Ethics, Law, and Aging Review, Volume 10 : Decision-Making Capacity and Older Persons [1 ed.] 9780826116390, 9780826116444

Citation preview

Ethics, Law, and Aging Review Volume 10

Marshall B. Kapp, JD, MPH, FCLM, is an attorney and the Arthur W. Grayson Distinguished Professor of Law and Medicine at the Southern Illinois University School of Law. He is a fellow of the Gerontological Society of America, from which he received the 2003 Donald P. Kent Award, and the American College of Legal Medicine.

Ethics, Law, and Aging Review Volume 10

Decision-Making Capacity and Older Persons

Marshall B. Kapp, JD, MPH, FCLM, Editor

Springer Publishing Company

Volume 1-5 of Ethics, Law, and Aging Review, appeared as a biannual journal entitled the Journal of Ethics, Law, and Aging. These publications are available from the publisher.

Order ETHICS, LAW, AND AGING REVIEW, Volume 11, 2005, prior to publication and receive a 10% discount. Copyright © 2004 by Springer Publishing Company, Inc. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior permission of Springer Publishing Company, Inc. Springer Publishing Company, Inc. 11 West 42nd Street New York, NY 10036-8002 ISBN-0-8261-1644-2 ISSN-1076-1616 ETHICS, LAW AND AGING REVIEW, is indexed/abstracted in Ageline, Cumulative Index to Nursing & Allied Health Literature, New Literature in Bioethics, Mental Health Abstracts, PsychINFO & PsychSCAN, Social Planning/Policy & Development Abstracts, Social Work Abstracts, Sociological Abstracts. Printed in the United States of America by IBT Global.

Contents Contributors

vii

Acknowledgments

ix

Introduction

xi

Part I. Decision-Making Capacity and Older Persons Chapter 1.

Commitment, Relationship, Voice: Cornerstones for an Ethics of Long-Term Care Michele Mathes, JoAnne Reifsnyder, and Maureen Gibney

Chapter 2.

The Capacity to Decide to Remain Living in the Community Leo M. Cooney Jr. and John A. Keyes

Chapter 3.

Hopes and Cautions for Instrument-Based Evaluation of Consent Capacity: Results of a Construct Validity Study of Three Instruments Jennifer Moye, Michele J. Karel, Armin R. Azar, and Ronald J. Gurrera

Chapter 4.

Competency in Parkinson’s Disease With Dementia Daniel C. Marson and Maureen Dymek

Chapter 5.

Decisional Capacity in Theory and Practice: Legal Process Versus “Bumbling Through” Marshall B. Kapp

3 25

39

63

83

Part II. Independent Articles Chapter 6.

End-of-Life Liability Issues Stuart Selkin

v

93

Contents

vi

Chapter 7.

The Work Versus Eldercare Dilemma and the Law: An Israeli Example Israel Doron and Galia Linchitz

109

Book Reviews

125

Books Received

133

Index

136

Contributors Armin R. Azar was the project coordinator for the study described in Chapter 3 and is pursuing a PhD in clinical psychology at the University of Louisville. Leo M. Cooney Jr., MD, is professor and chief of the Section of Geriatric Medicine at the Yale University School of Medicine. Dr. Israel Doron is an attorney and lecturer in the Department of Gerontology, Haifa University, Israel. Maureen Dymek, PhD, is a member of the Department of Psychiatry at the University of Chicago School of Medicine. Maureen Gibney, PsyD, is a clinical neuropsychologist and trainer in Philadelphia and is affiliated with Drexel University. Ronald J. Gurrera, MD, is affiliated with the Department of Psychiatry at Harvard Medical School and is director of Inpatient Mental Health Programs at the Boston VA Healthcare System—Brockton Campus. Michele J. Karel, PhD, is affiliated with the Department of Psychiatry at Harvard Medical School and is staff psychologist and director of geropsychology training at the Boston VA Healthcare System—Brockton Campus. John A. Keyes, JD, is Judge of the Probate Court for the city of New Haven, Connecticut. Galia Linchitz is a graduate student in the Department of Gerontology, Haifa University, Israel. Daniel C. Marson, JD, PhD, is affiliated with the Department of Neurology, Alzheimer’s Disease Research Center, and Center for Aging at the University of Alabama at Birmingham, Alabama. Michele Mathes, JD, is ethics education coordinator for the Center for Advocacy for the Rights and Interests of the Elderly in Philadelphia. Jennifer Moye, PhD, is a psychologist affiliated with the Department of Psychiatry at Harvard Medical School and directs the Geriatric Mental Health Center at the Boston VA Healthcare System—Brockton Campus. JoAnne Reifsnyder, PhD, APRN, BC-PPCM, is affiliated with the Hartford Center of Geriatric Nursing Excellence at the University of Pennsylvania School of Nursing and with Ethos Consulting Group, Mt. Laurel, NJ.

vii

viii

Contributors

Stuart Selkin, MD, JD, is an ear, nose, and throat specialist practicing in the metropolitan New York area. He also holds a law degree and is a fellow of the American College of Surgeons and the American College of Legal Medicine.

Acknowledgments “Decisional Capacity in Theory and Practice: Legal Process Versus ‘Bumbling Through’” by Marshall B. Kapp was published originally in Volume 6, Number 4 of Aging & Mental Health (2002), and is reprinted here with the permission of publisher Taylor & Francis. Other acknowledgments appear with particular chapters in this volume.

ix

This page intentionally left blank

Introduction

E

valuating, and then taking action on the basis of the evaluation of, the cognitive and emotional capacity of older individuals to make their own decisions is a process through which society may exert an enormous amount of control over the freedom, and indeed the very lives, of the elderly. It is a process implicating essential ethical questions relating to morally defensible norms (outcomes) and fair procedures, as well as legal issues pertaining to the powers and duties of alleged incapacitated persons (AIPs), their families, professional service providers, and governmental agencies. Moreover, because the legal process involving the adjudication of incompetence depends in large part (and sometimes exclusively) on the expert evidence presented by examining health care professionals in legal documents or sworn testimony, decision-making capacity also entails interesting and vital aspects of forensic evidence. The choices that older persons either enjoy or are confronted with (depending on one’s perspective) may involve a constellation of medical, residential, financial, or other matters. Some of these choices carry obvious life-or-death consequences at the bedside (Howe, 2001), whereas others (e.g., where and with whom to live) might appear to be less urgent, even mundane, yet are of momentous significance to the older individual nonetheless. For any of these kinds of decisions, finding the correct balance between respect for personal autonomy, on the one hand, and society’s compassionate obligation to step in when protection of the vulnerable is necessary, on the other, may be an excruciatingly delicate task in the United States and other countries that value both individual self-determination and social responsibility (Skene, 2002). When the balance is struck in the direction of parens patriae and the state’s paternalistic role to safeguard those who cannot fend for themselves, associated questions about the best standards for use in surrogate decision-making also become unavoidable (McCullough, Molinari, & Workman, 2001). Although the topic of decision-making capacity and older persons has been discussed in the professional literature for a long time (Clow & Allen, 1953), there is much yet to be learned about it both theoretically and practically. In the legal context, “statutes and court decisions have done little to move beyond the vaguest descriptions of what constitutes general competence . . . It seems . . . that the

xi

xii

Introduction

tendency has been to give the judiciary maximal flexibility in determining that an individual is incompetent” (Gutheil & Appelbaum, 2000, p. 221). In regard to “specific” competency, or competency “more focused” on a particular issue (an emphasis on decision-specific competence is now embodied in modern state guardianship laws), such as deciding whether or not to undergo heart bypass surgery this week, “[e]ach court tends to . . . derive standards de novo,” and this predilection “compounds the confusion.” (Gutheil & Appelbaum, 2000, p. 222). In the clinical practice arena, the experts seriously disagree among themselves about which standards are important for assessing decision-making capacity, and the clinical standards generally put to use are not always consistent with a jurisdiction’s stated legal requirements (to the extent they can be ascertained with any clarity). Hence, professional capacity assessment, especially by physicians, often “is a subjective, inconsistent, and arguably idiosyncratic” affair (Volicer & Ganzini, 2003, p. 1273). Clinical practice in this sphere is not well informed by results from empirical research. The relative dearth, at least until fairly recently, of empirical study of decision-making capacity is attributed by one leading investigator to the lack of a single criterion to guide the inquiry and the reality that we may not “really want to know” just how many older people truly have significantly impaired mental abilities (Royall, 2002, p. 1885). We cannot even agree very well on the huge issue of when (under what kinds of circumstances) a capacity assessment with any degree of formality ought to be done on an older person in the first place, and by whom. In many respects, this is the most crucial ethical and clinical issue, because the process of capacity evaluation, often involving a close interaction and relationship between caregivers, family members, and the AIP, may both forcefully influence and sometimes coerce the outcome of a decision and act therapeutically or antitherapeutically on the participating parties (Howe, 2001; Kapp, 2003). One reaction of the research community to the difficulties we have experienced in trying to translate the relevant ethical principles of autonomy and beneficence into workable legal rules and clinical practices for recognizing, assessing, and dealing with persons of questionable decision-making capacity has been to work diligently on developing and disseminating new and better standardized instruments to measure objectively and document an individual’s capacity to make choices (Carney, Neugroschl, Morrison, Marin, & Siu, 2001). Any approach that moves us away from the prevailing unbridled subjectivity of medical, financial, and legal capacity assessors has an obvious ethical and practical appeal, so long as the inherent limitations and weaknesses of standardized tools (Kapp & Mossman, 1996) are fully acknowledged and respected. Part I of this volume assembles a number of chapters that aim to contribute to the discussion of the decision-making capacity issue, especially as it pertains to older persons, as we progress with our ethical analyses, enunciation of legal standards, and education and equipment of professional practitioners who come into

