they should get, are different from decisions about the availability and supply of resources. In a micro-allocation discussion we can distinguish the decision about who should have the last bed in intensive care from some prior decision bearing on how many beds should be available in intensive care in the first place. For example, given its allotted budget, the intensive-care unit might previously have decided to allocate its resources to purchase new equipment instead of providing additional beds. The options considered at this level, in turn, would have been constrained by resource allocation decisions made at higher levels of generality, ascending to the global budget for the hospital. Levels of generality beyond the meso-level of the hospital reach to broader issues of public policy, and eventually to the total government budget for health care spending as against other areas. Health care is important, but so too are other things, and indeed resources directed to other sectors can impact health. For example, evidence indicates that improving education and social welfare can improve health (Anderson et al., 2009; Daniels et al., 2004; Marmot, 2004). However, whether justified or not, a government decision to reduce health care expenditure by even a small percentage will have effects that eventually trickle down to the micro-level, and at that point practitioners may find themselves with fewer resources to allocate to individuals. Ad hoc approaches to funding fall short of meeting the requirements of justice. To ensure a responsible and fair allocation of scarce resources, decision-making should be guided by ethical values and principles, but which ones? Should allocation decisions be guided primarily by concern for individual autonomy, or for equality, or the greatest good for the greatest number? What constitutes a reasonable balance between or among these values? What process should be used to make these choices? These questions are being energetically debated today. Are we getting good “value” for our health care dollars? What are the benefits of so-called “high-tech” curative medicine as measured against more care-based approaches, and against health promotion and disease

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prevention? Although there is no consensus about the answers, there is agreement that more scrutiny needs to be given to the allocation practices that have evolved over time, and there is work being done to develop meso-level allocation decision-making models (Martin et al., 2002; McPherson et al., 2004). There is growing attention to the need for explicit attention to ethics in the development of the health and health care policy that affects what resources are available (Kenny & Giacomini, 2005). The nursing profession is well situated to contribute to such work. Some factors and principles bearing on meso- and macro-allocation are ethically suspect. Unjustifiable discriminatory factors such as racism and other prejudices against disadvantaged and marginalized groups sometimes play a part in decision-making. Which group or constituency controlling or demanding resources has the most political clout? Who shouts the loudest or is best able to use the media to amplify their voice? Who is most effective at lobbying decision-makers? Diseases that catch the public’s sympathy fare best in this competitive approach to allocating scarce resources. Less socially acceptable and little understood conditions, and the agencies and charities supporting them, are at a disadvantage. Television appeals for pediatric hospitals, for example, are well supported, but not all populations are as fortunate. In many instances, higher-level decision-makers take an overly narrow view of costs and benefits, focusing consideration of costs and benefits on the short-term only, or considering only the costs and benefits that are borne within a specific program and not the health system as a whole. For example, if in consequence of some institutional decision at the meso-level the supply of beds is not sufficient to meet needs or demands, tragic allocation decisions will have to be made at the micro-level. To free up scarce beds for which others in need are waiting, front-line professionals might elect to discharge a frail elderly patient with a lesser need who could receive needed care more efficiently in a long-term care facility. However, in consequence of other higher-level decisions, there might also be a scarcity of such facility spaces. While waiting, the frail discharged patient would be at risk and could experience serious complications or fall, necessitating a return to the emergency room and requiring a readmission. Such long-term implications are often invisible to decision-makers and therefore not taken into account (Varcoe & Rodney, 2009).

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7.3. Navigating Levels of Decision-Making Each level of allocation involves different decision-makers. At the level of micro-allocation, decision-making is mainly the prerogative of physicians, although other health professionals, including nurses, may have control over or input into the control of some resource allocation decisions. At the mesolevel, trustees and administrators working in collaboration with health professionals make allocation decisions. At the macro-level, political authorities or their designates (governments) make decisions based on information from many sources, including health care professionals and their organizations, the public, and health care researchers. At every level values are engaged. Decision-making is coming under increased public scrutiny and decision-makers are expected to be more accountable. The difficult questions that must be tackled are not for these decision-makers alone. In a democracy the right and authority to make these decisions is ultimately rooted in the will of the people, and the questions therefore are public questions. There is long-standing dissatisfaction with the existing mechanisms of decision-making about resource allocation and health care delivery. A major criticism is that these mechanisms do not adequately incorporate the community in decision-making. 7.4. Social Justice The issues of justice concerning the distribution of resources for health care are different from issues concerning the distribution of resources required for health (Anderson et al., 2009; Rodney et al., 2004; Sherwin, 2002). As Daniels (2001) explains: 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. (p. 6)

Addressing these social conditions requires paying attention to the determinants of health (Smith et al., 2016). The determinants of health are the

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“conditions in which people are born, grow, live, work and age, including the health system. These circumstances are shaped by the distribution of money, power and resources at global, national and local levels, which are themselves influenced by policy choices” (WHO, 2008; CNA, 2017). Libertarianism tends not to view this approach and activity favourably, or at least not insofar as such change would involve governmental redistribution of resources or interference in individual liberty. For utilitarianism, the consideration of the determinants of health is a matter of being thorough in applying the principle of utility and ensuring that the utility calculations take into account all relevant options. For egalitarianism, addressing the determinants of health makes good sense in view of evidence that social inequalities are correlated with inequalities in health and health status (Wilkinson, 2005). The distribution of health in and among populations—as measured by indicators of morbidity, mortality, and longevity—is markedly unequal. This is especially evident in global or international comparisons, but one need look no further than Canada and the comparatively low health status found in its Indigenous population to get the point. Such inequalities in health cannot be accounted for in terms of biological differences or differential access to health care. They stem largely from differences in living conditions and social arrangements—social determinants of health. Given the importance of health for happiness and fulfillment, and marked inequality in social determinants of health, achieving greater equity requires social change beyond the health care system as such. The view that broad social change is necessary to address the determinants of health and reduce health inequalities is sometimes called social justice (Sherwin, 2002; WHO, 2008). Social justice is concerned not just with the distribution of health care resources but also with the distribution of social determinants that impact on health status. Social justice takes into account that to a considerable extent health status, and inequalities in health status, is a function of social arrangements and is socially produced. Given the importance of health in our lives and with respect to our capabilities for achieving happiness and fulfillment, and the differential impact of social arrangements on health status, health inequalities can be interpreted as indicators of how just or unjust a society is. Amartya Sen, probably the most distinguished and renowned proponent of social justice, writes that “illness and health must figure as a major concern” from the point of view of overall “social equity and justice,” and that “health equity cannot but be a central feature of the justice of social arrangements in general” (Sen 2002, p. 659).

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Sen’s views have been further elaborated by Sridhar Venkatpuram (2013), who expresses the relationship between health and social justice with great clarity: Evaluating the state of people’s capabilities to be healthy—their causes, constraints, levels, distribution patterns, differential experiences, possible remedies for constraints, or potential improvements—will tell us a great deal about the justness of social arrangements. This is because people’s health or clinical “health outcomes” and their antecedent capabilities to be healthy are significantly socially produced (i.e., nurtured, protected, restored, neglected or thwarted) by a range of political, economic, legal, cultural and religious institutions and processes operating locally, nationally, and globally. (pp. 2–3)

Venkatpuram argues that people have a right not just to health care, but to health, and so the unequal distribution of health status as produced by social arrangements is not just an accident of nature but a matter of justice. Social justice is receiving increasing attention in nursing theory and research (Anderson et al., 2009). Indeed, the revised CNA (2017) Code of Ethics has a section devoted to “Ethical Endeavours Related to Broad Societal Issues” (pp. 18–19) that includes several statements aimed at promoting social justice. In this section, the code states that nurses can advocate for fairness by “recognizing the significance of social determinants of health and advocating for policies and programs that address them” (p. 18). Another section states that “nurses endeavor, individually and collectively, to advocate for and work toward eliminating social inequities” (p. 5). Nurses following this approach would attend to the intersections of health policy (e.g., allocation of health care services), social policy (e.g., poverty and homelessness), and educational policy (e.g., early childhood education) because all three policy sectors bear on health (Clarke, 2010).

8. CONCLUSION As our society comes to terms with the problems of fiscal constraints on health care delivery, many individuals, families, and communities find it difficult to access the resources they need for health. Issues of justice continue to become more acute. For the good of all concerned, processes at the macro-, meso-,

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and micro-levels need to be improved to enhance the availability of resources and access to them in explicit consideration of the values in play and at stake. At every level, nurses should seek to become more involved because they are players whose interests, expertise, and concern are necessary for just solutions. As well, nurses need support to understand “their own complicity in sometimes contributing to organizational conditions that worsen their own moral distress” (Musto et al., 2015). Sometimes attending to health care matters and direct care needs at the micro-level leave nurses unaware of other considerations being addressed at the meso- or macro-levels that impact on and constrain options and decision-making at the frontline. Participating actively in decisions that affect them, their patients, and their organizations can help nurses be and feel more effective in influencing care. A clinician quoted in Jameton (1984) still captures the feelings of many nurses about the challenges they face daily: You know, sometimes I feel like this. There I am standing by the shore of a swiftly flowing river and I hear the cry of a drowning man. So I jump into the river, put my arms toward him, pull him to shore and apply artificial respiration. Just when he begins to breathe, there is another cry for help. So I jump into the river, reach him, pull him to shore, apply artificial respiration, and then just as he begins to breathe, there is another cry for help. So back in the river again, reaching, pulling, applying, breathing and then another yell. Again and again, without end, goes the sequence. You know, I am so busy jumping in, pulling them to shore, applying artificial respiration, that I have no time to see who the hell is upstream pushing them all in. (p. 261)

For some time now it has been obvious that justice requires nurses to make the time to walk upstream—against the current—and educate people about the dangers by the river, or teach them to become better swimmers. Working to promote justice requires that nurses also move even further upstream so that they can engage policy-makers at all levels to improve the resources that Canadians need to achieve equitable access to both health care and the resources for health.

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CASE STUDIES CASE 1: Tension between Access to Care versus Quality of Care Issues of justice arise when emergency rooms are packed, patients are waiting for admission, and in-patient units are full to capacity. These are common problems across the country given that hospitals are often just under, and sometimes over, capacity. The media stories about “log jams” in hospital and health care systems are well known to the public and nurses. One of the most important factors bearing on capacity is the ratio of professionals to patients. Beyond a certain critical ratio, the quality of care will suffer. Another factor is patient flow. Across Canada the majority of hospital patients are aged over 75 and have complex chronic health problems. These patients go to emergency departments with urgent needs, and it can turn out that for some of them a return home is not a safe option. The process of applying to a long-term care facility takes time. When stable patients cannot be discharged, the system becomes overloaded. Emergency departments are often packed, with some patients waiting for admission. In-patient units are pressured to discharge, and emergency departments are pressured to admit only those who have active medical problems that can be treated only in hospital. When patients are admitted to a system in numbers exceeding the capacity that can be cared for competently and in a timely way, access is preserved but quality of care is sacrificed. Alternately, if the service limits access in an effort to remain within the critical ratio needed to provide safe care, it will preserve quality, but at the expense of access. Nurses sometimes find themselves in a situation where access has been ranked above patient safety and under the immediate circumstances they must plan how to stretch themselves to meet the patients’ needs. As a unit reaches the critical ratio, nurses strive to meet their professional duties and provide the care needed to each patient. Under such circumstances, nurses have to work harder and smarter. With great effort, this surge of nursing can rise to meet the needs of patients. Yet this solution can only be short-term. An unsatisfactory workload leads to fatigue, increased risk of errors, and job dissatisfaction. Moral distress may be another response, as nurses find that they cannot provide the type of care needed. Therefore, they must also respond to the root causes of this chronic situation and consider long-term, sustainable responses at the meso- or macro-level.

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One possible response at the systems level is to reduce the use of emergency facilities and the admission rate to acute care settings by improving access to services in the community that can more safely and efficiently meet patient needs. Community care access centres and home care services can provide care in the home. Rehabilitation facilities and out-patient clinics can provide treatment for those who don’t require acute care services. Another response would be to increase nursing staff. However, that is difficult to do because of recruitment and retention issues. Early retirements, injuries, and sick time reduce the pool of nurses. The number of spaces in nursing education programs does not meet the demand for nurses. There is a lack of nurse academics to meet the needs of nursing education programs (McDermid et al., 2012). Creative health human-resource planning is required. This could include taking a hard look at staffing to determine whether the mix of RNs, RPNs, and personal support workers is optimal and efficient. The following case illustrates the ethical challenges related to supply and demand and workload issues. Amina Ali is the chief nursing officer in an urban teaching hospital. She has staffing vacancies resulting from two nurses returning to school and one who is away on disability for an undetermined time. With a hiring freeze the unit has been supported by staff from the nursing resource team. Amina hears many complaints from permanent nursing staff about their inability to give quality and safe care. The administration is worried because the loss of nurses directly limits their ability to admit patients from the emergency department, and treat and discharge patients from the unit. The administrators and the hospital board members believe that the hospital’s responsibility to the community is being compromised. Given the loss of nursing positions and the increased demands on those nurses employed, most nurses are advocating that beds be closed and that management revisits their decision to implement a hiring freeze. Meanwhile, they want to limit the number of patients admitted to ensure that they can provide safe and competent care. Amina realizes that determining who gains access to care is an ethical problem. The emergency room is open around the clock and wait lists are long.

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Case 1: Commentary Initially Amina thought the options were to recommend either that beds be closed or that “we carry on as best as we can.” In effect, this would mean trading off access to a service, on the one hand, for a diminished quality of care within that service with the attendant strains on nursing staff, on the other hand. She knew that by choosing between these options, she would have to weigh in the balance the needs and interests of patients, nursing staff, other clinical staff, and the hospital. Neither option was attractive. On the one hand, closing beds would mean that she and the nursing staff could take comfort in knowing that the care provided would be of a higher quality and safer, both for the admitted patients and for the nursing staff. However, patients who need care might not be admitted, and their conditions would deteriorate along with their quality of life as they waited for more long-term interventions. The downstream results would include greater demand on emergency departments and an overburdened community health care system. The public and their community partners would say the hospital is not meeting the community’s needs. On the other hand, “carrying on” would mean unacceptable strains on the nursing staff and lesser quality care for the patients admitted. Amina discussed the issue with her staff and decided to approach the hospital board about their concerns. The board proposed that she form and chair a committee to study the issue and make recommendations. From the outset, she realized that the process must be open, transparent, and accountable. Members of the committee included key stakeholders from the community, hospital, patient groups, and staff. The committee worked with the hospital library to seek out relevant literature on the problem, and with the public relations department about how best to educate the community about the problems and to solicit informed community input. Various means to communicate with the committee were set up, including town hall meetings, online discussions, toll-free hot lines, and email or postal correspondence. The responses were studied and major themes were identified. Amina was particularly impressed by the focus groups held with nurses who had concrete suggestions about improving efficiency, saving costs, working smarter, and shortening stays. From her survey of the literature, Amina had learned that “the form of efficiency that must be sought is one that takes into account effectiveness, impact on patient well-being, and long-term as well as short-term goals” (Varcoe & Rodney, 2009, p. 139). She had also learned that staff education

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contributes to the development of skills in this area (Qin et al., 2017). It was apparent from the feedback that the hospital was dealing with micro-, meso-, and macro-allocation issues. Nursing organizations proposed that employing nurses was a priority. They explained that nurses had left their jobs for several reasons, and pointed out that being mindful of staff mix and staffing patterns is critical in establishing work environments and workloads that are safe and effective, and that positive patient outcomes were related to increases in full-time nursing positions (Registered Nurses’ Association of Ontario [RNAO ], 2017). The hospital had been relying on regular use of casual nurses and had recently offered few permanent or full-time positions; Amina agreed that employment practices had to change. Nurses on the frontline had to have more control over, and be more involved in, decisions about their employment and working conditions (RNAO, 2017). Senior nurses needed to be treated with more respect and recognized as expert resources. New graduates needed to be mentored. The committee published an executive report. In the introduction they reported that the community had sent a clear message that they wanted responses to be based on a fair consultation process and to be informed about how hard decisions were made and evaluated. Recommendations were made for shortening length of stay, creating more transition and convalescent beds, increasing community supports, using technology to save duplication of tests, and more use of telephone follow-up care by nurses. The complement of beds would stay at the same level pending an evaluation of the measures taken to maintain access and availability of quality care. Consistent with procedural justice, the hospital would establish a fair and transparent process for waiting lists. The committee report also included recommendations from a sub-committee it had struck to determine how to prioritize patients on the waiting list, which had consulted with colleagues in cardiac care, who had a process that was well-regarded and working well. Medical need and urgency of need would be the most important factors for prioritizing. The committee recommended against using prognosis as a criterion for prioritizing patients, not only because prediction is uncertain, but also due to concerns this would discriminate against elderly patients. Another recommendation was to have a major fundraising committee and Amina did some reading about ways that she and her nurses could be part of this activity (see Fitzpatrick, 2014). Additionally, the hospital and community partners would collaborate in preparation of the annual budget.

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The hospital board accepted most of the committee’s recommendations and in discussion additional ideas were generated. The committee set out to implement its recommendations and positive results were seen very soon. The committee continues to have the mandate to evaluate quality improvements. The outcomes to be measured are: length of stay, wait times in the emergency room, return admissions, patient satisfaction, and admissions avoided because of community nursing care. A plan was formulated to evaluate the nurses’ assessment of their employment conditions, job satisfaction, time off related to injuries and sickness, and use of replacement staff. Reflecting on her experience, Amina was struck by how her thinking about the problem had been “either-or,” and thanks to the committee and the consultation process she was now seeing the problem as having many causes and needing many responses from different sectors. She also developed a greater appreciation for the importance and value of communication. The hospital had not been sharing with their community how and why it was responding to upstream budget decisions. In applying principles of justice, she learned that resource-allocation problems require innovative and values-driven problem-solving. The problems of access and availability of care are complex and cannot be fixed rapidly. Creative, cost-effective, and systemic responses are and will continue to be tested and implemented.

Case 1: Questions 1. Discuss values and principles that you believe should guide the waiting list subcommittee. 2. Discuss how you see the relation between heavy workload and moral distress. What can nurses do to reduce moral distress related to workload? What resources are available where you study or are employed? What role could you take in addressing this concern? 3. Amina asks the nursing staff to help her respond to the problem. Do you think their involvement was window dressing, or authentic? What needs to happen for nurses’ voices to be heard at decision-making committees? What would be the moral basis for supporting nurses participating in this kind of decision-making?

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4. Amina recognizes that for the process to be most effective she must involve the community. At your local hospital, what involvement does the community have in developing hospital policies? Do you think the involvement reflects principles of procedural justice discussed in this chapter? If not, what processes can you suggest for facilitating this? CASE 2: Allocation of Clinical Placements and Support for Clinical Education For a decade or so technology-based education has been supporting clinical learning. More students are taking distance education and online courses. Working in a simulation lab and with interactive learning software are excellent learning methods. Still, the clinical practice environment remains necessary for optimal learning. In recent years the supply of clinical placements has decreased, and competition has increased for this scarce resource. The problem affects nursing students and registered nurses seeking higher qualifications. Undergraduate and graduate programs in colleges and universities work with health care organizations to find appropriate clinical settings for students. Ideally colleges and universities negotiate as a collective and are not in competition for scarce places. From the perspective of health care organizations, issues of justice arise. The goal of educating students for the benefit of future patients must be weighed alongside the burdens and benefits for the organizations. Educators appreciate the stress experienced by busy health care organizations but believe that the benefits far outweigh the inconvenience and workload for the institution. Put simply, the students are the future of nursing. There is a temptation for schools of nursing to tolerate less-than-desirable placements because of the shortage of and competition for places. From the perspective of students, their clinical placement is essential. They may find the experience rewarding, but sometimes difficult. The reception they receive from the unit staff can range from supportive and welcoming to cold and sometimes hostile. Various clinical education models can place different demands on agency staff and health care systems, as can the learning needs of individual students (Forber et al., 2016). Overworked nurses can see student nurses as an inconvenience and a burden. One nursing study reported that nurses themselves identified how they contribute positively and negatively to the moral climate of their workplace. It noted that the nurses admitted that at times they were not supportive of patients or colleagues and were demeaning

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(Rodney et al., 2006). This attitude also permeates some nurses’ relationships with students and some studies have described students’ experience of bullying (Bowllan, 2015; Karatas et al., 2017). Konstantin Ovetchkin is a faculty member at a university school of nursing. His students are in the first year of a four-year program. Their clinical experience focuses on the provision of basic nursing care, communication skills, and establishing therapeutic relationships. Konstantin needs to find placements for the students at the nearby hospital. The school’s placement co-coordinator met with the hospital’s education co-coordinator at a planning meeting and Konstantin learned that the hospital has accepted his request to have students placed in the hospital’s continuing care unit, Unit A, which has a mixture of rehabilitation and chronic care patients. There are patients of all ages—some with MS and ALS and some young people who are paraplegics and quadriplegics as a result of traumatic accidents. Unit A is operating at a maximum capacity of 40 beds. Following an energetic recruitment drive the unit is well staffed. Its nurse manager, Mike Brown, is proud of the quality of care being provided. Konstantin is not alone in his request for placements. Another school of nursing, one school of occupational therapy, and one school of social work have also asked to have students placed in the hospital, and clinical supervisors from other programs have also approached Mike about Unit A. Susan Polanyi, the agency’s education coordinator, deals with the requests. Susan has worked with the schools of nursing to make the process of allocating units more equitable. Mike hears from Susan that his unit will receive one group of nursing students, and one student each in social work, occupational therapy, physical therapy, speech pathology, and chaplaincy, in addition to medical students. He is pleased. The students bring enthusiasm and can share the latest research about care. The patients will benefit from having new people on the unit. Still, Mike worries about how the hospital’s nursing staff will respond. He has been told by some nursing staff that they support nursing education in principle, but that having students on the unit takes their time away from patients. Their workload increases, and they fear that the quality of their patient care will go down. Mike decides to have a meeting with Konstantin and the nursing staff to hear their views. He explains the benefits that the program brings to patients, unit staff, the hospital, and the nursing profession.

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He learns that many of the nurses are concerned about finding the time to help the students. Mike wants the nurses to be supportive to the students in their learning and receptive to them when they arrive. However, he knows that not all the staff share his views.

Case 2: Commentary Depending on the circumstances, practitioners-in-training can be considered either a burden or a blessing for institutions and patients. Students’ integration into the care setting can be a challenge for all involved in their learning (Chuan & Barnett, 2012). In this case, a health care organization can see an “oversupply” of students as more of a burden than a benefit. The main conflict is between the benefits of student education and the corresponding burden on the institution, staff, and its patients. The faculty and the agency worked to find solutions. They discussed their respective needs and concerns and identified ways of reducing the burdens on the agency. The benefits of clinical education for students are indisputable. On this side of the issue, the main objective will be to seek out clinical settings that will best facilitate the development of well-rounded, competent, and safe practitioners. This goal is in the interests not only of individual students, but also of the profession and society as a whole. From the perspective of the students, the process addressed their concern for a just distribution of beneficial learning experiences. For example, students do not want always to work with patients with a specific condition. Also, students appreciate that some placements are in short supply and that not all students can have a full range of clinical experiences. When they are on the particular unit, students would consider their learning experience to be inequitable if Konstantin were to assign one student to several clinically interesting individuals, and another to patients who provide little opportunity for learning or professional growth. The other side of the issue involves a consideration of the benefits and burdens to the institutions in which students are placed and to the patients. Any burden that arises out of such placements should be minimized, if not eliminated. With regard to the good of the institution and its staff, this means taking steps to ensure that students do not disrupt the smooth functioning of the unit where they are assigned. To this end, the staff who work with the students must be involved in the nursing education process, and the students must

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understand what is expected of them on the unit, and where to go for help. In most cases, faculty and students should be able to develop a good working relationship so that the nursing staff experience the students as a benefit and not a burden. Regardless, by virtue of their professional role nursing staff have a duty to participate in the education of future practitioners (College of Nurses of Ontario [CNO], 2017). Moreover, for the institution to be sustainable it will require an ongoing supply of trained nurses. Institutions therefore have a duty to participate in the training of future nurses, even to the extent it is a burden, since they benefit from there being an ongoing supply. Concerns for the well-being of patients can be more difficult to address. Mike Brown’s staff members are right to be concerned about the quality of care if the students are expected to provide care they are not prepared to give. Konstantin has a responsibility to ensure that the students do not go beyond what is permitted in the entry year of a program, as do the students themselves. Patients (and their families) are entitled to the best care possible, and do not want to be treated as “test cases” or “guinea pigs.” To some extent concerns about quality can be addressed by prevention measures, such as outlining with students and staff what the students can and cannot do, reviewing students’ daily learning plans, and ensuring that the students are closely supervised and not given responsibilities beyond their level of competence. Respect for autonomy comes into play in the selection of individual patients. In a teaching hospital, patients are informed that students from various health disciplines will provide care. This teaching hospital requires the consent of patients before they become part of a student’s learning experience. If a patient does not want to be cared for by a student, Konstantin and the student must respect this decision. For some patients, simply being interviewed (let alone touched, probed, and examined) is in itself a burden, and all the more so when the intervention is not necessary for therapeutic purposes but aimed at giving students practice. For every practice or skill acquired, there must be a first time: the first time a student changes a dressing, draws blood, or inserts an intravenous. With reason, most patients would prefer not to be a student’s (albeit necessary) “first-time” experience. The team also makes an effort to understand the patient’s perspective and tries to resolve any misunderstandings or concerns. A key action to facilitate the change on the unit was Mike’s decision to have a thorough discussion of the program with Konstantin and the nursing staff, and to hear their views. Staff on the unit found ways of working with the students and their teacher to make the experience a beneficial one

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for students, patients, and the nursing staff. As a result of the meeting, the nursing staff developed a list of recommendations about orientation for students, how students are assigned patients, and how the nurses communicate with Konstantin. The staff came to see themselves as part of the teaching-learning team and to see students as an asset to the clinical unit, rather than a burden. The hospital staff worked together to give students a variety of experiences throughout the hospital. The students reported benefits. The questions and issues that arose in this case were explored and addressed with input from the various parties involved. It may be that the steps taken to address the concerns of both staff and patients need continuous review based on student, patient, and staff evaluations. This approach to providing quality learning environments while providing excellent patient care is an opportunity for students, staff, and faculty to reflect more deeply on the values of the health system in which they work. Ideally, schools of nursing should develop open and transparent processes to find more clinical places and share those spaces equitably. Some Canadian schools have begun to use more diverse settings in the community to provide clinical learning for their students in response to the struggle to find traditional placements (Smith et al., 2013; Smith et al., 2010). Without an open and transparent process, some colleges and universities might conclude that they are being treated unjustly. Reasons as to why some agencies find it challenging to work with students need to be studied, and innovative solutions found. New ways of supporting nursing education may need to be developed and evaluated. Advances in technology provide new learning opportunities—for example, the use of simulation labs—which play a vital role in nursing education (Foronda et al., 2017; Lapkin et al., 2010). Although these are valuable tools in teaching and learning clinical expertise, students still need clinical placements.

Case 2: Questions 1. What factors support student learning in a clinical placement? What considerations of justice are relevant for faculty and health care agencies in allocating clinical placements? 2. What issues of justice arise for student nurses in the context of their clinical assignments? What issues arise for faculty? What concerns might nursing staff have about these?

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3. What information are patients entitled to when student nurses are involved in their care? Is it reasonable to expect patients admitted to a teaching hospital to contribute to the education of health professionals? 4. If you were a clinical teacher, how would you use principles of justice as a guide to ensure that students’ access to learning opportunities is equitable? CASE 3: Equitable Allocation of Nursing Time and Care Traditionally nurses tended to believe that they could not have much control over the allocation of resources at the micro-level. In the community, in longterm care facilities, and acute-care settings, nurses accepted their assignments and tried to meet expectations. More recently nurses have realized that they ought to take action when they are unable to practise according to their professional standards. Through professional and labour organizations they can work to improve nurses’ employment conditions. Nonetheless, nurses may sometimes need to make hard choices about how they allocate their time. One resource that individual nurses do have some control over is their own time and nursing care—but under present circumstances, that is becoming one of the scarcest resources in the health care system. In such situations, nurses have to make difficult decisions about the competing needs and demands of various individuals. Lesedi Abebe works in the pediatric intensive-care unit of a community hospital. The unit is now at maximum capacity, with three children: Sarah, a profoundly developmentally delayed three-month-old baby; John, a threeyear-old trauma victim admitted the previous day; and Omar, a five-year-old who is post-surgery. Sarah is awaiting transfer to a specialty hospital for cardiac surgery. John is on a ventilator, requiring constant care; he is not expected to survive. Omar is ready for the step-down unit as soon as a bed becomes available. He is extremely anxious about leaving the protective environment of the unit. The unit is usually staffed by two nurses, but on one particular shift Lesedi’s colleague has gone home ill, and no critical-care nurses are available for relief. Even with two nurses, it is a challenge to attend to the needs of these three children.

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Left on her own, Lesedi anguishes over the question of how she should set priorities with her limited time. She is faced with the need for micro-allocation decision-making. Lesedi decides to use the distinct criteria of need, equality, likelihood of benefit, and urgency.

Case 3: Commentary The challenge for Lesedi is illustrated in a study of how ICU nurses spent their time, which indicated that 52 per cent was spent providing direct patient care and 20 per cent reviewing clinical information and documentation (Douglas et al., 2013). These high care requirements of ICU patients make Lesedi’s task especially challenging. As well, pediatric ICUs are known to be sites of considerable moral distress for nurses (Garros et al., 2015). Organizing her options in terms of the criteria of need, equality, likelihood of benefit, and urgency will help Lesedi to achieve clarity about the choices she must make. First, regarding clinical need, she sees that all of the children require her care as they are all very ill. Lesedi has essentially two options. One option is to divide her time and care evenly among the three children. This option, however, is incompatible with considerations of need and likelihood of benefit, and even if equal would not be fair or equitable. The three children, after all, have unequal needs, and allocating them equal shares of her time will not be fair. A second option is to rank the children in terms of needs. Lesedi knows that deciding who is most needy is hard to do. How will she decide? She decides that the child with the greatest need is the child that is most seriously ill, and she will distribute her time with each of them accordingly. After assessing the children, she decides that John is clearly the sickest of the children, and therefore needs the greatest amount of attention. She then thinks about who will benefit the most. Although John would probably benefit the most in the short term, in the long term that care would probably not make a great difference. Omar, who is on the road to recovery, requires very little truly “critical care,” although he might benefit greatly from support and attention because he is so anxious. Lesedi’s attention to Omar would probably have little short-term gain in terms of his medical condition, but could make a difference to him in the long run. Sarah’s needs are great, yet what benefits can be expected down the road, and what “quality of life” can she expect?

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Whatever comfort and satisfaction Lesedi takes from being able to devote considerable time to one child will be spoiled by the painful knowledge that this care will be at the expense of one or both of the other children. The situation is a “zero-sum” game in which one person can win only at the expense of someone else losing. Who will be the loser in this decision? If Lesedi devotes the least amount of time to John, it could be that he will die sooner than he otherwise would have if given more care. Even if she is unable to provide him with lasting benefit, she could at the very least make his dying easier, and provide added comfort to his family. Omar’s life is not in imminent danger, but in neglecting his need in favour of the others she may be contributing to his poor adjustment to hospitalization and recovery. Sarah’s long-term prognosis may not be very good regardless of how much time Lesedi gives her, but this patient is certainly very sick and would benefit from more attention. If Lesedi decides to assign Sarah the lowest priority, will she be making a “quality of life” judgment and communicating to Sarah’s family the message that Sarah’s life is less valuable than that of the other children? Lesedi understands that some groups in society “are systematically disadvantaged (which leads to diminished health and well-being)” (CNA, 2017, p. 19). She reflects that in some way it may be that she is evaluating whose life is more valuable than another’s. She is uncomfortable with this process. She believes each child’s life is equally valuable, no matter how long they will live and what disabilities the child has. Given these limited and less than ideal options, the choice to be made is truly difficult. However, it is important to examine the situation Lesedi has been placed in, and look for alternatives. She realizes that the situation is unsafe for all the children. When she ranks them, she notes that they all need care, and they all have urgent needs. She decides not to try to decide who is more likely to benefit and who is more entitled to care. She contacts the nursing supervisor on call and asks for help in determining a response. For example, would it be possible to transfer one or more of the children to another critical care unit? Can their parents be asked to come and spend the night with the children, because the rooms do have beds available for a parent? Omar, in particular, seems an ideal candidate to be transferred. Indeed, the kind of emotional support he needs could be provided by people with less training than Lesedi, or, with guidance, even a parent or a volunteer. Alternatively, would it be possible to call on one or more staff nurses who, even without special training, could provide basic nursing care under Lesedi’s supervision? At the very

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least, Lesedi should receive advice and professional support from supervisors and colleagues. Are there any hospital policies or guidelines that might give some guidance on this matter? Probably Lesedi does not have time to check these documents, but the supervisor should have ready access to the policies and practices. The case raises other issues that go beyond Lesedi’s immediate problem. When a hospital admits a child to an intensive-care unit, some might argue that this step in itself constitutes an agreement to provide the child with a certain standard of care. Hospitals are obliged to take whatever additional steps are necessary to ensure that nurses or other health professionals are not forced into situations like the one that Lesedi finds herself in—that is, of unilaterally renegotiating the standard of care. Lesedi is concerned with matters of justice such as this. According to the CNA (2017), nurses need to work to address organizational and other factors that have an impact on patients’ health and well-being. Lesedi and the nursing department will want to consider how typical and common this situation is. Questions need to be asked and answered. Why, apparently, have no provisions been made for backup resources in such emergency situations? What prior decisions contributed to this crisis in the first place, and what future decisions will minimize the possibility of such crises, or at the very least provide greater support and guidance for decision-making? How should considerations of “quality of life” enter into these decisions about appropriate and beneficial treatment? They might ask if a better administrative system can be developed for responding to children awaiting internal or external transfer. For the well-being of the nursing staff and the good of the children served by the unit, Lesedi will later be obliged to see that these issues are raised and dealt with in a thorough manner. She will undoubtedly experience a sharp learning curve. Until this incident she did not know what other resources were available in the hospital. She asks her colleagues and manager and learns that she can work with the hospital nursing council and her professional practice leader, and consult the clinical ethics committee. Following that consultation they propose that the unit hold an education event designed to help everyone understand the issues, and plan how to respond. Another suggestion is to conduct a multidisciplinary health team meeting in the unit. Staff would work together to find ways of preventing understaffing. Lesedi may consider following the hospital’s policy regarding reporting unsafe workload situations. Management may track

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these reports and look for trends and ways of avoiding these events. All the nurses will benefit as a result of the lessons learned from Lesedi’s experience.

Case 3: Questions 1. Some nurses working in neonatal intensive care units have mixed feelings about the surgical and technological innovations that make it possible to “rescue” infants who would otherwise die. Discuss this issue with reference to “quality-of-life” considerations, whether care is beneficial or futile, and considerations of justice. 2. In the course of caring for children, nurses understandably develop more positive relationships with some children and their families than with others. To what extent might this influence the nurse’s allocation of his or her time among various children? Discuss with reference to therapeutic relationship and fairness. 3. What bearing, if any, might Sarah’s condition have on the decision about how much care she should receive relative to the others? Consider your position in relation to relevant principles of justice. 4. Allocation decisions of the kind with which Lesedi is faced can be extremely painful, and are bound to be emotionally charged. To what extent is emotion an obstacle to such ethical decision-making? To what extent might it be a precondition for it? What is the role of these kinds of situations in nurses’ experience of moral distress? CASE 4: Triage and Rationing of Intensive-Care Beds during a Clinical Crisis The term “rationing” may sound harsh to us because it highlights the sometimes-tragic reality that resources are limited. In our system, and indeed in virtually any system practically imaginable, it is not always possible for everyone to receive the best care possible. Sometimes it is necessary to prioritize the needs of some over the needs of others. The occasion for rationing can arise in many different types of situations, but is especially likely to present in emergency situations, as the case below illustrates.

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Suzanne is an infection-control nurse for the emergency, trauma, and critical care ( ETCC ) division. The infection-control and ETCC staff all know that a pandemic influenza is overdue, and Suzanne has been doing workshops with the emergency, trauma, and critical care staff about the use of a triage process to determine who will receive a ventilator and intensive care. They agree that in a crisis ventilators and intensive-care beds will be in high demand and that decisions will have to be made about who receives this specialized care. Whether there is a pandemic or not, the ETCC staff knows that the triage protocols can be used whenever demand for critical care exceeds supply (Cheung et al., 2012; Christian et al., 2006; Frolic et al., 2009). Suzanne summarizes the key points from her readings in an educational package. 1. Inclusion criteria: patients who are in need of respiratory support and may benefit when admitted to the ICU. Examples are refractory hypoxemia, respiratory acidosis, probable respiratory failure, and those who have hypotension (with signs of shock). 2. Exclusion criteria: (a) poor prognosis despite care in ICU — severe trauma, severe burns, cardiac arrest, severe cognitive impairment; (b) require resources unavailable during a pandemic—advanced and untreatable neuromuscular disease, advanced malignant disease; (c) advanced medical illnesses, underlying illness, and high likelihood of death—persons with severe and irreversible neurological conditions, immuno-compromised, and end-stage organ failure. 3. Minimum qualifications for survival: assess use of available medical resources that can be supplied to any person. The goal is to identify patients who are not responding to treatment and are expected to die. Give resources to those who will have the greatest benefit. The goal is to avoid using up resources on those who are not improving and who are likely to have a poor outcome. 4. Prioritization tool: ranks patients who should and should not be admitted to ICU and have access to ventilation, using colour-coding. The colours will be (a) blue (or black)—manage medically, palliative care as needed, no admission, or if

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admitted then discharge; (b) red—highest priority for ICU admission and access to ventilation; (c) yellow—intermediate priority; (d) green—well enough to be without ICU or ventilation; they do not have significant organ failure. Some nurses accept the protocol, but a number of thoughtful objections and concerns arise. Kieran says that given his experience in international nursing, he cannot accept that Canada must ration ventilators. Another nurse says that she did not enter nursing to play God and decide who lives and dies. Suzanne recognizes that she did not prepare sufficiently for the meeting. It was unwise to roll out policies without considering the values and decision-making that underpin the policy. Suzanne asks for a few days to respond to their concerns and questions.

Case 4: Commentary Good ethics requires strong evidence and sound clinical experience. Suzanne realizes that in meeting with the ETCC staff she should have begun by discussing the ethical values that are the foundation of the proposed protocol. She invites the hospital ethicist, some nursing staff, and medical intensive-care experts to collaborate with her as an “expert panel” in developing and delivering an educational package around a protocol. In preparation for meeting again with ETCC staff, she distributes the CNA position paper, Emergency Preparedness and Response (2012), research papers, and an ethical primer to read before the meeting. These readings explain that internationally recognized medical practice supports foundational ethical principles, especially justice, and that triage protocols provide everyone with the opportunity to survive, but that not all persons have an equal opportunity to survive. The literature explains that during a crisis, strategic thinking like that used in the theatre of war is required. Survival of the most persons is the goal. Clear communication, established decision-making systems, and clear selection criteria are essential. Suzanne and the expert panel lead a discussion about the values underpinning the triage system. The first point is that clinical resources are finite. Having read the documents distributed for the meeting, Kieran says he now understands that rationing ventilators is needed in pandemic situations. He adds that he is familiar with triage methods used when he was working for aid agencies in

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war-torn and disaster zones. Then and now he sees the same principle of helping those expected to survive. In discussing various ethical principles of triage, meeting participants quickly agree that core values related to justice will not condone allocation based on gender, age, ethnicity, sexual orientation, or socioeconomic status. Urgency and need, however, are generally agreed to be important inclusion criteria. However, the application of those criteria still leaves too many people in the inclusion group. Participants see as well the need to consider the principle of utility—that is, to look for ways of receiving the maximum benefit from the use of the ICU’s resources. Some of the ICU nurses see the ethical challenge immediately. The utilitarian value guiding the protocol is to save as many lives as possible of persons with the pandemic flu. To get the most benefit possible the length of time each person would need the ICU resource has to be factored in. The opportunity cost of keeping ICU beds occupied by people who are not improving is immense. Not all nurses agree. Some reject the utilitarian premise. They want every person to have the same chance of having an ICU bed. Assessing persons and basing allocations on prognosis are risky. The notion of predicting prognosis and acting on that prediction are morally uncomfortable. They believe that the options of living one day, a year, or a decade are equally valuable and provide no basis for selection. The ethicist agrees that they have a valid point and provides information about a lottery system along these lines for which chance determines access. Selection is based on a first-come, first-admitted basis, or care could be assigned to various persons at random. However, this option is inconsistent with the duty to use resources prudently. Other nurses ask why the principle of restitution is not also being used. They think that if they become infected in consequence of having put themselves in the frontlines of the fight against the pandemic flu they should be given priority. Suzanne and the ethicist agree that the nurses have raised an important point, and add that there is a utilitarian reason for prioritizing frontline staff since their timely return to work will be important in caring for those who have become infected. They note that a nurse who has pandemic influenza would most likely be included and triaged into the red (highest priority) group, and that this is supported in the literature (Frolic et al., 2009). There is a frank discussion about borderline cases and how patients would fluctuate from one priority group to another. Discussions about how and why decisions are made would be encouraged. The safety of patients, nurses, and other health professionals is closely

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linked. All “depend on a safe moral climate in which the required organizational, material and interpersonal resources are available and the values for safe, competent, ethical care are in place” (Rodney et al., 2006, p. 24). They end their meeting by agreeing that the main goal of the triage protocol is to use resources effectively, ensuring that each person who receives the scarce resources can survive. They recognize that their approach is in accord with the expectation of the CNA’s Code of Ethics (2017) that nurses honour their duty to care when there are clinical crises, such as a pandemic. The ICU nurses recommend that all staff and the public should be informed of how and why the triage protocol was reached. Procedural justice requires communication with the public to allow everyone to reflect on the ethical and clinical arguments supporting the policy. They recommend the five procedural values proposed in “Stand on Guard for Thee” (Pandemic Influenza Working Group, 2005): 1. reasonable: that is, supported by reasons and evidence; 2. open and transparent: the process for decision-making be available for public discussion; 3. inclusive: decisions made by all groups affected and continuous opportunity for consultation; 4. responsive: be able to respond to issues and evaluate decisions when the crisis is in progress; and 5. accountable: persons making decisions are answerable for decisions made or not made. Until the meeting with the expert panel, none of these procedural values were in place. The panel believes that these values are defensible and that when they are communicated simply and clearly nurses, patients, and the general public will appreciate the rationale for them.

Case 4: Questions 1. What pandemic plan is in place in your organization? What process was used to formulate the plan, and can you identify the principles of justice underlying the plan?

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2. Does your organization’s pandemic plan provide sufficient safeguards for its employees? Do you know your rights and responsibilities if a pandemic or emergency occurs? Explore websites from the CNA and your regulatory body to review these issues. Which principles of justice would support your position if you felt that you needed to present an argument to ensure your safety as a health professional during such an event? 3. Look at the CNA position paper, Nurses’ Ethical Considerations in a Pandemic or Other Emergency (2008), and determine your role in preparedness that would contribute to capacity-building that maximizes a systems response if an emergency occurs. 4. What if you were working in an ICU when three patients requiring use of a ventilator are admitted, but only one machine is available? One is a 45-year-old woman with three children under the age of 10. Another is a homeless man with a serious mental illness and the third is a healthy 82-year-old. Referring to principles of justice, how would you prioritize these three patients for access to the ventilator? CASE 5: Medical Tourism Medical tourism is “a practice whereby patients travel outside of their home country in order to receive medical care” (Penney et al., 2011). It has become a way for some Canadians who are able to pay out-of-pocket to avoid wait times in the Canadian system. Companies broker a variety of services, some of which have not undergone clinical trials or reviews, in such locations as Barbados, Costa Rica, India, and Thailand (Turner, 2012). Being able to receive needed care more quickly can be a significant benefit for the patient. However, there are also associated risks for the patient and costs to the Canadian health system if the patient requires treatment upon returning home. One study described five kinds of risks: complications from the procedure; inadequate screening standards for transplant organs and associated infections; transmission of antibiotic-resistant organisms; lack of continuity of medical documentation; and lack of proper, informed decision-making (Crooks et al., 2013). The authors discuss ethical concerns related to autonomy and informed consent, noting that health literacy varies greatly and not everyone would know the kinds of questions to ask to ensure a safe, successful procedure. Additionally, the risk to society if an

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antibiotic-resistant infection is acquired can have broader impact beyond the immediate cost of care back in Canada if others become infected (Crooks et al., 2013). Snyder et al. (2017) note that medical tourism can also undermine the value of “solidarity”—the idea that Canadians share a common interest in maintaining and improving the public health system. “This undermining effect,” they point out, “takes place most clearly by offering a second tier of care for those persons with the financial means to access it” (p. 146). Nurses may be responsible for the care of patients after an out-of-country procedure or involved in developing policies related to their after-care. Clarification of relevant ethical values and views related to this practice is warranted. The following case provides the opportunity to consider views from various ethical perspectives. Mr. Joseph Sark, a 60-year-old hemodialysis patient, tells the nurse team leader that he will not be returning next week because he is going abroad for a kidney transplant. Mr. Sark says he did his homework and is confident that the transplant centre has an excellent record. He has been assured that organs are from cadavers and the family has approved the donation. He adds that he has been waiting two years and he can expect to wait another two years before he receives a transplant at home. His children cannot donate and he would not ask his friends. Mr. Sark explains it is a win-win situation because he will save the health care system the thousands of dollars it costs for him to continue dialysis. The whole operation, trip included, will cost him $15,000. The team leader informs him that the information he has received from the transplant centre is not correct: Where he is going organs are procured from prisoners and consent to organ retrieval is not given. He talks it over with his wife. “It’s a sad situation, Joe,” she says, “but you need the transplant. If you do not take this chance you probably will die waiting for a transplant here at home.” Mr. Sark agrees and books their flights.

Case 5: Questions 1. What reasons can be given for and against Mr. Sark’s decision? 2. Should Canada have a law preventing its citizens from receiving organs in countries known to have procurement practices that rely on coercion, kidnapping, or payment to donors?

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3. In the event that he has the transplant and, upon return to Canada, later develops serious rejection issues, should he have access to publicly funded health care to manage the transplant related problems? 4. How would you respond to the following claim: Moral condemnation of receiving transplants in countries where organs are procured through the sale of kidneys is an example of privileged countries imposing their firstworld values on other countries. If someone can sell a kidney to help their family out of poverty, privileged people in Canada have no right to judge. 5. Medical tourism is a two-way street. Some Canadian hospitals provide private care to foreign nationals and argue that the money received helps finance valuable services for their Canadian patients, such as heart surgery or cancer care. Do you agree? CASE 6: Jumping the Queue with Private Health Care Lynette Reid (2017) comments that “equity in access to health care is achieved when access is based on medical need and not on factors irrelevant to medical need, such as ability to pay (p. 155). She argues that the provision of needed care on an ‘ability-to-pay’ basis is not just a violation of health equity, it is contrary to health equity” (p. 155). Reid distinguishes three models of health care delivery in Canada that require payment of fees as a condition of accessing care: 1) the “concierge medicine” model, in which typically a physician “charges an annual fee to members of the practice ... and offers a level of personal attention that is impossible when care is funded by common (public or private) payers,” and which may include such extras as annual wellness check-ups, and aroundthe-clock access without wait times; 2) the “wellness practice” or “boutique” model, in which physicians pool with other health professionals who deliver related care; and 3) the “block fee” or “private clinic” model, in which physicians provide additional services not otherwise covered, such as third-party examinations and wart removal, by paying a “block fee” (p. 152). The case below concerns ability to pay as a conduit (and barrier) to accelerated access to consultation with a surgeon at a private clinic. By paying a fee, the patient could get an appointment much sooner than he could with the same surgeon at the publicly funded hospital.

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Hassan works part-time as a registered nurse on a surgical unit. Due to a back injury, he is unable to work. He has no benefits and is eager to return to work as soon as possible. His family physician recommends back surgery and refers him to Dr. Stone, a surgeon Hassan has worked with on the surgical unit. After three months, Hassan had not heard from the surgeon’s office. He called to ask when he would have his consultation and was told by the surgeon’s nurse he would have to wait another six months but could have it much sooner if he went to a private clinic. The cost of the consultation would be about $4000. Hassan borrowed the money from his parents, received the contact information, and made an appointment for the following week. When he arrived for his private consultation, he was surprised at being seen by Dr. Stone, who he learned was a partner with other local surgeons in the clinic. Within two weeks, he received a date for his operation at the local hospital. The surgery and hospital costs were covered by the provincial health care plan. In three months he was able to return to work. However, as a strong supporter of medicare he felt uneasy knowing that by paying for a private consultation he was able to jump the queue ahead of patients who were not able to pay.

Case 6: Questions 1. Do you think it is hypocritical for someone who has a moral commitment to medicare to jump the queue by paying for private care? What would you have done in this situation and why? 2. Do you think Dr. Stone has a conflict of interest? Explain. What about the surgeon’s nurse? She is employed by the hospital and her salary is from the public system, but at the same time promotes private business for Dr. Stone. 3. Do you believe that people with the financial resources should be allowed to spend their own funds to gain enhanced access to needed health care? 4. Supporters of private clinics say this option is needed because of long wait times. Do some research and find out how long wait times are in your area for hip and knee surgeries. Provide recommendations based on your research about how to reduce wait times.

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5. Patients with friends or family members in need of a health care service in short supply may try to use connections with a friend or family member involved in scheduling or in maintaining a wait list to jump ahead of the line. Have you encountered any instances when this occurs? How would you respond to such a request from a friend or family member?

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Martin, M.W. (2001). Responsibility for health and blaming victims. Journal of Medical Humanities, 22(2), 95–114. McDermid, F., Peters, K., Jackson, D., & Daly, J. (2012). Factors contributing to the shortage of nurse faculty: A review of the literature. Nurse Education Today, 32, 565–69. McNelly, A.S., Rawal, J., Shrikrishna, D., Hopkinson, N.S., Moxham, J., Harridge, S.D., Hart, N., Montgomery, H.E., & Puthucheary, Z.A. (2016). An exploratory study of long-term outcome measures in critical illness survivors: Construct validity of physical activity, frailty and health-related quality of life measures. Critical Care Medicine, 44(6), e362–69. McPherson, G., Rodney, P., Storch, J., Pauly, B., McDonald, M., & Burgess, M. (2004). Working within the landscape: Applications in health care ethics. In J. Storch, P. Rodney, & R. Starzomski (Eds.), Toward a moral horizon: Nursing ethics for leadership and practice (pp. 98–125). Pearson-Prentice Hall. Musto, L.C., Rodney, P.A., & Vanderheide, R. (2015). Towards interventions to address moral distress: Navigating structure and agency. Nursing Ethics, 22(1), 91–102. O’Brien, L. (1983). Allocation of a scarce resource: The bone marrow transplant case. In C. Murphy & H. Hunter (Eds.), Ethical problems in the nurse-patient relationship (pp. 217–32). Allyn & Bacon. Pandemic Influenza Working Group. (2005). Stand on guard for thee: Ethical considerations in preparedness planning for pandemic influenza. University of Toronto Joint Centre for Bioethics. http://www.jcb.utoronto.ca/people/documents/upshur_ stand_guard.pdf Pauly, B.M. (2004). Shifting the balance in the funding and delivery of health care in Canada. In J. Storch, P. Rodney, & R. Starzomski (Eds.), Toward a moral horizon: Nursing ethics for leadership and practice (pp. 181–208). Pearson-Prentice Hall. Pauly, B. (2008). Harm reduction through a social justice lens. International Journal of Drug Policy, 19, 4–10. Pellegrino, E.D. (1986). Rationing health care: The ethics of medical gatekeeping. The Journal of Contemporary Health Law and Policy, 2, 23–45. Penney, K., Snyder, J., Crooks, V.A., & Johnston, R. (2011). Risk communication and informed consent in the medical tourism industry: A thematic content analysis of Canadian broker websites. BMC Medical Ethics, 12(1), 17. Peter, E. (2004). Home health care and ethics. In J. Storch, P. Rodney, & R. Starzomski (Eds.), Toward a moral horizon: Nursing ethics for leadership and practice (pp. 248– 61). Pearson-Prentice Hall. Podgorsak, E.B. (2009). Privatization is not an answer to health care access problems, increased public funding is. Current Oncology, 16(2), 2–3.

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Qin, S., Thompson, C., Bogomolov, T., Ward, D., & Hakendorf, P. (2017). Hospital occupancy and discharge strategies—a simulation based study. Internal Medicine Journal, 47(8), 894–99. Rawls, J. (1971/1999). A theory of justice (Rev. ed.). Harvard University Press. Registered Nurses’ Association of Ontario (RNAO). (2017). Developing and sustaining safe, effective staffing and workload practices (2nd ed.). Reid, L. (2017). Concierge, wellness, and block fee models of primary care: Ethical and regulatory concerns at the public-private boundary. Health Care Analysis, 25(2), 151–67. Rescher, N.P. (1988). The allocation of exotic medical lifesaving therapy. In T.A. Mappes & J.S. Zembaty (Eds.), Biomedical ethics (2nd ed., pp. 601–11). McGraw-Hill. Rodney, P., Burgess, M., McPherson, G., & Brown, H. (2004). Our theoretical landscape: A brief history of health care ethics. In J.L. Storch, P. Rodney, & R. Starzomski (Eds.), Toward a moral horizon: Nursing ethics for leadership and practice (pp. 56–76). Pearson-Prentice Hall. Rodney, P., Doane, G.H., Storch, J., & Varcoe, C. (2006). Workplaces: Toward a safer moral climate. Canadian Nurse, 102(8), 24–27. Royal Commission on Aboriginal Peoples. (1996). Report of the Royal Commission on Aboriginal Peoples. Saul, J.R. (1997). Reflections of a Siamese twin: Canada at the end of the twentieth century. Penguin. Sen, A. (2002). Rationality and freedom. Harvard University Press. Sherwin, S. (2002). The importance of ontology for feminist policy-making in the realm of reproductive technology. Canadian Journal of Philosophy, 28(Suppl.), 273–95. Smith, N., Mitton, C., Davidson, A., & Kershaw, P. (2016). The reallocation challenge: Containing Canadian medical care spending to invest in the social determinants of health. Canadian Journal of Public Health, 107(1), e130–e132. Smith, P., Corso, L., & Cobb, N. (2010). The perennial struggle to find clinical placement opportunities: A Canadian national survey. Nurse Education Today, 30, 798–803. Smith, P., Spadoni, M.M., & Proper, V.M. (2013). National survey of clinical placement settings across Canada for nursing and other healthcare professionals—who’s using what? Nurse Education Today, 33, 1329–36. Snyder, J., Johnston, R., Crooks, V.A., Morgan, J., & Adams, K. (2017). How medical tourism enables preferential access to care: Four patterns from the Canadian context. Health Care Analysis, 25(2), 138–50.

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CH A P T E R 7

INTEGRITY Confronted with a multiplicity of complex, competing, and challenging considerations that can be roused by an encounter with poor patient care ... the individual seeks to evade or “flee” from that complexity, and the attendant anguish that it can produce, by attempting to understand themselves, and often present that understanding to others, as being unable to intervene, raise concerns, and effectively respond to prevent the continuation of that poor care because of any number of contextual or situational factors to which they can be subject in the clinical setting. —Roberts, 2017, p. 4

To have integrity is to act consistently with the considered core moral values one holds or professes. However, the values one holds may be in tension in a given instance, or in tension with the values others hold, or with the policies or expectations of the institution in which one works. In some instances the practice environment can be an impediment to what a nurse believes to be ethical practice. When tension exists between ethical ideals and experienced reality, the nurse’s sense of integrity is challenged and he or she may experience “moral distress.” The case studies in this chapter provide an opportunity to reflect on the concept of integrity and the challenge of developing and practising with integrity. Cases include conscientious reflection in the context of working in a pandemic situation and exposure to risk, conscientious refusal in connection with medical assistance in dying (MAID), moral distress in the context of inadequate options for safe discharge planning, and an issue of integrity in deciding how to respond to the mistreatment of inmates/patients in a correctional facility. 327

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1. INTEGRITY DEFINED Integrity has a unique place among the values that guide nursing practice. It is more fundamental than other values in how it pertains to our core being as moral agents. When pushed to a limit any issue involving those other values—beneficence, autonomy, truthfulness, confidentiality, and justice—can also become an issue of integrity. Borrowing from Mitchell’s (1982) helpful analysis of the concept, four constituent features of integrity can be distinguished: moral autonomy, fidelity to promise, steadfastness, and wholeness. 1.1. Moral Autonomy As adults, we are all moral agents. Through our actions or passivity, through words or silence, we make a difference in the world and in the lives of others, for good or ill. Becoming a more fully autonomous moral agent involves recognizing our power and freedom in choosing and acting, and accepting responsibility and accountability for what we do or fail to do and who we are and are to become (Storch, 2013). Moral autonomy pertains to the moral agency of the health professional and is different from patient autonomy. Both senses of autonomy are rooted in respect for individuals and freedom to choose and act. However, whereas patient autonomy pertains to the right of a competent patient to make certain treatment decisions unconstrained by others, moral autonomy refers to responsibility for the values-based choices that one makes. Moral autonomy is a task or ideal, something that one strives for. It involves a continuing passage of identity formation from passively being formed by, or subject to, external authority and the opinions of others, to actively assuming authorship of our own moral lives. Reflection is essential to this process of assuming authorship of, and responsibility for, our own lives. Indeed, moral autonomy is closely related to autonomy in the sense of moral reflection discussed earlier in the chapter on autonomy (see chapter 3). Our moral values and beliefs are initially acquired in a passive, pre-reflective way through immersion in our formative social environment—family, schooling, peer groups, community, media, and so on. In reflecting on who we are and how we experience our world, we find that we have been instilled with various moral beliefs, values, and principles. So long as we adhere to these without giving them critical examination, we

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are unreflectively subject to the influences (e.g., family, friends, community, media, societal norms) that have shaped us. As we question what we have inherited and the external authorities by which we have been influenced, we reject some things and accept and affirm others. We learn to explain our ethical actions through understanding and to justify them in a reflective manner (DeSouza, 2013). We shape our own moral code, or make the code we have inherited more fully our own by assuming responsibility for it. In doing so, we become more autonomous, directing and taking responsibility for our own moral lives rather than being uncritically guided by others. We change and grow in the process of reflecting on the values and principles that have shaped us pre-reflectively. Through ongoing reflection and dialogue with others, the values and beliefs that guide us in our actions and relationships become considered and more freely taken up, and less assumed or taken for granted. Some values and beliefs are more central than others to our identity—to who we are and who we strive to be. Some are so core to one’s identity that to act against them would be to betray oneself. To have integrity is to have and maintain a set of core values constitutive of one’s identity. If one has no core values—one cannot have integrity. If one betrays core values, one loses integrity. For someone who strives for moral autonomy, moral autonomy itself will be a core value. The challenge of maintaining integrity is complicated in consideration that one is becoming who one is; the core values constitutive of one’s identity are open to review and revision. For nurses, core values constitutive of identity will include the values of the profession as they have been passed down and are expressed in ethical codes and norms, particularly through professional codes of ethics such as the one developed and refined over time by the Canadian Nurses Association ([CNA], 2017a). Upon becoming a nurse, one commits to being shaped, and shaping oneself, in light of the values of the profession one has chosen. At the same time, these values are open to review and revision, as evidenced by the fact that codes of ethics change over time. Nurses who strive for moral autonomy—and to act with integrity—will not be blindly obedient subjects passively assuming these values but rather will engage with them reflectively, thoughtfully, and even critically. Upon reflection, nurses may fully endorse their professional values, but may also constructively challenge them.

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1.2. Fidelity to Promise The capacity to promise—to be able to make promises, have the power of will to keep them, and be held accountable if one does not—is assumed in every moral theory. Someone who cannot be counted on to keep a promise lacks, or has lost, integrity. Our core moral values and beliefs can be thought of as implicit promises to ourselves to be a certain kind of person. Others can count on and rely upon us to act consistently with the moral values and beliefs we profess and to keep whatever explicit promises we make. The concept of “professional promise” refers to a professional’s commitment to the core values of the profession, in virtue of which patients can count on and rely upon them. Historically, this commitment has been explicitly and publicly made in solemn oaths and ceremonies and still is today in many medical schools. Nurses assume the task of shaping their lives in faithfulness to promises made to patients and to themselves when they enter the profession. Indeed, nurses are expected to make, and should carefully reflect on, three core promises of the profession: to respect patient values and choices, to protect private information and confidences, and to help and not harm patients. 1.3. Steadfastness The person of integrity will be steadfast with respect to the core values he or she holds, speaking up and standing fast for what she or he believes is right. Being true to our moral code and faithful to our promises is sometimes difficult. Doing as we promise and doing what we believe is right may require sacrifice or expose us to risk. Acting on our principles sometimes requires courage, and requires that we cultivate “ethical fitness” (Storch, 2013). People of integrity are unwilling to yield their considered values and principles even when the pressures to do so are great. However, steadfastness should not be confused with being rigid or stubborn, although people of integrity risk being dismissively so labelled (Lachman, 2010). Being steadfast does not mean being unwilling to listen to others or closed to counterarguments and different ways of looking at a given situation. Although integrity requires that we stand confidently as the individuals that we are and resist pressures to just “go along with the crowd,” as individuals we exist and form our identities in community and in relation to others—family, friends, colleagues, and patients—who may not see things as we do. The person of integrity will be

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engaged in continuing self-reflection and self-examination and open to revising his or her views in community with others. Nurses work collaboratively with others for the good of those they serve. Disagreements reflecting fundamental value differences are not uncommon on interdisciplinary health teams. This is not a bad thing provided that those engaged articulate their positions in a respectful way and seek a resolution that allows team members to continue to work together and that supports and maintains both their personal integrity and that of others in aiming for the good of the patients they serve. Compromise is sometimes necessary in moral life, and is not necessarily incompatible with integrity. Often, ethical differences can be reconciled in discussion. What Benjamin and Curtis (1986, pp. 105–08) call “integrity-preserving compromise” can be found. This is not always possible, but one cannot know whether it is unless, or until, one has engaged in genuine agreement-seeking dialogue and in respectfully listening to others and has allowed one’s own initial views to be put into question. In any event, integrity does not require that one’s views about what should or should not be done in a given situation will prevail in the context of collaborative decision-making or that one necessarily agrees with final resolution that emerges in discussion. It sometimes means making compromises out of respect for other people and their sense of integrity, or to achieve the most benefit for patients possible under less than ideal circumstances. 1.4. Wholeness A human life is multidimensional. We exist in many different relationships, roles, and settings. The task of becoming whole—a task we can never complete— requires us to integrate the various parts of our lives, which include our relationships with other people, under the guidance of the values and principles that we have promised for ourselves. This is a lifelong task as we reflect on our values and principles in view of changing circumstances and changing relationships with other people. There are always new challenges of integration, and the integration will sometimes mean modifying our values and principles in light of reflection and dialogue with others. To aspire to integrity is to endeavour to achieve consistency and continuity across the various dimensions of our lives, even while being open to others and to change, and above all to changing oneself. Baylis (2007) is therefore right to question consistency and continuity as defining features of integrity and to emphasize its interpersonal nature. After

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all, the wholeness that we strive for includes our changing relationships with other people, who often have moral views different from our own. However, Baylis additionally appears to hold that having “a particular rule set” is also essential to integrity, as if persons who did not have that rule set could not be persons of integrity (p. 199). By contrast, on our account of integrity it is entirely possible—and this possibility is constitutive of integrity—that persons having quite different and even contrary “rule sets” or moral commitments could equally be said to have integrity. For example, the fact that two nurses hold opposing beliefs about the morality of medical assistance in dying (MAID) and subscribe to opposing “rule sets” does not mean that one of them lacks integrity. Each could have integrity in holding to their beliefs provided they are clear about how those beliefs relate to their professional nursing values and they are also open to listening to others and to other viewpoints. Absent such openness, what might appear as integrity is dogmatism. The opposite of wholeness is a kind of self-dividedness or moral schism. Such division can exist between our professed ideals and our actual practices. Hypocrisy is an extreme instance of this tendency. A division can also exist between the different roles or relationships in our lives. Some people are different at work than they are at home, or with one group of people than with another. Such differences can be appropriate to a point, but at the extremes they can amount to a betrayal in one role of the values promised in another role. Striving for integrity requires that we seek to integrate our ideals across the various roles and relationships in which we find ourselves. We endeavour to realize our core values and principles in and throughout our practices in different roles and contexts. However, our striving for wholeness needs to be tempered by recognition, and acceptance in some measure, of the world as it is, and not just as we might wish it to be. Sometimes we find ourselves in situations of value conflict across or within different contexts and different facets of our identity. In some instances, our “off-duty” values may be hard to square with our professional values. For example, a nurse may be faced with a patient in need who has committed a horrendous crime that goes against everything he or she believes about what is right and good. The nurse may even have hatred for the patient. Nonetheless, the nurse’s values as a professional will require him or her to set negative feelings aside and to provide the best care possible for the good of the patient in accordance with their professional code of ethics. The nurse may experience a disconnect in so doing, but such disconnect is not inconsistent with integrity.

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In other instances, we may find ourselves impeded by circumstances from realizing core values and ideals—whether professional or personal—to which we are deeply committed. The disconnect between our values and ideals and what we can, or even must do, in the circumstances, can be a challenge to integrity. For example, a nurse may profoundly disagree with an institutional policy or practice by which he or she is expected to be guided—perhaps even to the point of believing that the policy or practice is at odds with professional practice. In such instances of disconnect the nurse may find it difficult or even impossible to maintain integrity and will experience moral distress—a concept we elaborate on later in this chapter. Integrity as wholeness means striving to integrate or harmonize different and sometimes competing values that we hold, and to square our considered values with our sometimes-competing commitments to others and the demands made, and expectations put upon us, by others. This is an ongoing challenge because the process of conscientious reflection upon our values is ongoing and because the relationships and networks in which we find ourselves are always changing. This requires not just self-reflection but also reflection in relation to others, and with others. As Baylis (2015) puts it in her analysis of conscience as relational, “integrity is not just about inner harmony (i.e., the self) but also about the harmony of the whole (i.e., the self-in-community)” (p. 21).

2. PERSONAL AND PROFESSIONAL INTEGRITY Although maintaining integrity can be a challenge in any profession, it is particularly so for nurses. The history of nursing has been in part a struggle of nursing for moral autonomy and integrity. Nurses have a history of subordination in health care settings, and have often lacked the power to define their activity in the workplace (Rodney, Buckley et al., 2013; Varcoe & Rodney, 2009). In the early history of nursing, nursing was not organized as a profession with the right and responsibility to articulate its own standards and values and was not empowered to regulate its practitioners. Moral autonomy was not valued or promoted in nurses. A very early textbook in nursing ethics illustrates the point well: “Implicit, unquestioning obedience is one of the first lessons a probationer must learn, for this is a quality that will be expected from her in her professional capacity for all future time” (Robb, 1900, p. 57).

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The nursing profession has made tremendous progress since its early days. A decisive moment occurred when nurses, against considerable resistance, committed themselves to a code of ethics (Crowder, 1974; Jameton, 1984; Lamb, 2004). A code of ethics is a “professional promise” to patients and to the public in general. It publicizes the values and principles for which nurses will stand and be held accountable (CNA, 2017a; Oberle & Bouchal, 2009). The profession regulates members through nursing regulatory bodies that set standards. Today, nurses are well-educated. The scope of practice has expanded. It is recognized that in order to be accountable as moral agents nurses must reflectively and respectfully appraise instructions and “orders,” working within the bounds of their competence and scope of practice. Nurses are not obligated to follow orders that they believe are harmful to patients or that do not respect patients’ informed decisions. Regulatory colleges, nursing organizations, and employers have guidelines about how to proceed in situations of conflict about patient care (see, for example, British Columbia College of Nursing Professionals [BCCNP], 2012; CNA, 2017a). However, notwithstanding the advances that have been made, the health care system is still structured largely according to a medical model (Dubrosky, 2013). Even today, in some clinical settings, nurses and student nurses are expected to be subservient, and may be unable to learn or care for patients as their scope of practice permits. In such settings it can be difficult to maintain integrity. Some commentators speak of “oppression” in this regard, drawing attention to the limited power of nurses in such contexts to exercise significant control over their work and working conditions. Exposure to workplace violence has been a problem in many nursing workplaces and remains a problem (Rodwell & Demir, 2012). Nursing’s sociopolitical situation greatly influences the ability of nurses to address issues bearing on the profession (Rodney, Kadyschuk et al., 2013). Because historically the nursing profession has been predominantly pursued by women, analysis of the circumstances that undermine integrity needs to attend to gender and the broader social, cultural, and political context of the profession. Further, such analysis ought to help nursing better support men in nursing as well as nurses who do not conform to a gender binary identity (McDonald, 2019, p. 279). Someone who enters a profession assumes a duty to stand for and act in accordance with the values and standards of that profession. In assuming a professional role, they assume a professional identity, shaped by the values and norms of the profession, which they must integrate with the values at the core

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of their identity as persons. The scope of various professions includes practices that, while sanctioned by a code of ethics, can nevertheless be inconsistent with core personal values. Lawyers are expected to defend people they find morally repugnant. Soldiers are expected to kill people under certain circumstances, which may be problematic not only for pacifists but for soldiers otherwise willing to do so but who in a given instance of war do not believe the cause is just. In some instances, and for some people, questions of conscience arise in the execution of their duties as professionals. The core values for which nursing stands are unlikely to conflict with personal values. Benefiting others, being respectful of autonomy, being truthful, and preserving confidentiality, being just: Who could argue with such ideals? However, some members of the profession will have moral objections to some of its endorsed practices. For example, the profession accepts abortion, and recently has supported the federally regulated provision of MAID in Canada as a legitimate health service. Many nurses fundamentally oppose one or other or both of these procedures on principle as offending their core moral values as persons or as professionals. Conscience is essentially tied to responsible moral agency, indeed a precondition for it, and the profession is respectful of personal conscience. At the same time, the profession is committed to ensuring that patients have timely and equitable access to the services of the profession. The CNA Code of Ethics for Registered Nurses (2017a) balances respect for conscience with commitments to the patient in stating that, “if nursing care is requested that is in conflict with the nurse’s moral beliefs and values but in keeping with professional practice, the nurse provides safe, compassionate, competent and ethical care until alternative care arrangements are in place to meet the person’s needs or desires” (p. 17). And, building on related provincial nursing association documents, the CNA (2017b) National Nursing Framework on Medical Assistance in Dying directs that nurses who have a conscientious objection to MAID are required “to take all reasonable steps to ensure that the quality and continuity of care for clients are not compromised” (p. 12). If MAID is unexpectedly proposed or requested without an arrangement in place for alternative providers, “nurses must inform those most directly involved of their conscientious objection” (p. 12). Nurses must “also ensure a safe, continuous and respectful transfer of care to an alternate provider that addresses the unique needs of a client” (p. 12). A nurse who disapproves of MAID for ethical or faith-based reasons must care for the patient and family until such a transfer occurs. Moreover, it is incumbent upon nurses to

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avoid situations in which such issues of conscience will arise. The CNA (2017a) qualifies this point by adding, “if nurses can anticipate a conflict with their conscience, they notify their employer or persons receiving care (if the nurse is self-employed) in advance so that alternative arrangements can be made” (p. 17). Similar provisions can be found in policy guidance from various nursing regulatory bodies (e.g., College of Nurses of Ontario [CNO], 2017). Reconciling personal and professional values and duties can pose other serious issues in addition to ones of conscience. There is a difference between paying lip service to the ethical ideals of your profession and making them authentic and lived in your daily practice. Aspiring to ethical ideals can be difficult and rewarding. Reflection and effort are required to shape oneself in accordance with these ideals and to pursue them with commitment. For example, respect for autonomy may not come naturally, or maintaining a caring manner can be difficult when working with a patient one personally dislikes. Nurses need to listen respectfully to the concerns of all patients as well as their family members, whether they “like” them or not, if they are to manage such difficult situations in practice (Doane & Varcoe, 2005; Falkenstrom, 2017). Nurses should thoughtfully reflect on their own biases and prejudices, regardless of their practice focus or role in the profession. Nurses should also consider how what they do in their personal life can negatively affect their professional reputation, or the reputation of the profession as a whole. The personal use of social media can be especially problematic in this regard given the potential for information posted to become public or known to patients. Nurses of course have a right to a private life and to express themselves on social media. However, freedom of expression is justifiably limited in several respects. For example, disclosing confidential information about a patient is not acceptable, whether this occurs in face-to-face conversation with friends over lunch or in social media postings. The profession, through its regulatory bodies, has a legitimate mandate to curtail breaches of confidentiality and even to discipline nurses who breach their duty of confidentiality, not just when they do so in their professional role but also when they do so in their personal lives. The profession clearly has interests and responsibilities that justify this reach into personal life on such grounds. The situation is less clear cut when the personal behaviour in question does not egregiously violate professional duties but does negatively reflect on the nurse as a professional or on the profession as a whole. Knowing something about the history that informs the profession’s concern with reputation helps put the issue

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in perspective (Holliday & Parker, 1997). Nursing’s reputation was a major concern for Florence Nightingale as she sought to professionalize nursing in the mid1800s, with an emphasis on ensuring through selection and education that nurses were people of good moral character. The original Nightingale Pledge, created in her honour in 1893, began with the nurse making a solemn pledge to “pass my life in purity” (Fowler, 1999, p. 56). Nurses were expected to display moral virtue not just in their professional lives but also in their personal or private lives. As Sellman (1997) points out, Nightingale believed that moral virtues should “permeate the lives of nurses” on and off duty: “Nurses are not expected to be of one character at work and a different character outside of work” (p. 9). Nightingale’s stern position on the morals of nurses in the conduct of their personal as well as their professional lives was part of her strategy for elevating the professional status of nursing given its poor reputation, not entirely undeserved, at that time. Hoyt (2010) claims that Nightingale brought nursing from a disreputable and immoral vocation into the honest and ethical profession that is enjoyed today by emphasizing strict morals in the personal and work lives of her students (p. 331). Sellman (1997) points out that her emphasis on the overall character of nurses was in large part responsive to the “environment in which nurses were poorly regarded” and with a view to improving the image of nursing to recruit more “respectable” and “educated women” (p. 9). The situation of nursing today is markedly different than it was in Nightingale’s time. To be sure, stereotypes that undermine nursing professionalism persist, often perpetuated by the entertainment media, despite the significant gains that nursing has achieved in reaching its professional status (Buresh & Gordon, 2000; Rezaei-Adaryani et al., 2012). However, the reach of the profession into personal lives and behaviour of nurses is much narrower and much more carefully circumscribed. Nurses can be held accountable for behaviour in their personal lives that brings the profession into disrepute, but primarily for the reason that, and insofar as, disrepute can undermine patient confidence and trust in the profession and in individual practitioners, which in turn can undermine the therapeutic relationship.

3. INTEGRITY AND MULTIPLE OBLIGATIONS Conflicts can arise when nurses are expected, or obligated, to do something inconsistent with their personal or professional values. Integrity can be at issue

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in any of four intersecting relationships: with patients, with the institution in which one practices, with other health professionals, and with the community. 3.1. Integrity and the Nurse-Patient Relationship Conflict can arise between a nurse’s respect for the patient’s autonomy and his or her own values, personal or professional. This can happen when a patient wants something that the nurse believes is contrary to professional judgment or that is otherwise inappropriate. For example, a nurse may be conflicted by a patient who requires and asks for assistance to smoke tobacco. More extreme situations can raise direct questions of conscience—for example, a patient who refuses life-saving treatment for reasons the nurse thinks are not weighty, or when respecting the patient’s wishes would mean being complicit in something that the nurse believes to be seriously morally wrong, unprofessional, or even illegal. End-of-life decisions can be especially problematic. As we have indicated above, recent changes to the law concerning medical aid in dying will generate conscience conflicts for some nurses. 3.2. Integrity and the Nurse-Employer Relationship Most nurses are employed in health care institutions and do not contract directly with patients. They provide care within parameters determined by the organization, which in some instances may constrain their ability to practise according to the ethical ideals or standards of their profession (McDonald & McIntyre, 2019; Varcoe & Rodney, 2009). Integrity issues arise when an employer expects or requires nurses to comply with policy and practices that are inconsistent with their own personal or professional values. Safe, compassionate, and ethical care can be jeopardized by economic pressures, unsafe practices, and patient flow demands. For example, nurses may feel compromised in their commitment to patients by institutional policies or practices concerning discharge planning that restricts patients’ choice of the long-term care facility where they will be transferred and probably spend the rest of their lives. An employer may have a least-restraint policy that on paper is consistent with legal and professional norms but nonetheless expect nurses to use physical or chemical restraints more freely than they believe is necessary. In exceptional circumstances, keeping a patient safe can take priority over treating that person in a way that would otherwise be expected. Some nurses

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find these kinds of interventions difficult to defend, and the use of restraints remains the subject of considerable discussion. In the meantime, nurses work to institute preventative measures that make actions such as use of seclusion and both chemical and physical restraint less necessary. Such measures include having adequate activity programs for confused elderly patients, advocating for “sitters” to stay with agitated patients, and becoming expert in therapeutic and de-escalation measures that prevent aggression. The nursing profession also has a responsibility to continue to engage in research and discussion about such practice problems. Discrepancy between nursing ideals and practice realities sometimes comes to a head in a patient assignment refusal. Examples include refusing additional assignments because the workload is already too heavy and patients will be endangered, or because the assignment is beyond the nurse’s professional competence. Nurses are encouraged to reflect on and address the root causes of these problems by engaging at higher levels of policy and planning to improve the quality of patient care and advocating for a moral community in which they can live their values (Hardingham, 2010; Rodney, Buckley et al., 2013; Varcoe & Rodney, 2009). The CNA Code of Ethics (2017a) recommends that nurses act broadly to improve the health of communities. Nurses can find this activism a difficult route to follow when they work alone. Finding likeminded peers is a good strategy. Professional, regulatory, and labour organizations can be resources to develop strategies to change policies and practices. To be silent, look the other way, and conform is to be morally complicit in supporting actions believed to be unethical, unsafe, or contrary to professional and legal expectations. Such ways of coping can reflect a troubling level of moral disengagement (Bandura, 2002; Rodney, Kadyschuk et al., 2013) in which nurses abdicate the ethical foundations of their practice (Oberle & Bouchal, 2009). Questions of professional integrity in employment can also arise when a commitment to the patient is not directly at stake. The employing institution may treat nurses as less than professional, and not allow them to work to their scope of practice, or fail to respect their professional and moral autonomy. For instance, it has been well documented that when not enough support staff are present, nurses’ time for patient care is disrupted by non-nursing tasks such as answering telephones and finding equipment (CNA, 2009; McDonald & McIntyre, 2010). Psychological and physical violence and sexual harassment in the workplace are far too common for nurses (Najafi et al., 2017; Varcoe, 2010).

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Such problems occur (at least in part) because nurses often lack input into policy-making and control over the conditions of their practice. Again, passive complicity is not a moral option. Nurses must be strong advocates for themselves, for their colleagues, for their profession, and for their patients and their patients’ families and communities. The CNA Code of Ethics (2017a, p. 5) states that “nurses and employers have an obligation to advocate for conditions that support ethical nursing practice, including quality practice environments—for the benefit of persons receiving care, and for each other” (p. 5). Nurses at all levels of practice must come together with other nurses and colleagues in other professions to make positive changes in their practice environments (Rodney, Buckley et al., 2013; Storch et al., 2009). Liaschenko and Peter (2016) describe institutional arrangements that undermine nurses’ moral agency and integrity and suggest that to challenge the corporate “master narrative” institutions become moral communities where nurses can dialogue about their moral identities, relationships, and responsibilities (p. s19). To act with integrity as moral agents nurses should continue to cultivate skill in analyzing and responding to the challenges they face and create moral spaces in institutions where meaningful dialogue can take place (Liaschenko & Peter, 2016). For example, the Registered Nurses’ Association of Ontario ([RNAO], 2016) urges nurses to “enhance the quality of work environments and improve outcomes for patients/clients by establishing processes and structures to promote intra-professional collaboration” through “collaboratively establishing processes for shared decision-making in a variety of circumstances” and “introducing non-hierarchical, democratic working practices” (2016, p. 9). 3.3. Integrity and the Nurse-Colleague Relationship Issues of integrity can also arise in relationships with colleagues. The classic example involves a conflict between a nurse and a physician about patient care in which the nurse is caught in the middle between his or her obligations to the patient and the expectation of the physician. Not so long ago, this conflict would have been described along the lines that Johnstone (1988) casually put it: “Nurses are expected to obey doctor’s orders, on the one hand, and yet are held independently accountable on the other” (p. 155). It is a mark of progress in the profession that the term “obey” is seldom used today in the context of the relationship between nurses and physicians, at least in the Western world. The earlier belief that the nurse’s primary loyalty is to the physician has been

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superseded by the belief that nurses’ primary obligation is to the patient. Today this belief is enshrined in various statements by the profession. It is accepted that when ethical concerns arise about a colleague a nurse has an obligation to intervene on behalf of the patient (CNO, 2009). Physicians still write and give “orders,” and normally nurses follow them if there is no good reason to question or challenge them. However, nurses are accountable for their actions (CNA, 2017a). Even if another discipline has provided the order, that does not exempt them from accountability for the effects of that action or its moral good. Nurses are no longer the stereotypical handmaidens of physicians or passive subordinates. Physicians and other health care professionals recognize allied health care professionals as colleagues. Increased opportunities for interprofessional education among health science students are being provided to help health professionals understand each other and work together more effectively. More and more frequently, decisions are made collaboratively through discussion in interdisciplinary teams, and the patient is often involved in developing the plan of care. Nursing has come a long way from the days when unquestioning obedience was a virtue. However, in some practice environments nurses must contend with the culture shaped by this legacy (see Storch & Kenny, 2007, for an insightful discussion of the nurse-physician relationship). Conflicts do arise, and are not necessarily rooted in the now discredited expectation that nurses are subordinate instruments of physicians. Disagreement about patient care among professional providers—and not just between physicians and nurses—is bound to occur even, and perhaps especially, when there is mutual acceptance and recognition of the moral autonomy of all concerned. Indeed, respectful disagreement and discussion about values among the team can lead to better decision-making for and with patients. In situations of disagreement or conflict with colleagues—with physicians, other nurses and allied health professionals, students, managers, and administrators—respectful questioning and discussion should be the first thing one tries. Often, if not usually, competing views can be reconciled. However, good faith efforts to resolve disagreement and conflict through discussion and integrity-preserving compromise do not always succeed. In such instances, the nurse should seek guidance from respected colleagues and professional organizations which issue guidance. The CNA (2017a) Code of Ethics, particularly Appendix B (pp. 33–43), provides useful advice about how to proceed in such circumstances.

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3.4. Integrity and the Nurse-Community Relationship Although the majority of nurses are employed in institutions, there has been a significant shift to work in locations outside hospital walls. As Côté and Fox (2007) have pointed out, “increased need for health services amongst a growing elderly population and other groups such as children and youth, those suffering from mental illness, people living in rural or remote areas, and First Nations and Inuit communities has resulted in increased demand for home and community care” (p. 4). Some nursing commentators believe that the community will become the primary employment setting for nurses in the future. The practice environment in the community is less structured than it is in institutions. Rules and norms governing professional behaviour are not as settled and codified. Nurses in the community have much greater latitude for the exercise of judgment and decision, and must work much more independently. The community environment can also pose considerable challenges for the nurses’ commitment to the provision of needed, quality care to patients. The seriousness of these challenges will depend to some extent on whether the shift from institutional to community-based care is supported by a sufficient reallocation of resources. The expectation that money will be saved by a decreased reliance on institutions is a major factor driving the shift to the community. If a considerable portion of the savings incurred as a result of deinstitutionalization is not redirected to developing infrastructures for care in the community, the shift to the community will amount to abandonment. Nurses working in the community, like nurses working in institutions, can find themselves hamstrung by policies or lack of resources. For example, the community-based nurse and patient might both agree that it would the best if palliative care could be provided in the patient’s home but the level of funding available may not be sufficient for this to occur. The policy for applying for long-term care could require selecting homes with short wait lists, notwithstanding that the nurse is aware of significant safety issues in some of these homes (and perhaps is expected to be silent about what he or she knows). Nurses in the community can find themselves working in co-operation with patients’ family members, volunteers, and other less highly skilled caregivers. Nurses recognize that less-skilled personnel can do many caring jobs, and they appreciate how valuable and important the work of family members and volunteers can be (Sakanashi & Fujita, 2017). But nurses also know that caring attitudes and good intentions alone may not be enough for effective,

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quality care. Given budget constraints, volunteers and underqualified personnel may be delegated tasks beyond their competence, and family members may be burdened with care responsibilities beyond their abilities (Peter, 2013). This tendency could have serious implications for the quality and safety of care. Issues of integrity will arise for nurses in the community to the extent that policies and supporting resources, and in particular human resources, are insufficient to ensure the kind of safe, quality care to which nurses are professionally devoted. These issues will be all the more pronounced the greater the responsibility of the nurse for the care of the patient—including the supervision or co-ordination of less-qualified or even underqualified caregivers (Peter, 2013).