Introduction

xiii

contact with older individuals who are impaired in their decision-making capacity. Michele Mathes and her colleagues commence with an insightful look at the profound ethical and clinical ramifications of decision-making capacity in long-term care, describing the evolution and application of a particular original framework they have developed for ethical decision-making in long-term care that responds sensitively to the many relationships and responsibilities between carers and the cared for. In Chapter 2, geriatrician Leo Cooney and Judge John Keyes combine the medical and legal perspectives to address the question of an elder’s decisionmaking capacity to choose to remain living alone in the community. The authors supply a detailed parsing of the kinds of information that medical professionals need to provide to the courts and that the courts need to consider carefully in making this momentous determination for an older person. Chapters 3 and 4 concern the quest for helpful standardized instruments for evaluating decision-making capacity for specific persons in particular contexts. Jennifer Moye and her colleagues report, with admirable cautions, the results of their construct validity study of three instruments, and Daniel Marson and his colleagues (representing legal and neuropsychological expertise) apply their extensive and groundbreaking earlier work on conceptual and empirical models of medical decision-making capacity to the case of patients who suffer from dementia because of Parkinson’s disease. In Chapter 5, I examine the policy issue of whether we ought to be encouraging or discouraging extralegal, “bumbling through” handling of persons with questionable capacity rather than routinely initiating formal judicial involvement through the guardianship process, plus the associated question of what we should be teaching health care providers, financial officers, and other third parties who are the ones who ordinarily must decide whether formal guardianship proceedings ought to be initiated for a particular individual. Part II contains an article on end of life liability issues by Stuart Selkin, a physician/attorney who draws on his impressive experience as an ear, nose, and throat specialist who has cared over the years for many patients who were dying from various forms of cancer. Dr. Selkin’s chapter is by no means unrelated to the theme of Part I, as the quality of the patient–health care provider relationship, the extent of providers’ legal anxieties, and the consequent quality of a patient’s medical care near the end of life are all determined to a certain extent by the ability of a patient to speak and advocate on his or her own behalf rather than being dependent on surrogates who may or may not faithfully represent the patient’s own values and wishes. Part II also has an article by Israel Doron and Gali Linchitz of Haifa University discussing a social/political/economic issue of vital concern to gerontological health care and human service planners and providers, namely, how laws and policies pertaining to employment ought to account for the important and widespread phenomenon of family members and friends helping to provide necessary care in home environments for older persons (most of whom, not incidentally, have seriously

xiv

Introduction

impaired decision-making capacity). Doron and Linchitz’s explication in the context of an Israeli society that is slowly abandoning its modern socialist roots demonstrates the international scope of this challenge and the reality that, despite the constant carping of critics of the way in which older persons and their families are treated by both government and the private sector in the United States, the rest of the world is not exactly abounding in positive examples of effective and realistic social and economic schemes that we might easily emulate. Societies that care about, and for, their vulnerable and dependent older citizens must open-mindedly experiment and learn from each others’ failures and successes regarding the workplace/homecare interface. Decision-making capacity for older individuals is a knotty, fundamental ethical, legal, and clinical subject, and one deserving of continued and expanded attention by knowledgeable scholars and practitioners drawn from each of these realms. In this volume, each of the contributors mentioned above enthusiastically adds to the scholarly and clinical attention that this important subject commands and that, we hope, the reader will find useful. Marshall B. Kapp Editor

REFERENCES Carney, M. T., Neugroschl, J., Morrison, R. S., Marin, D., & Siu, A. L. (2001). The development and piloting of a capacity assessment tool. Journal of Clinical Ethics, 12(1), 17–23. Clow, H. E., & Allen, E. B. (1953). Psychiatric aspects of mental competency in the aging. Journal of the American Geriatrics Society, 1, 30–38, reprinted in Journal of the American Geriatrics Society, 50(11), 1879–1883. Gutheil, T. G., & Appelbaum, P. S. (2000). Clinical handbook of psychiatry and the law (3rd ed). Philadelphia: Lippincott Williams & Wilkins. Howe, E. G. (2001). How to determine competency. Journal of Clinical Ethics, 12(1), 3–16. Kapp, M. B. (2003). The law and older persons: Is geriatric jurisprudence therapeutic? Durham, NC: Carolina Academic Press. Kapp, M. B., & Mossman, D. (1996). Measuring decisional capacity: Cautions on the construction of a “capacimeter.” Psychology, Public Policy and Law, 2, 73–95. McCullough, L. B., Molinari, V., & Workman, R.H. (2001). Implications of impaired executive control functions for patient autonomy and surrogate decision-making. Journal of Clinical Ethics, 12(4), 397–405. Royall, D. R. (2002). Back to the future of mental capacity assessment. Journal of the American Geriatrics Society, 50(11), 1884–85. Skene, L. (2002). Dementia: Legal issues in consent. Australian Family Physician, 31(4), 329–332. Volicer, L., & Ganzini, L. (2003). Health professionals’ views on standards for decisionmaking capacity regarding refusal of medical treatment in mild Alzheimer’s disease. Journal of the American Geriatrics Society, 51(9), 1270–1274.

Part I

DECISION-MAKING CAPACITY AND OLDER PERSONS

This page intentionally left blank

Ethics, Law, and Aging Review, Vol. 10, 2004 © 2004 Springer Publishing Company

Chapter 1

Commitment, Relationship, Voice: Cornerstones for an Ethics of Long-Term Care Michele Mathes, JoAnne Reifsnyder, and Maureen Gibney

T

he lifelong task of forming a meaningful life story continues for those in long-term care, even when others must help in crafting the narrative.1 Whether or not they have chosen to enter residential care, persons living in nursing homes face many medical and “everyday” decisions (Caplan, 1990; Powers, 2001) that can affect how the continuity of the self is perceived. Decisionmaking may be complex even when residents are able to express their wishes clearly. However, staff members often must grapple with the basic question of whether or not the care receivers have decision-making capacity. Integral to this concern is the question of how to “hear” the voices of residents when they may no longer be able to tell their own stories. This chapter describes an education program developed to guide nursing home caregivers through an ethical reasoning process based on the commitments made to care recipients within the relational and narrative contexts of care in nursing homes. Among those tasks is working with care receivers whose decision-making capacity is compromised.

3

4

Decision-Making Capacity and Older Persons

AUTONOMY AND DECISION-MAKING CAPACITY IN LONG-TERM CARE Autonomy, imported into the long-term care setting from acute care, has had an evolving adaptation to the demands of long-term care. Except in situations in which the move to long-term care is clearly temporary, the long-term care setting becomes “home” to a resident, however well or poorly it fills that role and whether or not the resident had wanted or chosen to move (Laird, 1979; Reinardy, 1995; Tulloch, 1975). Because residents live in a community of residents and staff, because staff have responsibility for meeting residents’ sustained medical, instrumental, and personal care needs, and because there often are nonmedical decisions that residents face, the principle of self-determination frequently requires modification. Interpreted as noninterference, adherence to autonomy may cause residents to be left on their own when they most need guidance. If autonomy is accorded secondary status in favor of beneficence, care receivers may be denied the opportunities to make choices that are consistent with their own sense of identity (Tulloch, 1990). Elaborations of autonomy designed to navigate these tensions and to integrate the principles of respect for residents’ values within the interdependent context of longterm care include “negotiated consent” (Moody, 1988) and defining “polarities” of autonomy (Collopy, 1988). In much of the literature devoted to reconsideration of autonomy within the context of residential care, the role of a person’s life story, as expressed in the person’s values and previous choices, has a central place. Staff in long-term care settings who try to discern the values of residents who cannot speak clearly for themselves encounter several complex variables in the decisional process. Residents may have outlived the persons in their lives who cared for them and may not have anyone other than staff who knows them at all, or they may have always been alone (Karp & Wood, 2003). Staff members may not understand the decision-specific nature of capacity, and global assumptions may be made about the ability to choose that are unwarranted. Contextual variables such as real or perceived regulatory constraints (Kapp, 1998), the mission and values of the particular institution, the degree to which staff members understand differing cultural values and the individual’s adherence to those values (Braun, Pietsch, & Blanchette, 2000; Hyun, 2002), and staff members’ roles and attitudes (Mullins, Moody, Colquitt, Mattiason, & Andersson, 1998) may affect the decision-making process. Families of residents may have markedly disparate views of each others’ roles and of their right to speak for residents, and family caregivers may have experienced concerns in the resident’s move from community-based to residential care (Dellasega & Nolan, 1997; Kellett, 1999). Institutions may have more or less elastic views of what is encompassed in the surrogate role and may defer all decisions, even those residents could make, to family members (Kapp, 1998).

Commitment, Relationship, Voice

5

PROMISES TO KEEP: CREATING AN ETHICAL CULTURE FOR LONG-TERM CARE Given the inherent uncertainties in the responsibility to heed the residents’ narrative, staff members need the opportunity to build ethical reasoning skills. Promises to Keep: Creating an Ethical Culture for Long-Term Care, an ethics education program developed by the Center for Advocacy for the Rights and Interests of the Elderly (CARIE),2 offers a framework and decision-making process for guiding and improving ethical decision-making in long-term care. Since 1999, CARIE has presented ethics education programs to long-term care providers across Pennsylvania. As initially designed, the programs introduced participants to the ethical framework referred to as “principlism”3 (Beauchamp & Childress, 1993; Clouser & Gert, 1990) and encouraged them to use this approach to resolve ethical dilemmas presented as case studies and vignettes. We observed, however, that it often seemed that a part of the case story could not be brought within the principlist framework. As we repeatedly witnessed program participants struggle to resolve ethical dilemmas by applying the standard four biomedical principles, we became convinced that what was needed was a new ethical framework that captured the special ethical nature and challenges of long-term care, as well as a process for making ethical decisions regarding care issues as they arise in the long-term care setting. The lack of comprehensive ethics education programs for long-term-care providers and the inadequacy of the prevailing biomedical ethics model were behind our efforts to develop a curriculum focused exclusively on the substance and process of ethical decision-making in long-term care.

Care Within the Long-Term Care Context Most thinking about clinical biomedical ethics has taken place within the context of acute care medicine (Collopy, Boyle, & Jennings, 1991). The nature and concerns of long-term care, however, are profoundly different from those of acute care. For example, whereas acute care focuses primarily on discrete physical problems, long-term care involves the “global” well-being of the resident, including emotional, spiritual, psychological, and social well-being, in addition to physical health. Moreover, in acute care the exclusivity of the doctor–patient relationship historically has been sacrosanct. In long-term care, the resident is understood to exist within a web of valued relationships with family members, friends, and staff, relationships that may be supported and strengthened by encouraging inclusion in rather than exclusion from care. Also, acute care encounters between physicians and patients are, for the most part, episodic and focused on the provision of medical care. Depending on a person’s health care needs, one might see a particular doctor regularly for a period of time, not see a particular physician for months or even years at a time, or may have only a single consultation. Long-term care, in

6

Decision-Making Capacity and Older Persons

contrast, is continuous and ongoing. Within the prevailing medical ethics paradigm, the relationship between doctor and patient is conceptualized as one between independent and autonomous agents. The reality of long-term care, however, is quite different. Care recipients most often have physical dependencies and/ or suffer from dementing illness. In facility-based care, the experience of dependency is magnified by the sheer variety of ways in which the quality of a resident’s daily life is reliant upon facility staff. Finally, in acute care, at least traditionally, the interests of individual patients do not compete with each other; rather, the physician’s ethical obligation to each patient is discrete. In long-term care, residents’ ethical claims can be, and regularly are, in tension with one another. When we considered the fundamental differences between the experience and goals of acute care and those of long-term care, it became evident that the prevailing bioethical model, developed to reflect the values and obligations within acute care, was inadequate to address the ethical issues confronting staff working in long-term care. We believed that, to succeed in developing an ethical framework that more accurately reflects the reality and scope of the ethical issues entailed in providing long-term care, we needed to have long-term care providers tell us directly about their actual responsibilities. We began asking the participants in CARIE’s longterm care ethics education program to identify what they understood their duties to residents to be. More specifically, we asked the following question: When a longterm care facility opens its doors and, in effect, invites an elder to come live there, what responsibilities have the facility and its staff assumed with respect to that elder? Not surprisingly, the providers came forward with literally scores of such responsibilities. Long-term caregivers’ descriptive accounts of their responsibilities were integrated with CARIE’s concerns and experience as an elder advocacy agency and discussions of the normative values in long-term care contained in the literature. The result is Promises to Keep: Creating an Ethical Culture in LongTerm Care, an ethics education curriculum that proposes commitment to the resident as the ethical basis of the long-term care endeavor.