4. INTEGRITY AND MORAL DISTRESS Although the statement is over thirty years old, Mappes’s (1986) account of the difficulty of acting with integrity remains pertinent: “It is well and good to say what nurses should do. It is quite another thing, given the forces at work in the everyday world in which nurses work, to expect nurses to do what they ought to do” (p. 131). The inhibiting “forces” referred to include such things as economic pressures, sexism, and power imbalances. Nurses might internalize these “forces” and thus inhibit themselves from engaging in ethical practice (Oberle & Bouchal, 2009, p. 259; Rodney, Kadyschuk et al., 2013). This tension between ethics and reality has long been a recurrent theme in the literature on nursing ethics. For example, early on Flaherty (1985) voiced the ethical ideal and norm that “nurses are obliged by ethics and by law to question directives and policies about which they have concern” (p. 102). She acknowledged, however, that pressing realities may make it difficult to practise in accordance with this obligation. She warned that nurses “often find themselves in situations in which they have limited authority, and when they attempt to exercise their broad ethical and legal responsibilities to and for patients, they will feel powerless, excluded, and dependent if there is a lack of nurse/physician/administrator collaboration and co-operation” (p. 110). These observations describe a common predicament. The ethical problem has to do not so much with deciding what is morally right, but rather with doing it in a constrained environment that is not conducive to the realization of professional values. Despite being supported by professional values, and

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even to some extent because of them, nurses sometimes find themselves in situations in which it is difficult or costly to do what they know to be right. In such situations they will find it difficult to realize or uphold their promised values and principles—that is, difficult to maintain integrity. Novice nurses starting out their careers sometimes experience a disconnect between the ethical norms and ideals they learned in nursing school and the everyday practice realities and constraints they face in a given employment situation. Dahlke and Stahlke Wall (2017) note that “nursing students become quickly disillusioned when they move into clinical practice settings because caring is not as central to practice as they are socialized to believe” (p. 3) and report that they “have seen the anguish that our students feel when they perceive the gap between the ideals of caring that they are taught and the realities of their work” (p. 4). It may be that, as Dahlke and Stahlke Wall (2017) argue, the ideals of caring as theorized and widely propagated in nursing are to some extent unrealistic and inappropriate. The experience of a disconnect or gap between ideals and the realities of practice is reason to question one’s ideals as well as those practical realities, and even to adjust ideals to reality in some measure. However, untenable ideals aside, some practice environments are more conducive to the ethical practice of nursing than are others. Health institutions and organizations may vary in the quality of the policies they have in place, management styles, and organizational culture. There may be a discrepancy between the ethical norms and ideals an institution proclaims in policy and what in fact happens, or is expected to happen. Some colleagues will be less conscientious and committed than others. Adjusting to different practice environments and organizational cultures can be challenging for nurses at any stage of their career. However, it can be especially so for novice nurses who lack experience and must rely on mentors and senior colleagues to find their way. Education in nursing does not end after graduation. On-the-job learning continues throughout a nurse’s career. This works well when, as will usually be the case, mentors and senior colleagues are conscientious and the norms of the organizational culture are ethically sound. When this is not the case, novice nurses may find themselves in something of an ethical dilemma. It can be tempting simply to go along and get along, abandoning one’s ideals or silently keeping them to oneself. Understandably, novice nurses may be uncertain of the ideals that have been inculcated in them in their education. Speaking up could be perceived as disrespectful and

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create uncomfortable awkwardness in relationships. As Gallagher (2011) notes, organizations may be “defensive, unsupportive or potentially punishing” (p. 1). Nurses, whether novice or not, may lack certain virtues required for them to act, such as courage. However, going along or remaining silent could cause even greater discomfort or moral distress. Moral distress has long been a serious problem in nursing. Jameton first coined this term in 1984 as related to nursing and it has spawned a robust discussion in the nursing ethics literature (e.g., Austin, 2007; Corley et al., 2005; Hamric et al., 2006; Hardingham, 2004; Rodney et al., 2004; and Wilkinson, 1988). Varcoe and Rodney (2009) state that moral distress arises from the difficulty that nurses experience in enacting their moral agency: “As the enactment of moral agency is prerequisite to professional practice, the social structure of nurses’ work (within current health care contexts dominated by corporatism and narrow definitions of efficiency) threatens the foundation of professional practice as well as the wellbeing of nurses” (p. 136). Moral distress occurs when “nurses (or any moral agents) ... are constrained from moving from moral choice to moral action—an experience associated with anger, frustration, guilt and powerlessness” (Rodney, Kadyschuk et al., 2013, p. 169; see also Jameton, 1984). One area in which moral distress is particularly troublesome is care of the critically ill or dying. In an early study, for example, Rodney (1994) reported that “given the situational constraints they experience in their practice,” nurses “often experience moral distress when they care for patients undergoing life-prolonging treatment” (p. 41). These constraints “go beyond the purview of bioethics (patient-centred problems) into professional and institutional problems such as communication conflicts, questionable competence, and excessive workloads” (p. 41). Moreover, the problems identified are likely to be compounded by “an overall problem of resource allocation” (p. 42). Endof-life issues continue to be a major source of moral distress for nurses and other members of the health care team (Rodney, Kadyschuk et al., 2013), and the issues are confounded by worsening problems with resource allocation (Hamric & Blackhall, 2007; Hamric et al., 2006; Storch, 2004). However, moral distress is certainly not limited to end-of-life issues. For example, it can arise in connection with lack of access to appropriate care, such as inability to admit someone due to lack of acute care beds, or discharging a patient home when that patient does not have adequate support. Resource allocation issues have become more challenging, for a variety of reasons. New technologies and medications can be costlier; persons are living

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longer with chronic and complex health conditions. Stein (2001) draws attention to the rise of a corporate culture in health care that too often emphasizes cost-saving and efficiency at the expense of quality of care. Efforts to balance efficiency and quality care are ongoing (Smith et al., 2014). Corporate climates can stifle nurses’ practice goals, with unfortunate consequences, as nurses find they are expected to make do with less and accomplish, if not more, at least the same as they have in the past (Rodney, Buckley et al., 2013). Nurses can feel frustrated and defeated as they experience a lack of control over their practice and the quality of their work. Some nurses respond to the moral distress they experience by attending only to patients’ immediate physical needs and demeaning other nurses’ attempts to attend to emotional needs (Varcoe & Rodney, 2009), reflecting a sense of moral disengagement. A recent study has shown that moral disengagement can result from a stressful work environment which can lead to nurses adopting deviant behaviour (Fida et al., 2016). The authors suggest that a protective factor in these situations can be ethical leadership, which can involve helping to create a “practice environment that enables nurses to meet their ethical obligations” (College of Registered Nurses of British Columbia [CRNBC], 2012, p. 18). Regardless of the particular conceptualization, the cumulative effects of moral distress are recognized as a serious concern. Webster and Baylis (2000) argue that unresolved moral distress can lead to moral residue—moral residue being what we carry with us when we know how we should act in certain cases but were unwilling or unable to do so (see also Mitchell, 2001; Oberle & Bouchal, 2009). Webster and Baylis acknowledge that the experience of moral residue can encourage the moral agent to reflect on and improve his or her practice, but they also warn that the moral agent may move toward denial, trivialization, or unreflective acceptance of the incoherence between beliefs and action (see also Rodney, Kadyschuk et al., 2013). Another outcome of the dissonance between nurses’ moral values and their inability to act on them, along with a related sense of powerlessness, is decreased retention rates (Fida et al., 2016; Pendry, 2007). Organizations that respond to nurses’ moral distress experience “higher levels of staff satisfaction resulting in a decrease in staff turnover” and influence “staff and patient satisfaction, quality of care and patient outcomes” (Pendry, 2007, p. 220). Nurses challenged by institutional constraints that seriously compromise their ability to provide quality care will have to find ways of maintaining their integrity, but, once again, the problem also needs to be addressed in broader

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and more general terms. One study suggests that “a person-centred approach at both the individual and structural level, together with knowledge provision, supervision and ethical rounds” may help nurses provide care within an environment where their personal-professional integrity is protected (Nilsson et al., 2016, p. 54). Probably the greatest challenge facing the nursing profession today is to work toward attitudinal and structural changes that will make the care environment more conducive to ethical nursing practice.

5. CONCLUSION: FROM MORAL DISTRESS AND DISENGAGEMENT TO CO-OPERATION AND MORAL COMMUNITY Some years ago nurse ethicists Yarling and McElmurry (1986) wrote that “professional nurses are conceived in moral contradiction and born in compromise” (p. 67). They saw a nursing world in which ideals were contradicted by realities, and ethical promise yielded to unholy compromise. “The fundamental moral predicament of nurses,” Yarling and McElmurry claimed, “is that often they are not free to be moral because they are deprived of their free exercise of moral agency” (p. 65). This encapsulated something important about the difficulty of acting with integrity in nursing a generation ago, especially for nurses working in hospitals and other sometimes authoritarian environments, and still has resonance. However, monumental changes have occurred in the scope of practice of nurses, nursing education, and regulatory and professional ethical expectations. Passivity and silence in the face of barriers to practising with integrity is not an option. Nurses today are expected to exercise their moral agency and to be accountable for their decisions and actions, or failure to decide or act. The CNA (2017a) states this expectation very cogently: “Nurses need to recognize that they are moral agents in providing care. This means they have a responsibility to conduct themselves ethically in what they do and how they interact with persons receiving care” (p. 5). In light of this prescription, conceiving oneself and one’s situation in nursing as being “deprived of moral agency” can be an excuse for not seizing the moment to exercise one’s agency to the extent one can. Roberts (2017) sees this as a form of bad faith, noting that “the attempt to understand our behaviour as being determined by the contextual factors and challenging conditions to which we can be subject in any given situation is a falsehood and a profound form of self-deception precisely because it

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disregards, dissembles, or even denies the freedom that we can apprehend at any moment” (p. 3). As Mappes (1986, p. 129) emphasized a generation ago, “the nurse’s moral obligation is no less real” when she or he is constrained or pressured by difficult realities. Notwithstanding significant advances that have been made in the social and institutional contexts in which nurses practice, nurses will sometimes find themselves in situations or work environments in which they will feel unduly compromised in their ability to practice consistently with their professional values. Lack of collaboration and respect among health care disciplines or conditions not conducive to good patient care should not be accepted. When the practice work environment is not conducive to the delivery of quality care consistent with professional values or respectful of the moral autonomy of nurses, nurses should put the issue on the table and address it, thoughtfully and respectfully, with a firm grasp of values and principles at stake—values and principles that are articulated and applied in their Code of Ethics (CNA, 2017a). Thoughtful discussion can go a long way toward warding off or resolving conflict and changing unacceptable practice realities. Reflection is crucial to the exercise of one’s moral agency and to formulating responsible action plans for addressing issues. The CNA statement quoted above adds that “nurses in all facets of the profession need to reflect on their practice, on the quality of their interactions with others and on the resources they need to maintain their own well-being” (2017a, p. 5). However, a moral life is not developed in a monologue. The CNA statement goes on to say that “there is a pressing need for nurses to work with others (i.e., other nurses, other health-care professionals and the public) to create the moral communities that enable the provision of safe, compassionate, competent and ethical care” (CNA 2017a, p. 5; see also Rodney et al., 2006, p. 27). Discussing concerns with nurse educators and professional practice leaders and lobbying through professional organizations and labour unions can help to provide the momentum required for change to bring practice reality in line with moral ideals. The concept of social justice can be relevant in this regard (CNA, 2017a, pp. 18–19), and particularly for public health nurses (MacDonald, 2013). For example, Matwick and Woodgate (2016) elaborate the concept of justice with reference to a homeless person and an Indigenous mother with two children, representing two groups especially in need of advocacy by nurses and other care providers. Moral community is important not just for remedying deficiencies in the practice environment and the health care system that lead to stress and moral

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distress. Studying and working in a moral community is essential for nurses striving to put into action their ethical values. A moral community is the foundation for a healthy work environment and for avoiding, reducing, and remedying barriers—which can be people, policies, the administration system, and the culture of the workplace or organization—to practising with integrity. Moral community is also important for supporting nurses in managing the stress and moral distress they are bound to experience at some times. Some degree of stress, and even moral distress, is part and parcel of intervening in the lives of patients, families, and communities when so much is at stake for them. Values will sometimes be in tension or conflict. Powerful emotions are engaged, for patients and providers alike. Oberle and Bouchal (2009) write that nurses need to ensure their own fitness to practice; that is, the “physical, mental, and emotional capacities to deal with the often stressful and demanding health care environment” (p. 257). Nurses can draw support from others in this. As Woods (2014) writes: “We really must find ways to support each other” (p. 128). Woods suggests that “certain nurses could act as ethics counsellors or mentors on the unit level” and that “charge nurses should find time to discuss morally distressing patient care situations with their nursing staff ” (p. 128). Suggestions for helping nurses deal with conflict, stress, and moral distress include identifying the experience, acknowledging its existence, providing education in orientation and other workplace initiatives, and talking about it (Pendry, 2007). Holding ethics rounds, initiating an ethics consultation, and accessing chaplaincy services can also be helpful (Zuzelo, 2007). Nurse educators, professional practice leaders, professional organizations, community-hospital councils, and labour unions can be valuable resources and allies. Nursing has made progress. For example, Varcoe and Rodney (2009) found that nurses respond to moral distress by enacting moral resistance in both overt and covert ways. For instance, when faced with ethical problems, and despite constraints, nurses “made efforts to ‘get to know’ their patients, to work with others as a team, and to negotiate better care” (p. 137). Another study found that complex and skilled relationships that nurses form with patients and other professionals helped them successfully resolve ethical dilemmas (Barlow et al., 2017). Overall, integrity requires nurses to take action on the basis of their professional values. When personal risks are associated with standing up for what is right, this can take courage. The courage to take a stand is best enacted when nurses stand with, rather than against, others. As Andrew Jameton (1990) put

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it, “We want, as participants in institutional culture, to be able to notice our moral problems and to cope with them with sensitivity and integrity and to keep our health care institutions responsive to their moral goals” (p. 450). Twenty-five years later Musto et al. (2014) say that “if nurses are to successfully negotiate their moral understandings and responsibilities (agency), a more robust identification of the characteristics of habitable work environments (structure) will promote future interventional work aiming to reduce moral distress and its concomitant relational trauma” (p. 98). As moral agents, nurses are individually responsible and accountable for their decisions and actions. However, as moral agents they exist in relation to and community with others—other nurses, other health care providers, and the patients, families, and communities they serve. In the health care context, this community is bound together by the shared goal of providing safe, competent, and ethical care.

CASE STUDIES CASE 1: Conscientious Reflection about Exposure to Risk in Context of a Pandemic In the past, as employees of health care organizations nurses have not been at liberty to refuse assignments, or had very limited support in labour law and from professional organizations in doing so. Significant advances have been made in the profession and in the recognition of professional autonomy. Guidelines have been issued by professional nursing organizations that empower nurses, for some reasons and under certain circumstances, to make such refusals. Some acceptable reasons for assignment refusal are related to professional integrity. For example, competence is an important value in nursing, and depending on the circumstances nurses may be justified in refusing an assignment because they recognize that they lack the knowledge, skill, experience, or judgment to provide the expected level of care. Another acceptable reason is personal conscience. Under some circumstances refusal may be justified based on personal beliefs and values, as in the case of abortion or MAID. Yet another acceptable reason for assignment refusal is concern for personal

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safety, which is at issue in the case below concerning the rights and responsibilities of nurses in a pandemic. Andrew is an infection control nurse involved in pandemic planning for the hospital. During education sessions on pandemic planning with frontline staff, some nurses say that they will not come to work during a pandemic. Andrew explains the hospital policy that all nurses have a duty to care and must continue working during a pandemic and that the hospital will provide protective equipment and do everything it can to ensure staff safety. Nonetheless, some staff remain firm in their position and assert that even if the hospital “does everything it can to ensure safety,” there will remain some risk, and that whatever obligations they may have to work during a pandemic, they have legitimate interests and other obligations that take priority. Given the shortage of nurses, the employer is committed to working with all staff to address their concerns. The hospital expects Andrew to lead this effort with the goal of ensuring that all nurses will fulfill their assigned roles and obligations in the event of a pandemic.

Case 1: Commentary In this case understandable concern for oneself and obligations to family members in view of risks are in tension with the duty to provide care. How should these values in tension be balanced? What can Andrew do to help nurses work through the ethical issues involved? Andrew could start by listening to the staff ’s fears and acknowledging their concerns. They may be worried for themselves or about infecting their families. They may be concerned about income loss or being unable to discharge family responsibilities if they become ill. Some may have health conditions that render them more vulnerable to infections. These are legitimate concerns. Of the 43 patients who died from SARS during the 2003 outbreak, two were nurses. One of the lessons learned from the SARS outbreak was the importance of transparency and openness. The nurse in the meeting who claimed that some risk remains even when the most effective protective measures are put in place is correct. Andrew should acknowledge this fact and discuss the issue of risk openly and frankly, based on the best evidence available. This crucial discussion is challenging not just because known risks are difficult to assess

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and quantify but because the next epidemic may bring unknown risks or new uncertainties about risk. In this regard, it would be helpful to note that everyday nursing carries some measure of risk, even despite the most diligent efforts to reduce risks. This is true in all professions and occupations to some extent. To note this is not to be dismissive or nonchalant about nurses’ concerns, but rather to put risk in perspective. As the CNA puts it in an appendix to the Code of Ethics (2017a), “Historically and currently, nurses provide care to those in need, even when providing care puts their own health and life at risk (for example, when they work in war-torn areas, places of poverty, places with poor sanitation, etc.)” and “encounter personal risk when providing care for those with a known or unknown communicable or infectious disease” (p. 38). Even so, the CNA recognizes that “disasters and communicable disease outbreaks” are extraordinary events and “call for extraordinary effort from all healthcare personnel, including nurses” (p. 38). Putting risk in perspective will also require clarifying the nature and extent of nurses’ obligation to provide care in the face of extraordinary circumstances. Because of the complexity involved in mandating health care professions to work in a pandemic, there has been hesitation to develop hard and fast rules, policies, or laws (Bensimon et al., 2012). Health professionals are left with some degree of discretion to decide how and even whether they will participate. The CNA Code of Ethics (2017a) is a helpful starting point for reflection and discussion about the nature and extent of the duty to provide care in extraordinary situations. Andrew could explain that, as the collective voice of the nursing profession in Canada, the CNA has a mandate to pronounce on the ethical obligations of nurses and that its pronouncements have a certain moral authority. One way of thinking about this normative situation is in terms of a kind of covenant or contract between the profession and society. Society grants the nursing profession the right and power to regulate itself in some measure and supports institutions for training and educating its members; in turn the profession has a responsibility to meet social needs and ensure that its members are prepared to do their part. In extraordinary situations like disasters and outbreaks, the need for health care is especially great. Society, and patients, count on health professionals, who in virtue of their special knowledge and clinical experience are suited to provide needed care. The professional role of nursing entails the willingness to step up in extraordinary circumstances. As is the case for other occupations, such as firefighting and policing, this sometimes requires courage.

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Having clarified the grounds or rationale for the duty to provide care, Andrew could discuss with the nurses the extent of and limitations on this duty. According to the CNA Code of Ethics (2017a), “during a natural or humanmade disaster, including a communicable disease outbreak, nurses provide care using appropriate safety precautions in accordance with legislation, regulations and guidelines provided by government, regulatory bodies, employers, unions and professional associations” (p. 9). However, the duty to provide care, like other duties, is not absolute. Duties articulated in the profession’s code of ethics are issued in the understanding that they need to be reflected upon, interpreted, and applied with judgment in the circumstances, which sometimes involves balancing among duties in tension or conflict. A code of ethics does not remove the need for nurses to use professional judgment but rather supports it, and guides reflection, in recognition that nurses are morally autonomous. The CNA Code of Ethics is helpful on this point: Nurses carefully consider their professional role, their duty to provide care and other competing obligations to their own health, to family and to friends. In doing so, they understand the steps they might take both in advance of and during an emergency or pandemic situation so that they are prepared for making ethical decisions.... Value and responsibility statements in the Code support nurses’ reflection and actions. (p. 39)

The Code of Ethics recognizes “there may be some circumstances in which it is acceptable for a nurse to withdraw from providing care or to refuse to provide care” (p. 38). Importantly, it qualifies the duty to provide care with reference to the concept of “unreasonable burden,” which “may exist when a nurse’s ability to provide safe care and meet professional standards of practice is compromised by unreasonable expectations, lack of resources or ongoing threats to personal and family well-being” (p. 38). When reflecting on their duty to provide care in situations of extraordinary risk to their own well-being, health care professionals have a reasonable expectation of reciprocal support, such as expedited prophylaxis and priority treatment if they become infected (Bensimon et al., 2012). The CNA Code of Ethics (2017a) asserts that, in tandem with the nurses’ duty to provide care, “employers have a reciprocal duty to protect and support them as well as to provide necessary and sufficient protective equipment and supplies that will ‘maximally minimize risk’ to nurses and other health-care providers” (p. 39). High-quality

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equipment should be provided and workplace hazards be removed. Education and staff development must keep up with any adjustments in practice required. When nurses are not supported through education, communication systems, and infection-control departments, and lack a safe environment, they may be justified in withdrawing care. But before they do so, nurses should advocate for improvements and offer recommendations for resolving issues. Andrew has assured the nurses that “the hospital will do everything it can to ensure safety.” Nonetheless, some nurses may be doubtful that this is true, particularly if there have been occasions in the past when they felt that the hospital has cut corners. Explaining and fielding questions about the protective measures to be taken would be helpful for backing up his reassuring statement. In recognition of the concern that some nurses could become sick despite the best protective measures, it could be helpful, and evidence of the hospital’s commitment to its “reciprocal duty,” if Andrew could assure the nurses that the hospital would provide support and fair compensation for any staff affected by pandemic conditions. Having helped the nurses to reflect on their obligation to provide care in the face of extraordinary risk, Andrew could turn to helping nurses to think through the sorts of ethical issues that may arise in caring for patients in a pandemic situation. The CNA Code of Ethics (2017a) says that in planning for a pandemic or disaster, all parties need to work together “to make the fairest decisions” and “help set priorities in as transparent a manner as possible” (p. 40). In a policy statement on emergency preparedness, the CNA notes that “nursing leadership and its role in planning are essential to a comprehensive and coordinated approach to emergency preparedness and response” (CNA, 2012). During a pandemic, access to health care will be rationed using a triage system. Ethical principles underpinning pandemic planning include trust and equity (Pandemic Influenza Working Group, 2005). While normally all patients have an equal claim to health care, during a pandemic difficult decisions must be made about implementing various control measures for public safety. Utilitarian and population health considerations come to the fore and, among other things, provide justification for prioritizing patients—such as health professionals and first responders—who play a vital role in managing pandemic conditions and saving lives. Andrew should also provide the nurses with information about the nature of the hospital’s planning process and team. The nurses may have legitimate questions and useful suggestions about this. Who is involved in the planning

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process? Are various stakeholders—staff unions, members of the community, frontline nurses—appropriately represented and involved? How can nurses provide input into this process? What consultation will take place regarding any planning documents that may be produced? In all of this, the best approach for Andrew is to address the nurses as the health professionals that they are, calling them to conscientious reflection on their role as nurses and calling to mind the goals and aspirations of the profession in the context of their covenant with society and with the patients who count on them to be there when needed. He should solicit and listen carefully to their concerns and respond to them as openly and honestly as possible and engage them in the planning process in recognition of their experience and expertise, and their indispensable role in planning for and responding to the demands of an extraordinary situation.

Case 1: Questions 1. What do you know about your employer’s or clinical placement’s plan for a pandemic or local disaster? What moral principles or values form the basis for their policy? Could you continue to work during these situations under the policy of your organization? What recommendations would you make? 2. Discuss with colleagues their experience during a similar situation. What were their fears and loyalties, and how did these impact their professional integrity? How did they deal with their concerns and how did the organization respond? How would you have dealt with their concerns? 3. The CNA Code of Ethics says that “value and responsibility statements in the Code support nurses’ reflection and actions” (p. 39). What does “reflection” mean in this context? How do integrity and conscience come into play in such reflection? 4. Coming out of the workshop, one of the nurses says: “I accept that the hospital will do everything it can to minimize risk, but even so there would be some risk and I would not come to work during a pandemic. I have a young child and a newborn baby at home and my partner is on

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assignment overseas with the military. In my case, the duty to provide care is outweighed by my family obligations.” What do you think about this? 5. What proactive lessons can be learned in terms of planning for future pandemic or other critical challenges? Who should be involved in such planning? CASE 2: Conscientious Objections to MAID at the Individual and Institutional Levels The core values for which nursing stands are unlikely to conflict with personal values. Benefiting others, respecting autonomy, being truthful, preserving confidentiality, being just: Who could argue with such ideals? However, there are specific procedures that conflict with personal values held by some nurses, or with how they interpret the core values of nursing. Therapeutic abortion and MAID are two such procedures. Some nurses fundamentally oppose one or the other or both of these procedures on principle and for reasons of conscience. Some faith-based health care institutions do not provide abortion or MAID for similar reasons. The passage of federal legislation in 2016 permitting MAID is a momentous change in professional practice and policy (this is discussed in detail in chapter 8). Health care providers and institutions are still coming to terms with how to implement and manage this change in all of its nuances and complexities. Implementation practices and policies are evolving as cases present. As health care providers experience cases first hand, new challenges and questions arise, sometimes in the context of powerful emotional responses. The case described below concerns a nurse who works in a Catholic health care institution searching his conscience and struggling to cope with powerful emotions evoked in response to a request for MAID. Pedro Melendez, a registered nurse, is employed at Evergreen, a long-term care home owned and managed by a Catholic health organization. When MAID became legally available, he sought employment there because he believed in the sanctity of life and does not approve of MAID for ethical and religious reasons. One of the residents is George Brewster, a 78-year-old retired university professor with a progressive motor neuron disease who has been living at Evergreen for the past nine years. In the three years Pedro has worked there,

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he has come to know Mr. Brewster well and has developed a close relationship with him. On a number of occasions, he has had the opportunity to play cards with him and listen to stories about his fascinating life. Mr. Brewster has recently reached the stage in his disease where he has minimal physical functioning and his muscle contractures are causing him increasing pain. He remains alert and oriented, but he has trouble articulating his speech clearly due to disease progression and uses a speech aid. He has a large extended family who visit him regularly. His son Charles, a nurse, has taken the lead in chairing regular conferences regarding his father’s care. The health care team members who participate in these conferences include a physician, a nurse case manager, and Pedro. At a recent care conference, Charles tells the team that his father has requested MAID. He states that his father knows that death is imminent and wants the suffering to end. He does not want to get to the point where he is no longer alert. Most people with this condition die from respiratory failure, which occurs when they cannot get enough oxygen from their lungs into their blood, or when they cannot properly remove carbon dioxide from their blood due to paralysis of the muscles that control breathing. Using his communication aid, Mr. Brewster confirms that he wants to be assessed for MAID. He is confident he will be eligible and is determined that MAID should take place as soon as possible. He says he would feel most comfortable dying at the facility, surrounded and cared for by staff who have become his “second family.” The care team starts by discussing with Mr. Brewster his pain and discomfort and the palliative measures that have been used thus far. They inform him that they cannot provide MAID in their facility because it is contrary to the organization’s values, though they will continue with palliative supportive care. The nurse manager explains that he would have to go home or be transferred to a secular institution that can help him with his request, but Evergreen’s policy does allow for the external assessors to come to its premises to do an assessment for MAID . The conference ends with Mr. Brewster expressing sadness about not being able to have the procedure done among familiar staff faces in what has been his “home” for the past nine years. He nods approvingly as his son instructs the team to arrange for an external assessor to come in as soon as possible. The nurse manager explains that in the meantime they will also ask for a palliative care consultation so that Mr. Brewster can be as comfortable as possible while he is being assessed and his transfer is being organized.

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Following the meeting Pedro finds himself deeply impacted and struggles to come to terms with his response. This was his first experience of being involved with a request for MAID and he is surprised by the powerful emotions it unleashed in him. He was profoundly touched by Mr. Brewster’s remark about his “second family.” Although he does not agree with Mr. Brewster’s decision to seek MAID , he understands and respects his decision, and empathizes with his preference to die in the facility. He is sure that the assessment will find that Mr. Brewster is a suitable candidate, and is convinced that Mr. Brewster will follow through with MAID . Pedro is also saddened at the prospect of Mr. Brewster having to leave the facility he calls his home to have the procedure performed, and saddened at the realization that, after having spent so much time with him and developing a bond, he will not be there for him in this last stage of his end of life journey. He thinks back to his reasons for seeking employment at Evergreen in the first place and searches his conscience in light of his experience. As a matter of conscience, he remains opposed to MAID and to participation in it. However, given that Mr. Brewster has decided as he has, Pedro also feels as a matter of conscience that it is not right that Mr. Brewster should have to put himself in the care of strangers, and that it is unfortunate that he will not be able to provide support to him at the end of his life. He wonders how he would have managed the situation if he had been working at another institution that was able to grant Mr. Brewster’s request.

Case 2: Commentary Mr. Brewster’s request for MAID has created a crisis of conscience for Pedro. His view prior to coming face-to-face with his first specific request was that participation in MAID would go against his principles and his conscience. That was why he specifically sought out employment in a facility in which he would not be expected to participate. However, having received a request for MAID from a resident for whom he has provided continuous care over an extended period of time and with whom he has developed a close relationship, he finds himself pulled in an almost opposite direction. He is committed to Mr. Brewster’s care, and it is understandable how his conscience could also pull him in an opposite direction—toward ensuring that Mr. Brewster is able to spend his last days under the care of his “second family” in the facility that has

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been his “home” for nine years. That is what Mr. Brewster wishes, and it would be better for Mr. Brewster than the alternative of being uprooted at such a trying and solemn time and placed in unfamiliar surroundings with unfamiliar people, regardless of how well-meaning those caregivers may be. Nonetheless, this is not possible given the policy of the facility, a policy that drew Pedro to Evergreen in the first place. The challenge he faces as he finds himself divided about this issue is how to reconcile conflicting core commitments, each of which has reasons of conscience on its side. One meaning of integrity is to be steadfast in holding to one’s core principles—principles that one holds as a matter of conscience. What are the implications for integrity when one holds core principles that are in conflict? Another meaning of integrity, derived from its root meaning, is wholeness. What are the implications for integrity as wholeness when one is torn or divided in conscience, pulled in opposite directions? Although the issue arises for Pedro in consequence of a request for MAID, a thorough review of the case would require that questions be asked about what happened prior to and leading up to the request. Was Mr. Brewster or his son previously made aware of the facility’s policy? What previous discussion did Pedro or other staff have with Mr. Brewster or his son about his condition, prognosis, and care options? Was this the first time that Mr. Brewster raised the issue of MAID ? Was there something in particular that precipitated the request at this time? Was it the experience of worsening pain that motivated the request? What palliative measures were tried to ameliorate his pain? Was there some other dimension to his suffering, perhaps associated with psychological or spiritual concerns that might be addressed in some other way? Is there any reason to doubt the voluntariness of the request? The background information provided with this case does not enable us to answer these and other important and pertinent questions. However, one would expect that the care team has done, or will do, some probing in relation to Mr. Brewster’s request. The processes of ongoing communication with and physical support for Mr. Brewster ought to be consistent with best practice standards of palliative care delivery, regardless of his decision regarding MAID. Let us put aside questions about what led up to the request and assume that they have been appropriately addressed and that the reasons for the request have been appropriately probed. The eligibility criteria for MAID delineated in the current federal law include that the person must have “a grievous and irremediable medical condition” (Bill C -14, para. 241.2.1.a). Death must be

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reasonably foreseeable. These criteria would be applied by anyone brought into the facility to do an assessment. Until the formal assessment has been done, it is not certain that Mr. Brewster will be found to be eligible, and it is not certain that if eligible he will elect to proceed with MAID. Nonetheless, given Mr. Brewster’s condition and prognosis, Pedro has good reason to believe that he will be found to be eligible for MAID, and he feels sure that Mr. Brewster will proceed. Given the facility’s policy, Pedro and the health team would not be able to provide MAID to Mr. Brewster even if they were willing and wanted to. Regardless of one’s views about this policy or about participating in MAID, it is unfortunate that Mr. Brewster, having decided to proceed with MAID, cannot have it done as he wishes in this second home. Pedro knows that this would be better for Mr. Brewster than the alternative of going to another facility, and better for Mr. Brewster if he could and did participate. This realization is troubling to him given his care commitments as a nurse and his commitment in particular to Mr. Brewster at the end of his life. Nonetheless, Pedro and the team can in some measure fulfill and express their commitment to Mr. Brewster by supporting him to the extent possible under the circumstances: listening to his wishes, responding to questions from him and his family members, providing emotional support even if simply by being there with and for him, and by making the assessment and the transfer of care as smooth and seamless as possible for him and his family. Conscience is an essential ingredient for responsible moral agency, indeed a precondition for it. The exercise of responsible moral agency is conscientiousness. Searching his conscience in light of his face-to-face encounter with a request for MAID, Pedro wonders how he would respond to such a request if he were employed in a facility that did provide MAID. Such searching and questioning do not mean that conscience is wavering or diminishing or that one is at risk of compromising or losing one’s integrity. Quite the contrary. Conscience is a process of self-examination in which the standpoint from which one examines oneself is itself subject to examination and possible revision. A conscience that takes a given values standpoint for granted and does not search itself is not much of a conscience; steadfastness that is unquestioning, or single-mindedness to the point of not being able to feel the pull of other ways of seeing or minding, is not integrity but stubbornness or dogmatism. In searching one’s conscience one may come to revise one’s standpoint and change one’s mind, or one may reaffirm one’s standpoint in a deeper way

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informed by a greater appreciation for other standpoints toward which one may also feel one’s conscience pulling. Pedro searches his conscience and wonders. What feelings and thoughts are swirling in his mind? Perhaps in light of his experience he wonders whether, in cases in which he has formed a long-term relationship with a patient as he had with Mr. Brewster, he should or would now agree to participate in MAID if it were permitted in his facility, following his patient through to the end of his journey. It is possible for someone to be opposed to participating in MAID under some or most conditions or circumstances for reasons of conscience or principle but not in others, and under these other circumstances and conditions to feel compelled to participate directly or indirectly as a matter of conscience. Likewise, it is possible, and consistent with an active conscience, for someone who initially supported and participated in MAID to change his or her views about it. Alternatively, perhaps Pedro wonders how the situation would be managed if, working in a facility that provided MAID, he remained opposed to participating for reasons of conscience, even in situations like that presented by Mr. Brewster. In this he could find support in the ethics of health professions, which are respectful of personal conscience and seek to balance this to the extent possible with a commitment to providing care consistent with patient wishes and needs. In a review of 17 guidance documents issued by Canadian nursing regulatory bodies, Pesut et al. (2019) note that conscientious objection “figured prominently in all” (p. 125). The CNA Code of Ethics (CNA, 2017a) states, “if nursing care is requested that is in conflict with the nurse’s moral beliefs and values but in keeping with professional practice, the nurse provides safe, compassionate, competent and ethical care until alternative care arrangements are in place to meet the person’s needs or desires” (p. 17). Building on related provincial nursing association documents, the CNA (2017b) National Nursing Framework on Medical Assistance in Dying asserts that nurses who have a conscientious objection to MAID are required “to take all reasonable steps to ensure that the quality and continuity of care for clients are not compromised” (p. 12). If MAID is unexpectedly proposed or requested without an arrangement in place for alternative providers, “nurses must inform those most directly involved of their conscientious objection” (p. 12). Patient care and safety are priorities. Once given an assignment nurses cannot leave or abandon a patient until replaced by a competent nurse who can provide or assist with the procedure. Nurses must “also ensure a safe, continuous and respectful transfer

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of care to an alternate provider that addresses the unique needs of a client” (p. 12). Moreover, it is incumbent upon nurses to anticipate and avoid situations in which conscientious objection may arise as an issue, to the extent this is possible. The CNA (2017a) advises that “if nurses can anticipate a conflict with their conscience, they notify their employer or persons receiving care (if the nurse is self-employed) in advance so that alternative arrangements can be made” (p. 17). Pedro has acted consistently with these provisions by seeking employment with a facility that does not provide MAID and by also ensuring that Mr. Brewster and his family receive the support they deserve. Pedro’s situation illustrates the need for support for nurses who have ethical conflicts and subsequent moral distress. One new and promising way that some institutions are using to provide such support is called a “Code Lavender” (Stone, 2018). When a Code Lavender is called, a special team comprised of persons with skills in crisis intervention and management is put into action. Team members may come from a variety of backgrounds, including nursing, spiritual care, ethics, art therapy, and music therapy, and be drawn from various hospital-based support services. The services of the team may be available not only to nurses and other health care providers but also to patients and family. The kind of support offered may be immediate—during or immediately following a crisis. Or the support may occur after the event, in conjunction with debriefing and with reviewing the event in order to learn from it and make changes to practices or to systems as appropriate. Being able to draw on such a resource could be helpful for Pedro and his colleagues to cope with the emotional strain of not being able to provide the care Mr. Brewster wished for and that they believe would have been better for him than the alternative. A Code Lavender team might also be helpful for reviewing what happened and deciding whether changes could be made to improve how similar situations might be handled better, or possibly even avoided, in the future. The team could also make recommendations for ongoing emotional support of all health care providers—for instance, through regular de-briefings. In addition to the personal and professional issues, the case of Mr. Brewster raises broader policy issues with respect to the laws and rules under which health care providers practice and by which they are both enabled and constrained. The faith-based health care facility in which Pedro works will permit assessment for MAID to occur on its premises, but will not provide MAID. This raises a policy issue for some people: Should health care institutions that are publicly funded be required to provide MAID given that MAID is considered a

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legally sanctioned health care treatment? Some Catholic and other faith-based health care facilities may not permit assessment to occur on their premises. Should they be required to? These issues are not addressed by the current legislation and are passionately debated. There is a danger that nurses and other health care providers will become unduly polarized about these issues to the point that what divides them overshadows what unites them. To value integrity in health care delivery means that we ought to support each other across all sectors—professional groups, faith-based groups, and geographic regions—as we explore together complex questions about how best to support dying patients and their families. At the time of writing this chapter there are numerous professional association and health care organizational conferences taking place across Canada to discuss ongoing MAID implementation, which are helping to address such questions. There are also other important policy issues that may in the future be addressed by additional legislation. The policy issues currently under debate are eligibility criteria for MAID as concern three types of request for MAID not recognized in the current legislation: requests by mature minors, advance requests, and requests where a mental disorder is the sole underlying condition. In December 2016 the Canadian government engaged the Council of Canadian Academies (CCA ) to conduct independent reviews of evidence related to these types of requests. The CCA appointed expert panels to conduct these reviews and in 2018 released three reports, one on each of the types of request (2018a, 2018b, 2018c). The evidence reviewed in these reports will inform ongoing national debates about whether any or all of these types of requests should be provided for in law. All of this is uncharted territory for the health professions. It should not be surprising to anyone that with such monumental changes to practice and policy, issues of conscience and of integrity are bound to arise and intensify.

Case 2: Questions 1. What are your feelings as you read this story? How would you feel if you were caring for Mr. Brewster? How would you feel if you were Mr. Brewster? 2. Have you experienced situations in which you felt divided and pulled in opposite directions by opposing values, each of which you thought to be

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core to your identity as a person or as a professional? What implications does being divided or torn in this way have as concerns personal and professional integrity? Discuss. 3. To what extent do you think it is appropriate for the law and institutional policies to accommodate persons who object to participating in MAID for reasons of conscience? Review the provisions the CNA has made for accommodating conscience (outlined above in the presentation of the case) and discuss whether you think the CNA strikes the right balance and why. 4. Outline reasons for and against requiring faith-based organizations that receive public funding to provide MAID. What do you believe, and why? 5. How do you experience conscience? Can you think of situations in your experience as a student or in your nursing practice when your conscience was engaged? Do you think of conscience as something that is static and infallible, or something that can change over time in view of experience, reflection, and dialogue with others? Discuss. CASE 3: Hospital Overcrowding and Discharge Planning Emergency rooms across Canada are over-crowded. The reasons are complex. The emergency room may be the only option to access care when community clinics are closed. Patients may wait in the emergency room for an inpatient bed. On the inpatient units, some patients wait for transfer to long-term care, alternative levels of care, rehabilitation, and palliative care. Other patients could go home if they were provided more community care for a few days until they are stronger and safer on their feet. The system is frozen. Those patients stopping the bed-flow are sometimes unfortunately referred to by frustrated staff as “bed-blockers.” When a person comes to the emergency room there are several options: 1. be admitted for treatment of an acute or chronic issue; 2. be discharged home, without need for community supports; and 3. be discharged home when assessed to not need admission to an acute care bed, but requiring more services than community care can provide.

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Community services vary across the country. The services provided, and the hours of service, can vary significantly. Some who require community care beyond what is publicly available may have financial resources to pay for extra services themselves. Others, like Mrs. Gill in the case below, are not so fortunate. Mrs. Gill is aged 90 and lives alone in her small apartment. She was brought to the emergency room after a fall, the fourth one in the past month. She uses a walker; each of her falls happened when she was transferring from her bed to stand. Mrs. Gill is mentally alert and has good recent and remote memory. She is socially isolated, having out-lived her friends. Her children are senior with their own health problems and her grandchildren are studying abroad. She has meals on wheels delivered to her home and receives one hour of personal care each morning and evening, which is the maximum number of hours available from the regional health care service. Upon assessment, Mrs. Gill was told that she did not have a fracture and could go home. She tells her nurse, Eileen, that she has applied for a longterm care bed but needs to wait at least one month for a bed to be available, and she does not have the money to pay for extra help during that time. Due to pain from her fall, she will not be able to transfer from the bed to use her commode without assistance, which could mean that she will have to wear an incontinence pad and remain wet in bed until her personal care worker arrives. Mrs. Gill is very demoralized and says she has no reason to live and that next time she falls she will not call for help. Eileen is troubled. She knows that Mrs. Gill is not safe to go home because she does not have access to the kind of care she needs and knows she does not qualify for admission. She thinks that it is unethical to discharge Mrs. Gill under the circumstances. She thinks that the health care system has failed Mrs. Gill and wants to help her, but feels powerless. She goes home overwhelmed by moral distress. As she prepares for bed she continues to think of Mrs. Gill.

Case 3: Questions 1. What do you think about the use of the term “bed-blockers”? Do you think nurses should ever use the term? What other terms have you heard used to discuss patients that you think may be morally problematic, and why?

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2. Discuss the concept of “moral distress” in relation to Eileen’s experience. What could Eileen do to address the moral distress she is experiencing? 3. Integrity has four components: moral autonomy, fidelity to promise, steadfastness, and wholeness. Discuss these four components with reference to Eileen’s situation. 4. Have you ever been in a situation similar to Eileen’s—when you felt the system had failed a patient? Discuss the situation. 5. Propose ways to preserve your integrity when faced with these difficult circumstances. From whom or what organizations can you seek help to preserve your integrity? CASE 4: Responding to Mistreatment of Patients in Correctional Facility Nurses are sometimes employed in positions that place them in a situation of tension or conflict between their duties to their patients and the culture of the institution environment in which they work. Such tension or conflict can occur in any setting, but is especially pronounced in forensic or correctional settings. Lines can become blurred when nurses are employed in correctional facilities, which in the first instance are dedicated not to health care but to “correction” and rehabilitation of those found guilty of having transgressed laws, and which operate according to very different norms than do hospitals or other health care institutions. In a qualitative study of 37 correctional nurses working in seven different prisons in Northern Italy, Sasso et al. (2016) identified several themes, including obstacles to quality care and the challenge of negotiating the demands of custody with the ethical responsibilities of providing care. Austin et al. (2009) comment that “practicing ethically in forensic psychiatric environments presents a daunting task, as practitioner-patient relationships occur within a moral climate shaped by the competing demands of ‘custody’ and ‘care’” (pp. 835–36). From their survey of the literature, they note several issues which, although not necessarily unique to health care in forensic contexts, are exacerbated and complicated by the dual agency of correctional nurses and the tension or conflict between custody and care, including: the use of chemical restraints for security rather than therapeutic purposes, the expectation of practising with an expanded scope of practice, risk to personal safety, confidentiality, random

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drug testing, and managing personal feelings in relation to patients who have committed horrible acts. They note that in “no other environment is the provision of healthcare so closely intertwined with the needs and demands of the justice system” (p. 837). Trust and patient advocacy, so central to an ethical professional relationship, take on “additional dimensions” in forensic contexts (p. 839). Inmates are often prone to being distrustful in general, and especially of those who work in an institution that, from their perspective, is not oriented to their well-being but to “correction” and protecting the community. As employees of the institution that is incarcerating them, nurses can find it difficult to gain or maintain their trust. Inmates are stigmatized and deprived of rights and privileges that patients in other health care settings normally enjoy. In virtue of their vulnerability, their need for advocacy is greater than for other patient groups. However, given the nature of the institutional environment, effective advocacy at the individual level is challenging, if not impossible. Indeed, the challenges posed by the intertwining of health care and the justice system are so great that Austin et al. (2009) pose the question of whether ethical practice is even possible in such contexts (p. 839). They argue that the principles-based approach used in other areas of health care is not an adequate framework for ethical practice in such contexts and suggest instead a framework based on relational ethics, with an “emphasis on concepts of interdependency, authentic dialogue, persons in relation, and relational environment” (p. 844). The case below concerns a nurse working in a correctional facility who has to decide how to respond to mistreatment of inmates. This kind of issue can arise in other types of health care environments, and particularly in retirement homes and residential care facilities in which residents are vulnerable, but it has added complexities in a correctional facility. Stephen is employed as a nurse in a maximum-security correctional institute. Many inmates have mental health and other persistent health problems. Stephen’s responsibilities include counselling, administration of medications, and teaching about health. Several patients tell Stephen that the guards use physical force to “settle things down.” Stephen sees that the prisoners have unexplained bruises on their bodies. One evening Stephen sees for himself guards being rough in their treatment of inmates. He talks to a guard in the health clinic, who tells him that force is needed to maintain order for prisoners and staff. Stephen has also learned that guards use

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seclusion to control inmates. He has been told that even though they are to be checked on for safety at regular intervals, that doesn’t always happen. Stephen disapproves of the guards’ actions, and feels that he must do something about how his patients are being treated. However, he knows that reporting these incidents will be highly unpopular with his peers and management. He depends on the guards to have a safe environment. If Stephen reports the guards, he may have less protection and be ostracized.

Case 4: Questions 1. How might Stephen go about bringing the mistreatment of inmates to the attention of appropriate authorities? What resources would you suggest that could be helpful to him? What ethical principles would guide your argument? 2. Think of a situation in your own practice that was not acceptable from your perspective or that of your colleagues. What environmental factors were present that supported or interfered with your ability to maintain integrity in your work? How did or could you deal with these to make appropriate changes? Are there internal or external resources that could support you? 3. Suppose Stephen discusses the situation with a nursing colleague. His colleague tells him: “Stephen, we are responsible for the care of inmates when they are brought to us for health issues. Only then do ‘inmates’ become our ‘patients.’ How they are treated in their cells and units is not our responsibility. We can’t fix the system.” How would you respond to this statement, and why? 4. In this chapter we distinguished four aspects of the concept of integrity: moral autonomy, fidelity to promise, steadfastness, and wholeness. Discuss the issue Stephen must work through in relation to each of these aspects.

REFERENCES Austin, W. (2007). The ethics of everyday practice: Healthcare environments as moral communities. Advances in Nursing Science, 30 (1), 81–88. Austin, W., Goble, E., & Kelecevic, J. (2009). The ethics of forensic psychiatry: Moving beyond principles to a relational ethic approach. The Journal of Forensic Psychiatry & Psychology, 20(6), 835–50.

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College of Registered Nurses of British Columbia (CRNBC). (2012). Standards of practice, 1–24. Corley, M.C., Minick, P., Elswick, R.K., & Jacobs, M. (2005). Nurse moral distress and ethical work environment. Nursing Ethics, 12(4), 381–90. Côté, A., & Fox, G. (2007). The future of home care in Canada: Roundtable outcomes and recommendations for the future. http://www.ppforum.com/sites/default/files/ Future_homecare_report_EN_0.pdf Council of Canadian Academies (CCA). (2018a). The state of knowledge on advance requests for medical assistance in dying. The Expert Panel Working Group on Advance Requests for MAID . https://cca-reports.ca/wp-content/uploads/2019/02/TheState-of-Knowledge-on-Advance-Requests-for-Medical-Assistance-in-Dying.pdf Council of Canadian Academies (CCA ). (2018b). The state of knowledge on medical assistance in dying for mature minors. The Expert Panel Working Group on MAID for Mature Minors. https://cca-reports.ca/wp-content/uploads/2018/12/The-Stateof-Knowledge-on-Medical-Assistance-in-Dying-for-Mature-Minors.pdf Council of Canadian Academies (CCA ). (2018c). The state of knowledge on medical assistance in dying where a mental disorder is the sole underlying medical condition. The Expert Panel Working Group on MAID Where a Mental Disorder Is the Sole Underlying Medical Condition. https://cca-reports.ca/wp-content/ uploads/2018/12/The-State-of-Knowledge-on-Medical-Assistance-in-DyingWhere-a-Mental-Disorder-is-the-Sole-Underlying-Medical-Condition.pdf Crowder, E. (1974). Manners, morals, and nurses: An historical overview of nursing ethics. Texas Reports on Biology and Medicine, 32(1), 173–80. Dahlke, S., & Stahlke Wall, S. (2017). Does the emphasis on caring within nursing contribute to nurses’ silence about practice issues? Nursing Philosophy, 18(3), e12150. https://doi.org/10.1111/nup.12150 DeSouza, N. (2013). Pre-reflective ethical know-how. Ethical Theory and Moral Practice, 16, 279–94. Doane, G.H., & Varcoe, C. (2005). Family nursing as relational inquiry: Developing health promoting practice. Lippincott, Williams, & Wilkins. Dubrosky, R. (2013). Iris Young’s five faces of oppression applied to nursing. Nursing Forum, 48(3), 205–10. Falkenstrom, M.K. (2017). A qualitative study of difficult nurse-patient encounters in home health care. Advances in Nursing Science, 40(2), 168–83. Fida, R., Tramontano, C., Paciello, M., Kangasniemi, M., Sili, A., Bobbio, A., & Barbaranelli, C. (2016). Nurse moral disengagement. Nursing Ethics, 23(5), 547–64.

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Stone, R.B. (2018). Code lavender: A tool for staff support. Nursing, 48(4), 15–17. https://doi.org/10.1097/01.NURSE.0000531022.93707.08 Storch, J.L. (2004). End-of-life decision-making. In J.L. Storch, P. Rodney, & R. Starzomski (Eds.), Toward a moral horizon: Nursing ethics for leadership and practice. Pearson-Prentice Hall. Storch, J.L. (2013). Nursing ethics: The moral terrain. In J. Storch, P. Rodney, & R. Starzomski (Eds.), Toward a moral horizon: Nursing ethics for leadership and practice (pp. 1–19). Pearson-Prentice Hall. Storch, J.L., & Kenny, N. (2007). Shared moral work of nurses and physicians. Nursing Ethics, 14(4), 478–91. Storch, J., Rodney, P., Pauly, B., Fulton, T., Stevenson, L., Newton, L., & Makaroff, K.S. (2009). Enhancing ethical climates in nursing work environments. Canadian Nurse, 105(3), 20–25. Varcoe, C. (2010). Interpersonal violence and abuse: Ending the silence. In M. McIntyre & C. McDonald (Eds.), Realities of Canadian nursing: Professional, practice, and power issues (3rd ed., pp. 414–34). Wolters Kluwer/Lippincott Williams & Wilkins. Varcoe, C., & Rodney, P. (2009). Constrained agency: The social structure of nurses’ work. In B.S. Singh & H.D. Dickinson (Eds.), Health, illness and health care in Canada (pp. 122–51). Nelson Educational Ltd. Webster, G.C., & Baylis, F.E. (2000). Moral residue. In S.B. Rubin and L. Zoloth (Eds.), Margin of error: The ethics of mistakes in the practice of medicine (pp. 217–30). University Publishing Group. Wilkinson, J.M. (1988). Moral distress in nursing practice: Experience and effect. Nursing Forum, 23(1), 16–29. Woods, M. (2014). Beyond moral distress: Preserving the ethical integrity of nurses. Nursing Ethics, 21(2), 127–28. Yarling, R.R., & McElmurry, B.J. (1986). The moral foundation of nursing. Advances in Nursing Science, 8(2), 63–73. Zuzelo, P.R. (2007). Exploring the moral distress of registered nurses. Nursing Ethics, 14(3), 344–59.

CH A P T E R 8

END-OF-LIFE DECISION-MAKING All nurses who care for those nearing end of life will find themselves communicating with a patient requesting a wish to die and will therefore need to do the necessary moral reflection about an increasing array of end-of-life options that have arisen as a result of the wider social context of changing ideas about a good death. —Pesut, Grieg, Thorne et al., 2019, p. 230

This chapter is specifically devoted to ethical issues at the end of life. While content about end-of-life issues has been covered in previous editions, there have been significant changes in this area of health care with profound and complex ethical implications. Recent and ongoing research and policy work on an overall palliative approach to health care and the legalization of medical assistance in dying (MAID) in Canada mean that nurses, other health care providers, and, of course, patients and their families, are facing evolving ethical questions and issues about end-of-life care. A comprehensive chapter specifically devoted to recent changes and ethical questions concerning end-of-life care is warranted in order to do justice to the complexity and importance of these changes and emerging questions and issues, which engage or cut across all of the concepts and principles discussed in this book. Questions and issues related to beneficence and autonomy are especially prominent, but nurses responding to patients’ and families’ experiences of dying may also face issues concerning truthfulness, confidentiality, integrity, or justice. Given its newness and its implications for practice, the main focus of this chapter is on MAID, but the chapter begins by situating MAID in the context of a comprehensive approach to end-of-life care, including advance care planning and the 375

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palliative care approach. The analysis concerning MAID includes a discussion of public controversy and debate on assisted death and euthanasia as well as several legal cases that were flashpoints in this controversy. As do the other chapters in this book, this chapter concludes with cases and related questions for discussion, one with commentary and one without.

1. A COMPREHENSIVE APPROACH TO END-OF-LIFE CARE Death and dying have been a focus of a great deal of writing in health care and health care ethics for several decades. Dr. Elizabeth Kubler-Ross (1969) was an early physician leader who brought the topic forward for health care providers and for those working in health care ethics (Kuczewski, 2004; Storch, Starzomski & Rodney, 2013). A growing number of leaders in health care and health care ethics have continued to call for more effective end-of-life care to better support patients, their family members, and the health care providers who work with them (for example, Kuczewski, 2004; Kuhl, 2006; Kuhl, 2003; Stajduhar, 2011). 1.1. Advance Care Planning Today, the majority of Canadians die in hospitals, long-term care homes, hospices, and other health care institutions. Provincial/territorial health care guidelines encourage patients to make their wishes known before they are seriously ill or when their health changes. This includes wishes with respect to: a) whom they choose to speak for them when they are no longer capable; b) the acute care treatment options they prefer, including their wishes regarding cardio-pulmonary resuscitation; c) other supportive treatment and care options such as continuing care; and d) when they might wish to stop acute care and transition to “comfort” care through palliative approaches. Having these conversations with individuals before they become seriously ill enables the health care team to be proactive in building a cohesive plan that supports and enacts their autonomy and to support their family. It is important to note that although advance planning health care guidelines (often known as advance directives) across Canadian provinces and territories share a number of similar features, they also differ in some details. Nurses should become familiar with the guidelines in their own province/

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territory (see Advance Care Planning, 2019). It is also important to note that, despite their benefits, many people have not completed an advance planning health care guideline because they find them too complex or confusing, and/or health care providers may not see their benefit (Storch et al., 2013, pp. 340–41). 1.2. Nursing and the Palliative Approach to End-of-Life Care A number of Canadian nurse leaders have advanced and promoted an overall palliative approach to care to support patients and their families in death and dying, as do professional guidelines developed by the Canadian Nurses Association ([CNA ] 2017a) and other nursing groups (see, for example, Sawatzky et al., 2016; Stajduhar & Tayler, 2014; and CNA, Canadian Hospice Palliative Care Association [CHPCA ], Canadian Hospice Palliative Care Nurses Group [CHPC -NG ], 2015). In 2011 Dr. Kelli Stajduhar, a Canadian palliative care nurse researcher, published a landmark article in the Canadian Journal of Nursing Research (Stajduhar, 2011). Citing another palliative care nurse researcher (Seymour, 2004), Stajduhar noted that key concepts associated with the specialty of palliative care nursing included “dignity, hope, comfort, quality of life, knowing the patient, teamwork, suffering, and care and caring” (Stajduhar, 2011, p. 7). However, Stajduhar also noted that “with palliative care programs becoming increasingly part of mainstream health care, at least in the Western world, and with specialty services such as palliative consultation teams, inpatient units, and bereavement and spiritual care programs offered in many settings, it is surprising to learn that quality end-of-life care is not always accessible” (p. 8). Drawing on the work of diverse other palliative care experts, Stajduhar argued that a “palliative approach recognizes that, although not all people with life-limiting illness require specialized palliative services, they do require care that is aimed at improving quality of life” (p. 10), and that “a palliative approach differs little from respectful, compassionate, knowledgeable nursing care for patients and their families at any point in the health-illness trajectory” (p. 10). In her 2011 paper, and in subsequent research and policy work, Stajduhar and her colleagues have continued to promote a palliative approach to end-of-life care. Stajduhar has argued for what we can appreciate as a “both-and” approach. That is, while specialized palliative care services will always be needed and ought to be more widely available, there ought also to be more consistent ongoing support for patients and their families throughout their illness journeys.

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1.3. The Expanded Range of End-of-Life Options Patients need to know they may qualify for one or more end-of-life options when death is imminent. The options will differ depending on the patient’s condition and circumstances, as well as on the availability of resources. Since 2016, the range of end-of-life options has been significantly expanded with the introduction of MAID . Consider a person with terminal cancer who is expected to die within one month. This person could decide to receive palliative care and may be able to choose to die in the hospital, a hospice, or at home. However, he or she could decide that the pain and suffering is not managed well enough by an expert pain and palliative care team and elect to have continuous palliative sedation (CPST), meaning the person is sedated continuously until death occurs. The person would probably also qualify for MAID and could prefer this option because he or she wants to be mentally alert to the moment of death as opposed to being under some level of sedation given with palliative care treatment. However, if this person asks for MAID, in the ensuing discussion it is important to ensure that all available options, beginning with palliative care have been presented and explained. The discussion to follow in this chapter will focus mainly on MAID because it constitutes an especially momentous change in the health care and health care ethics landscape. Given its newness and the controversy surrounding it, nurses need to understand its implications for their practice. However, it is important to keep in mind that end-of-life decision-making concerns a spectrum of treatment options. Caregivers, substitute decision-makers and patients may have different views about available options. The voice and wishes of the patient should be respected even when the patient’s decision is not the preferred choice of family or caregivers.

2. EXPLORING THE ETHICAL DEBATE AND CONTROVERSY ABOUT ASSISTED DEATH In 2016, the federal government passed legislation (Bill C-14) to amend provisions in the Criminal Code of Canada (1985) that prohibited assistance in dying, and specifically the provisions that “no person is entitled to consent to have death inflicted on them, and such consent does not affect the criminal responsibility of any person by whom death may be inflicted on the person”

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(sec. 14) and that “everyone who ... aids or abets a person to commit suicide ... is guilty of an indictable offence and liable to imprisonment” (sec. 241.b). The legislation replaced these sections with new provisions that permitted what it called MAID, subject to certain safeguards, for persons who meet specified eligibility criteria, including that they are at least over 18 years of age, have a grievous and irremediable medical condition, have the capacity to consent, and request and give informed consent to MAID. The legislation defined MAID to allow two practices that were previously prohibited by law: (a)  the administering by a medical practitioner or nurse practitioner of a substance to a person, at their request, that causes their death; or (b)  the prescribing or providing by a medical practitioner or nurse practitioner of a substance to a person, at their request, so that they may self-administer the substance and in doing so cause their own death. (para. 7)

Similar legislation, the Act Respecting End-of-Life Care (2014), had been passed in the province of Quebec in 2014, which had legalized “care consisting in the administration by a physician of medications or substances to an end-of-life patient, at the patient’s request, in order to relieve their suffering by hastening death” (sec. II.I.3.6). This legislation does not include the self-administration of a provided substance, which the federal law does. In this section, we discuss public controversy and ethical debate surrounding the two practices decriminalized in the federal law, as well as landmark legal cases preceding this law that were significant flashpoints in public controversy and debate. 2.1. Public Controversy and Debate Preceding the Introduction of MAID The practices decriminalized in MAID have been the subject of much controversy in public debate and in the academic literature. As is often the case with ethical issues, key terms used in debate have been unclear or ambiguous. Different people used different terms to refer to the same practice, or used the same term to refer to different practices. Different terms have different connotations, inclining more toward one side or other of the debate. “Assisted death” is a less harsh way of referring to a practice of assisting someone to take their

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own life at their own hand (e.g., providing someone with a lethal substance) than the more specific term “assisted suicide,” which evokes negative connotations, as does the term “euthanasia.” For example, “suicide” is associated with a diagnosis of mental illness, and there is concern that persons seeking this end-of-life option will be viewed through this lens and as needing to be protected from themselves. Moreover, the term “assisted death” was also used, for example in legal cases leading up to MAID , to include not just “assisted suicide” in the meaning described above, but also administering a substance to a person, at their request, with the intent to end their life thereby—a practice otherwise referred to as “voluntary euthanasia” in contradistinction to assisted suicide. Sometimes the term “assisted suicide” was used more broadly to include both of these practices. Academics tended to use these terms with some degree of clarity and precision, or at least to define the terms as they intended them. However, their use in the media and public debate was much less careful and often unclear as to what specific end-of-life practices were being referred to, a problem that made it difficult to gage public opinion about the related practices (Marcoux et al., 2007). This is not a problem with MAID because the two practices the legislation permits are clearly defined. As we trace some key moments leading up to MAID, difference in use of key terms and lack of clarity as to precisely what practices a given term refers to can be confusing. Nonetheless, it is clear that MAID includes two distinct practices, however one labels them: a) administering a substance, at someone’s request, that causes their death; and b) providing someone with a substance, at their request, so that they can take their own life at their own hand. MAID can refer to either of these practices and does not give them separate names. In debates leading up to MAID, these two practices were sometimes combined as they are in MAID under a single name—assisted dying, or physician-assisted dying to refer to both or either—and sometimes distinguished by different names (“voluntary euthanasia” for the former; “assisted suicide” for the latter). Because this can be confusing, it is important for readers to keep in mind that as we discuss cases and debates leading up to MAID we will use the terms as they were then discussed or debated. For example, Kay Carter, who we will meet later on, expressed a wish to be able to receive “physician-assisted suicide,” so we will discuss the controversy surrounding her case in those terms. Since MAID, this would be expressed as the wish to receive “medical assistance in dying,” which can be provided by either a physician or a nurse practitioner, who can assist either by administering a lethal substance or by providing a lethal substance for the person to self-administer

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(“assisted suicide”). We do not know which of these forms of MAID Kay Carter would choose if she were choosing today; she chose at a time when neither was legal in Canada and only the latter (i.e., “assisted suicide”) was legally available in Switzerland, where she travelled to be able to have her wish. Opponents of assisted death argued (and still argue) that, ethically speaking, there is a bright line that distinguishes assisted death (either or both of the practices included under MAID) from other practices such as withholding or withdrawing life-sustaining treatment. As noted above, there has been persistent ambiguity, lack of precision, and even confusion, in the language in which endof-life practices were described, which sometimes led to uncertainty or confusion about whether a given practice was legal. Often, the issues were framed in terms of “euthanasia,” which literally means a “good death” and suggests the intent to end someone’s life in a good death. However, euthanasia is a broad umbrella term that can mean different things to different people. Since we are discussing the ethical debates leading up to MAID, we will try to clarify and distinguish different meanings or uses of the term and also relate these meanings or uses to MAID, which by contrast very precisely refers to clearly defined practices. Often in popular parlance and media stories the two practices legalized by MAID were subsumed under the term “euthanasia.” However, notwithstanding Canada’s current definitions regarding MAID, academics (e.g., Stingl, 2010, p. 2) typically reserved the term euthanasia for the first practice—administering a substance to cause death—and used the term “assisted suicide” to designate the second (providing the means or knowledge for the person to end his or her own life). Within the broad concept of euthanasia, commentators have distinguished several different types of euthanasia. In the first place, instances of euthanasia are distinguished according to who performs the relevant act. The debates leading up to MAID were focused on euthanasia performed by physicians, or by patients assisted by physicians. The issue was not whether anyone (e.g., family members) should be able to perform euthanasia at the request of the patient (or assist in suicide or in dying in whatever way) but rather whether physicians should be able to do so. And it is important to note that MAID is construed as a medical act, strictly limited to physicians and nurse practitioners. The legislation did not make it legal for just anyone to perform MAID. In the second place, commentators distinguished voluntary, non-voluntary, and involuntary euthanasia, depending on whether a patient either: a) consents to it (voluntary euthanasia), or b) is unable to consent (non-voluntary), or c) is able to consent but is not asked or is asked and refuses (involuntary). The

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distinction between these different modalities of voluntariness is reasonably clear: Voluntary euthanasia, which is permitted in MAID, is grounded in autonomy, and is sharply distinct from non-voluntary or involuntary euthanasia. Thirdly, commentators have distinguished active and passive euthanasia. In these terms, MAID, or at least the form of MAID involving the administration of a substance to a person, would be an instance of active, voluntary euthanasia. Passive euthanasia referred to withholding or withdrawing treatment, which by contrast was thought to be less active or direct. Ethicist Arthur Schafer (2009) comments that when he started teaching ethics in the 1970s passive euthanasia—withholding or withdrawing life support—was one of the “hot button issues” and that “doctors used to worry about both the ethics and the legality of hastening a patient’s death by ‘pulling the plug.’ ” Since the 1992 case of Nancy B, which we will discuss later, these are accepted practices in end-of-life treatment and care, and seldom are they even referred to as instances of passive euthanasia. Nonetheless, there is still some confusion in the way different end-of-life practices are labelled. Even among health care providers there is sometimes uncertainty with respect to the legality of some end-of-life practices. In a study of Quebec health professionals, Marcoux et al. (2015) found that almost half mistakenly believed “that withdrawing a potentially life-prolonging treatment upon the patient’s request was not permitted” (2015, p. e199). In a more recent study, Boivin et al. (2019) found that members of the public have difficulty distinguishing MAID from other end-of-life practices, such as withdrawal from treatment and the use of drugs for symptom management.

2.1.1. The Active/Passive Distinction and the Importance of Intention The distinction between active and passive euthanasia has been especially contentious. Granted, a clear example of active euthanasia can be given: administering a lethal dose of a drug with the intent to hasten death or kill as mercifully as possible. However, passive euthanasia is less sharply defined. A reasonably sharp example of passive euthanasia—where to be passive means to withhold or not offer treatment—would be not starting someone on a ventilator or not beginning some other treatment that was life sustaining. Other examples are less clear. What about withdrawing treatment? For example, is turning off or removing a ventilator passive or active? Given that “turning off ” or “removing” are pretty active verbs, why should this be classified, as it has been, as “passive”

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euthanasia? If rather than administering a lethal drug to someone, one provides it to them to self-administer, is that active or passive, or should this even be called “euthanasia”? The blurred boundary between active and passive euthanasia creates ambiguity, uncertainty, and the potential for confusion. A second reason that the distinction between active and passive euthanasia is contentious is that it has been ethically loaded or charged. For many people, it has been used to draw a purportedly bright line dividing what they take to be ethically acceptable (i.e., withholding or withdrawing treatment, considered as “passive”) and what is ethically unacceptable (i.e., administering a substance that causes death, which is clearly “active”). Assuming that we can rigorously distinguish practices as being either active or passive, or more or less one or the other, what ethical difference does it make? What makes the latter any less culpable than the former? Many proponents of physician-assisted death, including an influential expert panel commissioned by the Royal Society (Schüklenk et al., 2011, pp. 35–37) rejected this active/passive distinction and other similar ways of dividing practices, and argued that all of these practices are ethically acceptable under certain conditions and safeguards. In Carter v. Canada (2012), the pivotal trial that led to the Supreme Court of Canada decision (Carter v. Canada, 2015) that voided the prohibitions in the Criminal Code of Canada against assisted death and charted the path for MAID in Bill C-14, Justice Smith had surveyed the ethical arguments concerning assisted death in submissions from physicians and ethicists on both sides of the issue. Carter v. Canada cites extensively from Justice Smith’s findings in this matter: She found that current unregulated end-of-life practices in Canada— such as the administration of palliative sedation and the withholding or withdrawal of lifesaving or life-sustaining medical treatment—can have the effect of hastening death and that there is a strong societal consensus that these practices are ethically acceptable.... After considering the evidence of physicians and ethicists, she found that the “preponderance of the evidence from ethicists is that there is no ethical distinction between physician-assisted death and other end-of-life practices whose outcome is highly likely to be death.” (para. 23)

It is telling that Justice Smith based her comparison of withholding or withdrawing life-sustaining treatment and physician-assisted death, and based her

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acceptance of the claim that there is “no ethical distinction” between them, on the shared feature that they alike have “the effect of hastening death.” However, physician-assisted death not only has the quite definite effect of hastening or causing death: Bringing about that outcome is plainly its intention or reason. Opponents of assisted death have argued that this is not the intention or reason for withholding or withdrawing treatment. If it were, these practices too would also be ethically unacceptable to the extent that it is intention that matters. The crux of the issue is whether doing (or not doing) something in the knowledge of a consequence that will follow, but not intending to bring about this foreseen consequence, is ethically distinct from doing the same thing with the intent to bring about the consequence. Along these lines, the ethically bright line to be drawn is not between active and passive euthanasia as such. That distinction is more confusing than helpful, particularly to the extent it serves as a proxy for the distinction that really does matter. For opponents, the ethical issue turned on intention: If the intention was to cause death, the act or omission was ethically unacceptable. From this perspective, practices such as withholding or withdrawing treatment, and including palliative sedation, were ethically acceptable in certain circumstances if the patient or substitute decision-maker consents—even if done in the knowledge that death would thereby be hastened or life ended—provided that this was not the provider’s intention. In this event, the intent would be to respect the patient’s autonomy in refusing treatment, or to relieve suffering and the patient’s underlying disease, and that, not the provider’s action or omission, would be the cause of death. This situation has often been described in phrases such as “letting nature take its course.” The ethically bright line, if there is one, is between intentionally hastening or causing death (such as administering a lethal injection), on the one hand, and doing or not doing something in the knowledge that it will hasten or cause death, but where that is not itself the intention but rather the foreseen side-effect of some other intention (e.g., to respect the patient’s right to refuse treatment, or to avoid subjecting the patient to treatment believed to be futile). There are several ways to argue against this view. One could deny that there is a real difference between the two: that knowingly hastening death is the same as intentionally hastening death, that both are equally intentional. For example, one could argue that those who suppose there is a difference are confused about what it means to intend something, or are deceiving themselves in believing that they are not intending the consequence of hastening death

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when they withdraw or withhold treatment. Another way of arguing would be to accept in principle that the distinction is real, but to object on practical grounds that it is impossible to discern someone else’s real intentions, and that those who claim that the foreseen consequence of treatment withholding or withdrawal is not intended may not be speaking truthfully about their motive. Or one could argue that regardless of a distinction between the two, they are nonetheless ethically equivalent, in consequentialist terms, or that even if they are not exactly morally equivalent, intentionally causing or hastening death is nonetheless also ethically acceptable. What changed with MAID is that it became legal for physicians and nurse practitioners under certain conditions and subject to safeguards to administer a substance to persons, or provide persons a substance for them to self-administer, with the unmistakable intent of causing death. If one accepts the argument that assisted death is more or less morally equivalent to older, accepted practices such as withholding and withdrawing life-sustaining treatment, the change in the law is less monumental and dramatic than if one believes that with the decriminalization of assisted death we have crossed a bright ethical line. There have been of course several other issues concerning the legalization of voluntary assisted death. Would legalization desensitize health care providers to the importance of life? Can informed consent be applied in this context and serve as an adequate safeguard? Could vulnerable persons be adequately protected? Would legalization contribute to the stigmatization or devaluing of disabled people? Would it be the first step on a slippery slope leading from voluntary to non-voluntary or even involuntary assisted death? Would it result in less emphasis on, and fewer resources for, palliative care? Can persons who perceive themselves as a burden to others or to society, or perhaps feel that they are seen that way by others, avoid feeling a pressure to end their life sooner rather than later? Most of these questions were addressed in Carter v. Canada (2012; 2015), although not necessarily to the satisfaction of those who raised them, and will be discussed later in this section. We turn now to a brief outline of some influential legal cases leading up to the SCC ruling that were surrounded by public debate. 2.2. Controversial Legal Cases Beginning in the 1990s, several prominent legal cases made headlines and became flashpoints for public controversy concerning euthanasia and assisted

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death. These cases have been influential in the arguments in Canada preceding the authorization of MAID, and so we discuss them briefly in what follows.

2.2.1. Nancy B: The Right to Refuse Treatment Nancy B. was a 25-year-old woman with progressive motor paralysis caused by Guillain-Barré syndrome and extensive muscular atrophy. In 1991, after having been confined to her bed and ventilator-dependent for two years, she asked to be removed from the ventilator. Her request created uncertainty about whether such removal would be a crime under the Criminal Code of Canada. The hospital in which she was a patient sought guidance from the courts about how to proceed. The Superior Court of Quebec (Nancy B. v. Hôtel-Dieu de Québec, 1992) ruled that death in consequence of removing her from life-support “would constitute neither homicide nor suicide, but rather natural death” (Dickens, 1993, p. 1058). Since Nancy B. was competent, it was her right to refuse treatment and appropriate for her physicians to respect her wishes. Dickens notes that the analysis would have been different had she not consented, and that “a person who disconnects a respirator without consent is convictable for causing death” (p. 1063). The Nancy B. ruling settled uncertainty that had existed at the time about the legality of withholding or withdrawing life-sustaining treatment at the request of a competent patient. It clarified that Canadians have a legal right to refuse life-sustaining treatment, including feeding tubes, surgical interventions, blood transfusions, and cardio-pulmonary resuscitation, and that physicians acting in compliance with the patient’s consent would not be legally liable. If patient autonomy means anything at all, it means the right to accept or refuse treatment or care. This right is recognized and enshrined in law and in the codes of ethics of the health care professions. Provided that the patient is capable, and the decision is informed and voluntary, the patient’s decision to withdraw treatment must be respected. The Nancy B. ruling is remarkable also in that it nudged the state of law forward in the direction of assisted death. “The significance of the Nancy B. decision,” Dickens (1993) argued, “is that it narrows the gap between letting a patient suffer natural death and assisting suicide,” a point that he underscored by including the term “medically assisted death” in the title of his article on Nancy B. (p. 1061). Arguments submitted to, and endorsed by, the trial judge in Carter v. Canada (2012) that there is no ethical distinction between

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physician-assisted suicide and withholding or withdrawing life-sustaining treatment narrowed this gap to the point of equating them.

2.2.2. Sue Rodriguez: Requests for Assisted Suicide Sue Rodriguez had amyotrophic lateral sclerosis (known as ALS or Lou Gehrig’s disease). Her condition was rapidly deteriorating, and she knew that soon she would not be able to speak, move, or eat without assistance, would need to be connected to a respirator to breathe, and would be physically unable to end her own life without assistance. She wanted a qualified physician to engineer a technological means for her to be able to end her own life unassisted when a time came that she could no longer enjoy her life and wished to end it. In December 1992 she applied to the Supreme Court of British Columbia for an order that the section of the Criminal Code of Canada prohibiting assisted suicide (sec. 241b) be declared invalid on the grounds that the prohibition infringed her rights under the Charter of Rights and Freedoms (1982, hereafter, the Charter). The relevant rights include: “life, liberty, and security of the person and not to be deprived thereof except in accordance with the principles of fundamental justice” (sec. 7); “not to be subjected to any cruel and unusual treatment or punishment” (sec. 12); and “the equal protection and equal benefit of the law without discrimination” (sec. 15). The court dismissed her application and she appealed to the Supreme Court of Canada. In 1993 the Supreme Court of Canada (Rodriguez v. British Columbia, 1993), in a five-to-four decision, dismissed her appeal and affirmed that the Criminal Code of Canada’s prohibition was constitutional. The majority accepted that the prohibition impinged Rodriguez’s interests in liberty and the security of the person, interpreting security of the person to encompass “personal autonomy, at least with respect to the right to make choices concerning one’s own body, control over one’s physical and psychological integrity which is free from state interference, and basic human dignity.” However, the majority added that these values could not be divorced from the right to life, which Rodriguez had not claimed was infringed, and which the majority parsed as “sanctity of life.” The majority then turned to the question of whether the prohibition’s impingement of Rodriguez’s liberty and security of the person’s interests was in accordance with the principles of fundamental justice. This part of an analysis takes into account the balance between the potentially conflicting interests of the state and of individuals. The state interest behind the prohibition was in

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“protecting the vulnerable” and in the state policy “that human life should not be depreciated by allowing life to be taken,” which is “part of our fundamental conception of the sanctity of life.” The extent to which there was societal consensus about assisted suicide was also relevant to this analysis. The majority noted that there was no consensus in favour of assisted suicide at the time. The majority concluded that because “the prohibition relates to the state’s interest in protecting the vulnerable and is reflective of fundamental values at play in our society,” in balance the prohibition’s infringement of Rodriguez’s liberty and security of persons was in accordance with the principles of fundamental justice. With respect to the right to equality, Rodriguez had argued that the prohibition unfairly impacts and burdens disabled persons like her. Canada decriminalized suicide in 1972. However, people with disabilities who would need assistance to take their own life would be disadvantaged relative to other Canadians able to take their own life unassisted for whom the prohibition against assisted suicide would not be an obstacle. The majority elected to assume without argument that Rodriguez’s equality right was also infringed by the prohibition, but argued that this was justifiable in a free and democratic society in view of the state’s compelling purpose for the prohibition. In February 1994, outside the bounds of the law she had unsuccessfully challenged, Rodriguez ended her life with a massive overdose of morphine taken with Seconal capsules, assisted by an anonymous physician. Autonomy was central in the Nancy B. and Sue Rodriguez cases, but in different ways. In both cases the patient was expressing a wish to die and seeking co-operation from health professionals in realizing that wish, but the similarities end there. Nancy B.’s situation was construed in terms of the right of a competent person to refuse treatment and not as the right to be assisted to die. Along the lines of the majority’s reasoning in Rodriguez v. British Columbia (1993), the Sue Rodriguez case was significantly different. In discussing societal values relevant to determining the principles of fundamental justice, the majority specifically commented that “distinctions between passive and active forms of intervention in the dying process continue to be drawn,” the assumption being that the intervention Rodriguez was seeking was “active” and significantly distinct from “passive” interventions, such as complying with a patient’s express treatment refusal by withholding or withdrawing treatment.

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2.2.3. Tracy Latimer: Involuntary Euthanasia Tracy Latimer was a twelve-year-old girl with a severe form of cerebral palsy caused by brain damage at birth. According to court documents (R. v. Latimer, 2001, para. 6–15), she was quadriplegic, mostly bedridden, and had to be fed by spoon. She was unable to speak and her mental capacity was likened to that of an infant. She suffered intractable pain and had epileptic seizures five or six times a day. Even so, she enjoyed various activities, such as listening to music and being with her family. Tracy had had numerous surgeries. Following a surgery to implant metal rods to support her spine, her hip became dislocated. She was scheduled to have further surgery on November 19, 1993 to lessen her constant pain, and it was expected that yet other surgeries would be required in the future to address other causes of pain. Her father, Robert Latimer, was not hopeful of his daughter’s prospects and perceived further surgery as mutilation. He was reported to have said that Tracy’s life was not worth living. On October 12, 1993, he took her life by poisoning her with carbon monoxide in his pickup truck. In 1995 Robert Latimer was convicted of second-degree murder and sentenced to life imprisonment with a minimum period of ten years served before he could be eligible for parole. There followed complex legal appeals that twice went to the Supreme Court of Canada, and in the course of which there was a second trial. At the second trial, Latimer was again found guilty, but the trial judge, in what has been called a “stunning decision,” ruled that the mandatory life sentence constituted “cruel and unusual punishment” and issued a sentence of one-year imprisonment and one-year probation confined to his farm (Sneiderman, 1999, p. 1022). The judge, who, like the jury and many Canadians, was sympathetic to Latimer, considered the case an example of “euthanasia-type mercy killing” or “compassionate homicide,” emphasizing what he took to be Latimer’s benign motives (R. v. Latimer, 1997, para. 33). Advocacy groups for disabled persons were shocked and disturbed by this ruling. Janz (2009), who has studied how the Latimer case was portrayed in the media from a disabilities studies perspective, notes that 95 per cent of over 2000 media reports on the Latimer case “used terms like ‘mercy-killing’ or ‘euthanasia’ to describe the killing of Tracy Latimer,” which language concerns her because she takes it to imply that Tracy’s “killing may have been justified.” Latimer, who has expressed no remorse for his action, received full parole in 2010 but his life sentence means he will remain under supervision in the

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community for the rest of his life. It is important to note that non-voluntary euthanasia remains illegal under MAID. 2.3. A Slippery Slope? The cases of Nancy B. and Sue Rodriguez were similar in that both foregrounded the autonomy rights of competent persons. However narrow one thinks the gap is between withdrawing treatment with consent and assisting someone to die by furnishing them the means to do so, neither case could be construed as non-voluntary, much less involuntary euthanasia. The Latimer case was different from both in this respect. Tracy was not competent. Her father’s act was motivated not by respect for her autonomy but, assuming the best of intentions, compassion or beneficence. The Latimer case was also different from Rodriguez in that Latimer did not furnish someone with the means to die by their own hand, which is what Sue Rodriguez had sought: Latimer killed Tracy. Leading up to the SCC case of Carter v. Canada (2015) and the legalization of MAID, public debate was centred, albeit often confusedly, on voluntary euthanasia (i.e., intentionally ending someone’s life by administering a substance) and assisted suicide (i.e., providing them the means to end their life by their own hand). Arguments opposing legalization were along two main lines. One line of argument opposed legalization on deontological grounds, based on the value of life itself, the sanctity of life. The other line of argument was a consequentialist one: Even if the practices at issue were ethically acceptable in some cases, legalization would have consequences that were ethically unacceptable. For example, it would send a message that the lives of disabled persons were less valuable or not worth living. Or it would have the effect of less emphasis, and fewer resources, being given to palliative care, or to ensuring that conditions of life for vulnerable or disabled persons—housing, support, etc.—were such that suicide or death would not be a vulnerable person’s only or best option. One significant concern along consequentialist lines was that legalizing these practices would begin a downward slide—or continue a downward slide believed to have already begun with allowing assisted suicide and leading to voluntary euthanasia—from voluntary to non-voluntary or even involuntary euthanasia. Philosopher Michael Stingl (2010), who ties the Latimer and Sue Rodriguez cases together, argues that “what the Latimer case shows is how quickly the second question can extend to the question of allowing non-voluntary euthanasia” (p. 9).

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To be sure, there is a clear difference between voluntary and non-voluntary euthanasia, although the borderline between capacity and lack of capacity may be blurry with respect to some persons, such as mature minors and persons with mental illness. This distinction certainly matters to the extent the issue turns on autonomy. However, autonomy is not all that matters, as reflected in the fact that although the eligibility criteria for MAID include consent as an essential requirement, by itself autonomy is not sufficient. Eligibility for MAID also requires that the person “has a grievous and irremediable medical condition ... that causes enduring suffering that is intolerable to the individual.” In sum, concern about suffering also matters, a concern rooted not in autonomy but in compassion or beneficence. Bryson Brown (2010) argues that a “blanket prohibition on non-voluntary euthanasia means ‘that some people, including some children, will be forced to suffer horribly, far more horribly than anyone who accepts voluntary euthanasia would ever force those with the ability to cry “hold, enough” to suffer’” (p. 179). To the extent compassion or beneficence matters, how can we justify allowing MAID for people who have capacity to consent and are suffering but not allow it for people whose suffering may be as great or greater but lack capacity and therefore are not eligible for MAID?