Description of the Curriculum: The Five Commitments of LongTerm Care As we studied the array of responsibilities identified by long-term care providers, we noticed that they fell naturally within five overarching themes: health, safety, pain and suffering, respect for personhood, and life story. We then framed each of these themes as a commitment that the long-term care provider makes to the care recipient. These are commitments to (1) preserve and promote the resident’s health, (2) protect the resident’s safety, (3) palliate the resident’s pain and suffering, (4) practice respect and care for the attributes of personhood, and (5) provide opportunity and support for the continuation and completion of the resident’s life story. An ethical long-term care decision is one that honors these commitments. The most ethical decision is one that honors the five commitments most fully, whether the

Commitment, Relationship, Voice

7

subject matter is life-sustaining treatment or bathing. Thus, these commitments both describe the ethical nature and content of long-term care and provide a framework for making ethical care decisions. To identify the above as the five commitments of long-term care is not to say that they necessarily define the entire universe of ethical obligations in the provision of care. Long-term care staff bring the whole of their humanity and experience through the door of the facility. The five commitments of long-term care are not in lieu of the ethical obligations we have to one another as fellow human beings. They articulate the special obligations that we assume when we choose to take on the special task of providing long-term care for another. Of the five commitments comprising the ethical framework for long-term care, the commitments to preserve and promote the resident’s health, protect safety, and palliate pain are clinical in nature. Fulfilling these commitments requires clinical training, skill, judgment, and attention to best practice models. To honor these commitments, long-term care staff must have available the human and material resources necessary to meet residents’ clinical needs. There are a multitude of avenues for obtaining education and training on clinical issues, and it is not a purpose of Promises to Keep to provide such training. Yet there are important ethical dimensions within these issues that are specific to longterm settings and that we discuss within the program. For example, within the context of long-term care, the preservation and promotion of health have a different emphasis and different goal than they might in the world of acute care. By and large, those receiving long-term care suffer with chronic illnesses such as diabetes, arthritis, Parkinson’s disease, cancer, congestive heart failure, chronic obstructive pulmonary disease, and/or dementia. Health in these circumstances relates more to the maximization of functional ability than to resolving the underlying condition or disease. In honoring a commitment to preserve and promote the health of the resident, therefore, we may be focusing our efforts on how disease and its various treatment options will affect residents’ ability to participate actively in their lives in the nursing home. Whereas the preservation and promotion of health are concerned with addressing bodily processes, the commitment to protect the resident’s safety addresses the resident’s interaction with the external environment. How can the environment of the long-term care setting, human as well as physical, be created and/or arranged to provide a safe place for the care recipient to live? The commitment to protect a care recipient’s safety often is experienced as being in tension with one or all of the other four commitments. Honoring the commitment to enhance a resident’s functioning (e.g., mobility) may increase the risk of injury compared with encouraging the person to stay seated as much as possible. Similarly, protecting a resident’s safety may seem to conflict with practicing care and respect for the resident’s personhood or life story. Even adequate pain management may be viewed as incompatible with a concern for the resident’s safety. The dilemma posed by a tension between ethical commitments is irreconcilable only if one views such dilemmas

8

Decision-Making Capacity and Older Persons

as requiring yes-or-no, this-or-that solutions. In fact, the dilemmas that arise in long-term care rarely require, or are even susceptible to, such dichotomous solutions. This will be explored more fully in the discussion below of the IDEAS for Ethical Decision-Making in Long-Term care decisional model. The third commitment addresses the palliation of pain and suffering for the recipient of long-term care. Although “pain” and “suffering” often are referred to as if they were a single experience, they in fact are distinct and separable (Randall & Downie, 1999). One may have great pain and yet not suffer, or one may have no pain at all and yet suffer deeply. Although pain is a physical symptom, suffering is emotional and spiritual in nature. The almost universal response to pain is to seek its reduction or, if possible, elimination, but those who suffer may seek to find meaning within the experience of suffering itself (Engelhardt, 2000). Honoring a commitment to palliate a resident’s pain and suffering requires that we be alert to the differences between the two, that we identify the most appropriate person to provide care (e.g., a physician, nurse, chaplain, social worker, psychiatrist, or psychologist), and that we acknowledge the need for effective intervention in response to these subjective feeling states as much as in response to more observable or measurable symptoms. The last two commitments are not clinical in nature. They involve the concepts of personhood and life story, about which much has been written but which remain, despite or as a result of efforts to define them, somewhat elusive. We explore these commitments in greater depth in order to clarify their meaning within the framework we have developed. Practicing Respect and Care for the Attributes of Personhood The commitment to practice care and respect for the attributes of personhood in the resident does not entail assessing whether the resident “qualifies” as a person. It simply calls for honoring, encouraging, and supporting in the resident the qualities that are associated with personhood and, where appropriate, deferring to their expression by the resident. Stated otherwise, fulfilling this commitment involves giving deference (respect) to the resident’s exercise of the qualities of personhood when the resident is capable of exercising those qualities and giving support and encouragement (care) when the resident’s ability to express such attributes independently is impaired. The extent to which the resident possesses such attributes is not at issue, nor are any legal or ethical rights or privileges at stake. What are these “attributes of personhood”? Within the long-term care ethics framework, they include not only cognitive qualities (self-awareness, intentionality, decision-making, agency) but noncognitive qualities as well (emotions, relationship, creativity). These qualities will be discussed individually. Self-awareness (“I am aware that there is a me”) is the recognition of one’s own existence as separate and distinct from other individuals. It is the recognition that I am not you and that I hold beliefs and feelings that are my own. I am aware of my experiences, including my emotions and intentions. It is because I am aware of

Commitment, Relationship, Voice

9

myself in this way that I experience such feelings as pride, embarrassment, shyness, and shame. Respecting the attribute of self-awareness in another calls for recognizing and affirming that the other person possesses ideas, feelings, and experiences that are distinct, and possibly different, from one’s own. For some long-term residents, dementing illness has impaired the ability to be self-aware in this way. Nonetheless, we express care for the inherent individuality of such residents when we respect their privacy, maintain confidences, are attentive to their personal needs and belongings, and ensure a sense of their dignity. Intentionality (“I can think about what I want to do”) is the ability to formulate purposes rather than behave purely instinctually. Practicing care and respect for resident intentionality involves identifying, acknowledging, and/or supporting the resident’s purposes or designs. In some cases, the resident will be able to articulate those intentions. In other cases, we must learn to assist residents in their formulation, as well as appreciate and respond to nonverbal expressions of intentions. Decision-making (“I can decide what I want to do”) is the process of considering the possible ways of accomplishing one’s intentions and making a choice among them. When a resident has the capacity required for a particular decision, a commitment to practicing care and respect for personhood often involves providing education (Engelhardt, 2000) to promote informed decision-making and then deferring to the resident’s decision whenever possible. When a resident’s decisional capacity is impaired, practicing care and respect for personhood means providing support for the exercise of the person’s residual capacity for decision-making. This might involve listening to help identify the problem (Engelhardt, 2000), simplifying options, exploring with the resident possible choices, selecting a particular time of day for discussing the matter, and choosing language that will be more easily understood. Agency (“I can make it happen”) refers to the capacity to initiate action. To say that we exercise agency means that we have the capacity to act in accordance with our intentions and decisions rather than be acted upon. I am exercising agency when I effectuate a decision on my own; I am also exercising agency when I invite someone to help me effectuate it. To fulfill a commitment to respect and care for the resident’s personhood requires recognizing residents as actors in themselves rather than as objects of others’ actions. Honoring this commitment, we do not set up impediments to residents’ acting in furtherance of their own intentions and decisions. Beyond that, we make available to residents the means and opportunity for executing their own decisions. When needed, we provide assistance to residents in carrying out their intentions and decisions, not those of their caregivers. Respect and care for the agency of residents means refraining from acting upon them in ways not consonant with their own purposes or decisions. How are the attributes of personhood manifested in everyday life in a nursing home? The following vignette is a simple example: It is two o’clock in the afternoon, and Mrs. Smith is sitting in her room. She is aware that she is feeling lonely and bored. She forms an intention to get out and find some other people with

10

Decision-Making Capacity and Older Persons

whom to talk. She considers several possibilities. She could go out to the common area and watch TV, she could join in the cooking class, or she could play bingo. She decides to join the cooking class. She walks down the hall to the kitchen if she is able, or she asks for help in getting herself there. Again, it would not be demonstrating respect for Mrs. Smith’s personhood for someone to come in and tell her that she is going to the cooking class and then take her there in her wheelchair when she has neither formulated the intention nor made the decision to go. Although philosophers’ definitions of a “person” usually stress cognitive abilities, our experience makes us keenly aware that a whole person is comprised of more than intellect. We are emotional and creative beings essentially connected to one another through relationships. Thus, honoring a commitment to respect and care for the personhood of a resident also requires being sensitive to, and empathetically responding to, the resident’s feelings. It means respecting and protecting the relationships that the resident brings into long-term care as well as the relationships formed within the long-term care setting, both with care providers and with other residents. It calls for providing opportunities for creative expression and experience and giving recognition to such efforts.

Providing Opportunity and Support for the Continuation and Completion of the Resident’s Life Story Why do people of all ages, by significant margins, cite nursing homes as the least preferred place to die (George H. Gallup International Institute, 1997)? Part of the answer no doubt lies in a belief by many that the move to a nursing home signals the end of one’s biographical life before one’s biological life has concluded, a distinction made by the philosopher James Rachels (Meilaender, 1995). In other words, for many, living in a nursing home represents the end of one’s individual life story even while one’s body continues to live. But surely this need not be the case. For each individual requiring long-term care, entering a nursing home is a chapter in a particular, unique, and ongoing life story. In order to understand and care for that person, we must know the life that we now are entering and of which we are necessarily becoming a part. We must ask, Who is this person? and must listen for the answer. Too often, most of the information we have about a resident comes from sources other than the resident. Medical records, admissions forms, and information from family members often are the basis for our knowledge of the resident’s “history,” which we accept as the account of who that person has been and is now. However, each of these narrative sources speaks in a voice that is its own, reflecting its own viewpoint, concerns, even biases. To care well for the person in front of us requires that we know that person not just through the prism of others’ eyes but, much more importantly, through the person’s own perspective. The awareness, sharing, and acknowledgment of one’s life story hold great value for any individual. Many of us spend a great deal of time engaged in giving and