3. CARTER V. CANADA, 2015 The flashpoint cases we have discussed to this point track the controversy about euthanasia and assisted death that preceded the legalization of MAID, but the case that directly led to it by voiding the Criminal Code of Canada prohibitions featured Gloria Taylor and Kay Carter. In 2009, Gloria Taylor, like Sue Rodriguez, was diagnosed with amyotrophic lateral sclerosis (ALS). By 2010, her situation had deteriorated to the point that she decided she wanted the option of physician-assisted death. In her own words: I want the legal right to die peacefully, at the time of my own choosing, in the embrace of my family and friends. I know that I am dying, but I am far from depressed.... I will not waste any of my remaining time being depressed. I intend to get every bit of happiness I can wring from what is left of my life so long as it remains a life of quality; but I do not want to live a life without quality. There will come a point when I will know that

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enough is enough. I cannot say precisely when that time will be. It is not a question of “when I can’t walk” or “when I can’t talk.” There is no preset trigger moment. I just know that, globally, there will be some point in time when I will be able to say—“this is it, this is the point where life is just not worthwhile.” When that time comes, I want to be able to call my family together, tell them of my decision, say a dignified good-bye and obtain final closure—for me and for them. My present quality of life is impaired by the fact that I am unable to say for certain that I will have the right to ask for physician-assisted dying when that “enough is enough” moment arrives. I live in apprehension that my death will be slow, difficult, unpleasant, painful, undignified and inconsistent with the values and principles I have tried to live by.... (as cited in Carter v. Canada, 2015, para. 12)

Part of the issue for Taylor, as it was for Sue Rodriguez, was that by the time she was ready to die, she would no longer be able to die without assistance. As the court wrote (Carter v. Canada, 2015): “This left her with what she described as the ‘cruel choice’ between killing herself while she was still physically capable of doing so, or giving up the ability to exercise any control over the manner and timing of her death” (para. 13). With the help of the British Columbia Civil Liberties Association, in April 2011 Taylor brought a claim before the British Columbia Supreme Court challenging the constitutionality of the prohibitions against assistance in dying in the Criminal Code of Canada. She was joined in this by Lee Carter and her husband on behalf of Lee’s recently deceased mother, Kay Carter, age eighty, who had spinal stenosis progressively leading to loss of independence. In July 2009, she had informed Lee that she wished to end her life as soon as possible by physician-assisted suicide. In her own words: This deterioration has progressed up to my neck and chin and downward to my feet. I cannot eat by myself, cannot move by myself and am incontinent. Each day it gets worse. Because of this I request the right to die with dignity. (1st Affidavit of Lee Carter, 2011, p. 13)

Following her mother’s instructions, Lee Carter and her husband arranged for her mother to travel to Switzerland, where assisted suicide was not a

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criminal act if it occurred according to a specified medical protocol. It took several anxious months to make the necessary arrangements with the aid of the Swiss organization Dignitas, at an expense of $32,000 for travel and related expenses, and at the risk to Lee and her husband of being prosecuted upon return to Canada. On January 15, 2010, Ms. Carter swallowed a dose of sodium pentobarbital supplied by Dignitas’ staff and became the 10th Canadian to die by assisted suicide at the Dignitas clinic. The legal challenge to the law prohibiting assisted death brought by Lee Carter and others succeeded at trial in the British Columbia Supreme Court in 2012 (Carter v. Canada, 2012) but its ruling was subsequently overturned on appeal by the British Columbia Court of Appeal (Carter v. Canada, 2013) on the grounds that the trial judge was bound by the earlier ruling of the Supreme Court of Canada in Rodriguez v. British Columbia (1993) on substantially similar legal issues. Eventually, the legal challenge came before the Supreme Court of Canada (Carter v. Canada, 2015), which essentially affirmed the trial judge’s reasoning and conclusion and framed the issue before it as follows: This is a question that asks us to balance competing values of great importance. On the one hand stands the autonomy and dignity of a competent adult who seeks death as a response to a grievous and irremediable medical condition. On the other stands the sanctity of life and the need to protect the vulnerable. (para. 2)

In essence, the court found that there was in fact a way of balancing these competing values that could satisfy both. As concerns the one side of the equation, the court found that the prohibitions against assisted dying did indeed infringe the section 7 Charter (1982) right to life, liberty, and security of the person of competent adults, like Gloria Taylor and Kay Carter, seeking death as a response to a grievous and irremediable condition. The prohibitions impeded their right, and likewise the right of people in situations like theirs, to make fundamental choices and preserve their dignity, and moreover did so in a way that was not in accordance with principles of fundamental justice. The prohibitions thus infringed on the right to liberty and security of the person. And the prohibition infringed in particular on the right to life of G. Taylor, and persons similarly situated, who in consequence of the prohibition faced the “cruel choice” of ending her life by her own hand earlier than she otherwise would if, at the point that she wished to end her life but was no longer able to do

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so unassisted due to progressive immobilization, she could be assisted in this by a physician. The “prohibition on physician-assisted dying had the effect of forcing some individuals to take their own lives prematurely, for fear that they would be incapable of doing so when they reached the point where suffering was intolerable” (Carter v. Canada, 2015, para. 157). The next step for the court was to consider whether the infringement of these Charter rights could be justified in view of section 1 of the Charter, which allows for rights to be limited when such limitation “can be demonstrably justified in a free and democratic society.” It is here that the “value of sanctity of life and the need to protect the vulnerable”—an important societal interest that underpins the prohibitions against assisted dying—has to be weighed in the balance. If the prohibitions were necessary for this societal objective to be achieved—if the removal of the prohibition would undermine this value (which the court affirmed “is one of our most fundamental values”) or expose vulnerable people to harm or risk, such as by being coerced into assisted dying, this could be grounds for affirming the prohibitions, notwithstanding that the rights of people like G. Taylor and K. Carter would indeed be infringed. However, the court found that allowance for assistance in dying in such cases could be made subject to certain conditions to safeguard the sanctity of life and protect vulnerable persons. As concerns why the court came to this decisively important conclusion—quite opposite to the one that the SCC majority had found in Rodriguez v. British Columbia (1993)—the explanation was that in the intervening 20 years that had passed there had been significant changes material to the conclusion. The court noted that “the majority in Rodriguez relied on evidence of (1) the widespread acceptance of a moral or ethical distinction between passive and active euthanasia; (2) the lack of any ‘halfway measure’ that could protect the vulnerable; and (3) the ‘substantial consensus’ in Western countries that a blanket prohibition is necessary to protect against the slippery slope” (para. 47). However, evidence had been presented before the 2012 trial judge “that if accepted, was capable of undermining each of these conclusions” (para. 47). Significantly, whereas at the time of the initial trial no other Western democracy expressly permitted assistance in dying, by 2010 eight jurisdictions permitted it in some form (para. 8). Studies from these countries had “produced a body of evidence about the practical and legal workings of physician-assisted death and the efficacy of safeguards for the vulnerable” (para. 8). This fresh evidence convinced the trial judge, and the SCC agreed, that a system could be carefully designed to permit assistance in dying under certain conditions

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that did not limit or infringe rights and at the same time ensured the important societal objective of safeguarding against abuse and protecting the vulnerable. Evidence indicated that a slippery slope could be avoided. Existing standards of informed consent could be applied effectively. Physicians were capable of assessing competence with respect to requests for assisted death and ensuring that candidates were not being coerced. In its unanimous ruling, the court declared that the Criminal Code of Canada prohibitions against assisted dying were “void insofar as they prohibit physician-assisted death for a competent adult person who (1) clearly consents to the termination of life; and (2) has a grievous and irremediable medical condition ... that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition” (para. 127). It is important to emphasize that the court limited its declaration to these two carefully crafted eligibility criteria. It noted that the scope of its declaration was “intended to respond to the factual circumstances of the case before it” (i.e., G. Taylor and K. Carter, and others similarly situated), and that it was making “no pronouncement on other situations where physician-assisted dying may be sought” (para. 127). 3.1. Bill C-14 and Ensuing Developments The SCC ruling in Carter v. Canada (2015) put the ball in the court of the federal government to craft legislation amending the Criminal Code of Canada to allow for assisted dying. In the year following the ruling, the federal government consulted and deliberated about how best to do this. Bill C-14, which created a legal framework along the lines proposed by the court that balanced the twin values of permitting assistance in certain cases and protecting the vulnerable through adequate safeguards, was assented to in June 2016. The legislation permitted assisted dying in Canada—or what henceforth would be called “Medical Assistance in Dying” (MAID)—permitting not only physicians but also nurse practitioners to perform the newly legalized practices if done in accordance with a protocol and safeguards laid out in the legislation. Along the lines of the SCC declaration, the legislation restricted eligibility for MAID to competent adult persons who clearly consent to the termination of life and who have a grievous and irremediable medical condition: A person may receive medical assistance in dying only if they meet all of the following criteria:

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(a) they are eligible—or, but for any applicable minimum period of residence or waiting period, would be eligible—for health services funded by a government in Canada; (b) they are at least 18 years of age and capable of making decisions with respect to their health; (c) they have a grievous and irremediable medical condition; (d) they have made a voluntary request for medical assistance in dying that, in particular, was not made as a result of external pressure; and (e) they give informed consent to receive medical assistance in dying after having been informed of the means that are available to relieve their suffering, including palliative care. (para. 241.2.1)

The legislation elaborated on the meaning of “grievous and irremediable medical conditions” as follows: A person has a grievous and irremediable medical condition if (a)  they have a serious and incurable illness, disease or disability; (b)  they are in an advanced state of irreversible decline in capability; (c)  that illness, disease or disability or that state of decline causes them enduring physical or psychological suffering that is intolerable to them and that cannot be relieved under conditions that they consider acceptable; and (d)  their natural death has become reasonably foreseeable, taking into account all of their medical circumstances, without a prognosis necessarily having been made as to the specific length of time that they have remaining. (para. 241.2.2)

Some of these eligibility criteria are open to interpretation and have been the subject of vigorous debate. For example, the condition that “natural death has become reasonably foreseeable ... without a prognosis necessarily having

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been made as to the specific length of time that they have remaining,” which was not in the SCC declaration, is unclear. Indeed, it is not at all clear that the unassisted death of Kay Carter, in relation to whom the SCC had crafted its declaration, would count as being “reasonably foreseeable” and that she would therefore have been eligible for MAID. At the time she expressed her wish to die, her condition was not terminal and stenosis does not shorten life expectancy; as an 89-year-old woman her life expectancy would have been about six years (Downie & Scallion, 2018, p. 49). The “reasonably foreseeable” eligibility criterion has since been the subject of legal contestation in the courts. In September 2019 the Quebec Superior Court ruled in favour of two individuals with incurable degenerative diseases ( Jean Truchon and Nicole Gladu) who claimed that the eligibility criteria that death be “reasonably foreseeable,” on the basis of which their requests for assisted death were denied, violated their constitutional rights. Justice C. Baudouin struck down this clause in the federal law, as well as the similar clause in Quebec’s own assisted death law. The Quebec government has decided not to appeal the ruling (Ha & Grant, 2019). In the same month, in a case concerning an individual with degenerative neuromuscular disorder ( Julia Lamb), the British Columbia Supreme Court gave support to an expansive interpretation of the “reasonably foreseeable” criterion, according to which individuals would meet this criterion “if they have demonstrated a clear intent to take steps to make their natural death happen soon or to cause their death to be predictable” (Downie, 2019). Other restrictive provisions in the federal law are also under review. The SCC had reassuringly emphasized that controversial cases from Belgium presented as evidence at trial, such as “euthanasia for minors or persons with psychiatric disorders or minor medical conditions,” did not “fall within the parameters” of the legal reasons it gave in support of its limited declaration (para. 66). However, this did not foreclose the possibility that more permissive eligibility criteria than the two enumerated in the court’s declaration could be legally justified or reconciled with the Charter. In view of debate about eligibility criteria during the legislative process, Bill C-14 committed the government to undertake “independent reviews of issues relating to requests by mature minors for medical assistance in dying, to advance requests and to requests where mental illness is the sole underlying medical condition” (2016, para. 9.1.1.). Pursuant to this, in December 2016 the government asked the Council of Canadian Academies (CCA ) to conduct these reviews. The CCA formed an expert panel to review evidence concerning each of the three

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potential eligibility criteria identified for further study. In December 2018 the CCA issued three reports: The State of Knowledge on Medical Assistance in Dying for Mature Minors; The State of Knowledge on Advance Requests for Medical Assistance in Dying; and The State of Knowledge on Medical Assistance in Dying Where a Mental Disorder Is the Sole Underlying Medical Condition (CCA, 2018a; CCA, 2018b; CCA, 2018c). At the time of writing, it seems likely that the federal MAID legislation will be amended to expressly permit MAID for one or more of these types of requests in the future. At the provincial level, the government of Quebec is reviewing its law in light of the 2019 ruling of the Superior Court of Quebec, which suspended its ruling for six months to allow the government time to decide how to respond. In its review, the Quebec government is considering recommendations proposed by the Task Force on Medical Assistance in Dying in November 2019, which “opened the door to the idea of prior consent in the case of a diagnosis of a serious and incurable disease by a physician, and where the person wants to choose the assisted death option while they are still mentally able to decide” (Authier, 2019).

4. MAID NURSING PRACTICE IMPLICATIONS Although Bill C-14 provided a legislative framework for MAID, it left open many practical or clinical implementation issues. Hospitals and community agencies moved quickly to prepare step-by-step pathways and protocols to guide health care professionals involved in the application, assessment, and preparation for MAID and in delivery and documentation. Regulatory bodies issued guidance and direction for the involvement of their licensees. This has been a complex learning process, and implementation practices will continue to evolve in light of experience. As of October 2018, 6,749 people had received MAID since the enactment of the federal law, with cancer being the most common indication (Health Canada, 2019). The law permits nurse practitioners as well as physicians to assess for and provide MAID and to provide independent second opinion about eligibility. The CNA (2017b), as well as various nursing regulatory bodies across the country, have issued helpful guidance for nurses concerning MAID. These documents note that, although nurses (other than nurse practitioners) cannot provide or assess for MAID, they may contribute to assessment, and may be involved in a variety of ways.

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In the first place, nurses may directly aid nurse practitioners or physicians in the provision of MAID , for example in making arrangements for MAID and in preparing for medication to be administered, which can include collecting medication from the pharmacy, and starting an intravenous line and maintaining its patency. Nurses may also, at the explicit request of a patient, assist in self-administering a medication that has been provided in accordance with protocol by a nurse practitioner or physician. Family members may need emotional support during and subsequent to MAID. Secondly, nurses care for patients who have chosen or are considering MAID. Discussing and educating the patient about their condition is a daily nursing activity. During the waiting period for patients who have chosen MAID, nurses may discuss with them how they are preparing spiritually, mentally, and physically for their death and provide emotional support. In some cases, nurses may need to alert the physician or nurse practitioner attending that a patient is having doubts about proceeding with MAID or has decided not to proceed. Nurses have a role in patient education and in the ongoing informed consent process. However, in conversations with patients about MAID, whether the patient has already initiated the request or is considering doing so, nurses need to be careful not to encourage or counsel the patient for or against MAID . Counselling someone to commit suicide remains a criminal offense. It is appropriate to provide information about MAID to someone who requests it and to explore their reasons, but in the context of such conversations nurses should take care to inform the person of other end-of-life options as well. Although at the time of writing individuals cannot obtain MAID through advance directives, they may raise the topic with nurses in the context of advanced care planning, which is an important way that people can exercise their autonomy. Writing prior to MAID, Fowler and Hammer (2013) report that most elderly patients approaching end of life want comfort measures as opposed to life-prolonging treatment (p. e128). They argue that “as our population ages, and costs of health care increase, end-of-life care and planning is increasingly important to patients, families and the Canadian healthcare system” (p. e130). It remains to be seen how MAID will feature in discussions about advance care planning and end-of-life treatment options. Ideally, MAID should be seen as one option (albeit final) among a range of end-of-life treatment and care options from which patients can choose. MAID ought to be discussed concomitantly with robust options for a palliative approach to care—including family support— throughout the patient’s illness and dying journey.

400 Concepts and Cases in Nursing Ethics As was discussed in detail in chapter 7 on integrity (which contains a case concerning MAID), nurses who have a conscientious objection may elect not to participate in MAID (CNA, 2017b). As discussed above, nursing involvement in MAID includes a range of activities that may be more or less direct along a spectrum. Nurses may differ as concerns what counts as participation sufficient to engage their conscience (CNA, 2017b). Provisions for conscientious objection vary in specifics somewhat from one jurisdiction, or even one health care institution, to another. Faith-based health organizations have claimed conscientious objection for MAID and therefore nurses and nurse practitioners in these organizations will not be involved in MAID. Patients requesting MAID in a hospital that does not provide it will have to be transferred back to their home if possible or to a facility where MAID is provided. Health care institutions that do not provide MAID are obligated to provide easily accessible resources to refer patients to locations or centres where MAID can be supported. Whatever the nature of their involvement, nurses face challenges adjusting to MAID, particularly given their close day-to-day relationships with patients. In a 2019 scoping review of the available literature, Suva, Penney, and McPherson found evidence that organizations provide inadequate supports and education for nurses involved in providing MAID. The authors identify several areas of concern that need additional research, including the experience of nurses who conscientiously object. Banner et al. (2019) identify variations in regulatory guidelines across provincial and territorial jurisdictions in Canada that have given rise to role confusion and uncertainty for some nurses—for example, in the matter of responding to a patient’s request for information about MAID, whether nurses who feel unable to provide information are required to refer to an individual who can (p. 3). In a review of 17 guidance documents on MAID issued by Canadian nursing regulatory bodies, Persut, Thorne, Stager et al. (2019) conclude that regulators “across Canada have done an admirable job of providing guidance to nurses” but they add that much remains to be done in addressing system-wide issues to promote good nursing practice in the public interest while supporting the needs of nurses amidst this complex moral and legal landscape (p. 128). MAID engages deeply held values and beliefs and conjures a range of emotions. As nurses experience or come to terms with MAID as a clinical reality that touches or impacts them personally, whatever the nature of their involvement, they will be moved to some degree of reflection, and what Beuthin et al. (2018) in their study of nurses’ experience of MAID call “sensemaking.” The

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authors discuss the importance of spaces for nurses to safely explore their feeling and beliefs in relation to the impact of MAID and to support one another, whatever their views: Understanding the ongoing sensemaking process calls for spaces and ways of checking in: talking, listening, hearing, and supporting nurses; providing opportunities for debriefs and ethical conversations in safe venues where emotions can surface and issues of moral distress be expressed and addressed. Creating forums for nurses to discuss ethical questions or dilemmas related to religious or conscientious objection are vital. (p. 519)

It is important to recognize that MAID is not entirely unprecedented in the challenges it poses for nurses and other health care practitioners. There are many different contexts besides MAID in which the provision of health care stirs profound emotions and engages deeply held values. Being intimately involved in the lives (and deaths) of others presents nurses with profound, overflowing experiences that can strain and stretch their sensemaking abilities and provoke reflection on fundamental values. Nurses’ professional organizations, their employers, and their educational institutions offer opportunities for reflection and sensemaking through, for example, case discussions facilitated by a clinical ethics committee, which can be supportive as well as educational. In summary, the implementation of MAID is relatively recent, and its implementation is accelerating. Research and debate about possible legislative changes are ongoing.1 There are important questions that nurses should ask themselves in this evolving context. Lack of access to palliative care is an ethical issue, particularly to the extent that, lacking adequate access to palliative care, patients may feel that MAID is their only option (CNA, 2017b). Will MAID be a last resort or default position for patients? Ask yourself: “Where I am employed or study, is the need for palliative care met? How can nurses advocate for palliative care options to be accessible for patients/residents through a publicly funded health care system across Canada?” 1 There is a growing body of research and commentary on nursing and MAID, much of it just coming to press at the time of writing. In addition to the works cited above, see for example: Banner et al., 2019; Bellens et al., 2019; Booker & Bruce, 2019; Bravo et al., 2018; Bravo et al., 2019; Bruce & Beuthin, 2019; Edwards, 2016; Elmore et al., 2018; Heilman & Trothen, 2019; Pesut, Greig et al., 2019; Pesut, Thorne, & Greig, 2019; Pesut, Thorne, Greig et al., 2019; Pesut, Thorne, Stager et al., 2019; Schiller et al., 2019; and Suva et al., 2019.

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Nurses may agree or disagree with peers and colleagues about access to MAID. The process of sensemaking in relation to MAID and working through the powerful and perhaps even surprising emotions that may be evoked can be challenging, whether one is strongly supportive of MAID , opposed to it for reasons of conscience, or somewhere in between. Ask yourself: “Is the environment in the place I am employed or am a student one in which nurses can safely share and discuss their experiences, feelings, and beliefs with other nurses and in which potential tensions or conflicts can be managed respectfully? How can we as nurses support our nursing colleagues, both those with whom we agree and those with whom we disagree?” Patients, their families and friends, other patients or facility residents, and other health care providers, may also need understanding and support through the MAID process. Ask yourself: “What supports are available in the place where I am employed or am a student to assist others in the process prior to, during, and following MAID? What can we as nurses do to provide support and ensure that appropriate supports are available as needed for individuals, families and communities?” In all of this questioning, the rising costs of end-of-life care, particularly in view of an aging population, has been something of an “elephant in the room.” Extrapolating from cost analysis of legalization of euthanasia in the Netherlands and Belgium, Trachtenberg and Manns (2017) studied the economic outcomes and concluded that “if Canadians adopt medical assistance in dying in a manner and extent similar to ... the Netherlands and Belgium, we can expect a reduction in health care spending in the range of tens of millions of dollars per year” (p. E104). Trachtenberg and Manns (2017) decisively state their view that “neither patients nor physicians should consider costs when making the very personal decision to request, or provide, this intervention” (p. E104). However, not everyone shares this view, and fiscal arguments for explicit consideration of costs can be made. Nurses providing end-of-life care who see that needed nursing care is not available because of costs may ask how our health care system can move forward to separate cost considerations from arguments about policy and practice in connection with MAID. From the perspective of many patients, consideration of the costs of end-of-life care has already arrived. It is typical for patients with a terminal illness and for whom death is reasonably foreseeable to depend on a combination of publicly funded health care, private health care, and help from family and friends. For example, when palliative care

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patients decide to die at home, some of their nursing care will be provided by the provincial or territorial health care system: The number of hours allotted depends on the policies of the local community health provider. Gaps may be filled by private caregivers and support from their family and friends. Patients may find that savings they had set aside for their retirement or to pass on to their children are quickly depleted. In the event that this patchwork approach is not sustainable, perhaps due to caregiver fatigue or the cost of private caregivers, palliative care patients may be admitted to a hospital to die. If fortunate, they will be admitted to a palliative care unit. Limited access to palliative care in Canada can be seen in the broader context of resource allocation and about how to best deploy limited funds for persons and their families at the end of life. Coordinated nursing leadership is needed to help address the human and fiscal tensions we have noted above. Nurses can use their expertise to argue for policy changes that are fiscally, humanly, and ethically sustainable, such as strengthened home care support. Fortunately, as we indicated at the outset of this chapter, nurses are currently leading research and policy to make palliative support more widely accessible by promoting palliative approaches to care throughout illness and dying trajectories (CNA, CHPCA, CHPC-NG, 2015; Stajduhar & Tayler, 2014). Such approaches can be an excellent complement to the implementation of MAID, helping to ensure that MAID does not become a default.

5. CONCLUSION In closing this chapter, we emphasize the need for nurses and other health care providers to continue to develop their knowledge and skills related to the kinds of end-of-life care challenges and opportunities we have illustrated. We have focused on how health care ought to happen for patients and their families facing a life-limiting illness, including during the processes of dying and death. In so doing we have drawn on the wisdom of stories from patients, their families, their health care providers, and the courts. We have also drawn on the research and clinical experiences of Canadian nurse leaders who are promoting an overall palliative approach to care to support patients and their families, which is a goal that has been recognized by the CNA and other nursing groups. As we noted earlier, Stajduhar (2011) has argued that a “palliative approach recognizes that, although not all people with life-limiting illness require

404 Concepts and Cases in Nursing Ethics specialized palliative services, they do require care that is aimed at improving quality of life” (p. 10). Stajduhar and other expert nurse colleagues have helped us to understand that while specialized palliative care services will always be needed and ought to be more widely available, there ought also to be more consistent ongoing support for patients and their families throughout their illness journeys. Fortunately, these recommendations are being picked up by national nursing and interprofessional associations in Canada. As noted in their Joint Position Statement, the CNA, the CHPCA and the CHPC-NG “support the palliative approach to care and its central aim ...: to help people live well until death, across the lifespan, in all practice settings” (2015, p. 1). The document also reminds us that all “nurses have a fundamental role in a palliative approach to care” (p. 1). Many practical challenges for equitable access to specialized palliative care and more general palliative approaches to care remain. Conscientious nurses will continue to work to ensure that both specialized palliative care services as well as palliative approaches to care are widely available in rural as well as urban areas across Canada. Such services ought to include proactive approaches to support individuals and their families with their grief processes during illness and death as well as ongoing support for health care providers from all disciplines to address any related moral distress.

CASE STUDIES CASE 1: Margot Bentley and Advance Care Planning Consent issues often arise with patients nearing the end of life who lack capacity, or whose capacity has been diminished. There may be disagreement about whether a patient has the capacity to consent, and what counts as evidence that consent has been given. If the patient is incapable of consent, have they previously expressed their wishes relevant to decisions to be made in a legally recognized advance directive? If there is such a directive, is it clear about what the patient would wish to happen in the particular circumstances that have come to pass? What rights and responsibilities does a substitute decision-maker have with respect to refusal of treatment or of personal care? What

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are the obligations of health care institutions as concerns the provision of what is considered to be personal or basic care necessary for the preservation of life? The case of Mrs. Margot Bentley, an 82-year-old woman with advanced Alzheimer’s disease who had become unable to feed herself, engaged all of these issues and others yet. The issues came to a head because family members disagreed with the health care institution’s decision to continue nourishing Mrs. Bentley by spoon-feeding her. The matter came before the Supreme Court of British Columbia in 2014, which ruled against the family (Bentley v. Maplewood Seniors Care Society, 2014). Following an appeal, this ruling was upheld by the British Columbia Court of Appeal in 2015 (Bentley v. Maplewood Seniors Care Society, 2015). Key facts about the case and the issues raised have been extracted from the 2014 proceedings. Margot Bentley, 82, was diagnosed with Alzheimer’s disease in 1999. She had first entered a long-term residential facility in 2005. When that facility closed in 2009 she entered Maplewood House, operated by Maplewood Seniors Care Society. While there, her Alzheimer’s progressed to the most severe and final stage. Her condition at the time the case first came before the courts in 2014 was described as follows: Mrs. Bentley makes very few physical movements. She occasionally rubs the back of her hand, arm, or face. She is routinely transferred from her bed to a wheelchair. Her eyes are closed much of the time. She has not spoken since 2010. She does not indicate through her behaviour that she recognizes her family members or any other person. (para. 18) Importantly, Mrs. Bentley was no longer able to feed herself and Maplewood staff provided nourishment to her with a spoon to her mouth. Mrs. Bentley’s daughter and her husband applied to the court for several orders, but most notably for the court to declare that she “not be given nourishment or liquids” (para. 1). They argued that she had expressly communicated this wish when she was mentally capable, and that she was not presently capable of consenting. Maplewood and other respondents opposed the application to the court, arguing not only that she was in fact consenting to receiving food, but that “to stop giving Mrs. Bentley nourishment or liquids would cause her discomfort and bring about her death through dehydration and

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starvation,” which would “constitute neglect” and “may violate several criminal laws, including the prohibition against assisted suicide” (para. 2). The central issue considered by the judge who presided over the trial, Mr. Justice Greyell, was whether Mrs. Bentley was capable of making the decision to receive nourishment and liquids and was indeed consenting (para. 34). Justice Greyell noted that “applicable legislation sets out that adults are entitled to the presumption that they are capable of making decisions” (para. 53). This meant that the onus was on the petitioners to establish that she was not capable. In considering the question of consent, he also noted that “the relevant British Columbia legislation does not treat an adult’s mental capability as an all or nothing concept” and that it “clearly sets out a more nuanced approach to assessing capability” (para. 43). Given this nuanced approach to assessing capability, he pointed out that “Mrs. Bentley could very well be incapable of making a complex decision, such as whether to undergo a risky surgery, but capable of making a basic decision, such as whether she wants to eat or not” (para. 43). Maplewood staff had adopted the following protocol with respect to Mrs. Bentley: When she opens her mouth to accept nourishment or liquid, the care attendant places the nourishment or liquid in her mouth and Mrs. Bentley swallows it. When she keeps her mouth closed despite being prompted, the care attendant will try again. If she keeps her mouth closed despite a couple of attempts, the care attendant makes no attempt to force her to accept nourishment or liquid. (para. 19) The question was whether this behaviour on Mrs. Bentley’s part should be counted as evidence of consent. In support of the family’s position, Mrs. Bentley’s general physician, Dr. Edelson, argued that she was not capable, and that her responsiveness when prompted to eat with a spoon or glass was “a reflex and is not indicative of any conscious decision about whether to eat or not” (para. 22). The home argued she was capable and was consenting. They based this on several indications. Sometimes she opened her mouth to take food, and sometime she did not. They interpreted this behaviour as “acceptance” and “refusal” indicative of rudimentary consent. She accepted more foods at some times than

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at other times, would stop accepting food after she had eaten for a while, and accepted some foods but not others, which they interpreted as expressing a preference. She did not open her mouth for the dental hygienist. They argued that these behaviours were inconsistent with a reflex (para. 49). The home’s argument that her behaviour was indicative of consent was supported by Dr. Hilliard, a hospice palliative care physician who had assessed Mrs. Bentley in 2012 and by Dr. O’Connor, a university professor of social work who was also a capacity assessor for the province. They “were of the opinion that Mrs. Bentley is capable of consenting to receive nourishment and liquids and is indicating her consent or refusal by accepting or refusing to open her mouth and swallow” (para. 50). Justice Greyell noted that both had specialized knowledge and experience with Alzheimer’s disease and end-of-life care” (para. 50). By contrast, although Dr. Edelson “was qualified to give an expert opinion ... as Mrs. Bentley’s general physician ... he did not have any expertise in Alzheimer’s disease or in incapacity assessment (para. 21). All things considered, Justice Greyell found that the “preponderance of the evidence demonstrates that she has the capacity to make this decision,” noting that he believed it was “significant that Mrs. Bentley indicates preferences for certain flavours and eats different amounts at different times” (para. 59). He concluded that “the petitioner has not established that Mrs. Bentley’s behaviour is a mere reflex and not communication through behaviour, which is the only means through which Mrs. Bentley can communicate” (para. 59). This finding was enough to decide in favour of Maplewood, and against the petitioners. However, Justice Greyell noted that even if he had “found Mrs. Bentley incapable of making this decision that would not change the outcome of this petition” (para. 61). He went on then to consider several issues upon which the matter would turn if, contrary to what he did decide, he had found that Mrs. Bentley was in fact incapable of consenting or not consenting. One of these issues concerned the legal status and interpretation of Mrs. Bentley’s previously expressed wishes in the event that she were not in fact capable of consenting. The family argued that Mrs. Bentley had expressed wishes inconsistent with the Maplewood protocol, both verbally and in writing. According to affidavits by Mr. Bentley and her two daughters, after she had been diagnosed with Alzheimer’s in 1999, “Mrs. Bentley often verbally expressed to them that she did not want to live in a state of mental incapacity suffering from the symptoms of Alzheimer’s disease.” In his affidavit, Mr. Bentley stated:

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... she frequently referred to the fact that when she worked as a nurse, she often saw patients who are suffering from Alzheimer’s disease and other forms of dementia, and she described their symptoms. She frequently said, “Don’t let it happen to me” and other expressions to the same effect. I told Margot not to worry because she has made her living will and everything will be taken care of. Margot’s typical response was, “I hope so, I hope so.” (para. 7) Additionally, there were two written documents in dispute. The first was dated 1991, eight years before she was diagnosed with Alzheimer’s, at a time when Mrs. Bentley was indisputably mentally capable. In this “Statement of Wishes,” which was signed in the presence of two witnesses, Mrs. Bentley wrote that if “the time comes when I can no longer take part in decisions for my future” and “there is no reasonable expectation of my recovery from extreme physical or mental disability, I direct that I be allowed to die and not be kept alive by artificial means or ‘heroic measures’” (para. 5). Moreover, the statement specifically indicated that she would not want to receive “nourishment or liquid.” Justice Greyell found this statement to be unclear as applied to the means by which Maplewood was providing nourishment and liquid to Mrs. Bentley. Most people, he argued, would not “consider eating with a spoon or drinking from a glass, even when done with assistance, ‘artificial’” (para. 111). Moreover, he argued that the expression “heroic measures” “does not communicate with any degree of clarity what a particular adult considers ‘heroic,’” citing in this regard a report from a clinical ethics consult that had been done on the case, which stated that “there is consensus in the medical community that assistance with oral nutrition and hydration is neither artificial nor heroic” (para. 111). Reading the statement as a whole, he found that the “most likely interpretation appears to be that Mrs. Bentley did not want artificial delivery of nourishment or liquids through measures like a feeding tube” (111). In addition to finding that the statement was unclear, Justice Greyell also found that it was not properly formed as an advance directive because in it Mrs. Bentley had designated that her husband serve as “proxy for the purpose of making medical decisions on my behalf” (para. 5). However, the relevant legislation specifically indicates that someone writing an advance directive must know that they cannot appoint a proxy through that means (in British Columbia, the procedure for this is through what is called a “representative agreement”).

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The second document was found by Mr. Bentley in his house in 2011. It was undated, but evidence indicated that it would have been created sometime after the previous 1991 statement and before 2005. This “Second Statement of Wishes” read: I want it to be known that I fear degradation and indignity far more than death. I ask my medical attendants to bear this in mind when considering what my intentions would be in any uncertain situation. If the time comes when I can no longer communicate, this declaration shall be taken as a testament to my wishes regarding medical care. If it is the opinion of two independent doctors that there is no reasonable prospect of my recovery from severe physical illness, or from impairment expected to cause me severe distress or render me incapable of rational existence, then I direct that I be allowed to die and not be kept alive by artificial means such as life support systems, tube feeding, antibiotics, resuscitation or blood transfusions: any treatment which has no benefit other than a mere prolongation of my existence should be withheld or withdrawn, even if it means my life is shortened. (para. 9) Although the family argued the second statement was not authentic, Justice Greyell accepted that it was as “a matter of fact ... an expression of Mrs. Bentley’s wishes” (para. 15) and that it superseded the 1991 statement. He found that this second statement, like the first, was unclear, particularly on the point that in rejecting “artificial means of being kept alive” it specifically listed “tube feeding,” which is not how Mrs. Bentley was receiving nourishment. Moreover, the second statement indicated that she did wish to continue receiving “basic care,” which he interpreted to include the kind of assistance with nourishment and hydration that she was receiving (para. 127). This second statement too he found not to be a valid advance directive. In addition to finding neither statement to be legally valid as an advance directive and finding both to be lacking in clarity, Justice Greyell noted that there was a “greater problem” related to the absence of clarity regarding the purported representative’s authority (para. 98). This problem turned largely on the issue of whether nourishing Mrs. Bentley, as Maplewood was doing, should be classified as health care or as personal care. Justice Greyell argued

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that feeding Mrs. Bentley would be classified under British Columbia legislation as personal care, and not as health care. This is significant because whereas British Columbia law allows that a substitute decision-maker or representative can refuse health care necessary to preserve life under certain conditions, there is no provision that allows for a substitute to refuse life-preserving personal or basic care (para. 144). Moreover, he agreed with Maplewood that it had a duty in law to provide basic care under the circumstances, and that not to do so would constitute negligence (para. 145). Moreover, even if he had found that the provision of nourishment as per the Maplewood protocol counted as health care, under British Columbia rules a substitute decision-maker is able to refuse life-preserving care “only if there is substantial agreement among the health care providers caring for the adult that ... the decision to refuse substitute consent is medically appropriate” (para. 116). In Mrs. Bentley’s case, her health care providers (except for her family physician) believed that the refusal would be medically and ethically inappropriate (para. 119). These ancillary issues concerning the legal status and interpretation of Mrs. Bentley’s expressed wishes and the authority of Mr. Bentley to make decisions on her behalf were moot because Justice Greyell found that Mrs. Bentley was in fact capable of consenting and was consenting, and her present consent took precedence over any previous expression of wishes, however clearly stated. “All adults are entitled to change their mind subsequent to creating written instructions,” Justice Greyell noted, “which is one of the risks associated with written instructions for the future” (para. 54). Justice Greyell concluded his judgment with the following summary: 1. Mrs. Bentley is capable of making the decision to accept oral nutrition and hydration and is providing her consent through her behaviour when she accepts nourishment and liquids. 2. The assistance with feeding that she is currently receiving must continue. 3. The provision of oral nutrition and hydration by prompting with a glass or spoon is a form of personal care, not health care within the meaning of the HCCCFA [Health Care (Consent) and Care Facility (Admission)] Act. 4. Neither the 1991 Statement of Wishes nor the Second Statement of Wishes constitute a valid representation agreement or advance directive.

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5. Even if Mrs. Bentley was found incapable of making the decision to accept oral nutrition and hydration, I am not satisfied that the British Columbia legislature intended to allow reference to previously expressed wishes or substitute decision makers to be relied on to refuse basic personal care that is necessary to preserve life. 6. Withdrawing oral nutrition and hydration for an adult that is not capable of making that decision would constitute neglect within the meaning of the Adult Guardianship Act. This judgment was appealed, and subsequently upheld by the British Columbia Court of Appeal in 2015. Mrs. Bentley died in November 2016.

Case 1: Commentary This case illustrates the complexity of end-of-life decision-making, engaging multiple legal and ethical issues concerning autonomy, consent, advance directives, substitute decision-making, the distinction between health care and personal care, and the responsibility of health care institutions to vulnerable patients. Ethical issues in long-term care are not “grabbing headlines” but are a daily occurrence. A growing concern for nurses is how to provide ethical care to persons with advanced or late dementia, for example those who are not interested in food and liquids. The problem may be compounded by nurses not having sufficient time to give to residents during meal times. Although laws applicable to end-of-life decision-making in various jurisdictions across Canada are similar in their fundamentals, they do vary somewhat in specifics. This case was tried in the province of British Columbia and the courts applied that province’s laws to the issues before it. In other jurisdictions with different laws, the conclusion about a particular issue might have been different. Moreover, the facts of this case—and importantly whether Mrs. Bentley’s behaviour was evidence of consent, and if not what she meant to communicate in her expressed wishes—were interpreted differently by her family, on the one hand, and by Maplewood and the two courts that considered this matter, on the other. It is of course possible that Maplewood and the courts were wrong in the interpretation of the facts of the situation, or even in how they interpreted and applied the law. Henry (2017) comments that the clinical determination that

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Mrs. Bentley had capacity “is weak from an evidentiary perspective and should have been explored further” with additional expert opinion (p. 89). Perhaps Mrs. Bentley’s “acceptance” and “refusal” behaviour really was reflex, as her family and her family physician believed, and not evidence of consent? Notwithstanding that there was some ambiguity or lack of clarity in her expressed wishes, perhaps they were expressed clearly enough to rule out the likelihood that in the circumstances she would have consented, and the inference from her behaviour that in fact she was consenting? Perhaps her family members, who would have known her much better than her health care providers, were in a better position to interpret her wishes all things considered? Nonetheless, where there is difference of opinion or interpretation about matters of fact and the application of law to the facts, the courts have the ultimate say. Regardless, accepting that the relevant law was what it was, and that the care providers and administrators at Maplewood interpreted the facts, the law, and their legal responsibilities correctly, law is not ethics. There can be, and often is, disagreement on ethical grounds with what the law mandates or requires—about what the law should be or should mandate or require. Should the law allow such a wide scope for inferring consent from behaviour in cases such as this? Should the law classify the provision of nutrition and liquid by spoon and glass to the mouth as “health care” rather than “personal care”? Should the law give substitute decision-makers the authority to refuse such life-preserving care, however it is classified? Nurses and other providers will sometimes disagree with a given law to the point that they feel morally distressed by the difference between what the law mandates or requires and what they believe ethics requires of them. In extreme instances, they may feel duty-bound to act otherwise, at their peril and without the support of their regulatory bodies. In less extreme instances, and more prudently, they comply with the law and advocate for changes to the law in accordance with their ethical beliefs. Engaging with local health care ethics resources and administrative supports early in the conflict resolution process is wise. And counseling support as needed for patients and family members as well as health care team members is important throughout. Expressed in ethical terms, the main issue in the case we have just reviewed concerned a conflict not between autonomy and some other value but rather in the interpretation of autonomy at the end of life about whether Mrs. Bentley’s behaviour was in fact “autonomous” or “reflex.” Those on both sides of the issue—the family on the one side, and Maplewood (supported by the

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courts) on the other—claimed to be respecting Mrs. Bentley’s autonomy. The family, with reason, argued that Mrs. Bentley’s most decisive expression of her autonomy was in the wishes she had expressed, verbally and in writing, prior to becoming cognitively impaired by Alzheimer’s. At the time, she demonstrated autonomy as effective deliberation in that she indicated (albeit, not clearly and unambiguously enough as decided in the legal proceedings) not just what she wished, but also her reasons for wishing as she did. As a nurse, she knew from first-hand experience how a disease like Alzheimer’s can impact quality of life. She had “let it be known” that she feared “degradation and indignity far more than death” and instructed “medical attendants to bear this in mind when considering what my intentions would be in any uncertain situation.” By contrast, the mere “acceptance” and “refusal” behaviour that Maplewood and the courts took as evidence of consent, even if not merely “reflex” behaviour, was at best a very rudimentary expression of autonomy—cooperation at best. Although autonomy was the main value in play, the values of beneficence and nonmaleficence were also engaged. In addition to arguing that they were respecting her autonomy by orally providing her food and liquids, Maplewood argued that they had a duty to provide “personal care” to Mrs. Bentley. This duty, particularly as concerns vulnerable persons, is grounded in beneficence. However, whether the oral provision of foods and liquids were in any way benefiting Mrs. Bentley was disputed. The family saw the issue differently. Up until shortly before Mrs. Bentley’s death, her daughter continued to try to persuade Maplewood, to no avail, so she “could die a compassionate death.” One could argue that, autonomy aside, in view of Mrs. Bentley’s express remarks about how she feared degradation and indignity more than loss of life, continued feeding was lacking in compassion and inconsistent not only with beneficence but with nonmaleficence. Conflict about ethics between patients and families, or between either patients or families and the health care team, are not unusual, especially in endof-life situations. However, the number of such conflicts that percolate to the courts is relatively small. Whether a conflict develops to the point that the law is brought into play can depend in some measure on how the health care providers manage the issue. Given their close and frequent contact with patients and family members, nurses are well positioned to play a role in resolving ethical conflicts that arise and preventing them from escalating to the point that legal action is taken. The legal proceedings of this case provide very little information about the deliberations and discussions among members of the

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health care team, or between the team and the family, prior to the time the family applied to the court. Presumably, nursing staff would have participated in those deliberations and discussions, providing information and expressing their views. However, since we do not know much about these discussions and deliberations, and about the input and perspectives of various members of the team caring for Mrs. Bentley, we cannot say whether the issue could have been resolved without recourse to the courts, or resolved otherwise than the court ruled. Moreover, law aside, reasonable people can disagree on ethical grounds about how such issues should be or should have been resolved. This case also underscores the challenges that patients face in exercising their autonomy at the end of life through the use of advance directives and other legal instruments. It illustrates the importance of ensuring not only that one understands the requirements that must be met for one’s instructions to be recognized as legally valid, but also that one’s instructions are sufficiently clear and unambiguous that they will be interpreted as one would wish them to be in future circumstances that may arise. In its reasons supporting Justice Greyell’s decision, the British Columbia Court of Appeal (Bentley v. Maplewood Seniors Care Society, 2015) noted that “if nothing else, his analysis shows that persons who wish to make provision for their care and decision-making in their declining years should not only record their wishes clearly, but also obtain legal advice as to what exactly can be accomplished by so-called living wills, representation agreements, advance directives and related appointments” (para. 6). Here too nurses can play a valuable role. Nurses cannot give legal advice, but they can assist patients in understanding their rights and in thinking through and expressing as clearly as possible what it is that they would wish to happen in the event that they lost the capacity to decide. Further, nurses can support patients to initiate conversations with health care team members and family members to express what is important to them at the end of life. Consent laws across Canada define treatment differently. For example in Ontario those things done for a “health related purpose” are considered treatment. Bathing and feeding do not fall into that category. This type of care is considered basic care or comfort measures. Medical interventions are considered treatment, and in some cases may be life-saving. In ethical or clinical terms, treatments are interventions provided with the goal of benefiting patients and/or respecting their autonomy. On occasion, there may be harm to the patient, which may be justified in view of long-term benefits. Basic or personal care is assistance given to patients who need help with activities

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of daily living, such as bathing, toileting, moving, or having meals. Patients may range in their ability to care for themselves through one or more of these activities from being independent to being totally dependent. These basic activities are personal in that they require touching and intimate contact with the patient. Calling the care basic implies that the activities of daily life are the first ones that must be attended to before more advanced tasks and activities are completed, such as taking medication correctly, making meals, paying bills, doing crossword puzzles, and driving a car or cycling as a means of transport. Assisting with basic or personal care promotes the health of the patient. Aside from the obvious benefits of avoiding pressure ulcers, malnutrition, and dehydration, receiving basic care affects the dignity and feeling of well-being of the patient. The British Columbia Court of Appeal noted the stress that it would put on health care providers to live with and care for a patient consequential to a decision to refuse nutrition and hydration: It is a grave thing, however, to ask or instruct caregivers to stand by and watch a patient starve to death. It should come as no surprise that a court of law will be assiduous in seeking to ascertain and give effect to the wishes of the patient in the “here and now,” even in the face of prior directives, whether clear or not. This is consistent with the principle of patient autonomy [that is reflected in the legal statutes applied to the case] ... and in many judicial decisions ... where the Court emphasized that when assisted suicide is legalized, it must be conditional on the “clear consent” of the patient. (Bentley v. Maplewood Seniors Care Society, 2015, para. 18)

The law in Canada concerning these matters is open to interpretation on key points and moreover is evolving, MAID being a case in point. In a recent review of Canadian law, Downie (2018) concludes that voluntarily stopping eating and drinking (VSED) “is a legal pathway to a hastened death” (p. 53), and may be an alternative to medical assistance in dying for those who are not eligible. Downie interprets Canadian law as allowing that patients can legally “refuse oral and artificial nutrition and hydration while capable” and moreover can do so in advance by “stating a very clear informed refusal” while they are capable (p. 53). The bar for informed refusal appears to be higher than the bar for consent, which in Mrs. Bentley’s case was at best very rudimentary. Downie goes on to argue not only that “these refusals must, in almost all circumstances, be respected” but that “health care providers are legally permitted to inform patients about VSED

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as a pathway to death” (pp. 53–54). Whether nurses agree with VSED or not, they would have to cope with the experience of watching patients who elected for VSED dying in this way and would need to be supported in this experience. Mrs. Bentley’s family believed that she lived her last years under conditions that she would consider degrading and undignified. Subsequent to the Court of Appeal ruling, they stopped paying the bill of 4,000 dollars a month to Maplewood to protest their continued feeding of Mrs. Bentley. This engaged the public guardian in the province. In a story about that development the Vancouver Sun newspaper published a photo of Mrs. Bentley slouched over in a chair and appearing in a manner that could be taken as evidence to support the family’s view that she would find the conditions under which she was continuing to live degrading and undignified (Fayerman, 2016).

Case 1: Questions 1. There was disagreement about whether Mrs. Bentley was consenting to spoon-feeding. Her caregivers believed that by accepting some foods and declining others she demonstrated she had capacity to make a decision about nourishment and was consenting. Do you believe such behaviour could be indicative of consent in persons with late stage Alzheimer’s, or do you believe that consent simply is not possible in cases of late stage Alzheimer’s? Research through practice guidelines or in textbooks what the general consensus of the expert community is on this question. 2. In this text you have studied the principles of autonomy and beneficence. From the perspective of her nursing staff, explain why they might think they were acting according to these principles when they offered Mrs. Bentley food by spoon. How do you think the family would see the matter with respect to these principles? 3. Mrs. Bentley said she “fear[ed] degradation and indignity far more than death.” Today, the term dignity is used frequently, for example in the phrase “dying with dignity.” Explain what you think Mrs. Bentley meant when she made this statement. Reflect on what it means for you to live with dignity and when you would consider your life to be “degraded and undignified.” 4. Mrs. Bentley’s family thought her first advance directive was clear. Do you agree that her wishes were specific and excluded spoon-feeding? How could the document have been more explicit?

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5. Go through the exercise of preparing an advance directive. Prepare your instructions and how you will communicate your values and wishes. Prepare instructions also as concerns who you would wish to be substitute decision-maker, who need not be a family member. CASE 2: Continuous Palliative Sedation Therapy Sedation at the end of life is one of several treatments offered for palliative care patients. Sedation practices vary in several ways, including in the pharmacological agent used, the extent to which the patient’s consciousness is reduced, the indications for which it is used, when it is used, the rationale for its use, and whether it is used together with the withdrawal or withholding of artificial hydration and nutrition (Rietjens et al., 2018). The terminology used to describe and distinguish different palliative sedation practices and protocols also varies (Schüklenk et al, 2011), as do protocols and guidelines published by health care institutions and health professional groups in different countries or even in the same country (Sullivan, 2015). Some sedation practices or types are more ethically problematic than others. In particular, there has been vigorous and continuing debate about what has been called “terminal sedation.” Essentially, terminal sedation refers to practices wherein consciousness is reduced to the point of unconsciousness continuously until death occurs, combined with withholding or withdrawing artificial hydration and nutrition (Schüklenk et al., 2011, p. 6; Tännsjö, 2004a, p. xvi). The main issue raised by this practice is evident in the title of an edited anthology, Terminal Sedation: Euthanasia in Disguise? which featured essays by prominent philosophers and practitioners on opposing sides of the question (Tännsjö, 2004b). If sedation is administered to a dying patient to the point of unconsciousness up to the moment of death, and particularly when combined with removal of artificial nutrition or hydration, how is that different from euthanasia? For those who argued that there is an ethical difference, the difference turned on the intention of the practitioner administering the sedation. If the intention in administering sedation is to relieve pain or suffering that is otherwise intractable, even if the titration necessary to achieve this end renders the patient unconscious continuously up to death, this by itself would not count as euthanasia (the intention for withholding or withdrawing artificial hydration and nutrition would likewise matter). For others, regardless of intention, the foreseen consequence of the sedation is death, and terminal sedation is just a euphemism for euthanasia.

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The term “terminal sedation” may be used less commonly today, but the type of practice denoted by the term and similar practices continues to be controversial and debated under different names. In the Canadian context, the Canadian Society of Palliative Care Physicians (CSPCP) uses the term “Continuous Palliative Sedation Therapy” (CPST), which is defined as “the use of ongoing sedation continued until the patient’s death” (Dean et al., 2012, p. 2). In recognition that Canada did not “have a standardized ethical and practice framework” for CPST, “variance” in Canadian practice, and “lack of international and national consensus on CPST, the CSPCP “formed a special task force to develop a consensus-based framework for CPST” (Dean et al., 2012, p. 1). The task force drafted a framework based on a review of the literature and revised the framework in view of feedback solicited from interdisciplinary experts, and from workshops at three national conferences. The framework thus revised was then submitted to membership of the CSPCP, who scored its draft recommendations on a Likert scale, with most of its recommendations enjoying a high level of consensus. The CSPCP formally endorsed the framework and the task force published it in 2012 (Dean et al.). Due to “lack of consensus in many areas of CPST,” including “terminology, prognostic criteria,” and whether it would be justifiable to use CPST in the case of “existential distress,” the task force did not propose practice guidelines but rather a “framework to standardize new and existing policies on CPST,” which it concluded would “provide a basis for the development of safe, effective, and ethical use of CPST for patients in palliative care and at the end of life” (Dean et al., 2012, pp. 1–2). The task force noted concerns that “CPST might constitute euthanasia” but argued that CPST “correctly practiced” (i.e., as per the recommendations in its framework) “is not a form of euthanasia but an appropriate palliation” (p. 2). The key difference is the intention or motive. The task force defined euthanasia as “knowingly performing an act that, with the motive of mercy, intentionally ends another person’s life” (p. 2). In contrast, according to its recommendations, the “aim of CPST is to relieve refractory and intolerable suffering of the patient” (p. 2). Several of its recommendations are directed to this difference: ■ before considering CPST, “the care team should have or seek expertise to determine that the symptoms are refractory and intolerable” (p. 2); ■ sedation should be titrated so that the level of consciousness is reduced only as far “as necessary to relieve the suffering,” and without the intention of “hastening death” or of “bringing about complete loss of consciousness,” which may occur as an effect of appropriate titration, but not as its intent (p. 2); and

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■ decisions about CPST should involve all relevant members of the care team (p. 3). In sum, intention is demonstrated by careful assessment and collaborative palliative care planning. Death often happens very quickly after CPST begins, but the task force noted that “data published to date suggests that the appropriate use of CPST does not shorten life” (p. 3). However, even if it did, or in cases where it does, this would be consistent with the framework provided that this was not the intention. However, regardless of intention, the effect of hastening death would undermine the argument that the disease itself was the cause of death, since in this case the sedation would contribute to the cause of death, as would the removal or withdrawal of artificial nutrition and hydration, which the framework allows may accompany CPST in some instances. How then is CPST in the context of the task force framework different from MAID? In general terms, MAID is primarily autonomy oriented (the right of the patient to choose); CPST is primarily beneficence oriented (the intention of the practitioner to relieve suffering). The most crucial difference is based on intent or motive. Whereas the framework specifies that CPST should not occur with the intent to cause or hasten death, but rather to relieve suffering, MAID allows for “the administering by a medical practitioner or nurse practitioner of a substance to a person, at their request, that causes their death” (Bill C-14, 241.1.a). In this case, there can be no doubt that the intent of MAID is to cause death; hence the conclusion of the task force that CPST in the context of its framework is not euthanasia. For patients or providers who object to euthanasia, this makes a significant ethical difference. There are other differences between CPST and MAID, which may be relevant to an assessment of their ethical difference (Booker & Bruce, 2019). Whereas CPST (at least, in accordance with the framework) allows for the possibility of consent from the substitute decision-maker if the patient lacks capacity to decide (p. 3), MAID can only occur with the direct consent of the patient. The involvement of nurses in CPST can be more direct than in MAID (with the exception of nurse practitioners, who are fully involved in MAID) insofar as nurses administer the sedation at the bedside. Additionally, MAID is regulated according to a legally binding set of criteria and safeguard protocols. Several recent studies of nursing attitudes toward, and involvement in, palliative sedation (Beel et al., 2006; Ciancio et al., 2019; De Vries & Plaskota, 2017; Woods, 2014) indicate ethical concerns and discomforts. However,

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research on this subject needs to be carefully interpreted given that practices and protocols vary, even in the Canadian context. Moreover, practices and protocols continue to evolve and there are issues about which consensus does not yet exist, such as CPST used for the relief of existential distress (Voeuk et al. 2017). Nurses who conscientiously object to CPST for whatever reason may decline to participate as they may for MAID or other practices, subject to conditions we have described in the chapter on integrity (see chapter 7). Not all patients who would be eligible for MAID would be eligible for CPST. For example, the indications for CPST are narrower with respect to the requirement that the patient must have refractory and intolerable suffering and usually must have a life expectancy of only one or two weeks. As well, not all patients who would be eligible for CPST would be eligible for MAID. For example, as with other end-of-life practices, a substitute decision-maker can consent to CPST for a patient lacking capacity to consent. However, MAID without exception requires the voluntary consent of the patient. Some palliative care patients would be eligible for either CPST or MAID. For example, a palliative care patient may begin with intermittent sedation and, approaching the point at which the pain becomes intractable and intolerable, elect either for continuous deep sedation to the point of death (CPST) or MAID. The following case presents a patient faced with such a choice. Mrs. Haddad is a 55-year-old registered nurse who is a patient on a palliative care unit. Six months ago she learned that she had pancreatic cancer. She received aggressive treatment, which ended a month ago when it was determined that the cancer had spread through her body. Her life expectancy is short, one month. To be as comfortable as possible, she has analgesia every four hours. However, she has breakthrough pain every two hours and then receives additional medication. She rates her pain as ranging from eight to ten on a tenpoint pain scale. Her palliative care team agree that her pain is very hard to manage. They recommend a different pharmacological approach and visit daily, adjusting the dosages in response to her experience of pain. She has complementary therapies including music and massage therapy. Mrs. Haddad is a devout Catholic and receives spiritual support from her priest, who has given her the sacrament of Anointing the Sick. After two weeks Mrs. Haddad says that her pain has diminished only slightly and at times is intolerable. She reminds the pain specialists that she is a registered

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nurse and is well-informed about pain management. She finds their valiant efforts to be noble, evidence-based, and compassionate but sadly ineffective in her case. She requests the palliative care team meet with her and her husband. At this meeting, Mrs. Haddad begins the discussion by stating that she and her husband are both devout Catholics and that MAID is not an option because their “faith forbids euthanasia.” The ensuing discussion focuses on whether to continue the current palliative care plan, to endure the pain that has become intractable and intolerable, or to begin CPST . After the team has laid out these two options, Mr. Haddad responds that being sedated into unconsciousness continuously to the point of death is just “euthanasia in disguise.” He then urges his wife to continue with the current treatment plan, perhaps increasing the dosage or trying a different pharmacological approach, although the pain specialists admit that, given what they have already tried, this is unlikely to be effective.

Case 2: Questions 1. Compare and contrast the following three terms: terminal sedation, continuous palliative sedation, and medical aid in dying. 2. Do you agree or disagree with Mr. Haddad’s position that continuous deep sedation is “just euthanasia in disguise”? On what grounds? 3. Discuss your experiences with persons receiving palliative care. What ethical issues did you encounter, and how did you respond? 4. Compare the following end-of-life situations in terms of the emotional and ethical impact on nurses: a. At the request of a patient, MAID is to be administered. The physician’s orders are written for MAID. The nurse starts an intravenous line and keeps the line patent. The physician administers medications. b. At the request of the palliative care patient, orders for CPST are written. The nurse administers medications as ordered. c. At the request of parents, CPST is ordered for their child. The nurse administers the medications.

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Sawatzky, R., Porterfield, P., Lee, J., Dixon, D., Lounsbury, K., Pesut, B., Roberts, D., Tayler, C., Voth J., & Stajduhar, K. (2016). Conceptual foundations of a palliative approach: A knowledge synthesis. BMC Palliative Care, 15(5), 1–14. https://doi. org/10.1186/s12904-016-0076-9 Schafer, A. (2009, November 5). The great Canadian euthanasia debate. The Globe and Mail. Schiller, C.J., Pesut, B., Roussel, J., & Greig, M. (2019). But it’s legal, isn’t it? Law and ethics in nursing practice related to medical assistance in dying. Nursing Philosophy, 20(4), e12277. Schüklenk, U., Van Delden, J.J., Downie, J., Mclean, S.A., Upshur, R., & Weinstock, D. (2011). End-of-life decision-making in Canada: The report by the Royal Society of Canada expert panel on end-of-life decision-making. Bioethics, 25, 1–73. Seymour, J. (2004). What’s in a name? A concept analysis of key terms in palliative care nursing. In S. Payne, J. Seymour, & C. Ingleton (Eds.), Palliative care nursing: Principles and evidence for practice (pp. 55–74). Open University Press. Sneiderman, B. (1999). The case of Robert Latimer: A commentary on crime and punishment. Alta. L. Rev., 37, 1017–44. Stajduhar, K.I. (2011). Chronic illness, palliative care, and the problematic nature of dying. Canadian Journal of Nursing Research, 43(3), 7–15. Stajduhar, K.I., & Tayler, C. (2014). Taking an “upstream” approach in the care of dying cancer patients: The case for a palliative approach. CONJ, 24 (3 Summer), 144–53. Stingl, M. (2010). Introduction. In M. Stingl (Ed.), The price of compassion: Assisted suicide and euthanasia (pp. 1–22). Broadview Press. Storch, J., Starzomski, R., & Rodney, P. (2013). Re-framing end of life decision-making. In J.L. Storch, P. Rodney, & R. Starzomski (Eds.), Toward a moral horizon: Nursing ethics for leadership and practice (2nd ed., pp. 333–57). Pearson-Prentice Hall. Sullivan, W.F. (2015). Palliative sedation and the goals of care at the end of life. In P. Taboada (Ed.), Sedation at the end-of-life: An interdisciplinary approach (pp. 15–26). Springer. Suva, G., Penney, T., & McPherson, C.J. (2019). Medical assistance in dying: A scoping review to inform nurses’ practice. Journal of Hospice & Palliative Nursing, 21(1), 46–53. Tännsjö, T. (2004a). Terminal sedation: A substitute for euthanasia? In T. Tännsjö (Ed.), Terminal sedation: Euthanasia in disguise? (pp. 15–30). Springer. Tännsjö, T. (Ed.). (2004b). Terminal sedation: Euthanasia in disguise? Springer. Trachtenberg, A.J., & Manns, B. (2017). Cost analysis of medical assistance in dying in Canada. CMAJ, 189(3), E101–E105.

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ADDENDUM

Reflections on the Coronavirus Disease 2019 (COVID-19) Pandemic: June 3, 2020 SARS [Severe Acute Respiratory Syndrome] taught us lessons that can help us redeem our failures. If we do not learn the lessons to be taken from SARS, however, and if we do not make present governments fix the problems that remain, we will pay a terrible price in the face of future outbreaks of virulent disease. —Commission to Investigate the Introduction and Spread of SARS & Campbell (hereafter, SARS Commission), 2006, p. 2

1. INTRODUCTION As this book was nearing final stages of production, a novel coronavirus outbreak, COVID-19, was becoming a global concern in light of alarming reports from China beginning in 2019, and soon after from Italy. On March 11, 2020, the World Health Organization (WHO) formally classified the outbreak, which by then had spread to many countries, as a pandemic. On that same day, spurred by a reported case on its campus, Laurentian University, the university at which one of us teaches, suspended on-campus classes. In the days that followed 429

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other Canadian universities did the same. Over the next few weeks massive and dramatic changes occurred as governmental and public health authorities mandated extraordinary emergency measures to curtail the alarming spread of the disease, which they feared would overwhelm the health care system. Virtually all sectors of Canadian society have been profoundly impacted, and across Canada our lives have been disrupted in myriad ways by these measures, varying somewhat depending on the jurisdiction, including social distancing; social isolation; quarantine; “stay-at-home” orders; various closings—of borders, of parks and playgrounds, of schools, of many businesses and enterprises deemed “non-essential”; suspension of many “non-essential” health services; changes in working conditions; and changes in how health care and other services were being delivered, including shifting many services from face-to-face to online. This time period has become known as “the lockdown.” The lockdown also caused a delay in the production of this book, as Broadview Press suspended warehouse activity in compliance with lockdown measures. In early April, several weeks after we had returned page proofs and the book was out of our hands, Stephen Latta from Broadview asked us whether, given its delay and the relevance of COVID-19 to its subject matter, we would be open to writing an addendum to the book, consisting of discussion about the COVID-19 pandemic. We hesitated not just because the timeline was tight, even with the delay, but also because the situation was rapidly evolving with much uncertainty and much still unknown. We understood that we were still in the middle (perhaps nearer to the beginning, perhaps nearer to the end?) of something that at this time, and no doubt for some considerable time even after the pandemic is history, could hardly be fathomed. With hesitation and considerable trepidation, we decided that a COVID-19-focused addendum would be feasible and worthwhile, and that we would reflect on the pandemic through the lens of the analysis and discussion applied throughout the book. At the outset of our reflections, it is useful to distinguish three distinct but interrelated dimensions of the COVID-19 pandemic. In the first place, there is the recently discovered virus itself—severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2)—which was formally identified and isolated in early January 2020. Secondly, there is the disease caused by the virus—coronavirus disease (COVID-19)—which was unknown before the outbreak, began purportedly in Wuhan, China in December 2019, and is now a pandemic affecting many countries globally. As of June 2, 2020, COVID-19 had infected 91,351 people in Canada (6,193,544 worldwide), and 7,305 deaths in Canada have

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been attributed to COVID-19 (376,320 worldwide) (WHO, 2020). To put this in perspective, during Canada’s last pandemic in 2003, 44 Canadians, concentrated in the Toronto area, died from SARS, and less than 500 died world-wide. Thirdly, there is the dramatic change to social reality that has occurred in consequence of, and in response to, the virus and the disease. This dimension of COVID-19 includes the preventative and mitigatory public health measures, collectively referred to as the lockdown, put in place to address the pandemic. In addition to whatever the impact of these lockdown measures is on curtailing the spread of disease, some of these measures themselves, notably the suspension of non-essential health care and much of the economic sector, will have significant consequences beyond their immediate duration. At the time of writing, although there is much that we know, there is much that remains unknown, uncertain, or subject to debate. As concerns the virus itself, there is still much to be learned about how it is and can be transmitted; the factors conducive to its spread, its contagiousness, and its virulence; and the effectiveness of mitigation measures such as personal protective equipment (PPE), hand hygiene, and masks for the general public and health care providers. So too there is much to be learned about how and why it affects various people and population groups differently, the factors (such as co-morbidities) that account for why some people and population groups exhibit no symptoms or mild symptoms whereas others become gravely or mortally ill, and what treatments seem to work best or are most promising. Finally, there is still much to be learned not just about the effectiveness of various preventative and mitigatory measures, but also about secondary, unintended negative effects of these measures themselves on individuals, groups, and societies in the short and long-term. Research is actively underway in each of the aforementioned dimensions of the COVID-19 pandemic, building on relevant pandemic research and analysis that has been done in the past. Moreover, protocols and guidance developed in the context of earlier outbreaks and experience gained from managing them helped prepare public health officials and hospitals to respond to COVID-19. For example, the analysis and principles in Stand on Guard for Thee (Pandemic Influenza Working Group, 2005), the SARS Commission (2006), and past statements by professional bodies such as the Canadian Nurses Association ([CNA ], 2008; 2017) furnished guidance—transparency as a principle, for example—for the development of policies and protocols. To the extent such guidance had been taken up by health care organizations and policy-makers,

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our Canadian society was better prepared in some ways than we were for previous outbreaks. No doubt we would have been even better prepared had more been done to apply what we had already learned from our experience with previous outbreaks. Policies, practices, and protocols are evolving, and will continue to evolve, in view of more and better evidence generated from new research. Although the COVID-19 pandemic is in some ways unprecedented in scope and magnitude, decision-making under conditions of uncertainty, or even conflicting views about the interpretation of relevant evidence, is not by itself extraordinary. Nurses and other health care professionals are used to contending with uncertainty as part and parcel of their practice. Uncertainty about evidence, however, is not the only uncertainty with which decision-making in response to an outbreak must contend. It is of course prudent and responsible that ethical decisions be informed by the best evidence available, but evidence alone is not enough. Responsible decisions turn on both evidence and values, whether those decisions occur in our everyday lives or at the broad level of public policy and public health. The most fundamental issues raised or brought to light by the pandemic have been policy issues that engage not just evidence but also values. The values engaged by COVID-19 decision-making have sometimes been in tension or conflict, and there can be uncertainty, and room for debate, about how values should be balanced in decision-making at the individual and collective levels. The future trajectory of the disease is uncertain; so too the enduring consequences—of the disease and the public health measures put in place to protect the population. At the time this addendum is being written, Canada and many other countries have been in a lockdown for almost three months. Only essential businesses were open, schools were closed, and people were instructed to leave their homes only for essential reasons. Partly in consequence of the lockdown, the spread of the disease and its ravages in Canada, as grave as they have been, have not been as grim as feared when the lockdown began. Hospitals and emergency services were strained, but not overwhelmed as estimated might happen based on early projections when infections and deaths were rising at an alarming rate. Nonetheless, as this book goes to press, the situation remains very fluid and perilous, and more so in some provinces and locations than in others. Most provinces have begun to relax measures put in place to “flatten the curve”—the curve being the desired shape of a graph over time showing a point at which

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the upward rise of infections, hospitalizations, and deaths plateaus and begins to decline. We are moving in the direction of gradually and tentatively “opening up” again. There is controversy about how, when, and at what pace this should occur, and under what conditions measures that have been relaxed should be reinstated if the curve begins to rise again beyond some critical threshold. These policy decisions should be based on the best available evidence, to be sure, and should also be responsive to changing evidence. However, ultimately, policy decisions turn on ethical questions and on, importantly, how we should weigh the good of preventing the spread of and death from the disease against negative health impacts (short and long-term) indirectly caused by various quarantine measures, and against other social goods and values in addition to health. The thinking on and discussion about values and value issues will continue to evolve as the pandemic evolves, in Canada and beyond. National and international agencies representing professional groups in nursing and other health care disciplines are developing resources and ramping up guidelines to address the well-being of the populations they serve and the well-being of health care providers. There is increasing public discussion and debate about various policy issues in the media and in the academic literature. In this addendum, we use the key value concepts discussed in this book as a framework to generate and organize reflections on ethical tensions and issues related to the COVID-19 pandemic, with particular reference to nurses and other health care professionals. At the same time, we use the pandemic as an opportunity to further illustrate these value concepts and demonstrate their importance and relevance, even, and perhaps especially, in a time of radical disruption and existential crisis. These reflections are written while appreciation of the impact of the pandemic continues to develop. Under the circumstances, and focused on the Canadian context of a pandemic that is global, our reflections are not meant to be comprehensive. However, we think they do map out prominent ethical issues, short and long term, that the pandemic brings to the fore to be considered for purposes of responsible individual and collective decision-making during and after the pandemic.

2. BENEFICENCE Beneficence is the most fundamental value in health care in that the primary purpose and mission of the health care system, and of those who work within

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it, is to help others and to do good in matters concerning health. It is fitting therefore to begin these reflections starting from beneficence, as this book does. 2.1. Virtues and Duties in a Pandemic Beneficence is a constitutive virtue for nurses and others in the helping professions. Health professionals care not just for people, but also about people. This characteristic is related to altruism, which implies a certain selflessness in relation to the other, acting for the good of the other, perhaps even at the cost of some burden to oneself. Depending on the health care setting and the type of care being given, those providing care on the frontline are considered to be at greater risk of contracting the disease, as has become increasingly reflected in current media reports. At the same time, a recent meta-analysis by a team of researchers in Alberta has indicated that the actual incidence of health care providers acquiring COVID-19 in that province through their occupational activities is not entirely clear, and requires further study (Alberta Health Services COVID-19 Scientific Advisory Group, 2020). Protocols to reduce the risk continue to evolve in view of emerging evidence, and while it appears that SARS-CoV-2 may not be as virulent as feared in the early days, some significant uncertainty remains about the nature and extent of the risk in various populations, and the effectiveness of different precautions. Moreover, there have been well-publicized yet ongoing deficits with the supply of PPE, which is a crucial component of risk-reduction protocols. In its comprehensive three-volume report on the 2003 SARS outbreak, the SARS Commission (2006) noted that “nurses lived daily with the fear that they would die or infect their families with a fatal disease,” and that likewise “respiratory technicians, doctors, hospital workers, paramedics and home care workers lived with the same fear” (p. 1). After the SARS outbreak, the commission reported on a survey of members of the Ontario Nurses’ Association (ONA), which found that “almost two-thirds felt their health and safety had been compromised” during the outbreak, and that more “than half felt their SARS work was not adequately respected or they were unsure if it was respected” (p. 2). Concerns of respondents were reflected in remarks such as “I was torn between staying and quitting because my husband was scared,” “nobody listens

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to nurses,” and “totally devastating on family life” (p. 2). Similar fears and concerns have arisen in connection with COVID-19. In addition to the risk of contracting the disease, frontline health care workers (and some more so than others based on their practice environment) bear an additional burden. Being occupationally at greater risk of contracting the disease also means that one poses a greater risk, or is perceived by oneself or others to pose a greater risk, of infecting others with whom one has close contact, including family members with whom one lives. The mere fact of being a frontline worker can carry a negative stigma that may lead to being shunned. The mental health effects of these burdens on health care providers are not insignificant (Khanlou & Orazietti, 2020). Across Canada and in other countries, frontline health workers have also been hailed as heroes, as have other frontline workers designated “essential” across a wide variety of occupations, from grocery clerks to first responders. The epithet “hero” may be more apt for those practising in some contexts than in others, depending on variables such as exposure to residents of care homes and shelters, patient acuity, workloads, and availability of PPE resources. Regardless, it does express something important about virtues that are prized in health care. Caring about and for the good of others is considered virtuous, particularly when one does so at some degree of risk or burden to oneself, which additionally exhibits the virtue of courage. Virtue is something that one can possess and practise to varying degrees. One can be more or less virtuous. The exercise of virtue to an exceptional degree is associated with “going above and beyond” one’s duty. A significant difference between duty and virtue is that although we can reasonably expect people to do their duty, we cannot reasonably require them to be virtuous, or at least to be virtuous above and beyond what is required strictly as a matter of duty. What level of risk and burden can we reasonably expect health care workers to take on for themselves and their families as a matter of duty? Because this is a value question, it cannot be answered by a simple formula, but there are some general considerations that can guide reflection about it. For example, the probability of the risk, and the magnitude of the risk if one does get infected, are important considerations. Early on it was evident that COVID-19 can have very serious consequences, including death. At the time this addendum is being written and as epidemiological insights continue to rapidly evolve, there remains much uncertainty. This includes uncertainty

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about who is most at risk of acquiring the disease, who is most likely to transmit the disease and at what stages during the course of their illness, what the consequences for diverse population groups may be, and the effectiveness of various preventative measures and treatments. One way of thinking about risk and duty is to use the model of a contract, such as an employment contract. In metaphorical terms, one could say that duties arise out of an implicit contract between a profession and society. Members of the profession accept certain duties and responsibilities in return for rights and privileges afforded to them by society. If society (and employers) expects health care professionals to accept some level of risk as part of their work, health care professionals should be able to expect that society (and employers) will do what can be done to minimize this risk to the extent possible. Correlative to their duty, health professionals have a right to expect that they will be provided appropriate PPE, and a right to refuse to accept risk under certain conditions. They also have the right to expect that they will be consulted about how their particular practice environments can be made safer (Pesut & Rodney, 2020). It would be fair to expect that if health care professionals and personal support workers do become sick they would be appropriately cared for and provisions, such as childcare, would be made to take care of their families as needed. We lack robust evidence about if or how such support of health care professionals and personal support workers is (or is not) taking place. It may be virtuous of health care professionals and personal support workers to accept otherwise unacceptable risks in some circumstances, such as when the best or most effective equipment for precaution is simply not available and cannot, in the circumstances, be obtained. However, the acceptance of risk under such circumstances may be above and beyond the call of duty. At a societal level, unless governments and employers do their part to ameliorate risk as much as possible, the sustainability of the health care workforce will be at risk (Maxwell, 2020). The following quotation from the SARS Commission (2006) is noteworthy: “If the Commission has one single take-home message it is the precautionary principle that safety comes first, that reasonable efforts to reduce risk need not await scientific proof ” and that this principle should be enshrined and enforced “throughout our entire health system” (pp. 13–14). Early on in the pandemic, it was evident that significant outbreaks were occurring in long-term care facilities. Those working in long-term care facilities were concerned for themselves and for residents. On April 22, 2020, a case

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was heard before the Ontario Superior Court of Justice (ONA v. Eatonville/ Henley Place, 2020) that brings into stark relief some of the issues raised above. Justice Edward Morgan ruled on an application for injunctive relief from the ONA against four private long-term care facilities. ONA sought to have these facilities “provide them with appropriate access to the PPE that they need to protect themselves and the residents of the facilities and to implement ... administrative controls for LTC [long-term care] facilities” mandated by public health guidance and directives to which the facilities were subject, including “allowing nurses to make PPE decisions on an ongoing basis at the point of care, as well as isolating and cohorting residents and the staff attending to them so that those who are infectious are kept separate from and treated by different nurses than those who are not” (para. 4). On legal grounds, the ONA claimed that the “lack of necessary PPE and appropriate infection control procedures at these LTC facilities” was in “violation of the collective agreements” between ONA and the facilities, “a breach of the public health Directives that specifically apply to COVID-19,” “a violation of the Occupational Health and Safety Act,” and an infringement of “the right to life, liberty and security of the person” under section 7 of the Charter of Rights and Freedoms (para. 5). Justice Morgan essentially agreed with the position of ONA that nurses at the point of care had the ultimate responsibility and right to assess and determine not only what PPE was needed in the circumstances, but also “other measures as appropriate and required under the circumstances ... on the basis of their professional judgment, taking into account the immediate situation as well as relevant longer and shorter-term considerations” (para. 95). He ordered the facilities “to provide nurses working in their respective facilities with access to fitted N95 facial respirators and other appropriate PPE when assessed by a nurse at point of care to be appropriate” (para. 96) and “to implement administrative controls such as isolating and cohorting of residents and staff during the COVID-19 crisis” (para. 97). The case raises many secondary issues, which we will return to later. Here we will touch briefly on an issue relevant to the preceding discussion of duty and virtue. In one line of argument in support of their position, the facilities framed the issue as one in which “nurses and other medical staff treating COVID-19 patients in LTC homes represent their own narrow, personal interests, while the privately owned LTC homes represent broad, community-based

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interests” (para. 93). Justice Morgan gave this no credence and, in marked contrast, characterized nurses working in these homes in altruistic terms: One need only read the affidavits of the individual nurses in this Application record to understand that they spend their working days, in particular during the current emergency situation, sacrificing their personal interests to those of the people under their care. And given the nature of the pandemic, they do this not only for the immediate benefit of their patients but for the benefit of society at large. To suggest that their quest for the masks, protective gear, and cohorting that they view as crucial to the lives and health of themselves and their patients represents a narrow, private interest seems to sorely miss the mark. (para. 94)

The materials we have reviewed above have significant implications regarding the support of all health care providers’ well-being in caring for others. For one, health care agencies ought to ensure that diverse health care providers at all levels of the organization (frontline through to management) are proactively engaged in providing their expert advice about how best to respond to COVID -19 related challenges in their specific practice areas. There also ought to be a serious and sustained commitment to supporting the physical and psychological health of care providers at all levels during and after their pandemic care experiences. Such support should reflect a proactive “universal precautions” approach to providing counselling support to address compassion fatigue, vicarious trauma, and moral distress (Khanlou & Orazietti, 2020; Pesut & Rodney, 2020; Thorne et al., 2020). The pandemic has also illustrated that our Canadian health care system ought to attend more carefully to those patients and families who are most at risk of harm. It is now becoming increasingly clear from recent radio and print news reports that “from the first COVID-19 outbreak in British Columbia to the devastation in Ontario and Quebec, seniors in long term care have been hit hardest by the coronavirus pandemic” and account for 80 per cent of deaths due to COVID-19 (Brean, 2020). Journalist Brean notes that the “vast over-representation of long term care home residents in Canada’s death toll has revealed a terrible aspect of the pandemic—that the weakest and most vulnerable in our society are in the most dangerous places.” Indeed, in Quebec and Ontario, Canadian Forces personnel were sent into long-term care facilities to assist in managing the COVID-19 outbreaks that had occurred (Brean, 2020). In April,

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the personnel issued a shocking report that uncovered serious deficits in human and material resources for the care of residents, which aroused widespread anger and outrage (Brean, 2020). Whether court cases such as the Ontario Superior Court of Justice’s report by Justice Edward Morgan and media reports such as Brean’s result in systematic reforms in long-term care homes remains to be seen. 2.2. Clinical Practice Ethics and Public Health Ethics The good that health professionals aim to achieve is health. The health system comprises a wide variety of workers applying a diverse range of skills and knowledge for the health good of others. Within this system we can distinguish two main components, which we will call “clinical practice” and “public health.” In clinical practice, the kind of care health professionals provide is directed primarily to individual patients, face-to-face. Care is aimed primarily at ameliorating sickness and improving health to the extent possible for specific individuals in care. The health good of the individual patient is the primary aim. Other values besides beneficence—autonomy, privacy, truth-telling, and justice—are likewise applied at the individual level. Public health, by contrast, is primarily directed not toward the health good of individuals but rather the health good of populations and communities through “collective effort, societal responsibility, and attention to social and environmental health determinants” (MacDonald, 2013, p. 399). At a population level, interventions aim to improve health in aggregate, and effectiveness is assessed in statistical terms. To be sure, there is overlap between clinical care and public health. For example, those who provide clinical care at the individual level also educate about prevention and may intervene or advocate on behalf of communities. Likewise, many of those engaged in public health provide care and services directly to individuals. The distinction between clinical care and public health holds for the most part though, and is especially relevant in the context of a pandemic. Following Soskolne and Last (2008), we could say that whereas the ethics of clinical practice is “person-oriented,” the ethics of public health is “population-oriented” (p. 36). These two ethics are intermingled in the health system, but are different in how ethical values and principles are understood and weighed in decision-making. To the extent these ethical orientations are different they “reflect some dissonance in our value system” (p. 36).

440 Concepts and Cases in Nursing Ethics Moreover, within the population-oriented ethics of public health there are competing views about the foundational values of public health. Powers and Faden (2006) distinguish what they call the “standard view” in public health, which is oriented in terms of beneficence and aligned with utilitarianism, from the more contemporary view for which they advocate, that social justice is the foundation of public health (p. 81).1 The main difference between the two is that the social justice account adds to the standard account the “moral impulse” to focus on equity, with particular attention “to the needs of those who are most disadvantaged” (p. 82). In a recent qualitative study of public health policy-makers, Smith, Thompson, and Upshur (2019) found that this difference in perspective mapped on to two programmatic areas within public health organizations in Canada. Public health practitioners working in the area of public health emergency preparedness and response tended to characterize the ethics of public health along the lines of the standard view, invoking utilitarianism and framing considerations of justice as a constraint on their work (p. 398). Those working in the area of chronic disease prevention, by contrast, did not even mention utilitarianism in characterizing public health ethics, and tended to frame justice as part and parcel of their work. The difference between these two perspectives is significant and relevant to our analysis of the COVID19 pandemic since those working in the area of emergency preparedness and response have been most directly engaged in decision-making about the public health response to the pandemic. It is to be expected that they would advise and decide in light of their perspective on the mission of public health and on public health ethics, their views about justice and other values and how value tensions should be resolved, and their vision of what it means to do good as public health practitioners. The study by Smith, Thompson, and Upshur would suggest that they would tend to hold the standard view of public health ethics. Notwithstanding the difference between these two perspectives on public health ethics, we think it is fair to say that beneficence—doing good by producing benefit and minimizing harms—is fundamental to each. However, they differ about what it means to do good: how the moral impulse to do good in 1 For example, Last (1992) asserts that “beneficence is the dominant ethical principle of public health” (p. 1195). This appears to be in stark contrast to Powers and Faden’s (2006) view that social justice is the foundation of public health, which has become the ascendant view in the public health literature. It is noteworthy that a later revision to Last’s 1992 paper is less categorical about beneficence, but does assert that “members of the public health professions like to think that doing good (beneficence) is the main function of public health” (Soskolne and Last, 2008, p. 28).

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matters of public health should be directed and how values in tension should be prioritized and balanced. In any event, both public health perspectives are population-oriented, in contrast with the ethics of clinical practice, which is person-oriented. Beneficent caring means something different in the context of direct encounters with particular patients than it does in relation to populations. Other values, such as autonomy, privacy, truth-telling, and justice, and the tensions among values, play out differently in public health than in clinical practice. To exercise their mandate and responsibility to preserve and protect the health of the population, public health officials engaged in emergency preparedness and response are entrusted with extraordinary authority and powers and additionally can significantly influence how governments use their emergency powers. Only some of these powers are assumed in ordinary times, and authority is exercised with a relatively light touch. However, a pandemic constitutes a public health emergency, and the powers that are exercised and the measures applied to prevent the spread of disease may be sweeping and invasive, and coercively backed by the force of law. Given the magnitude and severity of the COVID-19 pandemic, including the threat of hospitals being overwhelmed by increased demand, public health officials and government acting in the name of public health exercised powers and authority to an extraordinary degree. Coercive public health measures enacted under penalty of law significantly infringed basic rights and freedoms taken for granted in ordinary times. Measures such as stay-at-home orders, closure of businesses, and reduced or cancelled access to a variety of health care services impacted some more so than others, but virtually every Canadian has been affected. Generally speaking, public health ethics, at least under the circumstances of emergency preparedness and response, is more utilitarian than clinical ethics, which by contrast is more deontological or rights based. Ultimately, coercive measures in the name of public health are justified as being necessary for the greater good of society. Of course, society is comprised of individuals, but in the public health context individuals figure as statistics. The evidence and assumptions that inform graphs and charts that prospectively model, and retrospectively record, the spread of disease and its morbidity and mortality are fraught with uncertainty and large margins of error. This data is used to guide and assess decision-making about different public health measures. However, even if we could be 100 per cent certain about the evidence and how

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to interpret it, that by itself would not be enough to make responsible decisions about what policies and actions should follow. Setting goals and deciding on measures to achieve those goals necessarily engages questions about values in addition to, and beyond, whatever questions science and evidence can answer for us. To date, the impacts figuring in various calculations concerning the COVID -19 pandemic have been focused primarily on the health impact of the disease. Less attention has been given to the impact of the various public health interventions themselves—such as the closure of non-essential sectors of the economy and suspension of many health care services—deployed to curtail the spread of disease and mitigate its impact. Whatever direct health impact these interventions have on the disease itself and its spread, they also have indirect health impacts. For example, a thorough accounting of the positive health impact of suspending non-essential health care services (i.e., by preventing spread of the disease) would take into account the indirect, negative impact on health in consequence of this intervention (i.e., on delayed diagnosis and treatment with respect to other diseases and health conditions). The same holds for other public health interventions in the lockdown, which directly impact health in so far as they negatively affect various determinants of health. For example, the closure of non-essential businesses causes unemployment, which is a known determinant of health; isolation from contact with others can cause or exacerbate mental health issues, and so on. The lockdown has had a cascade of social and economic repercussions in the immediate term and will have significant repercussions in the long term (see Nicola et al., 2020, for a comprehensive account of impacts in various sectors of society and the economy). Of course, to note the possible negative effects of various public health interventions aimed at reducing the spread of the disease is not to say that these interventions are, or were, not justified. The point is, rather, that if population health is the goal, and beneficence the primary value, the indirect costs of interventions aimed at achieving this goal should also be factored into calculations and factored in decision-making about easing off on these restrictions as our society begins to relax these measures and open up again, however tentatively. Indeed, doing so makes perfect sense from a comprehensive public health point of view, given the increased recognition in recent years of the impact of social determinants of health. In popular media, the issue of relaxing interventions and opening up is sometimes framed as lives saved versus

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helping the economy. This way of framing the issue is simplistic, and indeed is not consistent with current trends in public health thinking that emphasize social determinants of health. Social and political structures, the environment, and the economy, including how equitably wealth and advantage are distributed within the economy, are major areas of focus in public health ethics (MacDonald, 2013, p. 402). Thoroughly applied, the principle of beneficence— aiming at doing good—incorporates the principle of nonmaleficence—not doing harm, or at least weighing the harm that one does in one’s calculations toward doing good. Calculations that have maximizing the health good of the population as the goal need to take into account the potential negative, indirect side-effects of whatever interventions are justified in the name of the good of population health, at least insofar as they bear on determinants of health. Moreover, health is not the only good that matters, even if in the context of a pandemic it is rightfully the most prominent and weighty one. And indeed beneficence, however broadly construed to include other ways of benefiting and minimizing harm to others, is not the only value that matters or that should be factored into decision-making. The exercise of emergency powers that has occurred during the COVID-19 pandemic is an extraordinary legal and political event that has fundamentally altered the relationship between governments and citizens and the balance of rights and freedoms. Even when other values such as autonomy have less importance relative to the good of saving lives and preventing disease, they still have to be taken into account and weighed in the balance. How this balance should be struck is an ethical issue. The ethical dimension of decision-making in the pandemic is obscured when decision-making is framed in terms of an opposition between science and politics, as if science could answer the ethical questions to be decided. The kernel of truth in this cliché is that policy—for example, what interventions should be made to protect the health of the public, and when and under what conditions to ease them—should be informed by the best scientific advice available. However, science by itself—the best evidence available—cannot tell us what our goal all things considered should be, or how values in tension or conflict should be balanced, or what decisions to make. Nor can scientists speaking strictly from a scientific point of view tell us. Policy decisions are ultimately value decisions, and they engage and need to take account of other values besides public health beneficence. Moreover, to the extent ethical decisions have profound and far-reaching impacts upon the public, they are matters of significant public concern. To

444 Concepts and Cases in Nursing Ethics the extent possible, there should be deliberative public engagement processes for individuals and communities to express their views and values about pandemic ethics during the planning phase of a pandemic, as well as post-pandemic when decisions made will be reviewed, accounted for, and learnt from to better prepare for the future (MacDonald, 2013, p. 417). In the next several sections, we will discuss the COVID-19 pandemic with reference to other key value concepts discussed in the book, in addition to beneficence, that need to be taken into account in pandemic ethics.

3. AUTONOMY What are the implications of COVID-19 for autonomy, and what relative weight or value does it have? As is generally the case for any pandemic, the importance and urgency of saving lives and avoiding in-facility spread of disease (nonmaleficence, one could say) has assumed greater weight relative to autonomy, both in the clinical and public health context. In the chapter on autonomy in this book we distinguished several meanings of the term, including autonomy as free action or liberty. Among the most serious measures justified in the name of public health are orders that limit or restrict freedom of movement and association. Such measures engage fundamental rights and freedoms. There is a paternalistic aspect to public health to the extent that coercive measures are imposed upon us for our own good (MacDonald, 2013, pp. 402– 03). However, in the case of disease spread, coercive measures are designed and justified not just for our own good—to protect us from becoming infected— but also for the good of others—to prevent us, as potential vectors for the spread of disease, from infecting them. In this respect, the justification for coercive public health measures that impede individual liberty is not paternalism—for the good of the person whose liberty is being curtailed—but rather the harm principle, namely, the curtailment of our rights and liberties to the extent that we pose a threat to others, and related to this, pose a threat to the greater good of society. In a sense, we all became “patients” of public health. In the clinical context, free action has been impeded to a lesser, though still significant, extent. For example, restrictions on visitors—the right to visit and to have visitors being a feature of institutional care in ordinary times—have been a burden for patients and their families. Further, the suspension of various

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health care services deemed “non-essential” has meant that many patients were discouraged or prevented from accessing needed care for non-emergent conditions unrelated to the coronavirus, from elective surgeries to diagnostics. At the time of writing this addendum, there is therefore growing awareness of the need to catch up with treating non-COVID-related acute and chronic cases and concern about future increases in population morbidity and mortality related to reduced access to preventative and ameliorative treatment and care. Autonomy in the sense of effective deliberation, important for meaningful informed consent, has also been impacted. Capacity for decision-making is and was significantly diminished for many COVID-19 patients. Moreover, restrictions on visitors has meant less opportunity for patients to consult and deliberate with family members and others. In the section on justice we will discuss the triage guidelines that were issued during the pandemic, which had significant implications as concerns consent, a core dimension of autonomy in health care. One utilitarian-oriented recommendation proposed that under some circumstances scarce resources (ventilators, ICU beds) could not only be withheld but also withdrawn, nonconsensually, from a patient whose prospect of benefit was lesser so that the resources could be redeployed to use for others with better prospects. Fortunately, the circumstances in which triage protocols would have been enacted have thus far been averted in Canada. Nonetheless, the recommendation presents a stark example of the tension or conflict between utilitarian, benefit-maximizing considerations and autonomy in the current pandemic. Supporting autonomy in health care, particularly (though not only) during a pandemic, requires attending to the well-being of patients and their families, who are facing frightening and uncertain illness trajectories. This support can include health promotion, illness prevention, acute or critical care treatment, and bereavement support. Many patients admitted to hospital were critically ill, and the health conditions of many others rapidly deteriorated to a critical condition. The pandemic shone a spotlight on end-of-life care, and brings home the point that support should include the incorporation of principles of end-of-life care when appropriate, including proactive discussions of advance directives with patients and their families (Pesut & Rodney, 2020; Thorne et al., 2020). Such proactive discussions enable patients and their families to have their voices heard regarding what they see as being in the patient’s best interests in end-of-life care. However, due to visiting restrictions, the ability of patients to discuss their end-of-life wishes with their family members, and of substitute

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decision-makers to discuss with other family members, is often hindered. In this regard, it should be noted that discussing advance directives ahead of time with patients and families could mean that more patients, not wishing to have treatment they considered excessive, would exercise their autonomy to say when they would want treatment stopped and palliation started. In the broader context of social policy, autonomy encompasses the participation of citizens in the policy-making process in various ways, since policy issues are ultimately value issues. In ordinary times, policy decisions are informed by public discussion and debate, often in the context of forums set up to enable effective deliberation. To some extent, this occurs in institutional settings, in which stakeholders are invited to provide input in the formation of institutional policies. However, in the context of a pandemic, and given the urgency of the challenges and the speed at which policies have to be decided and implemented, public consultation and deliberation is less feasible than in ordinary times and the policy process is more top down. Those in leadership positions and public health authorities, with input in the deliberative processes from various experts, are entrusted to act for the good of citizens and stakeholders, with less input and broader deliberation from them than in ordinary circumstances. Given the gravity of the policy decisions, the need for trust in authorities and experts is greater, and informed agreement is less important than cooperative compliance with authoritative, and presumably evidence-informed, directives. As we have indicated in the previous section, this means that robust, deliberative, and transparent public engagement processes ought to be fostered prior to and after pandemics, and during pandemics to the extent possible.