Commitment, Relationship, Voice

11

receiving parts of our own and others’ stories. As explored below, this value is magnified for those who live within the context of long-term care. Bringing the resident’s own narrative into the long-term care setting is critical to the continuation of that life story in the following ways. (a) Maintain Self-Identity Our life story is how we know ourselves and locate ourselves with respect to the world and the people around us. Imagine, for example, that you were to awaken one morning with total amnesia about everything that had happened to you before you awoke. You have apparently suffered no injury and have the physical ability to go about your life much as you wish. How would you know what to do next? Where would you go? You would be desperate to know, Who am I?, to find the answers to such questions as, Where do I live?, Do I have a family?, and Where do I work? In short, you would be desperate to get your story back in order that you might know who you are. The move to a nursing home often deals a profound blow to the resident’s sense of self. Literally, the person’s place in the world changes. The resident’s relationships to those people and things that gave life meaning and shape, perhaps for decades, such as home, possessions, routines, and relationships with neighbors and others in the community, disappear or are dramatically altered. Encouraging residents to tell their stories, the stories that preceded and include the move to the nursing home, provides an opportunity over time for the creation of coherence out of what may initially feel like a story, and an identity, that is irreparably fractured. It permits the revisioning of the resident’s story as a single continuing life. Illuminates Meanings The events and choices of our lives derive their meaning from the way they fit together with what has gone before. For example, take the statement John is walking through the park. Now suppose you are told that John’s wife left him 10 days ago. He has lost weight, his eyes are red-rimmed, and his clothes are rumpled. It is 10:00 in the morning, and there are three businessmen who had a 9:30 appointment with him sitting in his office, but John is not going to his office. He is walking through the park. In the context of this story, we give a particular meaning to the fact that John is walking through the park. Now suppose that you are told instead that 18 months ago John was in a terrible car accident. He was in a coma for 4 days. After 5 weeks in the hospital, he was moved to a rehabilitation facility, where he lived for eight months. It is 10:00 on a Wednesday morning, and John is walking through the park. The identical fact takes on a completely different meaning when we are aware of the story of which it is a part. In order to know what something as seemingly simple as a walk in the park means to John, we need to know John’s story. In the same way, we need to know a resident’s story in order to know what the meaning of a particular decision is for him or her. What will it mean for Mrs. Logan to use a wheelchair? What will it

12

Decision-Making Capacity and Older Persons

mean to Mr. O’Malley to eat alone? How shall we understand Mrs. Jefferson’s anger? What meaning does life-sustaining treatment have for Mr. Geffin? The meaning of any of these decisions for the care recipient can only be understood if we know the story of which it is becoming the newest chapter. Individualize the Resident Charts and protocols are absolutely essential for identifying critical data, organizing them in an efficient and useful way, and responding with efficiency and consistency to care issues. They permit standardization of practice. Charting calls for communicating information about a resident in a particular voice, one that is professional and objective. Protocols are a way of recognizing what situations or cases have in common and responding in established, effective ways. Both are an integral part of providing good and efficient care, especially when time is the resource most at a premium. In the face of incentives to create commonalities, it is the particular facts of a resident’s life that keep that person’s individuality foremost and make that person’s “case” unique. It is what enables us to recognize how Mrs. Lopez’s wandering may be different from Mrs. Lyons’, how Mr. Caruso’s depression is different from Mrs. Hartley’s. Learning the resident’s story is a counterbalance to the tendency to see only what we have seen before and therefore expect to see again, our tendency to recognize the general similarities among care recipients but to miss the specific differences. Guides Decision-Making In situations in which a resident lacks the capacity to make care decisions and decisions must be made by surrogates or, in some cases, care providers, knowledge of the resident’s story can be of great help in making a decision that gives coherence to the person’s story and carries the story forward in a way that makes sense. Knowing the resident’s life story gives us a window through which we may discern the values, people, and things that were important to that person. Knowing a resident’s past choices about how to live can guide those who now must decide in the person’s stead. It permits decision-making that is consistent with the resident’s previously lived values, with the resident’s “ways.” It expands our ability to take the resident’s perspective, to discern the choice that person would have made himself were he able. Create Social Connection The value of learning a resident’s life story lies not only in the information that is imparted but in the communication of the story itself. The act of listening as residents tell their stories, not just at one sitting but over time, creates relationships and social connections. The experience of being listened to as one recounts one’s own story can be one of deep sharing. This storytelling may call forth reactions and responses from the listener, who may then share parts of his or her own life. The

Commitment, Relationship, Voice

13

forming of a relationship in this way offers an antidote to the isolation that often accompanies the experience of receiving long-term care. Help Sustain Memory The process of reminiscing can be an aid to memory. Accurate prompts, observations, questions, and comments from the listener may elicit further memories, reinforcing residents’ experiences of their own stories and focusing on pleasurable recollections that are relatively preserved and enhance their sense of satisfaction and connectedness. Encourage Feelings of Empathy, Compassion, and Understanding. In hearing a resident’s life story, the challenges overcome, ways in which the person cared for others, ambitions that went unrealized, events that gave pleasure, and times that brought sadness, our own emotions are engaged. We may be able to identify having feelings similar to that person’s and may have confronted some of the same challenges. Our differences may diminish, and the ways we are alike become apparent. We gain understanding, empathy, and compassion.

Ought Implies Can Too common in long-term care is the situation of the “unbefriended” resident suffering with dementia. These residents lack both the capacity to make decisions for themselves and a relative or friend who knows them well enough to make decisions that reflect what their own choices would have been. How do long-term care providers honor their commitments under such circumstances? A widely accepted precept of ethics is that “ought implies can.” In other words, saying that we ought to do something presumes that it actually is possible for us to do it. For example, it makes no sense to say that as a long-term care provider I have a personal moral obligation to cure Mr. Moore’s multiple sclerosis. Very simply, I cannot do that. However, I surely do have an obligation to provide him with the best and most complete care that I can. In the same way, with regard to the ethical framework discussed herein, the impossibility of fulfilling a particular commitment may relieve us of the moral obligation to do so. For instance, we cannot provide opportunity and support for the continuation and completion of the resident’s life story if we have no way of learning the story as the resident would have wanted it told. It may not be possible to fulfill a commitment to respect a resident’s decisions if the resident lacks decision-making capacity. When faced with a commitment it is impossible to honor, we continue to be bound by our remaining commitments, including the preservation and promotion of health, protection of safety, and palliation of pain and suffering. It is essential, however, that “impossible” not be used to mean expensive, inconvenient, time-consuming, or problematic.

14

Decision-Making Capacity and Older Persons

IDEAS for Ethical Decision-Making in Long-Term Care The five commitments of long-term care set forth above describe the ethical foundation of long-term care. Having been derived from the responsibilities that longterm care providers identify as those they bear toward care receivers, they reflect the substance of ethical long-term care as actually practiced and lived by staff daily in the care they provide. Every so often, however, a situation arises in which it is unclear how best to fulfill these commitments. CARIE has developed a five-step process called IDEAS for Ethical Decision-Making in Long-Term Care (IDEAS) for working through such care dilemmas to reach ethical solutions. IDEAS constitutes a companion piece to the ethical framework described above. Each letter in the word IDEAS stands for a step in the decision-making process. These steps are (1) identify the ultimate issue(s) to be decided, stakeholders and their interests, and other decision points; (2) develop a resident narrative; (3) explore all conceivable responses to the issue; (4) assess each response in light of providers’ commitments to recipients of long-term care; and (5) select a course of action and create an implementation plan. Step 1. Identify the Ultimate Issue(s) to Be Decided, Stakeholders and Their Interests, and Other Decision Points It often is the case in discussions about ethics that one issue seems to raise a host of related issues. Such discussions often have great value in terms of unearthing concerns as well as expanding the understanding of the original problem and yielding insights about its solution. Nonetheless, one can lose sight of the original questions as these ancillary issues emerge. Clearly identifying the decision that ultimately needs to be made focuses and, when necessary, refocuses the ethical analysis on the resolution of the original dilemma. Although the IDEAS process is resident-centered, that is, possible responses to the issue are evaluated in terms of how well they fulfill the long-term care provider’s commitments to the resident, any resolution of the care dilemma must take into account the concerns of others who have significant interests at stake. Step 1 of the process goes beyond identifying just the immediate behavior issue or treatment choice for which an ethical solution is being sought. It includes identifying other stakeholders, those people whose interests are affected by the issue being addressed and who will be affected by its resolution, and the specific interests they have in the matter. By identifying each of these stakeholder interests, Step 1 of the process more fully sets out the issues that need to be addressed. A complete elaboration of the problem is essential for framing an adequate solution. A response that addresses the interests of the resident but does not respond to the concerns of the family and/ or staff in some way (e.g., with education, counseling, or the use of alternative dispute resolution resources) will not be a complete resolution of the problem. Decision points are those determinations that need to be made before the ultimate issue can be fully addressed. For example, before a care issue can be fully

Commitment, Relationship, Voice

15

considered, it might be necessary to consult with a psychologist or psychiatrist to determine the resident’s decisional capacity (Does the person have the ability to make this decision?), with a speech therapist to obtain a swallowing evaluation (Is a feeding tube necessary for adequate nutrition?), or with a physical therapist to assess the resident’s physical functioning (Is walking safe? Is a wheelchair needed?). Step 2. Develop a Resident Narrative Step 2 incorporates the commitment to provide opportunity and support for the continuation and completion of the resident’s life story into the decision-making process. As previously discussed, our life stories are how we know ourselves. The story we claim as ours both forms and reflects our sense of our own identity. Conversely, what we know or do not know of someone else’s life story colors our expectations, feelings, judgments, and understanding of that person. The truer our knowledge of another’s story is, the closer our expectations, feelings, judgments, and understandings of the person will mirror the person’s own perceptions. In order to be able to make the “right” decision for a particular resident it is necessary to appreciate the impact of the decision for that individual. Does a particular care decision make sense in light of the resident’s life story? Does it support the resident’s self-identity or threaten and perhaps even undermine it? The resident’s first-person account is central to the resident narrative. Such stories may be learned over time by eliciting and listening to the usual information about family and personal history, then going beyond that information to (1) ask questions that prompt the residents to reflect upon his or her life if he or she is able to do so (Why do people like you? What are you most proud of in yourself? In your life? What was the favorite time of your life?); (2) initiate conversations that encourage the resident to share parts of his and her past (What jobs did you have? What vacations did you enjoy?); (3) inquire about the meaning attached to precious objects, photos, special songs, particular activities, favorite foods, holidays, or special rituals; and (4) explore what age and illness or disability mean to the resident and what the resident’s hopes are for the future.The resident’s story can be shared orally and also may be expressed through writing, including a values history or advance directive, and by behavior communicating the person’s likes, dislikes, pleasure, pain, and so forth. All of these accounts should have a place in the resident’s chart. Some residents are no longer able to share their stories themselves; for them, it is not possible to develop a personal resident narrative. Even when it is possible, there may remain information that the resident simply does not have or cannot provide. Third-party information, such as medical and psychiatric history, the full psychosocial history, and anecdotal information from family and others within and outside the facility, is essential in making good care decisions but does not supplant the resident’s own account. Step 3. Explore All Possible Responses to the Issue Step 3 calls upon decision-makers’ creative energies in the form of brainstorming. Addressing the issues identified in Step 1, caregivers use imagination and the data

16

Decision-Making Capacity and Older Persons

gathered in Step 2. To encourage inventive approaches, at this stage no offered response should be excluded and the ideas generated should be accepted uncritically. Anything that can contribute to the resolution of the issue is an appropriate suggestion at this stage. Evaluation of the possible responses will take place in Step 4. Step 4. Assess Each Response in Terms of Providers’ Commitments to Recipients of Long-Term Care In Step 4 of the IDEAS process, decision-makers evaluate the array of possible responses developed in Step 3. Each possible choice is evaluated in light of (1) how effectively it fulfills the commitments to the resident, (2) whether it violates a commitment made to the resident, and (3) how well it can be integrated into a plan of action. Although the five commitments provide the framework for assessing how well the generated care options meet care providers’ ethical obligations, good ethical decisions ultimately depend on the good judgment and good will of the decision-maker(s). How the various possible responses are ultimately weighed and evaluated lies with those charged with the care decision. Step 5. Select a Course of Action Based on the assessment of how best to fulfill the commitments of long-term care in light of the possible care options, a course of action is developed to address the ultimate issue identified in Step 1. Rarely does the best solution to a care dilemma in long-term care consist of a single act. One of the contributions of the Promises to Keep program is to encourage the consideration of the full panoply of possible responses to an issue, from which a comprehensive course of action may be derived. The course of action that is developed should include not only those measures that meet the commitments to the resident, but also steps that address the concerns of other stakeholders whose interests will be affected by the course of action. Such steps may include education of staff and family members, grief counseling, efforts at alternative dispute resolution such as mediation, and innovative ways of including family in the plan of care. There also should be follow-up to evaluate how well the course of action actually addresses the issue. A record that respects the confidentiality of the resident (and complies with relevant provisions of the Health Insurance Portability and Accountability Act) should be kept of the original issue, decisions made, course of action that was implemented, and evaluation of the results. Over time, these records will develop as a resource to guide future ethical problem solving.

EVALUATION The ethics education curriculum has evolved as our thinking has evolved and as we reviewed and considered participants’ evaluation of the program. In 2003, we presented the first 1-day program based on the five commitments of long-term care

Commitment, Relationship, Voice

17

framework and the IDEAS decision-making process. The training includes an overview of applied ethics, introduces participants to CARIE’s ethical framework for long-term care, and affords the participants opportunities to practice applying the IDEAS decision-making process to ethical care dilemmas. The highly participatory training approach emphasizes the identification of ethical care dilemmas in everyday practice and the application of systematic ethical reasoning to analyze and resolve issues. Participants receive comprehensive written materials and practical tools to support their use of the IDEAS framework in their home facilities following the training. The two principal foci of the evaluation are the participants’ ethical reasoning capabilities and their intended and actual behavior change following the 1–day session. In this chapter, we have confined our discussion to aggregated responses from evaluations conducted in April, May, and June 2003. Selected evaluation items discussed in this chapter include participants’ (1) perceptions of the most frequent and troubling ethical care dilemmas in long-term care, (2) confidence in their ethical reasoning capabilities, (3) practice changes in the home setting following training, and (4) perceptions about ethics training needs in their home facilities.

Ethical Care Dilemmas in Long-Term Care One of our key training goals is to increase care providers’ recognition of ethical care dilemmas in long-term care settings, with particular emphasis on everyday issues that might go unnoticed or, if detected, generally elicit a standardized response in lieu of a resident-centered approach. In our pretraining survey, we asked participants how frequently they encountered ethical care dilemmas in their settings. Their responses indicated that ethical care issues were detected somewhat infrequently. As depicted in Table 1.1, the most frequent response was “more than once a year but less than monthly.” Viewed cumulatively, slightly greater than half of the respondents (64%) reported that ethical dilemmas occurred monthly or less often.

Table 1.1 Frequency With Which Ethical Dilemmas are Encountered (Pretraining Baseline) Frequency Once or twice a year More than once a year but less than monthly Once a month 2–3 times a month Once a week More than once a week but not daily Daily

Number (n = 75)

Percent

8 25 11 9 6 11 5

12 36 16 13 8 16 7

18

Decision-Making Capacity and Older Persons

Table 1.2 Most Frequently Occurring Ethical Care Dilemmas in Long-Term care Ranking (frequency of occurrence) Care Dilemma

1st

2nd

3rd

Advance directives Decision-making/Resident capacity Decision-making/Surrogacy End-of-life Resident behavior Facility resources

17 14 8 12 27 2

9 21 11 14 17 5

16 17 12 16 12 1

Note: Numbers represent the respondents who assigned that respective ranking to the item.

Types of Dilemmas Encountered In the earliest CARIE-sponsored ethics education sessions, we presented participants with an open-ended item about the types of dilemmas they encountered most frequently in long-term care. Analysis of the responses led to identification of six categories of ethical care dilemmas in long-term care. These are (1) advance directives, (2) decision-making/resident capacity, (3) decision-making/surrogacy (4) endof-life issues, (5) resident behavior, and (6) facility resources. These categories provided the basis for current rank-order evaluation items. As depicted in Table 1.2, resident behavior received the greatest number of rankings as the most frequently occurring care dilemma, followed by advance directives and issues concerning resident capacity for decision-making. The greatest number of respondents (n = 60) ranked decision-making/resident capacity as either first, second, or third, followed by resident behavior (n = 56). Facility resources received the fewest rankings in any category. Most Troubling Ethical Care Dilemmas We also were interested in the care dilemmas that participants perceived as most troubling. Using the same categories, we asked participants to identify a single category that they found “most troubling or difficult” and to provide an example. Table 1.3 illustrates the findings. As depicted, 37% indicated that resident behavior was most troubling. Although end-of-life issues reportedly occurred less frequently than decision-making/resident capacity issues, they were reported to be more troubling. Forty-six participants responded to the question, Can you briefly describe a recent example and what it is about this issue that makes it most troubling for you? A number cited examples of residents’ “acting out,” “aggressiveness,” and “difficult behaviors,” illustrating the challenges of providing everyday care. For example, a participant wrote about “a female resident with dementia and physical aggression behavior toward others. Some people in the facility feel she should be discharged, whereas others feel her plan of care can/should be improved. . . .”

Commitment, Relationship, Voice

19

Table 1.3 Most Troubling Ethical Care Dilemmas in Long-Term Care Care Dilemma

Number (N = 70)

Percent

8 8 10 15 26 3

11.4 11.4 14.3 21.4 37.1 4.3

Advance directives Decision-making/resident capacity Decision-making/surrogacy End-of-life Resident behavior Facility resources

Another participant related an incident in which the resident’s behavior raised issues concerning the ethical use of restraints: A resident . . . was combative during care to the point where he would hurt himself or others. . . . The resident’s behavior was fine at other times. (The) problem arose with type of restraints needed for the safety of the resident and staff—chemical vs. physical. Chemical would affect the resident [over the] long term and physical would only be used for short periods to complete care. . . .

Others provided examples of difficult end-of-life care issues, typically involving the intricacies of communication and challenges when residents who are approaching death cannot express their wishes: A male resident was admitted for terminal care . . . in a comatose state . . . admitted to be kept comfortable. Not able to decide on CPR [cardiopulmonary resuscitation]/no CPR due to his comatose state and he had no durable power of attorney . . . multiple children to different spouses . . . currently married to a woman who has no ability to say no CPR but wants him kept comfortable only. When his condition deteriorated, we were forced to transfer to the hospital.

Another offered an example that depicts the frequently encountered tensions between promoting residents’ health, palliation of pain and suffering, and protecting residents’ safety at the end-of-life: The resident’s family decided not to amputate his gangrenous foot. The difficulty for me arises related to complications . . . sepsis, etc. [Other issues include] the quality of the resident’s remaining life, pain management, and the family’s questionable motivation . . . the family refuses to accept hospice services. The difficulty is related to the resident and family not getting the best service they can.

Building Skills in Ethical Decision-Making Another of our training goals was to increase participants’ self-confidence and ability in ethical reasoning. To measure changes in confidence levels, we created

20

Decision-Making Capacity and Older Persons

Table 1.4 Relationship of the IDEAS Process to the Confidence Inventory IDEAS decision-making process

Confidence Inventory (examples)

• Identify problems in long-term care that require an ethical solution. • Specify all of the people affected by a problem. • Identify decision that needs to be made. • Compile a narrative that describes the (2) Develop a resident narrative. personal stories of the residents involved. (3) Explore all conceivable responses • Generate a broad array of options for resolving the problem. to the issue. • Analyze the degree to which each option for (4) Assess each response in light of resolving a problem meets the ethical providers’ commitments to recipients obligations to the resident. of long-term care. (5) Select a course of action and create • Identify the best solution to an ethical problem. an implementation plan. • Present and defend a dissenting viewpoint. (1) Identify the ultimate issue(s) to be decided, stakeholders and their interests, other decision points.

an instrument using self-reported, serial ratings of confidence on 21 items before and after training. Participants were asked to rate “confidence in your ability to carry out each element, both before and at the completion of the training” on a 0– 10 Likert-type scale (0 representing “not at all confident” and 10 representing “completely confident”). The 21 items represent critical elements of ethical problem solving in long-term care facilities that were derived from prior qualitative data and the components of the IDEAS process. Examples of items included in the Confidence Inventory are displayed in Table 1.4. Our early work with this instrument’s development included psychometric testing. We performed factor analysis using Varimax rotation with Kaiser normalization. Items loaded on three principal factors. Reliability of each of the three factors was high (Cronbach’s alpha = .9434, .9701, and .8347, respectively for factors 1, 2, and 3). Using this factor solution, we calculated respondent subscores for each of the three factors. We then compared mean pre- and posttraining subscores using the paired samples t-test. Mean postscores for each of the three subscales were significantly higher than mean prescores (p = .000), suggesting that participants’ confidence in their ethical reasoning capabilities increased through participation in the ethics training.

Follow-Up Surveys Our third goal was to effect sustainable, individual behavior change after the education program. To evaluate posttraining behavior changes, we mailed follow-up

Commitment, Relationship, Voice

21

surveys at 3 months posttraining. We included parallel items from the pretraining survey, such as frequency of ethical care dilemmas, in addition to items evaluating use of the IDEAS process and related concepts in the home facility following training. We also asked respondents to share their perception of the need for staff training about ethical care dilemmas in their facilities. For the group of participants discussed in this chapter, our return rate was 31 of 75, or 41%. Dilemmas Encountered Following Training We asked respondents to tell us whether, in the preceding 3 months, they had identified ethical dilemmas “more frequently than before training,” “less frequently than before training,” or “no more or less frequently than before training.” One third of the respondents (10 of 29) indicated that they were identifying ethical dilemmas “more frequently than before training.” None indicated that they were identifying care dilemmas less frequently. We again asked respondents to tell us which category of care dilemmas they had encountered most frequently and which was most troubling. Resident behavior continued to be the most frequently occurring and troubling dilemma. Table 1.5 depicts the distribution of responses. Application of the IDEAS Process and Concepts We asked respondents to tell us on average, how many times they had used the IDEAS process for decision-making to analyze an ethical dilemma in the preceding 3 months. Response categories included “never,” “used the concepts but not the process,” “1–2 times,” “3–5 times,” “6–8 times,” and “8 or more times.” We found that 30% of the participants had applied the concepts and that 26% had used the IDEAS process at least 1 or 2 times in their home settings. Finally, many respondents had taught other staff about the IDEAS process, used the IDEAS worksheet to guide discussion of an ethical care dilemma, or provided other staff with the ethics education session materials. Table 1.5 Ethical Care Dilemmas That Occur Most Frequently and Are Most Troubling: 3–Month Posttraining Follow-Up Most Frequent (N = 29) Care Dilemma Advance directives Decision-making/resident capacity Decision-making/surrogacy End-of-life Resident behavior Facility resources

Most Troubling (N = 27)

Number

%

Number

%

2 4 1 6 15 1

7 14 3 21 52 3

4 5 4 1 12 1

15 19 15 4 44 4

Decision-Making Capacity and Older Persons

22

Table 1.6 Perceived Need and Desire for Ethics Training for RNs, LPNs, and Nurse’s Aides Perceived need for training (N = 29) (N = 29)

Perceived desire for training

Group

Very Much Somewhat

Not at All Very much Somewhat Not at All

RN LPN Nurse’s aide

18 (62%) 24 (83%) 20 (69%)

1 (4%) 1 (3%) 0

10 (34%) 4 (14%) 9 (31%)

11 (38%) 15 (52%) 10 (34%)

16 (55%) 14 (48%) 17 (59%)

2 (7%) 0 2 (7%)

Need for Training in the Facilities Because participants in our off-site ethics education programs have almost exclusively been managers or administrators, we asked respondents to tell us about the need for ethics training for direct care providers in their facilities. We presented them with types of care providers—registered nurse (RN), licensed practical nurse, and nurse’s aide–and asked to what extent they perceived that these groups needed and desired ethics training. Respondents indicated the highest need among LPNs and aides. For all three groups, the perceived need for training was greater than the perceived desire among those groups to receive training. Distribution of responses is depicted in Table 1.6.