4. TRUTH-TELLING, TRUTHFULNESS, AND TRUST Patients and the public rely on health professionals to provide them with information necessary to make informed decisions. There is a structural imbalance in this relationship. Health professionals have privileged access to information that others do not have, and by virtue of their expertise are better able to comprehend complex information and its relevance to a given decision at hand. As non-experts, patients and the public need to be able to trust that those with more expert knowledge will be competent in matters in which they are relied on for their expertise and truthful in their communication.

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One of the challenges of communication in the context of COVID-19 is that so much is unknown or uncertain; this was particularly true earlier on in the pandemic. However, telling the truth and being truthful matters even when the expert does not know the truth or is to some degree uncertain, and it matters perhaps even more from the standpoint of maintaining trust. In situations of significant uncertainty, truthfulness is exhibited, and trust nurtured, simply by openly admitting that one does not know, or qualifying what one says to reflect the fact that one is uncertain, or beyond one’s expertise. One of the main ethical concerns about truth-telling arises when communication is tailored not so much with the goal of informing someone so they can make an informed decision as it is with the goal of persuading them to make the decision that one wants them to make. Short of outright lying— saying something that one knows or believes to be untrue—there are many ways to structure a communication less than truthfully in order to thus persuade: from deliberately delaying the transmission of relevant information, to presenting information in a way that is skewed, misleading, or deceptive, to exaggerating the scope and extent of one’s expertise. Historically, in the clinical context the primary motivation for being less than truthful has been paternalism—for the good of the patient, or at least what one believes to be the patient’s good. As discussed in the autonomy chapter, paternalism has diminished with the rise of respect for autonomy. The situation is different in the public health context, where respect for autonomy is less prominent relative to beneficence, particularly in the context of a public health emergency. Public health communication is less about providing information so the public can make better informed decisions (although it is that too) than it is about persuading people to make what, from a public health perspective, is the right decision. Moreover, in the context of a pandemic the public health concern is with decisions that people make insofar as their decisions adversely affect not just their own good but also the good of others and overall the good of the community. In the context of COVID -19, much public health communication is about issuing directives for the good of the population, with the coercive force of law and without freedom to choose. Compliance with such directives is essential not just for one’s own good, but for the good of others and of the community more generally. Although the threat of legal penalty helps ensure compliance, effective compliance requires that people, or at least many people, are persuaded and not simply coerced, to comply. Because compliance is so

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important in responding to COVID-19, and persuasion is so central to compliance, the aim of being effective in winning compliance can be in tension with truth-telling. Given the magnitude and gravity of the stakes, there can be stronger reasons to be less than truthful in the public health context than in the clinical context. However, as in the clinical context, truthfulness is essential to maintaining trust, and trust is also essential for compliance. Earning and maintaining trust requires openness, transparency, and accountability (MacDonald, 2013, p. 418). This can be challenging during a pandemic because of rapidly changing circumstances and the complexity of decision-making in view of evidence that is continually developing and uncertain. In the course of the epidemic, public health units and governments published health information and daily data on the spread of the disease for the public (for example, Government of Canada, 2020). One ethics issue that arises with respect to the presentation of factual information involves balancing openness in information sharing with the public against privacy, not just at the level of individuals but also of communities and populations. For example, identifying a specific long-term care home as the location of an outbreak can have negative consequences for residents and staff, and cause stigmatization. Publishing demographic information broken down along the lines of ethnicity and race can reinforce or fuel prejudices and discrimination. An important ethical issue related to truth concerns how transparent and explicit authorities are not just in presenting facts but also in communicating their decision-making processes, the reasons for their decisions and directives, and how values in tension have been weighed and traded off. Transparency and explicitness about decision-making are important if authorities are to be accountable. Authoritative decisions and directives, although informed by science and evidence, are ultimately value judgments—for example, about what is an acceptable level of risk, or whether and on what grounds an infringement of autonomy is justified by some other value. Because value judgments are often controversial or subject to disagreement, decision-makers may feel justified in being less than explicit or transparent about the weighing of values for a given decision, or even about the fact that the decision is or involves a value judgment. Being explicit and transparent can open up the decision to unwanted questioning or criticism from others who might weigh the values in tension differently, which can undermine compliance and thus reduce the effectiveness of public health measures.

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In the health care context, both evidence and values inform decision-making but the line between the two can be blurred and there can be confusion in the interface. The public, lacking expertise, quite sensibly defers to expert opinion, at least to the extent a decision by a member of the public turns on that opinion. However, there can be disagreement among experts about evidence and how it should be interpreted. Moreover, even if the evidence is perfectly certain, and experts are in complete agreement, values still figure in the decision to be taken. For example, determining the nature and level of a risk is properly a matter for experts. However, that still leaves open the question of whether the risk is an acceptable risk, or how that risk should be weighed and mitigated relative to other considerations. This is not an expert judgment, or one based solely on expertise, but a value judgment. The legal decision in ONA v. Eatonville/Henley Place (2020) discussed earlier is instructive for illustrating the complexity of some of the issues we have raised above. As we indicated, the main import of this decision is that it assigns to the nurse at point of care the responsibility of assessing what PPE measures are appropriate. One justification for this would be that risk will vary depending on the circumstances, and, accordingly, appropriate safety measures will vary. For example, if a patient is acting aggressively in the particular circumstances, the risk of transmission may be greater. A quite different justification would emphasize that ultimately what is at issue is not just the level of the risk—as determined by the best evidence available and taking into account the circumstances at point of care—but also what level of risk is acceptable. The answer to the acceptability question involves a value judgment and raises further questions: acceptable to whom? Who decides? An argument can be made that to the extent there is a value judgment to be made, it belongs by right to whomever must bear that risk. The legal decision we noted above does not explore the ethical arguments, but, in passing, it does raise important questions about evidence and values in risk assessment that bear on transparency, explicitness, and accountability. Referring to what he called a “battles of the experts” concerning transmission of the virus and the risk-reducing efficacy of different masking protocols, Justice Morgan modestly stated that “the only real conclusion I can draw ... is that the evidence ‘continues to evolve,’” and “the expert community is still trying to come to grips with the complexities of the COVID-19 virus” (para. 73). However, he also remarked suggestively about explanations given for a change in the authoritative guidance regarding masking protocols. Early

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guidance during the pandemic had urged “full precautions ... including ... N95 respirators for clinical assessment, examination, and testing” (para. 81). Later in the pandemic, the guidance changed significantly to the assertion that N95s were needed only for aerosol-generating procedures. Offering reasons for the change, one expert witness explained that the “change was in part associated with evolving evidence that N95 respirators were not needed, and in part because of the on-going shortage of N95 respirators” (para. 67). Justice Morgan noted that this latter, resource-stewardship part of the rationale for the change, had not been offered in the brief that initiated the change. He also noted that the evidence the expert referred to as “part” of the rationale for the change was not in fact new evidence that had emerged since the initial guidance. This prompted him to suppose that the explanation for the change in guidance was not so much a change in evidence (since the evidence had not changed) as it was the need to conserve N95 masks, based on new worries about inadequate supplies. We do not presume to know what factors informed the decision-making of the authorities in this case and how they were weighed. Our point here is to emphasize that transparency and explicitness means that in communicating and justifying a decision, authorities ought to be candid and forthcoming about the reasons, and the weighing of reasons, that in fact moved a decision or directive of consequence to the lives and well-being of those subject to the decision or directive.

5. PRIVACY AND CONFIDENTIALITY In the previous section, we touched briefly on the potential ethical issues or conflicts between openness, on the one hand, and privacy on the other, in relation to the publication of factual data that can be stigmatizing for individuals and communities. Debate about the collection and publication of epidemiological data based on race, gender, and location, has started during the pandemic and will continue. Data collection, surveillance, and monitoring are obviously vital to public health efforts to prevent the spread of the virus and reduce the toll of the disease. Such measures can significantly impact privacy and confidentiality, particularly when they occur without consent. The ethical issue is how to balance these competing values when in conflict. In a pandemic, the public health

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value—maximizing net benefit—becomes weightier in the balance given the graveness and magnitude of the threat. Privacy and confidentiality have relatively less weight but even so need to be balanced in decision-making. The expectation is that such balancing will be justifiable. Several considerations are relevant to balancing and justification. In the first place, the greater the harm to be averted, or good to be achieved, by the measure instated, the more compelling the justification for the use of that measure to the detriment of privacy or confidentiality. In a pandemic situation, in which there is uncertainty about the potential magnitude and probability of the harm, particularly in early days when the evidence used for projecting this is just emerging, it may be reasonable to err on the side of caution and assume worst-case scenarios for the purposes of balancing. Another important consideration is the extent to which the measure is invasive. Some measures—for example, requiring airline passengers to indicate whether they have recently visited specified countries—are less invasive than others, such as monitoring returning travellers to ensure their compliance with public health orders to isolate in their homes for 14 days. The more invasive the measure, the weightier its justification needs to be. Moreover, in keeping with the principle of “least restrictive alternative” that we have discussed in the book, the measure should be no more invasive than it needs to be for the justified purpose. Related to the above, the effectiveness of the measure in achieving its goal needs to factor in the balance. There is considerable evidence about the effectiveness of measures that have been used in past pandemics. However, new and emerging technologies—such as cell phone tracking—present new possibilities for surveillance, monitoring, and information collection and disclosure. Less is known about their effectiveness, and about their privacy and confidentiality impacts. In modern technological societies, it can be challenging for privacy experts, much less citizens, to gauge the extent of information collection and sharing that is occurring, much of which occurs without the knowledge or consent of the “data-subjects.” It is all the more difficult to do this during the COVID-19 pandemic, with the emergency powers that have been put in place and use of technologies to track the spread of the disease and monitor people’s movements and behaviour. One particularly controversial measure under consideration at the time of writing is the use of “immunity passports.” Such a passport would identify and distinguish people depending on whether they had acquired immunity to the

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disease from having already developed antibodies after having been infected or from having been vaccinated (assuming a vaccine becomes available). The idea is that those with immunity passports could be permitted to travel, work, and associate safely without risk of spreading the virus to those identified as lacking immunity, who would therefore be subject to restrictions on travel, work, and association, both for their own safety and to prevent them from spreading to others lacking immunity. There are different ways this could be implemented, but any way would require significant information collection and surveillance. Additionally, dividing people according to immunity status would create inequality between them with respect to privileges and fundamental rights, and could have other adverse consequences, such as negative stigmatization of those without immunity status. To justify the potential detriments and harms of such a system, the expected benefits would have to be very great, and there would have to be a high level of probability that immunity passports would in fact produce this benefit. There is little evidence on the basis of which to assess such a proposal, as is true of many other new measures that have been implemented or proposed during the current pandemic. Concerns about the privacy and confidentiality impact of extraordinary measures for managing the pandemic extend beyond their immediate use in the pandemic to how they could in the future be used more extensively for a variety of other purposes. For example, there are reasons to worry about the “normalization” of mass surveillance post-pandemic. We know from past experience that policies introduced and initially justified as being necessary in response to an emergency or crisis tend to endure and evolve even after the emergency or crisis has passed, and that systems and technologies introduced for limited purposes tend to become adapted for other purposes not initially contemplated.

6. JUSTICE The concepts around which this book and this addendum are organized are interrelated. In some cases, the values and principles associated with these concepts are complementary. In other cases, they are in tension or in conflict. For present purposes, it is useful to introduce the concept of justice into our discussion by contrasting it with beneficence at the level of public or population health. Put in simple terms, whereas beneficence has to do with producing

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and maximizing benefit, justice has to do with how benefit, and burdens are distributed. For example, a public health intervention aimed at doing good by reducing the spread of disease could be very successful in terms of aggregate statistics—reducing the number of people infected, the number of infected people who die, and so on—but could disproportionately or unequally benefit or burden different individuals or groups. This is a standard criticism of utilitarian thinking, which needs to be checked and moderated in view of other values, including social justice, that matter besides maximization of benefits. The values to be considered include justice in how benefits and burdens are distributed among diverse individuals and population groups. Social justice pertains not just to the availability and distribution of health care resources, but to the distribution of resources for health—the social determinants of health—and to public health measures put in place in the pandemic to protect the health of the population. There are “critical equity issues” to consider “because the burden of illness is borne inordinately by ... poor and disadvantaged groups” (MacDonald, 2013, p. 416). At the level of public health as well as at the clinical level, interventions in the name of doing good can reproduce or reinforce existing inequalities, or even unjustified prejudices and discriminatory attitudes. 6.1. Triage and Micro-Level Access to Available Care In the early days of the pandemic, based on reports from Italy of their health system being overwhelmed by COVID-19, various triage guidelines were proposed in Canadian provinces and in other jurisdictions. These guidelines identified principles and processes to prioritize patients for access to health care in scarce supply—in effect guidelines for rationing. At the time, it was anticipated that a shortage of ventilators could soon emerge as an urgent concern. However, these guidelines were intended to apply to any scarce health care resource, including vaccines if and when a safe and effective vaccine became available. In prioritizing patients for access, triage guidelines also prioritize different values in tension or conflict. We will focus our discussion on the policy recommendations issued by the CMA in its “Framework for Ethical Decision-making During the Coronavirus Pandemic” (CMA, April 2020). The CMA recommendations prioritize access, and values in tension, in line with very influential guidelines proposed by Emanuel et al. (2020) in the New England Journal of

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Medicine, which the CMA endorsed. The CMA also notes that “some provinces and indeed individual health care facilities will have their own protocols or frameworks in place,” and that “at the time of its publication, this document was broadly consistent with those protocols that we were given an opportunity to review” (p. 2). We have not reviewed the various provincial protocols, which may vary in the direction they give concerning the points in the CMA document we discuss below. The CMA asserts that “in the context of a pandemic, the value of maximizing benefits is most important,” elaborating that “priority for limited resources should aim both at saving the most lives and at maximizing improvements in individuals’ post-treatment length of life” (p. 2). The policy notes that this prioritization is compatible “with utilitarian ethical perspectives that emphasize population outcomes” (p. 2). As the CMA is aware, applying “utilitarian ethical perspectives” with benefit maximization as the overarching value does not mean that resources will be distributed equitably. Maximizing benefit in terms of aggregate population outcomes tends to give lesser priority to patients who are sickest (who therefore are less likely to survive or benefit from treatment, or whose treatment would consume a larger share of resources for each life saved). This disfavours people with pre-existing conditions, among which are vulnerable populations whose poor health status may in some measure be attributed to prior injustices in how they are impacted by determinants of health, or even to past discriminatory practices. It also disfavours older people, who not only tend to be among the sickest, and less likely to survive, but also to have fewer years of life ahead post-treatment. This is not to say that it is wrong to give priority to utility in the emergency circumstances for which these guidelines have been developed: indeed, there is broad consensus about this among various guidelines, and good arguments to support it. Nonetheless, prioritizing utility grates against other values that matter. It is a credit to the CMA policy document that it is very transparent and explicit about the rationale for how it prioritizes the values in conflict and offers reasoned justifications for its recommendations. The CMA policy rules out consideration of future quality of life as a factor for prioritizing access, citing limited information for making decisions based on this factor, as well the legal and ethical concerns doing so would pose. The policy also does not include considerations of “social worth,” which would be even more contentious. However, the policy does prioritize a specific sub-population for priority access to treatment and scarce resources, namely,

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frontline health care workers. The CMA argues that “these workers should be given priority not because they are somehow more worthy, but because ‘they are essential to pandemic response’” (p. 3). The policy additionally argues that people who participate in COVID-19 research should have priority access as an encouragement to and reward for such participation, though only as a “tiebreaker among patients with similar prognoses” (p. 4). Counter-arguments could of course be given against these recommendations and arguments for them, but here again it is a credit to the document that it recognizes the ethical issues and is explicit about the reasons for its prioritizations. The most contentious recommendation in the policy concerns not just withholding scarce resources from, or not offering scarce resources to, patients whose utilitarian-calculated priority status is lower in order to reassign those resources to someone with a higher priority status, but also withdrawing them: “Because maximizing benefits is paramount in a pandemic ... removing a patient from a ventilator or an ICU bed to provide it to others in need is also justifiable.” The CMA argues that doing so “does not require the patient’s consent ... and that patients should be made aware of the possibility at admission” (p. 4). In raising this as an issue we are not taking a position against this recommendation but rather are highlighting that it is an issue, and moreover one that crystallizes the contrast between clinical ethics and public health ethics we have discussed throughout. To the extent public health is population-oriented and concerns itself with the aggregate public good of a population, or the distribution of a good among different populations, individuals are anonymous and known only abstractly as they figure statistically in utility calculations. Clinical practice, by contrast, concerns itself with the good of the individual patient. The clinician or clinical team is committed somewhat single-mindedly to maximizing the good for the specific individual patient in their care (ultimately it being the patient’s view of what is good for him or her that counts most). Clinical practice is, and should be, “patient-centred.” To be sure, even in ordinary times resources can be strained and clinicians are aware of the need to use resources prudently in allocating them to an individual patient, or distributing available resources among a group of patients in care. Indeed, this is not unusual and occurs in a rather mundane way when a busy nurse allocates or rations his or her time among a group of patients being cared for, typically based on the degree of need. However, the circumstance of removing a potentially life-saving resource from a patient in care and in need of that resource to

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provide it to another patient or someone yet to come under one’s care assessed as being more likely to benefit from it, is quite extraordinary, notwithstanding that, tragically, this may be the right thing to do. In a pandemic triage situation, the benefit maximization perspective of public health ethics comes into play in the clinical setting in quite an extraordinary way and is in tension with the clinical ethics perspective. The CMA policy is especially sensitive to the clinical perspective, as one would expect given that the policy-making body that issued it is largely comprised of clinicians and it is directed primarily to clinicians. A key point in the policy underscores this: “The CMA recognizes that physicians may experience moral distress when making these decisions” (p. 2). The reason why applying the protocols may cause moral distress is that its utility provisions, not out of the ordinary from a public health perspective, are quite extraordinary, and in tension with the ordinary ethics of clinical practice. For example, the CMA policy notes that withdrawing scarce resources from some patients to save others with a better prognosis “will be extremely psychologically traumatic for clinicians—and some clinicians might refuse to do so” (p. 3). Given this “trauma,” the policy advises physicians to “seek peer support and practice self-care.” Additionally, the policy recommends the formation of triage teams “to help separate clinical decision making from resource allocation, thereby lessening the moral burden being placed on the individual physician” (p. 2). The “moral burden” referred to here is that aggregate utility maximization, however necessary and justifiable, grates against two ethical norms that ordinarily apply in clinical practice: a justice norm that patients should be treated equally according to their need, and a beneficence norm, central to the clinical relationship, to do one’s best to meet the needs of one’s individual patient. The moral burden arises from what Gostin et al. (2020) refer to as a “shift” to a “crisis standard of care,” which is in tension with the norms of standard clinical practice (p. 9). The proposed triage committees would lessen the moral burden by separating utility-oriented decision-making from clinical decision-making, thereby protecting clinicians from the burden and trauma associated with deviation from the standard norms of clinical practice. Moreover, patients thus denied would not be abandoned as they would be offered palliative care as available. Arya et al. (2020) propose a script for physicians to use in communicating to patients if they are being denied intensive care, as per triage guidelines, due to resource scarcity, which includes a promise that “no matter what, we will also use medication to treat any discomfort, such as pain or shortness of breath” (E403).

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Fortunately, the need to enact triage protocols has been averted thus far during the pandemic. Nonetheless the extraordinary nature of such protocols— not uncommon in circumstances of war and other emergencies—underscores not just the complexity but also the tragedy of ethical decision-making in the extraordinary circumstances of a pandemic. Some tragic choices are unavoidable, but tragic-choice scenarios can sometimes be avoided by prior action that averts or reduces the need for such choices. Reflecting on our COVID-19 experience is a good occasion for renewed reflection and action concerning advance directives. Discussing advance directives ahead of time with patients and families could mean that more patients, not wishing to have treatment they considered excessive, would exercise their autonomy to say when they would want treatment stopped and palliation started. It is clear that these sorts of decisions are not reducible to “experts” but engage matters generally of concern to the public. Gostin et al. (2020) write: “To the extent possible, decision-making about the allocation of scarce resources in response to COVID-19 should include the public and be made in advance, and it must be transparent and based on clearly explained rationales that are grounded in scientific evidence related to transmission of the virus, morbidity and mortality, and other relevant considerations” (p. 9). 6.2. Social Justice and the Distribution of Benefits and Burdens The triage scenario commands headlines and has been much discussed in the ethics literature. Part of its attraction is the drama of rationing in life and death decision-making. Less attention, and fewer headlines, has been given to issues of justice at the level of macro-allocation. For example, at the macro-level the issue is not about access to available services in scarce supply but rather about the supply in the first place. This in turn raises issues about the obligations of health institutions and governments to ensure a reliable supply of needed resources so that conditions of scarcity do not arise. Justice at the macro-level also has to do with how benefits and burdens— social goods and social harms—are distributed more broadly, at the level of society, across various population groups. This includes how the benefits and burdens of various public health measures introduced during the lockdown were distributed. Social justice addresses inequities in social conditions that bear on health and well-being (Pauly, 2013). It figures prominently not only in contemporary public health ethics but also in various health professions.

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In nursing, which historically has been closely aligned with public health, it is recognized as a core value in various foundational documents. However, as Valderama-Wallace (2017) notes in her study of the American Nurses Association Code of Ethics, there are “ongoing inconsistencies” in how it is conceptualized (p. 367). In a study of nurse educators, Valderama‐Wallace and Apesoa‐Varano (2019) found that “the inconsistency in conceptualizations of social justice in nursing literature are also inconsistent among nurse educators” (p. 741). There have been at least two conceptual analyses of social justice in nursing, which identify a variety of different features of the concept (Buettner‐ Schmidt & Lobo, 2012; Matwick & Woodgate, 2017). These studies indicate that the concept of social justice is fluid and evolving, but that nonetheless there is something of a core meaning that includes emphasis on the determinants of health broadly construed, and advocacy toward achieving equity for those who are most vulnerable or disadvantaged under present social conditions. COVID-19 has been called “The Great Revealer” in that it has brought into sharp relief significant social inequalities that existed prior to its arrival. It has done so in two main ways. In the first place, the risk of becoming infected, and of becoming morbidly ill if infected, is greater for some people than others. People who live or work in environments conducive to spread—under conditions of crowding or poor ventilation, for example—are more at risk of becoming infected (and of spreading infection to others). Additionally, those with certain pre-existing health conditions tend to be more adversely affected by the disease—to become sicker, and more likely to die. These risks factors exist disproportionately among different population groups. Older people living in long-term care facilities were at greater risk both of contracting the disease and of becoming very ill or dying from it. Caregivers who worked in these homes had a significantly higher rate of infection. Considerations of justice would have us reflect back on the justice of the social conditions—living and working conditions—in consequence of which these populations were more at risk, particularly as both of these population groups tend to fare less well in the general distribution of benefits and burdens in society. A case could be made that prior discrimination against the elderly and against the low-wage workers in those facilities contributed to their being more at risk. The same could be said of other population groups, in addition to the elderly, with pre-existing health conditions putting them at greater risk of becoming very sick or dying, to the extent those pre-existing health conditions

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are in consequence of injustice in social conditions or unequal situatedness with respect to determinants of health associated with the at-risk health conditions (e.g., poverty, malnutrition, diabetes). Among other things, the pandemic starkly revealed and made apparent that there were two categories of health care workers, quite unequally situated in employment conditions during the pandemic, but also prior to it. One group was employed by hospitals or agencies that provided employment security, benefits, adequate PPE, and followed infection-control guidelines. The second group employed worked in long-term care facilities under very different (and less favourable) employment conditions. For example, personal support workers needed to work at part-time jobs in several locations, making them potential spreaders of the virus among their different places of employment and potentially more susceptible to infection. These homes had communal living, were slow to implement infection-control precautions, and lacked PPE. These working conditions partially explain why the majority of deaths from COVID-19 have thus far been in nursing homes.  If we turn to the burdens of the measures taken against the disease, significant inequalities in impact likewise come to light. Writing in the American context, Brennan et al. (2020) note that “initial data surrounding the enforcement of COVID-19 orders have shown that these orders have been disproportionately enforced against minority citizens” (p. 34). Researchers Buajitti, Chiodo, and Rosella (2020) have collected data from Ontario showing “the neighbourhood-level distribution of COVID-19 cases according to socioeconomic and demographic characteristics,” which reveal that cases and deaths are concentrated in areas with high material deprivation (lower socioeconomic status) and high ethnic concentration. Such inequality in the distribution of cases and death is not by itself evidence of injustice, but it is suggestive. Inequities in housing resources are also significant. Quarantine is much less of a burden for those with spacious homes and who can enjoy sunshine, fresh air, and recreation in the comfort of their yards, than for those living in small apartments with very limited options to recreate or play. Furthermore, quarantine is less of a burden for those who can work at home and continue to earn money than those who can’t, many of whom have lost their livelihood, perhaps permanently. In Canada, the short-term negative economic effects of locking down vulnerable populations have thus far been mitigated to a considerable extent by government programs that distributed funds. However, the lockdown will

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have long-term effects, including on the economy. We know that economic conditions are a determinant of health, that enduring negative impacts on the economy can have significant negative health impacts, and that those impacts may be greater for members of already vulnerable population groups.

7. INTEGRITY Integrity pertains to each of us as autonomous moral agents who are responsible and accountable for our actions (and inaction) in and across the various dimensions of our life and our relationships and commitments. There can be value tensions or conflict within or among these various dimensions. Conscientious reflection about who we are, what we value, and how we prioritize and integrate our values and express them in our private life, working life, and relationships with others is an essential aspect of integrity. Such reflection is ongoing in the face of new experiences and relationships with others, in view of which we may be changed or change ourselves. The pandemic has been an extraordinary event in many ways. It has dramatically disrupted the lives of those of us living through it. Some of us— those who have lost loved ones, and those working at the bedside—have been affected more profoundly than others. But daily life changed for everyone. Various parts of our lives and the relationship of those parts have been disrupted—for example, having to maintain some distance from loved ones, and the balance of work life and private life. The pandemic has brought to the fore or into relief things about ourselves and about our society that we may not have thought much about, or may now think about differently. In its magnitude, it has exceeded our capacity to fathom or make sense of what is going on, including what is going on with ourselves to the extent that emotions such as fear and anxiety for ourselves or our loved ones (but also compassion and a feeling of solidarity with others) have been aroused. It has shaken things up, as it were, and, in its disruptiveness, has also created or unearthed various tensions or conflicts at individual, institutional, and societal levels that pose challenges and opportunities for reintegration. It occasions reflection on who we are, as individuals and as a society, and what we value, and presents almost limitless opportunity for reflection and potential re-formation at individual, institutional, and societal levels.

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For frontline health care workers at the hospital bedside or in the community, the pandemic has been especially stressful and even traumatic. As discussed earlier, caring for others when one is oneself at risk, or when risk and the effectiveness of preventative measures is uncertain, raises special challenges. In extreme situations, conscientious reflection may be needed to decide whether one will refuse to accept the risk, with the unwanted consequences of increasing the burden colleagues must bear or of failing to fully deliver on an implicit professional promise to patients in need. Given the unpredictable nature of the disease and the limited efficacy of available treatments, all too often health care interventions fall short of their goal. Many of those who are treated die, particularly older adults with chronic health conditions. Many who do eventually recover from the disease, including young people and even some children, are left in its wake with serious ongoing health issues it has caused or exacerbated. The failure to achieve good outcomes confronts caregivers with their powerlessness in the face of the disease and can be demoralizing, adding to other stresses of the practice environment. Additionally, the many health professionals whose practices were suspended or curtailed during the pandemic have had to live in the knowledge that the health of patients who otherwise could have benefitted from their care may worsen. The inability to be effective doing what one, as a professional, aims to do can be experienced as a kind of moral distress, in a broad sense of being unable to realize or give effect to a value to which one is deeply committed. Moral distress in this sense can occur even if this inability is not in consequence of any moral failing on one’s part, or of institutional constraint preventing one from doing what one believes is the right thing to do, and even if one has done one’s best but one’s best has not been good enough. Broadly construed, the concept of moral distress can also be applied to the distress of choosing when torn between competing values, such that whatever choice one makes will negate one or more other values. Triage scenarios present us with such tragic choices and give rise to moral distress. Triage guidelines were developed in the understanding that they would only be enacted in the most extreme circumstances of scarcity, which fortunately have not materialized in Canada. Nonetheless, triage guidelines are instructive about moral distress and its relationship to clinical ethics and professional promise. The ethics of clinical practice includes an implicit professional promise to do one’s best for the patient in one’s care. Withdrawing treatment from a

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patient so that the resource could be directed to other patients with better prospects of benefit, which the CMA triage guidelines would allow under certain extreme conditions, would run counter to this promise. Even if one believed that this were justified and as it should be, a position for which strong arguments can and have been made, the value conflict and tension with one’s professional promise to the patient would nonetheless be a serious source of moral distress. As we noted earlier, the CMA recommendations provided for reducing moral distress and burden by separating the clinical decision, and decision-maker, from the utility-oriented decision aimed at maximizing benefit. Additionally, the guidelines recognized that some physicians could decline to follow the contentious guideline: “Undoubtedly, withdrawing ventilators or ICU support from patients who arrived earlier to save those with better prognosis will be extremely psychologically traumatic for clinicians—and some clinicians might refuse to do so” (p. 3). Although the specific circumstance that would have caused such circumstances may not arise, there are other stressors and sources of moral distress for health professionals at the bedside and in other contexts that may be no less traumatic. As we have argued earlier in this addendum, such challenges for health care providers may have lasting residual effects. The pandemic has revealed that there is much to be done in planning and providing proactive supports for all health care providers (Pesut & Rodney, 2020; Storch et al., 2020).

8. CONCLUSION: THE POST-PANDEMIC FUTURE The trajectory and duration of the pandemic remains uncertain as this book goes to press, but there is reason to hope that by the time you are reading this addendum the pandemic, if not behind us, will at least be fading into the past. However, the pandemic will have effects beyond its duration, including indirect effects in consequence of the emergency public health measures put in place in the lockdown and the myriad ways in which pre-pandemic social life and institutions have been disrupted. Past plagues have changed history, and there is every reason to think that the post-pandemic society that emerges will be different in dramatic ways from pre-pandemic society. Some changes can be predicted with a reasonable degree of certainty. To pick an obvious example, during the pandemic, and driven by necessity, there has been more widespread

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use of, and innovations in, technologies for virtual communication—in health care, in education, and in businesses. These trends, having received impetus from the pandemic, are likely to continue and accelerate post-pandemic, for good or ill, or a mixture of both. The pandemic will also have lasting economic and social consequences, impacting the social determinants of health. There are concerns that inequalities that existed pre-pandemic, and that were exposed and exacerbated during the pandemic, may increase. There are concerns about enduring consequences for how we are governed post-pandemic, and that emergency measures put in place under the extraordinary circumstances of the pandemic—such as increased surveillance and restrictions on freedom—may become more ordinary and normalized post-pandemic. There are concerns that the altered balance of values that occurred during the pandemic, with utility for the greater good ascending in relationship to other values and human rights, may become more permanent. There are also reasons to be hopeful about the post-pandemic future. There have been many positive signs during the pandemic—acts of courage and compassion and solidarity, for example—that bode well for the post-pandemic future. The pandemic has exposed both strengths and weaknesses in our institutions and our society, locally and globally. Whether or to what extent concerns about the post-pandemic future materialize will depend on how we seize the pandemic as an opportunity to reflect on what it has revealed about ourselves and our society and an opportunity to bring fundamental value questions to the fore for private and public discussion, debate, and deliberation. There is much that has been learned, and much yet to be learned. During the pandemic, and particularly in its early days, there has been very little public discussion about how our government and public health officials responded to COVID-19 or the value issues the pandemic response engaged. In Canada, as in many other countries, things moved very rapidly in March 2020 from a reassuring assessment from authorities that COVID-19 posed a low risk and life could go on as usual, to alarm about the risks, to the enactment of extraordinary emergency measures. In rapidly evolving emergency situations, there is less time for public discussion and deliberation. Moreover, given the gravity and urgency of the circumstances and the fear that gripped the country, one could say that ordinary norms of scrutiny and debate were quite willingly and perhaps appropriately “suspended” in deference to the authorities. In the

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circumstances, the authorities enjoyed considerable latitude in the trust that its extraordinary measures were appropriate, particularly as those measures were believed to be justified in the name of the public good and informed by expertise and the best evidence available. As we emerge out of a state of emergency, and Canadian society begins to open up again, there is time and opportunity for reflection, public discussion, and debate that looks backward to what has happened while also looking toward the post-pandemic future. Looking backward means scrutinizing and assessing our societal response to the COVID -19 pandemic at all levels as concerns what went right and what went wrong. As the emergency passes, the need for trust and deference lessens and the reasonable expectation of accountability increases in importance. In addition, and relevant to ethics, there are important epistemological (how we know and what we know) questions to consider as we address this pandemic and prepare ourselves to respond to similar future challenges. The state of knowledge about the nature of the  COVID-19 virus and its effects on diverse populations has been a moving target, which has required Canadians to frequently question assumptions (e.g., regarding modes of transmission, which population groups are most at risk, and what kind of support health care providers need). Moving forward will require open-mindedness and healthy skepticism about assumptions we might be inclined to make. This means learning to ask the right kinds of questions and supporting each other in diverse communities to explore and evaluate strategies at individual, organizational, provincial, and national levels.  Accountability includes scrutiny of justification for action (and inaction). This applies to actions taken (and not taken) pre-pandemic, in preparing for such an emergency and in considering what had been learned from previous outbreaks about known deficiencies and vulnerabilities in parts of the health system, such as long-term care. The following passage from the report of the SARS Commission (2006) in its accounting of the 2003 SARS outbreak is striking given events since then: “Although no one did foresee and perhaps no one could foresee the unique convergence of factors that made SARS a perfect storm,” based on what was learned “there is no longer any excuse for governments and hospitals to be caught off guard and no longer any excuse for health workers not to have available the maximum level of protection through appropriate equipment and training” (p. 14).

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Accountability also applies to action (and inaction) in the months immediately leading up to the emergency situation, and of course to actions taken (or not taken) during the emergency itself and as the pandemic resolves. Leading up to and in the course of the emergency, authorities appealed to two main and interrelated justifications in support of their decision-making: that decision-making was guided by the overarching concern for the public good and that decision-making was based on the best evidence available. These claims warrant careful scrutiny and we will briefly consider each of these in turn. The public good argument—the need to protect citizens from an urgent and grave threat to their health and indeed to their lives—is a powerfully compelling argument, and precisely because it is so compelling it warrants careful scrutiny. Among the possible measures that could be taken, which ones would in fact best serve the compelling purpose of protecting the public? It is evident, and from quite early on it was evident, that such measures as were implemented were not very successful in protecting the health and lives of residents living in long-term care, as well as many of their caregivers. Moreover, the public good engages a spectrum of values in addition to protecting the health of the public—autonomy, privacy and confidentiality, and justice—that need to be accounted for in justification of emergency measures. Was the balancing of these values in decision-making about measures put in place justified under the circumstances, or justified for some measures but not others, or in some places but not others? To the extent that rights and liberties were justifiably infringed, were the measures used proportionate and the least restrictive and invasive necessary? In posing these questions, we are not presuming to know the answers, but are rather making the point that accountability requires that the questions be asked and answers carefully scrutinized in a way that has not been possible, and perhaps was not appropriate, during the emergency. The second argument relevant to accountability and justification is the argument about the authority of experts. During the pandemic, decision-making was frequently justified by “appeal to the experts,” that is, that decision-making was said to be based on the best evidence available, and, moreover, that the evidence upon which decisions were based was incomplete, uncertain, and developing. One line of questioning concerns not just the extent to which decisions were indeed based on expert advice and the best evidence available, but further whether the evidence in support of extraordinary measures was

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sufficient to justify the measures, particularly insofar as important values and fundamental rights and liberties were impinged (Brennan et al., 2020). The appeal to experts raises a second line of questioning concerning the role of values in decision-making and is more central to ethics. In these reflections, we have sought to bring to the fore ethical questions and issues raised by the pandemic. If, as we believe, these questions and issues did not receive due attention prior to and during the emergency, one reason for this is because they were in some measure occluded by appeals to expertise, as if the decisions to be taken depended upon evidence alone. However, how the decisions engaged values, particularly to the extent values were in tension or conflict, must also be taken into account. In its comprehensive report on the 2003 SARS outbreak, the SARS Commission (2006) wrote: Hospitals closed; cancer treatments and heart surgery were postponed. Patients were denied visitors. The sick and the dying suffered without the consolation of their families. The dead were disposed of quickly and in the absence of family and friends. The wider impact of SARS through cancelled heart surgery and delayed cancer treatments will never be known. And SARS was also an economic disaster for the country, the province and the GTA in particular. Things happened that should never have happened: deaths, unspeakable loss, untold suffering. Where should we direct our outrage, our anger? (p. 2)

We know that the impact of COVID-19 has been significantly greater than SARS, and the long and short-term consequences of the disease and of the measures put in place to curtail its spread will be more far-reaching. Pending a thorough review such as was conducted by the SARS Commission, which was not completed until three years after that outbreak, we cannot know whether or to what extent “things have happened” (or should not have happened) that “should never have happened,” and whether or to what extent “outrage” or “anger” would be appropriate emotional responses. Today, there is already outrage and anger about what happened and did not happen in long-term care facilities. Nurses and others had advocated for change well before the pandemic, and there was evidence quite early on in the outbreak that residents there were especially vulnerable and susceptible.

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In looking backward at the pandemic with an eye to accountability and justification, it will be important to evaluate what went well and what did not go well in terms of ethics as well as pragmatics. This looking back is essential to looking forward to address deficiencies and support strengths that have been identified and to promote positive changes to systems and institutions. The pandemic has opened up important ethical questions. In some considerable measure the post-pandemic future will depend on how we answer those questions today and in the years to come in public discussion, deliberation, and debate.