CONCLUSION Any ethical framework requires that relevant factors be weighed and evaluated in accordance with some set of criteria, values, or standards, and that a judgment be made regarding the right thing to do. The five commitments to long-term care recipients discussed above describe an ethical foundation for long-term care and provide a basis for making ethical care decisions. Further, our evaluation of perceptions and actions following ethics education using the IDEAS framework suggests that participation increases participants’ recognition of ethical care dilemmas and self-confidence in addressing and resolving such issues. The consistency in numbers of participants in our off-site ethics education programs, combined with those participants’ perceptions about staff needs in their own facilities, points to a continued need for ethics education in long-term care. The five commitments and the IDEAS process offer a new framework for ethical behavior in long-term care that contributes to care providers’ ability to identify ethical care dilemmas and provide a process for systematically examining and sensitively resolving everyday issues.

ACKNOWLEDGMENTS The development of Promises to Keep: Creating and Ethical Culture for Long-Term Care was supported with funding from the Pennsylvania County Commissioners Association.

Commitment, Relationship, Voice

23

NOTES 1. Although long-term care is provided in a variety of settings, as used in this chapter, the term long-term care is used to refer to facility-based care. 2. The Center for Advocacy for the Rights and Interests of the Elderly is a not-for-profit organization committed to improving the well-being, rights, and autonomy of older Americans through advocacy, education, and action. It is located in Philadelphia, Pennsylvania. 3. “Principlism” refers to the biomedical ethics approach that posits four fundamental principles of medical ethics: beneficence, nonmaleficence, respect for autonomy, and justice.

REFERENCES Beauchamp, T., & Childress, J. (1993). Principles of biomedical ethics (4th ed.) New York: Oxford University Press. Braun, K. L., Pietsch, J. H., & Blanchette, P. L. (2000). Cultural issues in end-of-life decision-making. Thousand Oaks, CA: Sage. Caplan, A. L. (1990). The morality of the mundane: Ethical issues arising in the daily lives of nursing home residents. In R. A. Kane & A. L. Caplan (Eds.), Everyday ethics: Resolving dilemmas in nursing home life (p. 375). New York: Springer. Clouser, K. D., & Gert, B. (1990). A critique of principlism. Journal of Medicine and Philosophy, 15(2), 219–236. Collopy, B. J. (1988). Autonomy in long-term care: Some crucial distinctions. Gerontologist, 28(Suppl), 10–17. Collopy, B. J., Boyle, P., & Jennings, B. (1991). New directions in nursing home ethics. Hastings Center Report, 21(2), S1–S16. Dellasega, C., & Nolan, M. (1997). Admission to care: Facilitating role transition amongst family carers. Journal of Clinical Nursing, 6(6), 443–51. Engelhardt, H. T. (2000). The foundations of Christian bioethics. Lisse, Netherland: Swets & Zeitlinger. George H. Gallup International Institute. (1997). Spiritual beliefs and the dying process: A report on a national survey. Retrieved from http://www.ncf.org/reports/program/ rpt_fetzer/rpt_fetzer. Hyun, I. (2002). Waiver of informed consent, cultural sensitivity, and the problems of unjust families and traditions. Hastings Center Report, 32(5), 14–22. Kapp, M. B. (1998). Our hands are tied: Legal tensions and medical ethics. Westport, CT: Auburn House. Karp, N., & Wood, E. (2003). Incapacitated and alone: Health care decision-making for the unbefriended elderly. Washington, D. C. : American Bar Association. Kellett, U. (1999). Transition in care: Family carers’ experience of nursing home placement. Journal of Advanced Nursing, 29(6), 1474–81. Laird, C. (1979). Limbo. Novato, CA: Chandler & Sharp. Meilaender, G. C. (1995). Body, soul, and bioethics. South Bend, IN: University of Notre Dame Press. Moody, H. R. (1988). From informed consent to negotiated consent. Gerontologist, 28(Suppl), 64–70.

24

Decision-Making Capacity and Older Persons

Mullins, L. C., Moody, L., Colquitt, R. L., Mattiason, A.-C., & Andersson, L. (1998). An examination of nursing home personnel’s perceptions of residents’ autonomy. Journal of Applied Gerontology, 17, 442–61. Powers, B. A. (2001). Ethnographic analysis of everyday ethics in the care of nursing home residents with dementia: A taxonomy. Nursing Research, 50(6), 332–39. Randall, F., & Downie, R. S. (1999) Palliative care ethics: A companion for all specialties (2nd ed). New York: Oxford University Press. Reinardy, J.R. (1995). Relocation to a new environment: Decisional control and the move to a nursing home. Health and Social Work, 20(1), 31–8. Tulloch, G. J. (1975). A home is not a home. New York: Seabury Press. Tulloch, G. J. (1990). From inside a nursing home: A resident writes about autonomy. Generations, 14(Suppl), 83–5.

Ethics, Law, and Aging Review, Vol. 10, 2004 © 2004 Springer Publishing Company

Chapter 2

The Capacity to Decide to Remain Living in the Community Leo M. Cooney Jr. and John A. Keyes

F

reedom of choice is one of the most basic of American rights. The freedom to live where one chooses is part of that fundamental right. Nonetheless, this right often is challenged when older individuals with cognitive deficits demonstrate problems with self-care. When older individuals act in an eccentric and unsocial manner, family members, community agencies, and neighbors often seek to have physicians and judges place these individuals in nursing homes. The pressure raises issues of medicine and law, focused on an individual dilemma for each person. Each situation is unique, and the risk of continuing to leave a person alone must be balanced with each individual’s rights and the potential risk of nursing home placement. Clarke and colleagues applied the term Diogenes syndrome to individuals with extreme self-neglect. These individuals often are unkempt in appearance, have spoiled food, garbage, or hoarded material cluttering the home, and are felt to live in an unsanitary home environment (Clark, Mankikar, & Gray, 1975; Cooney & Hamid, 1995). Diogenes of Sinope was a Greek cynic philosopher of the fourth century B.C. who practiced self-control with minimal diet and clothing, but did not demonstrate self-neglect.

25

26

Decision-Making Capacity and Older Persons

Extreme cases of self-neglect can be easily adjudicated. However, physicians often are asked to evaluate individuals who demonstrate various levels of selfneglect and are thought to be at risk for harm if they continue to live alone in the community. These individuals demonstrate patterns of self-care, judgment, and decisions in financial and personal manners that raise concern about their ability to live alone. These concerns are often raised when an older individual is ready to be discharged from the hospital to home. Home care and community agency staff often inform the physicians and discharge planners that this is an “unsafe discharge” (Daly, Sawchuk, & Wertenberger, 2000; Macmillan, 1994), and that the person should be placed in a nursing home. Such a placement often produces its own risks and unhappiness for the individual. The final solution to this dilemma is rarely fully satisfactory, as every action has risk. The physician and courts must balance respect for the individual’s autonomy with concerns for the risk of harm to that individual or society. The inherent authority and responsibility of a benevolent society to intervene, even over objections, to protect people who cannot protect themselves is termed parens patriae (literally, “father of the country”) (Iris, 1988). There was reference to this authority as early as fourteenth century English jurisprudence. Parens patriae is now rarely used in U.S. law, and this authority has very limited applicability in U.S. society. The principal component of American law in which this doctrine still has a role is that pertaining to conservatorship statutes. No other statutes, albeit with good intent, have such an intrusive authority in a noncriminal context. The ultimate determination that an individual should be removed from his or her home is made by the courts. A person does not lack the capacity to decide where he or she should live just because that individual does things that others feel are eccentric or risky. Rather, the determination that the patient is incapable of making choices about his or her living environment requires a judgment that the individual is incapable of making a decision or of understanding the consequences of that decision. A judgment of incompetence is based on an assessment of an individual’s ability to make a decision and carry out a plan. The terms capacity and competency are related but distinct concepts. Capacity denotes a clinical status as judged by a health care professional; competency denotes a legal status as determined by a judge (Marson, 2001). A normal adult has a number of different capacities, including the capacity to consent to medical treatment, manage financial affairs, and manage personal affairs. Each of these capacities involves a distinct combination of functional abilities and skills. Different standards or thresholds may be applied in determination of either general competency or specific competency. In the United States, different jurisdictions set different standards for the determination of disability and capacity. The subjective nature of the final determination of capacity can be recognized by reviewing the Connecticut statute that covers “protected persons and property”: .

Capacity to Decide to Remain Living Alone

27

“Incapable of caring for one’s self” means a mental, emotional, or physical condition resulting from mental illness, mental deficiency, physical illness or disability, chronic use of drugs or alcohol, or confinement which results in the person’s inability to provide medical care for physical and mental health needs, nutritious meals, clothing, safe and adequately heated and ventilated shelter, personal hygiene and protection from physical abuse or harm and which results in endangerment to such person’s health. “Incapable of managing his or her affairs” means that a person has a mental, emotional or physical condition resulting from mental illness, mental deficiency, physical illness or disability, chronic use of drugs or alcohol, or confinement, which prevents that person from performing the functions inherent in managing his or her affairs, and the person has property which will be wasted or dissipated unless proper management is provided, or that funds are needed for the support, care, or welfare of the person or those entitled to be supported by that person and that the person is unable to take the necessary steps to obtain or provide funds which are needed for the support, care, or welfare of the person or those entitled to be supported by such person. Conn. Gen Stat. §45a-644(c).