REFERENCES Alberta Health Services COVID-19 Scientific Advisory Group. (2020, May 4). COVID19 scientific advisory group rapid response report. https://www.albertahealthservices. ca/assets/info/ppih/if-ppih-covid-19-hcw-risk-rapid-review.pdf Arya, A., Buchman, S., Gagnon, B., & Downar J. (2020). Pandemic palliative care: Beyond ventilators and saving lives. Canadian Medical Association Journal, 192, E400–E404. https://www.cmaj.ca/content/cmaj/192/15/E400.full.pdf Brean, J. (2020, May 16). Four out of five COVID-19 deaths have been linked to senior’s homes. That says a lot about how Canada regards its elders. National Post. https:// nationalpost.com/news/four-out-of-five-covid-19-deaths-have-been-linked-toseniors-homes-that-says-a-lot-about-how-canada-regards-its-elders Brennan, J., Surprenant, C., & Winsberg, E. (2020, May 20). How government leaders violated their epistemic duties during the SARS-CoV-2 crisis. Kennedy Institute Journal of Ethics. https://ssrn.com/abstract=3605981 Buajitti, E., Chiodi, S., & Rosella, L. (n.d.) #Howsmyflattening. Retrieved June 14, 2020 from https://howsmyflattening.ca/#/analysis (see page “Socioeconomic analysis”). Buettner‐Schmidt, K., & Lobo, M.L. (2012). Social justice: A concept analysis. Journal of Advanced Nursing, 68(4), 948–58. Canadian Medical Association. (2020, April). Framework for ethical decision making during the coronavirus pandemic. Retrieved June 14, 2020 from https://policybase. cma.ca/en/permalink/policy14133 Canadian Nurses Association (CNA). (2008). Ethics in practice for registered nurses: Nurses’ ethical considerations in a pandemic or other emergency. https://cna-aiic. ca/~/media/cna/page-content/pdf-en/ethics_in_practice_august_2008_e.pdf

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Canadian Nurses Association (CNA ). (2017). Code of ethics for registered nurses. https://www.cna-aiic.ca/-/media/cna/page-content/pdf-en/code-of-ethics-2017edition-secure-interactive.pdf Commission to Investigate the Introduction and Spread of Severe Acute Respiratory Syndrome (SARS Commission), & Campbell, A. (2006, December). Spring of fear: The SARS Commission final report. Vol 1. Spring of fear: Executive summary. Retrieved June 14, 2020 from http://www.archives.gov.on.ca/en/e_records/sars/report/ index.html Emanuel, E.J., Persad, G., Upshur, R., Thome, B., Parker, M., Glickman, A., Zhang, C., Boyle, C., Smith, M., & Phillips, J.P. (2020, May 21). Fair allocation of scarce medical resources in the time of COVID-19. New England Journal of Medicine, 382, 2049–55. https://www.nejm.org/doi/full/10.1056/NEJMsb2005114 Gostin, L.O., Friedman, E.A., & Wetter, S.A. (2020, March 26). Responding to COVID-19: How to navigate a public health emergency legally and ethically. The Hastings Center Report, 50(2), 8–12. https://doi.org/10.1002/hast.1090 Government of Canada. (2020). Coronavirus disease (COVID -19): Outbreak update. Retrieved June 2, 2020 from https://www.canada.ca/en/public-health/services/ diseases/coronavirus-disease-covid-19.html Khanlou, N., & Orazietti, B.E., (2020). Nurses respond to COVID -19 pandemic: Mental health support for frontline nurses. Journal of Concurrent Disorders 2(1), 74–76. https://concurrentdisorders.ca/2020/04/11/nurses-respond-to-covid19pandemic-mental-health-support-for-frontline-nurses/ Last, J.M. (1992). Ethics and public health policy. In J.M. Last, & R.B. Wallace (Eds.), Public health & preventive medicine (13th ed., pp. 1187–96). Appleton & Lange. MacDonald, M. (2013). Ethics of public health. In J. Storch, P. Rodney, & R. Starzomski (Eds.), Toward a moral horizon: Nursing ethics for leadership and practice (2nd ed., pp. 398–429). Pearson-Prentice Hall. Matwick, A.L., & Woodgate, R.L. (2017). Social justice: A concept analysis. Public Health Nursing, 34(2), 176–84. Maxwell, S. (2020, May 26). Front-line health workers are under enormous stress, and we need to develop mental health support plans now. CBC News Opinion. https://www.cbc.ca/news/opinion/opinion-front-line-workers-mental-healthcoronavirus-1.5556365 Nicola, M., Alsafi, Z., Sohrabi, C., Kerwan, A., Al-Jabir, A., Iosifidis, C., Agha, M., & Agha, R. (2020, June). The socio-economic implications of the coronavirus pandemic (COVID-19): A review. International Journal of Surgery, 78, 185–93. Advance online publication. https://doi.org/10.1016/j.ijsu.2020.04.018

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Ontario Nurses Association (ONA ) v. Eatonville/Henley Place, ONSC 2467 (2020). https://www.cavalluzzo.com/docs/default-source/default-document-library/ ona-v-eatonville-and-henley--judgment.pdf?sfvrsn=b8356d5_0 Pandemic Influenza Working Group. (2005). Stand on guard for thee: Ethical considerations in preparedness planning for pandemic influenza. University of Toronto Joint Centre for Bioethics. http://www.jcb.utoronto.ca/people/documents/upshur_ stand_guard.pdf Pauly, B.M. (2013). Challenging health inequities: Enacting social justice in nursing practice. In J. Storch, P. Rodney, & R. Starzomski (Eds.), Toward a moral horizon: Nursing ethics for leadership and practice (2nd ed., pp. 430–47). Pearson-Prentice Hall. Pesut, B., & Rodney, P. (2020, April 22). Responding to COVID-19 challenges: Supporting nursing strengths [Webinar]. Nurses and Nurse Practitioners of British Columbia. https://portal.nnpbc.com/covid-resources/ Powers, M., & Faden, R. (2006). Social justice: The moral foundations of public health and health policy. Oxford University Press. Smith, M.J., Thompson, A., & Upshur, R.E. (2019). Public health as social justice? A qualitative study of public health policy-makers’ perspectives.  Social Justice Research, 32(3), 384–402. Soskolne, C.L, & Last, J.M. (2008). Ethics and public health policy. In R.B. Wallace (Ed.), Public health & preventive medicine (15th ed., pp. 27–38). McGraw-Hill Medical. Storch, J.L., Starzomski, R., & Rodney, P. (2020, May 21). The ethical duty of health care workers to provide care during the COVID-19 pandemic. [Contributions to an unpublished working draft]. British Columbia Ministry of Health. Thorne, S., Rodney, P., & Pesut, B. (2020, March/April). COVID -19—Dealing with the complexities of ethical decision making & moral distress. Nurses and Nurse Practitioners of British Columbia: Issues Summary. Retrieved June 14, 2020 from https://portal.nnpbc.com/pdfs/media/updates/2020/COVID /IS -COVID 19Ethical-Decision-Making-Moral-Distress.pdf Valderama‐Wallace, C.P. (2017). Critical discourse analysis of social justice in nursing’s foundational documents. Public Health Nursing, 34(4), 363–69. Valderama‐Wallace, C.P., & Apesoa‐Varano, E.C. (2019). “Social justice is a dream”: Tensions and contradictions in nursing education. Public Health Nursing, 36(5), 735–43. World Health Organization (WHO). (2020, June 2). Coronavirus disease (COVID-19) situation report—134. https://www.who.int/emergencies/diseases/novel-coronavirus2019/situation-reports/

INDEX Aboriginal healing practices, 94 Aboriginal health access centres, 94 abortion, 42, 227, 335, 350, 356 abuse in the workplace, 73–75 patient mistreatment, 366–68 workplace violence, 334, 339 access to care vs. quality of care (case study), 298–303 accountability, 22, 160, 216, 218, 328, 341, 449 for choices, 38 following COVID-19 pandemic, 464–65 in health records systems, 238 for resource allocation decisions, 285 act utilitarianism, 50 active euthanasia, 26, 382, 384, 394 addiction, 105, 160, 249, 252, 291 advance directives, 133, 135, 163, 376–77, 399, 408, 457 importance during pandemics, 445–46 adverse events, 217, 219, 229 advocacy, 75, 296, 348. See also under nurses advocating on behalf of vulnerable and voiceless patients (case study), 161–66 for better qualified staff in nursing homes, 59

to influence public policy, 82 “Advocating for Clients,” 137 AIDS. See HIV/AIDS alcohol use, 291. See also addiction allocation of clinical placements and support for clinical education (case study), 303–08 altruism, 434 Alzheimer’s disease, 130, 203, 405 American Nurses Association Code of Ethics, 458 applied and professional ethics, 23 Arenburg, Jeffrey, 153–54 Aristotle, Nicomachean Ethics, 51 assessment (in ethical analysis), 26–29 assessment of capacity. See capacity assessment assignment refusal, 350. See also conscience nurses right to withdraw from epidemics or emergency, 72 patient assignment refusal, 339 assistance in dying, 26. See also MAID voluntary assisted death, 385 assisted death, 379 assisted suicide, 380–81, 390, 393 autonomy, 11, 13, 16, 21, 90, 117–79, 285, 382, 439. See also patient autonomy argument against the use of restraints, 148

471

472

Concepts and Cases in Nursing Ethics

as authenticity, 118, 120–21, 124 and beneficence, 89, 141, 143–44 in clinical practice vs. public health, 441 and consent, 125–34, 139 (See also consent) as effective deliberation, 118, 120 as free action, 118–19, 123 holistic way of looking at, 156 implications of COVID-19, 444–46 and independent thinking, 54 institutional environments that limit, 157–58 Jehovah’s Witnesses’ right to, 131 Kant’s concept of, 47 limitations, 140, 144–46, 157 mental health patients, 149–51, 176 moral autonomy, 328–29 as moral reflection, 118, 121–22, 124 in Nancy B. and Sue Rodriguez cases, 388 pertaining to ability or capability, 118 as reason to inform of terminal illness, 207, 209 relational autonomy, 53, 58 of research subjects, 16 respect for, 118, 123, 141–42, 189 right to end life, 390 value attached to, 160 and withdrawal of life support, 171 bad news diagnosis, 195–97, 206, 209 nurses’ role in communicating, 195–96 beneficence, 11, 13, 49, 56, 69–83, 123, 159–60, 390–91 argument against disclosure, 209 and autonomy, 89, 141, 143–44

caring, 70, 81–82, 441 during COVID-19, 433–44 determining what is beneficial, 75–79 devalued, 187 as dominant value in health care, 52, 142 duty and, 72–73 good intentions and, 75–76 good outcomes and, 75–76 nonmaleficence, 49 research and experimentation, 16 self-concern and, 71–75 Bentley v. Maplewood Seniors Care Society, 133, 405 Bergum, Vangie, 60–62, 159 Best Practice Guidelines (RNAO), 205, 208 Bill C-14, 283, 378, 395–98. See also MAID bioethics, 15–16, 52–53, 57, 122 brain injury, 118 breaches of confidentiality, 228–30, 242, 262–63, 336 British Columbia Civil Liberties Association, 392 British Columbia College of Nursing Professionals (BCCNP), 129, 135–36 consent document, 137, 139–40 British Columbia Court of Appeal, 393 British Columbia First Nations Health Authority, 94 British Columbia Health Care (Consent) and Care Facility (Admission) Act, 128, 130 British Columbia Mental Health Act, 152 British Columbia Supreme Court, 392 Brown, Bryson, 391 Buckman, Robert, 195

index

Canada

COVID-19 infections, 430 COVID-19 preparedness, 432

Canadian Forces personnel, 438 report on long term care homes, 439 Canadian Guideline for Opioids for Chronic Non-Cancer Pain, 105 Canadian health care system, 399, 401 egalitarian foundation, 278 Health Canada, 104 health inequities, 285 justice in, 145 privatization in, 278 publicly funded, 145 sustainability, 274 Canadian Institute for Health Information (CIHI), 217 Canadian Institutes of Health Research (CIHR), 104 Canadian Journal of Nursing Research, 377 Canadian Nurses Association (CNA), 189, 241, 329, 340, 377, 431 Code of Ethics for Registered Nurses, 59, 74, 81, 124, 138, 140, 149, 204, 291, 296, 335, 339, 352, 354 Emergency Preparedness and Response, 314 on social media use, 244 Canadian Patient Safety Institute (CPSI), 217–19 Canadian Society of Palliative Care Physicians (CSPCP), 418 capability, 118 capacity, 80, 99, 124–25, 129–32, 404, 410. See also consent ability to deliberate effectively, 126

473

acting out of character, 120–21 cognitive competence, 193 COVID-19 patients, 445 individually assessed, 130 involuntary patients, 152–53 for the mentally ill, 177–78 variable, 130, 152 capacity assessment, 130, 134 cardio-pulmonary resuscitation, 376 caring, 70–72 central element of nursing, 55–56 circle of care model, 200, 230–31 ethic of care, 17, 53–56 knowledge, skill, and abilities, 76 Carter, Kay, 381, 391, 393 Carter v. Canada, 283, 385–86, 390 Carter v. Canada (2013), 393 Carter v. Canada (2015), 391–95 case-based learning, 29–30 case conferences and ethics consultations, 215 categorical imperative, 47–48 cell phone tracking, 451 chaplaincy services, 349 Charter of Rights and Freedoms, 119, 143, 152, 155, 387, 394, 437 chemical restraints, 147–48 Child and Family Services Act, 88 child protection agency, 88–89 Children’s Aid Society (CAS), 110, 260, 264 child’s best interests, 88, 91–93, 96 choices, 121–22, 139–40. See also consent limited by the health care system, 145–47 circle of care model, 200, 230–31 clinical education, 303–07

474

Concepts and Cases in Nursing Ethics

clinical practice, 461 deontological or rights based, 441 individual patients, 439, 455 clinical practice ethics, 439–44, 455 CMA triage guidelines, 462 Code of Ethics for Registered Nurses (CNA), 59, 74, 81, 124, 138, 149, 204, 291, 296, 335, 339–40, 348 on consent, 140 on duty during extraordinary circumstances, 352–54 egalitarian in sense of fairness, 282 codes of ethics, 14–15, 22–24, 73, 124, 239, 329, 334. See also names of specific codes respect for authority, 123 collective agreements, 437 College of Nurses of Ontario (CNO), 189, 199 guidelines on consent, 135, 137, 139–40 practice standard on ethics, 146 practice standard on privacy and confidentiality, 230, 233 College of Physicians and Surgeons of Ontario (CPSO), 174–75 comfort measures, 376, 399. See also palliative care community-based care, 342. See also nurses working in the community community care access centres, 299 community health care systems, 300 community in decision-making, 294 community treatment orders (CTOs), 134, 153–55 compassion fatigue, 438 competence. See capacity

conceptual analysis, 25–26 confidentiality, 13, 21, 225–46. See also privacy breaches (See breaches of confidentiality) challenges in circle of care model, 231 in the digital age, 235–39 duty of, 227–30, 336 exceptions to the rule of, 233–35 patient authorization to share confidential information, 230 suspected domestic or family violence, 158 confidentiality in an occupational health unit (case study), 246–53 confidentiality violations. See breaches of confidentiality conflict, 348–49 about patient care among professional providers, 340–41 on assisting with abortion, 335, 350, 356 health care provider/patient, 131 nurse-physician conflict, 199, 340 patient values incompatible with nurse’s, 83, 99 where nurses conflicted about what should be disclosed, 200 conflict between moral duties, 49 conscience, questions of conscience, 335, 338 conscientious objections to MAID, 400 conscientious objections to MAID (case study), 356–64 conscientious reflection about exposure to risk in context of a pandemic (case study), 350–56

index

consent, 119, 124–25 distinction between express and implied, 128 evidence of, 404, 406–07 exceptions, 237 grounded in respect for autonomy, 139 guidelines on, 135 informed (See informed consent) law of consent, 125–29, 135, 155, 170 nursing roles and ethical responsibilities regarding, 134–35, 137–38 presumption of, 129 to research, 128 variable capacity for, 158 Consent and Capacity Board (CCB), 167–68, 174, 176 consequentialism, 49, 51, 63 consequentialist arguments opposing MAID, 390 consumer choice, 278 consumer model of health care, 156 consumerism, 16 continuous palliative sedation (CPST), 378 continuous palliative sedation (CPST) (case study), 417–21 contractual model of nurse-patient relationship, 18–19 corporate culture in health care, 346 correctional nurses, 366 cost-benefit comparisons, 280–81, 289, 293 Council of Canadian Academies (CCA), 397 courage, 35, 51, 345, 349, 352, 435

475

COVID-19, 429–30, 435 access to regular health care services during, 441 beneficence during, 433–44 bereavement support, 445 change to social reality, 431 coercive public health measures, 441, 444 deaths in long-term care (See longterm care facilities) decision-making about, 440, 442–43 (See also public health officials) emergency measures, 430 enforcement, 459 essential workers (grocery clerks to first responders), 435 flatten the curve, 432 frontline health care workers, 435, 455, 461 health system overwhelmed by, 453 implications for autonomy, 444–46 indirect health impacts, 442 inequality in distribution of cases and death, 438, 459 and integrity, 460–62 lockdown, 430–32, 442, 457, 459–60 magnitude and severity, 441 opening up again after, 432–33 post-pandemic future, 460, 462–67 reflection, public discussion, and debate in response to, 463–64 research, 431 truth-telling, truthfulness, and trust, 446–50 Criminal Code of Canada, 108, 134, 378, 386–87, 395 crisis standard of care, 456

476

Concepts and Cases in Nursing Ethics

critical care treatment, 445 critical equity issues, 453 cultural competence, 208 cultural factors, 57, 95, 159, 197. See also female cutting (or female genital mutilation) autonomy, 158 in conceptions of health and health practices, 78 cultural practices inconsistent with Canadian health care practices, 108 effect on consent process, 138 family involvement in decisionmaking, 161, 208 sensibilities about privacy and confidentiality, 233 truth-telling and, 208 cultural relativism, 42 cultural values of family opposed to informing patient of bad news diagnosis (case study), 206–12 Cuthbertson v. Rasouli, 167, 174 cyberprofessionalism, 240 Dalziel, Jean, 11 data collection based on race, gender, and location, 450 big data, 235 public health value of, 450–51 death and dying, 187, 189. See also end-oflife decision making decision-making about public health response to the pandemic, 440, 443, 449 delayed disclosure, 192, 203

delaying transmission of relevant information, 447 deontological arguments opposing MAID, 390 deontology (duty-based ethics), 46–49, 54 descriptive analysis, 25–26 determinants of health, 82, 275, 294–95, 442, 458–59 digitalization of health records. See electronic medical records Dignitas clinic, 393 diminished autonomy, 118 disability, 57 disabled people, 385, 390 disagreement about treatment decisionmaking (case study), 97–103 disclosing and reporting a patient safety incident (case study), 216–20 disclosure of information, 199, 203–04. See also truthfulness bad news diagnosis, 195–97, 206, 209 delayed disclosure, 192, 203 information necessary for an informed decision, 128 nurses’ scope of practice, 199 to patient’s friends and family (case study), 253–58 prerogative of physician, 199 sensitive disclosure, 204 standard of disclosure, 127 therapeutic value, 189 Western society assumes full disclosure, 206 distribution of health resources, 453 justice in, 274–75 diversity, 57

index

do-not-resuscitate (DNR) orders, 162, 174 the doctor knows best, 123 domestic or family violence, 258–65 drug misuse, 291 duty, 34, 45–48, 72 acts of caring required from, 72 fiduciary duty, 73 Ross’s independent duties, 49 duty and virtue, 435, 437 duty of confidentiality, 227–30, 336 duty to provide care, 352–54 Dworkin, Gerald, 79 e-professionalism, 240 efficiency, 275 egalitarian theory, 282 egalitarianism, 276–78, 295 egoism, 40–41 elderly people, 140, 147, 274–75, 293, 301, 339, 454. See also long-term care facilities elder abuse, 260–62, 264 (See also domestic or family violence) growing elderly population, 342 electronic medical records, 200, 235–36, 238 Electronic Medication Administration Record (eMAR), 219 embodiment, 61 emergency departments, 258, 298, 300. See also trauma centres emergency measures, 430, 463 government/citizens relations during, 443 emergency preparedness and response, 440–41

477

Emergency Preparedness and Response (CNA), 314 emergency triage situations. See under triage emotivism, 41–42 employment conditions, 72, 74, 240, 246, 301–02, 459 abuse in the workplace, 73–75, 366–68 allocation of nursing time and care, 308–12 assignment refusal, 72, 350 in the community, 342–43 conscientious objections and, 356–64 disconnect with ethical ideals, 344 institutional arrangements under which nurses practice, 45, 340, 344 institutional environments that limit autonomy, 157–58 institutional policies, 199, 338 punitive environment, 218 right to refuse to accept risk, 436 staff turnover, 346 staffing levels, 82 workplace violence, 334 end-of-life decision making, 174, 191, 338, 375–421. See also MAID advance directives, 133, 135, 163, 376– 77, 399, 408 do-not-resuscitate (DNR) orders, 162, 174 letting nature take its course, 384 planning whatever time remains, 189 slippery slope fear, 390–91, 394–95 end-of-life issues, 345 pandemic put spotlight on, 445 end-of-life treatment options, 399 comfort measures, 376

478

Concepts and Cases in Nursing Ethics

continuous palliative sedation (CPST), 378, 417–21 palliative care, 13, 342, 376–77, 390, 399, 401, 403 palliative sedation, 11 environmental restraints, 147 equitable allocation of nursing time and care (case study), 308–12 equity, 440 essential workers (grocery clerks to first responders), 435 ethic of care, 17, 53–56 ethical analysis, 37–39 morality and, 35–37 and the nursing process, 25–26 ethical dilemmas, 22, 54, 349 “Ethical Endeavours Related to Broad Societal Issues,” 59, 81 ethical obligations vs. legal obligations, 135–36 ethical reflection, 36–37 ethical theories, 23–24, 45–46 consequentialism, 49–51 deontology (duty-based ethics), 46–49 ethic of care, 53–56 feminist ethics, 56–60 relational ethics, 60–62 virtue ethics, 51–53 ethical theory, 38–39 ethics, 36, 62 in research and experimentation, 15–16 tension between reality and, 343–44 ethics consultations, 215, 349 ethics of clinical practice. See clinical practice ethics ethics of public health. See public health ethics

euthanasia, 25, 389. See also MAID active/passive distinction, 382 voluntary, non-voluntary, and involuntary, 381–82, 390 evidence, 465 disagreement among experts, 449 policy decisions based on, 432–33 evidence-based practice, 76 experts, appeal to, 449, 465–66 explicit consent, 128–29 explicitness, 284–85 fairness, 146, 286 family coercive pressure by, 138 decision-making by, 158, 178, 206–08, 210 involvement in care planning, 18 requests to withhold bad news, 197 family as patient, 82 family care givers, 342–43 family-focused care, 96 female cutting (or female genital mutilation), 43, 108–09 feminist bioethics, 57 feminist ethics, 54–55, 57–58 political advocacy, 59 social change, 59 fentanyl, 104 fidelity, 49 fidelity to promise, 330 fiduciary duty, 73 financial abuse (elder abuse), 264 First Nations and Inuit communities. See also Indigenous communities home and community care, 342 First Nations children, 89–91

index

First Nations peoples, 78, 91 Aboriginal healing practices, 94 nurses’ role in advocating for, 79 Fleming v. Reid, 152 formal capacity assessment, 131–32 “Framework for Ethical Decisionmaking During the Coronavirus Pandemic,” 453 free-market system of health distribution, 276, 279 frontline health care workers mental health, 435 priority access in triage, 455 risk of contracting COVID-19, 435 stigma, 435 stress during pandemic, 461 functional approach to capacity, 130 futile treatment, 174 gate-keeping, 289 gender, 17, 54–56, 334 gender inequities, 59 gender prejudices, 57 genetic counseling, 191, 239 genetic information, 228 genetic screening, 239 Gilligan, Carol, 53–55 global and international context of ethics, 58 global health, cultural differences, and nursing values (case study), 108–11 global health concerns, 59 greatest happiness principle, 50 group identity and difference, 56 group or community privacy, 228 guidance for nurses concerning MAID, 398–400

479

Guideline for Opioid Therapy and Chronic Noncancer Pain, 104 Haliburton, Rachel, 53 happiness, 49–50 harm, 70, 151, 153 health care associated harm, 217 risk of harm among nurses, 73 harm principle, 143, 444 harmful incident, 217 health, definitions of, 77–78 Health Canada, 104 health care. See also Canadian health care system consumer model of, 156 decentralization of, 59 power and decision-making in, 17, 44, 123 private health care, jumping the queue with (case study), 319–21 privatization, 278 public/private partnerships, 235 health care/personal care distinction, 410–11 health care ethics. See bioethics health care workers, 438. See also health professionals; nurses fear of SARS, 434 inequality (hospitals vs. long-term care), 459 personal support workers, 436 risk of COVID-19, 434 support of, 436 well-being during pandemic, 433 health inequalities, 295 health information. See also health records non-consensual sharing of, 237

480

Concepts and Cases in Nursing Ethics

patients own their information, 239 right of patient to access, 200, 232 secondary users of, 238 “Health Infoway,” 235 health literacy, 192 health professionals, 53, 70, 78, 461. See also nurses; physicians authority, 123 duty of confidentiality, 227 as gate-keepers, 289 paternalism, 80 physicians, 124, 456 power relationship with patients, 125 practitioner-patient relationship, 190 public accountability, 16 respect for privacy, 226–27 uncertainty as part of practice, 432 utilitarianism, 186 health promotion, 81, 445 health records, 230. See also health information electronic medical records, 200, 235–36, 238 need-to-know basis, 230–31 patient access to, 236 heroic measures, 408 HIV/AIDS, 254–56, 284 honesty, 35 hospital or agency, 459. See also institutional arrangements under which nurses practice meso-level allocation, 289, 292 power and decision-making in health care system, 44 hospital overcrowding and discharge planning (case study), 364–66

hospitals and emergency services during COVID-19 (Canada), 432 response to COVID-19, 431 humanitarian work in war-torn areas (case study), 106–07 Huntington’s Disease (HD), 239

ICU beds, 173 triage guidelines during the pandemic, 445 identity, attention to, 57 illness prevention, 445 immunity passports, 451–52 implied consent, 129 Indigenous communities. See also First Nations and Inuit communities health inequities, 275 low health status, 295 Indigenous peoples, 11, 283 Aboriginal healing practices, 94 importance of including in health policy decisions, 285 individual freedom, 140–41 infection control, 437 infection-control guidelines, 459 information control, 146 information disclosure. See disclosure of information information sharing health records, 230 (See also confidentiality) need-to-know basis, 230–31 informed consent, 16, 80, 122, 126–27, 139, 189, 285 to MAID, 385 of research subjects, 16

index

institutional arrangements under which nurses practice, 45, 340, 344 institutional policies, 199 inconsistent with nurse’s personal or professional values, 338 on social media, 243 integrity, 11, 13, 35, 327–68 and COVID-19, 460–62 definition, 328 fidelity to promise, 330 moral autonomy, 328–29 and moral distress, 343–47 and the nurse-colleague relationship, 340–41 and the nurse-community relationship, 342–43 and the nurse-employer relationship, 338–40 and the nurse-patient relationship, 338 personal and professional integrity, 333–37 steadfastness, 330–31 wholeness, 331–33 intensive care unit (ICU) bed. See ICU beds intention, 75–76, 194, 382, 384–85 Internet, 192, 235, 265 interprofessionalism and team care, 17 involuntary and coerced treatment, 152–53, 176 community treatment orders, 154–55 involuntary detention, 150–51, 203, 205 involuntary euthanasia, 390 Jameton, Andrew, 79, 345, 349

481

Jehovah’s Witnesses parents, 90 Jehovah’s Witnesses’ right to autonomy, 131 justice, 11, 13, 21, 49, 82, 157, 159–60, 273–97, 439 in clinical practice vs. public health, 441 and COVID-19, 452–60 in distribution of health care and resources for health, 274–75 ethic of, 54 at level of macro-allocation, 457 and the limitation of autonomy, 145–46 nurses working for justice, 297 substantive principles of, 278–84 theories of, 275–77 triage and micro-level access to available care, 453–57 justice-oriented virtues, 55 justifying the measures in pandemic, 466–67 Kant, Immanuel, 46–48 categorical imperative, 47–48 criticism of, 48–49 universal law, 46–48 knowledge and reasoning ability, 120 knowledge base in ethics for nursing, 20, 24 moral beliefs and values, 21–22 relevant codes, policies, and laws, 22–23 knowledge gap practitioner-patient, 190–92 knowledge requirement for informed consent, 127

482

Concepts and Cases in Nursing Ethics

Kohlberg, Lawrence, 55 stage theory of moral development, 53–54 Kubler-Ross, Elizabeth, 376 labour unions, 348 Latimer, Robert, 389–90 law of consent, 125–26, 135, 170 elements of consent, 126–29 relational approach supported decision-making, 155 libertarianism, 276–77, 295 liberty or freedom to decide, 125 living wills. See advance directives lobbying, 293, 348 lockdown. See under COVID-19 long-term care facilities, 298, 437, 459 isolating and cohorting residents and staff, 437–38 limitation of autonomy, 157 outbreaks, 436 risks for residents and caregivers, 458–59, 465–66 use of restraints, 147 Mack Training School for Nurses, 17 macro-allocation, 288, 294 MAID, 11, 13, 22, 136, 332, 378, 419. See also Bill C-14; euthanasia conscientious objection, 335 criteria, 391, 397 disabled people, 390 eligibility criterion, 397 ethical debate and controversy, 378–91 legalization of, 160 nursing practice implications, 398–402

MAID, conscientious objections (case study), 356–64 mainstream ethics, 58 maleficence, 123 nonmaleficence, 49, 70, 186, 237 malestream ethics, 57 mandatory gunshot reporting, 259–60, 262 mandatory reporting of suspected child abuse, 260, 263 mandatory screening and testing, 227 Margot Bentley and advance care planning (case study), 404–17 masks, 431, 449–50 mature minor, 80–81, 88, 134 McLachlan, Beverley, 91, 168–71 media, 293, 298, 434 discussion of policy issues during pandemic, 433 on issue of opening up, 442 reports of long-term care homes, 439 medical assistance in dying. See MAID medical criteria for prioritizing allocation options, 289 medical experimentation conducted in Nazi concentration camps, 122 medical jargon, 193 medical model, 17, 334 medical tourism (case study), 317–19 medication errors, 216, 219, 229 men in nursing, support for, 334 mental health capacity and, 130 frontline health care workers in pandemic, 435 involuntary and coerced treatment, 152–53

index

involuntary detention, 150–52 limitation of autonomy, 149–50, 175 lockdown’s effect on, 442 mental health diagnosis (case study), 201–06 mercy killing, 26, 389 meso-allocation, 288, 292–94 micro-allocation, 288–92, 294 might makes right, 44–45 Mill, John Stuart, 50, 144 On Liberty, 142–44 minimally conscious state, 167–68 moral agency, 335, 347–48, 350 moral analysis, 23 moral autonomy, 328–29 moral beliefs and values, 21–22, 41–42 moral character, 51 moral choices, 36 moral claims, 48 moral community, 348–49 moral conflict, 48 moral development, 54 moral distress, 172, 298, 346, 348, 438. See also nursing ethics care of the dying or critically ill, 345 from disagreement with an institutional policy or practice, 333 from inability to be effective, 461 integrity and, 343–47 from triage scenarios, 456, 461–62 moral judgments and evaluations, 35, 42, 46 moral law, 47 moral life, 24 moral norms or ideals, 35–37 moral ought, 34 moral reflection, 121–22, 328

483

moral right, 48 moral virtues, 35, 51, 337 moral worth, 48 morally principled decisions, 37–38 Morgan, Edward, 437–39, 449–50 mutual respect, 61 MyChart, 236 N95 facial respirators, 437, 450 Nancy B., 382, 390 Nancy B.: right to refuse treatment (case study), 386 Nancy B. v. Hôtel-Dieu de Québec, 386 narrative enquiry, 62 National Nursing Framework on Medical Assistance in Dying (CNA), 335 need-to-know sharing of information, 230–31 negligence, 126 New England Journal of Medicine, 453–54 Nicomachean Ethics (Aristotle), 51 Nightingale, Florence, 337 Nightingale Pledge, 337 no harm incident, 217 non-consensual sharing of health information, 237 non-voluntary euthanasia, 390 nonmaleficence, 49, 70, 186, 237, 443 normalization of mass surveillance postpandemic, 452 normative analysis, 25–26 normative ethical theory, 39 Nova Scotia College of Nursing, 137–38 Nuremberg Code, 122–23 nurse-patient relationship, 101, 138, 196, 208, 338 contractual model, 18–19

484

Concepts and Cases in Nursing Ethics

patient advocate model, 19–20 primary obligation to the patient, 341 social-justice advocacy model, 20 nurse practitioners, 259 MAID and, 381, 385, 395, 398–400, 419 scope includes giving diagnosis, 199 nurse privacy and social media (case study), 265–69 nurses. See also health professionals; nursing absenteeism rates, 246 accountability for their practice, 160 advocacy for patients, 124, 137, 156, 340 (See also nurse-patient relationship) advocacy for system and institutional changes, 156, 466 advocacy for themselves, for colleagues, and profession, 340 advocacy toward achieving social justice, 458 assessment of patients’ needs, 282 boundary issues, 241–43, 265–66, 332 duty of confidentiality, 227 duty to act with patient’s wishes, 80 duty to provide care, 352–54 history of subordination in health care settings, 17, 123, 333 intermediaries between patients, relatives, and health care team, 196 as moral agents, 350 moral distress, 172, 298, 333, 343–47, 349 occupational (See occupational health nurses) personal and professional integrity, 333–37

plurality of duties, 48 professional identity of knowledge, skill and service, 71, 334 professional promise, 72, 330, 334 professional standard of care, 175 ranking needs and allocation of time, 82, 308–12, 437, 455 respect for autonomy of patients, 124 role in identifying, assessing, responding to domestic violence, 258–59 scope of practice, 334, 339 sensitivity toward multicultural society, 161 social media use, 239–40, 243–44, 265–66, 336 unionized environments, 74 work environments (See employment conditions) nurses in trauma centres ethical challenges, 212 nurses working in the community. See also public health nurses lack of resources, 342 working in co-operation with underqualified personnel, 342–43 nursing, 18, 29, 72 egalitarian approach in Canada, 282 of families or family as patient, 82 person- and family-centred care, 100, 102 professionalism in nursing, 17, 71, 97, 334, 337 reputation, 327, 336–37 social justice as core value, 458 standards of conduct, 73 values dimension of, 22

index

nursing education, 97, 101, 191, 299, 337, 341, 347, 349, 354. See also guidance documents clinical education, 303–07 about cultural safety, 95 education of health professionals, 53, 79, 94 Mack training school for Nurses, 17 management of potentially harmful patients, 74 on-the-job learning, 344 nursing ethics, 14, 17–18. See also moral distress and consent, 134–35, 137–38 ethical analysis, 25–26 pluralistic view of, 63 nursing staffing levels, 299, 301 nursing students, 303–04 social media use, 241–44 Obama, Barack, 277 obligations, 34, 41 Occupational Health and Safety Act, 437 occupational health nurses confidentiality issues, 247–50 On Liberty (Mill), 142–44 ONA v. Eatonville/Henley Place, 437–39, 449 Ontario HCCA, 126–30, 132, 167, 169, 171–72, 174 provisions that address consent, 135 Ontario health privacy legislation, 230–31 Ontario Mental Heath Act, 134, 153 Ontario Nurses’ Association (ONA), 434, 437–39, 449

485

Ontario Patient Restraints Minimization Act, 147 Ontario Superior Court of Justice, 437, 439 Ontario’s Aboriginal Health Access Centres, 94 opioids, 104–06 opportunity costs, 288–89 other-regarding actions, 144 Ottawa Charter for Health Promotion, 78 ought statements, 44 oughtness, 34–35, 41, 45 palliative care, 13, 342, 376, 390, 399, 456 limited access to, 401, 403 nursing and, 377 palliative sedation, 11, 378, 417–21 pandemics, 350–56, 429, 448. See also COVID-19 end-of-life care issues, 445 preparedness, 457, 464 SARS, 431 Parens Patriae and the case of J.J. (case study), 84–97 parental right to make decisions on behalf of children, 90, 96. See also substitute decision-makers partnerships and participatory model of decision making, 101 passive and active forms of intervention in dying process, 382, 384, 388, 394. See also MAID passive euthanasia, 382, 394 paternalism, 16, 19, 79–81, 83, 123, 125, 141–45, 187 motivation for being less than truthful, 447

486

Concepts and Cases in Nursing Ethics

in public health, 444 patient advocate model of nurse-patient relationship, 19–20 patient autonomy, 19. See also involuntary and coerced treatment beneficence devalued by, 187 right to accept or refuse treatment or care, 101, 176–77, 384, 386 patient-health care worker ratio, 298 patient involvement in care planning, 18 patient mistreatment, 366–68 Patient Protection and Affordable Care Act (2010), 277 patient request for bad news information in trauma centre (case study), 212–16 patient safety, 217 The Patient Safety Education Program— Canada (PSEP), 148 patient safety incidents, 219 patient’s best interests, 102, 132–33 “Patients’ Bill of Rights,” 16 patient’s choice or decision, 139. See also previously expressed wishes conflict with health professional’s belief, 141 respected even when in conflict with family or caregivers, 378 patient’s rights movement, 19, 97 Paul Thompson (case study), 201–06 persistent vegetative state (PVS), 166–68 personal protective equipment (PPE), 431, 435–38. See also N95 facial respirators adequate PPE, 459, 464 assessing what measures are appropriate, 449 insufficient, 434

personal support workers, 436 pharmakon, 70 physician-assisted dying, 380. See also

MAID

physician-assisted suicide, 380 physicians authority, 124 moral distress when making decisions during pandemic, 456 pluralism, 16 pluralistic deontology, 49 Poisson, Jayme, 109 police, 151, 213, 263 policy decisions, 78 based on evidence and values, 432–33 value decisions, 443, 446 population-oriented ethics of public health, 440, 442–43 post-pandemic future, 452, 462–67 poverty, 57, 62, 154 power and decision-making in health care, 17, 44, 123 power distribution, 27, 37, 56–58, 343 power of attorney for personal care or treatment, 132–33 power relationship between health professionals and patients, 125, 127, 138, 208 pre-existing conditions, those with, 454, 458 precautionary principle that safety comes first, 436 prescribed opioids for chronic pain (case study), 104–06 President’s Commission for the Study of Ethical Problems in Medicine … Research, 188

index

presumption of capacity, 131 presumption of consent, 129 previously expressed wishes, 132, 407–09 previously held values and beliefs, 133 principle of least restrictive alternative, 451 prisoner research subjects, 122 privacy, 228, 237, 439 balancing with openness during pandemic, 448 in clinical practice vs. public health, 441 link between autonomy and, 228 right to privacy, 227 privacy and confidentiality, 11, 13, 225–46. See also confidentiality and COVID-19, 450–52 in the digital age, 235–39 private health care, jumping the queue with (case study), 319–21 privately owned LTC homes, 437 privatization, 278 procedural justice, 284 accountability, 285 autonomy, 285 explicitness, 284–85 profession of nursing. See nursing professional associations, 22, 59, 72. See also names of specific associations guidelines on well-being during pandemic, 433 guidelines or standards for use of restraints, 147–48 lobbying through, 348 professional judgment, 437 proxy. See substitute decision-makers psychiatric assessment, 151

487

public engagement on pandemic ethics, 444, 446 public good argument, 465 public health, 20, 437, 439, 453 population level, 439, 441 population-oriented ethics of, 440 public health communication directives for the good of the population, 447 persuading people to make the right decision, 447 public health emergency preparedness and response, 440 public health ethics, 439–44, 455 public health nurses, 62, 348 public health officials authority and power, 441 emergency preparedness and response, 441 response to COVID-19, 431 public health orientation, 81 public health units and governments act for the good of citizens, 446 published health information and daily data, 448 public health value of data collection, 450–51 public/private partnerships, 235 quality improvement, goals of, 216, 218 quality of care, 299–300, 304 quality of life, 25, 77 quality-of-life criteria, 289, 454 quarantine, 430, 459 Quebec Act Respecting End-of-Life Care, 379, 397

488

Concepts and Cases in Nursing Ethics

R. v. Latimer, 389 racial or ethnic minorities, 57 racism and other prejudices, 293 random selection criteria, 289, 291 Rasouli, Hassan (case study), 166–75 rationality, 120, 125 Rawls, John, A Theory of Justice, 277 reason, 47 reasonable, 27 reasonable person test, 127 reasonable physician test, 127 reflection, 24, 348 ethical reflection, 36–37 refusal of care, 176–77. See also patient autonomy Registered Nurses’ Association of Ontario (RNAO), 100, 102, 147–49, 340 Best Practice Guidelines, 205, 208 Regulated Health Professions Act, 199 relational approach to the law of consent, 155 relational autonomy, 53, 58, 144, 159 relational ethics, 54, 60–62 relativism, 42–44 release of confidential information to third parties without consent (case study), 258–65 reparation, 49 reproduction, 57 research and experimentation, 15–16 ethics in, 15 human subjects, 15–16, 122–23 research practices, 122 resource allocation decision-making, 173, 274–75, 280, 282, 289 devolution or decentralization, 285

equality, 282 macro-allocation, 288, 292–94 meso-allocation, 288–89, 292–94 micro-allocation, 287, 289–92, 294 moral distress from, 345 nurses’ representation, 287 during pandemic, 456 public involvement, 286, 294 responding to mistreatment of patients in correctional facility (case study), 366–68 restitution, 283–84 restraints, use of, 147–49, 338–39 restrictions on visitors, 444–45 rights and freedoms, 444. See also Charter of Rights and Freedoms during COVID-19, 441, 463 emergency powers and, 443 violations of human rights, 59 rights-based model of advocacy, 19–20 risk and duty (during pandemic), 351–52, 434–36 caring for others when one is at risk, 461 value judgments about acceptable level, 448–49 RNAO. See Registered Nurses’ Association of Ontario (RNAO) Rodriguez v. British Columbia, 387–88, 393–94 Ross, W.D., 49 rule utilitarianism, 50 safe-injection sites, 59 safe work environment, 74 same-sex partners as substitute decisionmakers, 163

index

sanctity of life, 77, 387–88, 390 SARS, 351, 431 SARS Commission, 431, 434, 436, 464, 466 SARS-COV-2, 430, 434 Saskatchewan Health Care Directives and Substitute Health Care Decision Makers Act, 133 Saskatchewan Registered Nurses Association (SRNA) Discipline Committee, 266–67 Saskatchewan Union of Nurses, 267 Schafer, Arthur, 90, 172–73, 382 schizophrenia, 153, 202, 219 Scott Starson (case study), 175–79 self-examination, 121 self-interest, 40–41, 45, 47 self-knowledge, 21 self-regarding actions, 144 self-sacrifice, 71–74 selflessness, 434 Sen, Amartya, 295–96 sexual discrimination, 57 sexual harassment in the workplace, 339 sexual orientation, 57 Sherwin, Susan, 159 Sinclair, Murray, 91 Smith, Brian, 153–54 social determinants of health, 154, 282, 296, 442–43 distribution of, 453 post-pandemic future, 463 social distancing, 430 social inequalities made evident by COVID-19, 458 reinforced by interventions, 453 social isolation, 430

489

social justice, 58, 348, 453 distribution of benefits and burdens during COVID-19, 457–60 in distribution of resources for health care, 294–96 in nursing, 458 in nursing theory and research, 296 in public health, 440 social justice advocacy, 20, 59 social media, 11, 235, 336 boundary issues, 241–43, 266 confidentiality breaches on, 243 distinction between professional and private life, 240, 265 employers’ policies, 243 influence on privacy and confidentiality, 239–45 and networking among nursing students, 241 potential benefits, 245 social worth criteria, 289, 291, 454 SPIKES model for breaking bad news, 195 stage theory of moral development, 53–54 Stajduhar, Kelli, 377 stakeholders representation in decisionmaking, 286–87 Stand on Guard for Thee, 74, 431 The State of Knowledge on Advance Requests for Medical Assistance in Dying, 398 The State of Knowledge on Medical Assistance in Dying for Mature Minors, 398 The State of Knowledge on Medical Assistance in Dying Where a Mental Disorder …, 398

490

Concepts and Cases in Nursing Ethics

Statesville Penitentiary experiments, 122 status approach to capacity, 130 stay-at-home orders, 430, 441 steadfastness, 330–31 stereotypes, 160, 198, 337 stigmatization during pandemic, 448 Stingl, Michael, 390 street drugs, 202, 205 stroke unit, patient on (case study), 98–103 strong paternalism, 142 substance dependency problems stigmatization, 249, 252 substantive principles of justice, 278–79 equality, 282 liberty, 279–80 need, 283 procedural justice, 284 restitution, 283–84 substitute decision-makers, 124, 126, 132–33, 150, 154, 163, 167, 378, 408 during pandemics, 445–46 parental right to make decisions on behalf of children, 90, 96 with respect to refusal of treatment or care, 404, 410 Sue Rodriguez: request for assisted suicide (case study), 387–90 suicide decriminalized, 388 suicide risk, 205 Supreme Court of British Columbia, 387, 405 Supreme Court of Canada, 278, 283, 389 suspension of health care services, 442 systems approach to improving care, 218 Tarasoff v. Regents of the University of California, 233

Taylor, Gloria, 391, 393 team-based approach to health care, 231 technological developments new ethical issues from, 15 technologies to track the spread of disease, 451 Terminal Sedation, 417 theories about morality egoism, 40–41 emotivism, 41–42 might makes right, 44–45 relativism, 42–44 theories of justice, 275–77 egalitarianism, 276–77 libertarianism, 276 utilitarianism, 276 A Theory of Justice (Rawls), 277 therapeutic privilege, 213–14 Tracy Latimer: involuntary euthanasia (case study), 389 traditional medicine, 89–90 transgender people, 57 transparency and explicitness on decision-making, 448–50, 453 trauma centres, 212 triage, 354 emergency triage situations, 146 guidelines issued during pandemic, 445, 461–62 maximizing benefits, 454 and micro-level access to available care, 453–57 pandemic triage situation, 453–57 prioritizing patients for access, 453 rationing of intensive-care beds during a clinical crisis, 312–17

index

utilitarian ethical perspectives that emphasize population outcomes, 454 triage-like decisions, 289 triage teams, 456 trust, 37, 93, 190, 204, 446–50 lack of trust in health system (Indigenous people), 93, 95 Truth and Reconciliation Commission of Canada, 94, 275 truth-telling, 439, 446–50 aim of winning compliance can be in tension with, 448 in clinical practice vs. public health, 441 creating or confirming a false belief, 193 important for patient safety approaches, 217 intention to speak the truth, 194 no “one size fits all” rule, 211 in trauma centre, 214 truth-telling and cultural difference, 197–98, 209 truthfulness, 11, 13, 21, 186–201, 446–50 attitudinal shift, 186–87 importance for maintaining trust, 190, 447–48 intention to speak the truth, 194 transparency from authorities on decision-making processes, 448 truthfulness and autonomy, 189–90 truthfulness and beneficence, 186–89 truthfulness and the circle of care, 198–200 truthfulness and the practitioner-patient knowledge gap, 190–92

491

uncertainty in context of COVID-19, 435, 447 Union of Medical Care and Relief Organizations (UOSSM), 106 United States health system, 277 Universal Declaration of Human Rights, 44 universal law, 47 University of Toronto Joint Centre for Bioethics Stand on Guard for Thee, 74 utilitarian ethical perspectives that emphasize population outcomes, 454 utilitarianism, 49–50, 54, 276, 295, 440, 445, 463 utility, principle of, 50 vaccines, 453 value judgments, 42, 435 values, 21–22, 34, 349 altered during pandemic, 463 decision-making in the pandemic, 432–33, 443, 448, 466 values and beliefs, 133 core values, 329–30, 332 values clarification, 21, 24, 27 Venkatpuram, Sridhar, 296 ventilators, 15, 382 shortage of, 453 triage guidelines during the pandemic, 445 vicarious trauma, 438 virtue ethics, 55, 71 and contemporary bioethics, 52 courage, 51 in nursing ethics literature, 53

492

Concepts and Cases in Nursing Ethics

virtues, 55 virtues and duties in a pandemic, 434–39 virtues prized in health care, 435 virtues relevant to given situation, 52, 61 visitors, restrictions on, 444–45 voluntariness of consent, 127 voluntariness of research subjects, 16 voluntary and informed consent for treatment, 123, 125–26 voluntary euthanasia, 380, 382, 390 vulnerable and disadvantaged persons and groups protection, 385, 388 racial or ethnic minorities, 57 representation in decision-making, 286 safeguards for, 394 Wawrzyniak v. Livingston, 174 weak paternalism, 142, 148 Western culture on disclosure, 206

personal freedom in, 161 Western health care, 158 Eurocentric model, 209 Western medicine, 86, 93, 95 Westin, Alan, 228 wholeness, 331–33 wishes while capable. See previously expressed wishes withdrawal of life support, 166–68, 171, 382 withdrawal of ventilators or ICU support, 455–56, 462 withdrawing treatment, 461 withholding of information from patients, 123, 193 workloads, 298–99. See also employment conditions workplace violence, 334, 339 World Health Organization (WHO), 108, 282, 429 definition of health, 77–78 world hunger, 59

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