Such definitions as “inability to provide” and “prevents that person from performing” give a great deal of leeway to the court in its determination of the capacity of an individual. Capacity, to the courts, usually implies that there are varying levels of ability, depending on the level of the decision-making task for the individual. As the courts assess an individual’s ability to make decisions about living circumstances, they need to have a clear understanding of 1) how much of his or her care the patient can provide, 2) what decisions the patient can continue to make, 3) what the risks are of not intervening, and 4) how far the intervention should go. The final decision to allow an impaired individual to remain living alone in the community is always a calculated risk. The risk of danger to the individual and the community, however, must be balanced against the risk of the impact of a forced confinement in a nursing home on the individual. As a court assesses risk, it must have information that can establish the cognitive ability of the individual; the judgment skills of the individual, particularly regarding the choice of whom to trust and from whom to accept advice and help; the activities and behaviors of the individual that put him or her at risk of endangerment; and the ability and willingness of the family and community resources to deal with these risky behaviors. Common behaviors putting the individual and community at risk include leaving pots burning on the stove, risking fires; cluttering the home to such an extent that it is a fire or public health hazard; wandering, particularly in an unsafe environment; being taken advantage of by unscrupulous individuals; and failure to cooperate with care providers. Families and community agencies often can deal with the first two examples by disconnecting stoves and regularly cleaning the home. Wandering behavior is more difficult to manage, as it may call for round-the-clock supervision. Placing trust in the wrong individual, however, can be the most difficult behavior to manage. Individuals who trust, follow the advice of, and accept appropriate assistance from

28

Decision-Making Capacity and Older Persons

family members and community services often can be kept at home despite major deficits. Individuals who refuse help from appropriate agencies and family members and place trust in inappropriate individuals are at high risk of nursing home placement. The response of an individual to a plan usually predicts whether that plan will succeed. In order to make a capable decision, an individual first must be able to understand fully the information being provided and the consequences of the decision being made, and be able to communicate that decision (Appelbaum & Grisso, 1988). The information processing aspect of decision making depends on cognitive ability. Short-term memory deficits may limit the amount of information that the patient can absorb for processing. Deficits in knowledge, verbal learning, and recall adversely affect an individual’s ability to comprehend complex verbal information necessary for the decision. Global cognitive deficits certainly impair this first component of the decision process. The conceptual ability to make a decision and understand the consequences of that decision is more complex and involves aspects of cognitive function often not measured by simple mental status tests. Global measures of mental impairment, such as the Mini Mental Status Exam and the Clinical Dementia Rating Scale, often are not useful in estimating a person’s capacity to make financial or medical decisions. Factors in the executive domain of mental status, including loss of task, nonresponsive answers, and loss of detachment, often are better predictors of declining competency performance.

TESTS OF DECISIONAL CAPACITY A number of investigators have developed instruments designed to evaluate the capacity of individuals to make decisions. To date, all of these instruments have been designed to evaluate the competency of an individual to give informed consent, write advance directives, or make medical decisions. The Hopkins Competency Assessment Test consists of a short essay describing informed consent and durable power of attorney, followed by six questions about the material presented in the essay. The score on this test ranges from 0 to 10. Versions of the essay at the 13th, 8th, and 6th grade reading levels have been prepared. The examiner reads the essay and administers a questionnaire. If the subject scores 8 points or higher on the 13th grade version of this instrument, the examination is ended and the score recorded. If the patient scores 7 or less, an examiner reads out loud the eighth grade version of the assessment test and administers the same questionnaire. If the subject scores 7 or less, the examiner reads aloud the sixth grade version, administers the questionnaire, and records the patient’s score. When 41 medical and psychiatric inpatients were administered this test, then evaluated for their competency by a forensic psychiatrist, all 14 incompetent patients scored 3 or less on the test; the remaining 27 patients, rated clinically competent, scored 4 or

Capacity to Decide to Remain Living Alone

29

more. The test performed better than the Mini Mental Status Exam in its sensitivity and specificity for competence (Janofsky, McCarthy, & Folstein, 1992) The Capacity to Consent to Treatment Instrument (CCTI) consists of two specialized clinical vignettes (A–Neoplasm, B–Cardiac) designed to test competency under five distinct standards of consent capacity. Each vignette presents a hypothetical medical problem and symptoms, with two treatment alternatives and associated risks and benefits. The vignettes were written at a fifth to sixth grade reading level. The subject is required to consider two different treatment options with associated risks and benefits. After simultaneously reading and listening to oral presentation of a vignette, subjects answer questions designed to test competency under five established standards: legal standard 1—the capacity simply to evidence a treatment choice; legal standard 2—the capacity to make a reasonable treatment choice; legal standard 3—the capacity to appreciate the emotional and cognitive consequences of a treatment choice; legal standard 4—the capacity to provide rational reasons for a treatment choice; and legal standard 5—the capacity to understand the treatment situation and choices (Marson, Chatterjee, Ingram, & Harrell, 1996; Marson, Ingram, Cody, & Harrell, 1995). The CCTI has a detailed and well-operationalized scoring system for each legal standard of each vignette. The scoring system permits evaluation of a subject’s competency performance and competency status by a legal standard. When this instrument is used in patients with Alzheimer’s disease, the five legal standards for competency appear to be hierarchical in difficulty. These patients had increasing difficulty with the last three legal standards of competency (LS3, LS4, and LS5) (Marson, Cody, Ingram, & Harrell, 1995). The MacArthur Competence Assessment Tool-Treatment is an example of a semistructured interview that allows the clinician to test the individual’s ability to make a specific decision. The clinician reviews with the patient the patient’s relevant medical information, including the nature of the patient’s condition, recommended treatment with benefits and risks, and alternative treatments. The patient then declares his or her choice of treatment and how this choice was made. This process includes questions that assess the patient’s ability to understand, appreciate, and reason about the relevant information and make a clear expression of a choice of treatment. The instrument assesses a patient’s competence to make treatment decisions by examining capacities in four areas: understanding information relevant to one’s condition and the recommended treatment, reasoning about the potential risks and benefits of choices; appreciating the nature of the situation and the consequences of one’s choices, and expressing a choice. Understanding is assessed by determining the patient’s ability to restate the information given to him or her about the medical condition and treatment choices. Reasoning is assessed by reviewing the patient’s explanations about his or her choices, the comparison of alternatives, and whether final choices follow logically from the explanations of the patients (Grisso, Appelbaum, & Hill-Fotouhi, 1997). Adaptations of the MacArthur instrument have been developed to determine a patient’s ability to give informed consent to participate in a clinical research project

30

Decision-Making Capacity and Older Persons

and to determine competency to stand criminal trial. We are not aware of any use of this instrument to assess capacity to make living choices. The above tests all use clinical vignettes in the evaluation of competency to make a medical decision. Although these vignettes can provide a standardized basis for evaluating some of the capacities that are important in decision making, they are intended to assist, not to displace, the clinician’s assessment of capacity. Molloy and colleagues at McMaster University have developed a capacity assessment process (Molloy, Darzins, & Strang 1999). This process measures global capacity, domain-specific capacity, and decision-specific capacity. Domain-specific capacity includes the ability to make an advance directive, a will, property decisions and personal care decisions, to stand trial, or to make health care decisions. In each domain, there is a spectrum or hierarchy of decisions ranging from simple to complex. Individuals may be capable of making simple decisions but incapable of making more complex decisions. The goal of any comprehensive capacity assessment process is to determine where the individual’s capacity lies. Decision-specific capacity should be assessed in domains such as health, personal care, and property where there is a hierarchy of decisions. A capable person knows the context of the decision at hand and the choices available, and appreciates the consequences of specific choices. The McMaster process involves six steps: (1) performing the capacity assessment only when there are valid triggers present; (2) engaging the person being assessed in the process; (3) gathering information to describe the context, choices, and their consequences; (4) educating the person about the decision; (5) performing the assessment; and (6) taking action dependent on the results of the assessment. In step 2, individuals whose capacity is to be assessed are informed that their capacity has been called into question, that they or others are at risk because they lack capacity, and that the capacity assessment will proceed and they are encouraged to participate. They are informed that it is in their best interest to become involved so they have every chance to prove capacity. The steps followed in the assessment process are described and they are told that if the assessment leads to a declaration of capacity, they will continue to make decisions. If they are deemed incapable, a substitute will be appointed to make decisions for them. The assessor’s task is to collect appropriate information and to determine whether those being assessed have capacity. Assessors communicate with the people being assessed to determine if they understand or appreciate the decisions that they face. If they lack understanding of their situation, their choices, or appreciation of the reasonably foreseeable consequences of their choices, they are deemed incapable. Capacity can be judged to be lacking or absent only after it has been diligently sought in a thorough, comprehensive manner. Assessors utilize decisional aids that provide a framework for information gathering and interviews. Specific aids are available for personal care, health care, and financial decisions. These aids have scoring sheets, completed during the capacity assessment interviews, to cue assessors about aspects of the capacity assessment

Capacity to Decide to Remain Living Alone

31

that have been covered and are yet to be covered. Each of the components on the aids is scored on a scale ranging from “definitely does not” to “definitely does.” The assessment utilizes two components, registration and reflection. Registration involves storage and recall of fact. Reflection is the manipulation and integration of recalled information. The assessor determines whether the individual is able to understand relevant information, that is, understand the problem and the choices available. The assessor next determines whether the person is able to appreciate reasonably foreseeable consequences and understand the consequences of his or her stated choices. Although these tests are important steps in our knowledge of the assessment of decisional capacity, they often are difficult to administer and can require a good deal of time and expertise. These tests have been designed to evaluate the ability of a patient to make medical decisions, and they may have limited application to the capacity to make decisions about personal care. Furthermore, there is no evidence that they are better than simple tests of executive function in the assessment of capacity to make a decision. Holzer and colleagues (Holzer, Gansler, Moczynski, & Folstein, 1997) evaluated the predictive value of a number of cognitive tests in an assessment for competency to give informed consent in the general hospital setting. Over a 1–year period, 65 patients were evaluated, independent of medical or psychiatric diagnosis. The Hopkins Competency Admission Test, Mini Mental Status Exam, Trail Making Test (Parts A and B), and Executive Interview were administered to these patients. The Executive Interview, a measure of executive cognitive function, had the best sensitivity and specificity in correctly classifying competent and noncompetent patients. Marson and colleagues (Marson, Earnst, Jamil, Bartolucci, & Harrell, 2000) found that deficits in executive function, including loss of task, nonresponsive answers, and loss of detachment, were predictors of declining competency performance for patients with Alzheimer’s disease. Bassett (1999) found that measures of global impairment, such as the Mini Mental Status Exam and the Clinical Dementia Rating Scale, were not useful in estimating a patient’s competency for financial and medical decision making. Two tests of executive function, the Trail Making Test Part A and Word Recall tests, were correlated with measures of financial and medical decision making. Royall and colleagues (Royall, Cabello, & Polk, 1998) found that an expanded measure of executive function, the EXIT Interview, was a better predictor of nursing home placement than the Mini Mental Status Exam.

EXECUTIVE FUNCTION The Executive Interview (EXIT) is an instrument that tests an individual’s ability to follow a number/letter sequence, generate a 1–minute word list, design fluently,

32

Decision-Making Capacity and Older Persons

perceive a theme, and perform tests of memory/distraction, interference, motor impersistence, echopraxia, complex commands, serial order reversals, and the Luria hand sequences. The patient also is observed for preservation, imitation behavior, intrusions, frontal release signs, lack of spontaneity, disinhibited behaviors, and utilization behaviors (Royall, Mahurin, & Gray, 1992). Executive functions include those cognitive skills that allow an individual to organize simple ideas and actions into complex goal-directed behavior. Without this function, such tasks as cooking, dressing, and self-care cannot be coordinated. The individual would be able to perform only one component of each task, be easily distracted, and require cues and direction to complete the simplest of tasks. Executive function includes such abilities as cognitive flexibility, concept formation, and self-monitoring. Patients with impaired executive function may not have memory impairment or basic cognitive deficits. Executive dysfunction has a major impact on volition, judgment, and planning. These patients have degraded problem-solving ability, impaired insight, disinhibition, wide shifts of affect, lack of selectivity, inertia, and demonstrate perseveration. The frontal-subcortical circuits of the brain have a major impact on executive control function. Lesions of the dorsolateral prefrontal circuit result in executive function deficits, lesions of the orbitofrontal circuit result in disinhibition, and injuries to the anterior singulate circuit result in apathy (Cummings, 1993). Involvement of the frontal lobe occurs in approximately 10% of all cases of dementia. This condition is characterized by changes in personality and social behavior, more than the characteristic changes of learning and memory that occur in dementia of the Alzheimer’s type. Characteristic features of this condition are personality change, disinhibition, social misconduct, and lack of insight, followed by apathy and stereotypy (constant repetition of certain meaningless gestures or movements) (Orrell & Sahakian, 1991; Schindler, Ramchandani, Matthews, & Podell, 1995). Subcortical dementia results in defects in the frontal-subcortical circuits. This condition is seen in patients with basal ganglia dysfunction, such as Parkinson’s disease, Huntington’s disease, progressive supranuclear palsy, Wilson’s disease, and other subcortical disorders. Cardinal features of subcortical dementia are memory deficits, executive function abnormalities, slowed information processing, and mood and personality changes. In order to live independently, one not only must be able to make a decision, but also must have the capacity to carry out the decision. Collopy (1988) defined decisional autonomy as “the ability and freedom to make decisions without external coercion or restraints.” He further defined a second realm of patient autonomy, autonomy of execution, as “the ability and freedom to act on this decisional autonomy, that is, to carry out and implement personal choices.” (p. 11). Patients lacking full executive function do not have the ability to carry out and implement their choices. These individuals cannot integrate simple tasks into goaldirected behavior. Execution function is essential for planning goal-directed tasks and adjusting to changes in the environment.

Capacity to Decide to Remain Living Alone

33

To live alone, one must be able to carry out planned actions and have the judgment to depend on the right people for assistance. Faden and Beauchamp (McCullough, Molinari, & Workman, 2001) outlined three components of autonomous action, namely, understanding, intentionality, and voluntariness. Intentionality is “an action willed in accordance with a plan,” which means that a person has the capacity to make, implement, and adapt plans of care. Voluntariness means that the patient is not controlled or coerced by others in making and implementing decisions. Impairment of intentionality and voluntariness limits one’s ability to make and carry out plans and to resist influence from individuals who might take advantage of the person. Intentionality and voluntariness involve both executive and decisional autonomy. Impaired executive control function may affect one’s autonomy more than does impairment of memory and cognition. Executive dysfunction, therefore, predicts difficulty both in making decisions and in implementing them, problems in judgment, and problems in trusting appropriate individuals (Schmand, Gouwenberg, Smit, & Jonker, 1999; Strang, 1998). This condition occurs in all dementing diseases, but it may be more prominent than memory deficits in patients with frontal or subcortical dementias. Executive function is measured by such tests as the Trail Making Test, Part B, extent of verbal fluency by generating a word list, clock drawing, and the ability to mimic accurately the examiner’s alternating hand movements (Luria Hand Sequences). Executive functioning is assessed not only by formal tests but also by observation. The clinician should determine whether the patient is impulsive, inflexible, indifferent, apathetic, or demonstrates a lack of initiative. Is it difficult to keep the patient on track and organized? Are there intrusions from one task to another? Is the patient perseverative? Does the patient demonstrate a lack of appropriate concern for consequences or other evidence of impaired judgment?

DETERMINATION OF PERSONAL COMPETENCY The Canadian Psychiatric Association has developed the following criteria for determining personal competence: (1) Does the patient understand the importance of competence to care for himself or herself and the reason for the examination? (2) Does the patient have a realistic appreciation of his or her strengths or weaknesses with respect to this, or is he or she willing to seek help or accept assistance when indicated? (3) Has the patient in the recent past demonstrated an ability to live safely in his/her environment with the resources available, or to do so with additional available resources? and (4) Does the patient continue to make reasonable decisions with respect to self-care? Patients who meet these criteria should be considered competent to care for themselves (MacKay, 1989). When do a patient’s cognitive deficits and unsafe actions call for society to overrule the desire of an individual to remain at home? The question is raised if the

34

Decision-Making Capacity and Older Persons

patient or family is concerned about an individual’s ability to provide for essential needs, or if there is substantial risk of endangerment. The answer must contain a balance between preserving the patient’s independence and autonomy and protecting the patient from unrecognized or unmanageable risk. Whatever the circumstances that raise the question of capacity to make the decision about placement, the patient’s right to assume a degree of risk, to exercise the right to say no, or to disagree with the preference of the physician or the family to move to a safer or more secure environment must be recognized. The court needs information about a person’s mental or physical capabilities in order to determine whether that individual can make a decision about where to live. Diagnostic data, such as the presence of Alzheimer’s disease, are unhelpful. The court needs to know what loss of functional capacity results from this condition. The key information is the individual’s ability to take care of essential needs such as medical care, nutrition, shelter, and safety, or to direct others to meet those needs. The court also needs to know if serious injury, illness, or disease is likely to occur without the appointment of a guardian. In judging the capacity to live alone, the essential questions are the following: What are the actions of the individual that demonstrate a risk of allowing that person to live alone? What aspects of the current home environment raise concern about the ability of that individual to remain in that environment? What functional and cognitive deficits interfere with the individual’s ability to evaluate risk or direct care? The clinician’s role in this process is to provide the court with the best available information that describes the person’s cognitive ability, especially executive function, to make a decision about where to live, and to understand the consequences of that decision; the person’s actions that may put that individual or others in danger; and the person’s specific needs and how the court’s actions can meet those needs. Additionally, it is critical for the court to know what can be done to help the individual to stay at home, what can be done to enhance capability, what supports are available to keep the individual in the community, and what are the risks of not taking action. Based on the evidence provided by the assessing physician, psychologist, or psychiatrist, as well as family members, caregivers, and others who testify about the needs and abilities of the patient, the judge will determine whether the evidence meets the state definition of capacity, whether a guardian should be appointed, the parameters of the order, and what powers should be delegated to the guardian. This decision is always based on an analysis of risk. The court should not act unless this analysis demonstrates a high probability of risk to the individual without judicial action. The importance of the physician’s advice to the court regarding an individual’s ability to elect to live independently cannot be overemphasized. The physician should be as specific as possible in reporting the characteristics and actions of the individual that affect the risk of continuing to live alone in the community. The risk to an individual who demonstrates unsafe behaviors is compounded if that individual refuses needed help from family and social agencies and places trust in

Capacity to Decide to Remain Living Alone

35

inappropriate persons. Safety in living alone requires not only the capacity to make a decision, but also the ability to plan and carry out a plan of care. The support available and accepted by an impaired individual may allow that person to continue to live alone. Refusal to accept that support may preclude independent living. The patient’s right of self-determination includes the right to accept risk. In all circumstances, the patient’s values regarding where to live, just as choices about how he or she wants to die, should be respected. However, when the mismatch between the patient’s preferences and the available resources becomes too uncomfortable for caregivers or practitioners, an assessment of capacity leads to an assessment of risk. When the allegedly incapacitated person is alert and highly verbal, deficits in executive function may be the primary basis for substantiating the argument that community residence is no longer safe. Physicians play an instrumental part in the judicial process of determining whether a person is capable of making a placement decision. What must be proven depends on the specific wording of the guardianship code in that particular state. The diagnosis or condition of the patient has less significance than the functional ability and activity of the individual. The process of determining capacity in the United States usually begins with clinicians and caregivers. They provide an analysis of the patient’s condition to the court. The legal system then imposes the core values of American society, with the requirement that action be taken only when an identifiable risk is present. Each case is unique, dependent on the situation of each individual. The assessment of risk must include not only an assessment of the individual’s capabilities, but also the availability of resources to assist in his or her care and the individual’s willingness to accept this assistance. In all circumstances, the law seeks the minimum restraint on the individual.

CONCLUSION In summary, society must always respect an individual’s right to remain autonomous. That right may be challenged only if a person’s actions and function put that individual or others at substantial risk. Executive function, which can be impaired in the presence of intact memory, is the cognitive function which is best correlated with the ability to make decisions and to live alone. Those who accept needed help are more likely to be able to continue to live alone than those who trust the wrong individuals. A determination that one is incapable of making personal care choices requires evidence of executive dysfunction, unsafe actions, and refusal to accept needed help.

REFERENCES Appelbaum, P. S., & Grisso, T. (1998). Assessing patients’ capacities to consent to treatment. New England Journal of Medicine, 319(25), 1635–1638.

36

Decision-Making Capacity and Older Persons

Bassett, S. S. (1999). Attention: Neuropsychological predictor of competency in Alzheimer’s disease. Journal of Geriatric Psychiatry and Neurology 12(4), 200–205. Clark, A. N., Mankikar, G. D., & Gray, I. (1975, February 15). Diogenes syndrome: A clinical study of gross neglect in old age. Lancet 1(7903), 366–368. Collopy, B. J. (1988). Autonomy in long-term care: Some crucial distinctions. Gerontologist, 28(Suppl), 10–17. Cooney, C., & Hamid, W. (1995). Review: Diogenes syndrome. Age and Aging, 24(5), 451–453. Cummings, J. L. (1993). Frontal-subortical circuites and human behavior. Archives of Neurology, 50(8), 873–880. Daly, S., Sawchuk, P. J., & Wertenberger, D. H. (2000, March). Sending the elderly home: Assessing the risk. Canadian Nurse, 96(3), 27–30. Grisso, T., Appelbaum, P. S., & Hill-Fotouhi, C. (1997). The MacCAT-T: A clinical tool to assess patients’ capacities to make treatment decisions. Psychiatric Services, 48(11), 1415–1419. Holzer, J. C., Gansler, D. A., Moczynski N. P., & Folstein, M. F. (1997). Cognitive functions in the informed consent evaluation process: A pilot study. Journal of the American Academy of Psychiatry and Law, 25(4), 531–540. Iris, M. A. (1998). Guardianship and the elderly: A multi-perspective view of the decisionmaking process. Gerontologist, 28(suppl), 39–45. Janofsky, J. S., McCarthy, R. J., & Folstein, M. F. (1992). The Hopkins Competency Assessment Test: A brief method for evaluating patients’ capacity to give informed consent. Hospital and Community Psychiatry, 43(2), 132–136. MacKay, M. J. (1998). Financial and personal competence in the elderly: The position of the Canadian Psychiatric Association. Canadian Journal of Psychiatry, 34(8), 829–832. Macmillan, M. S. (1994). Hospital staff’s perceptions of risk associated with the discharge of elderly people from acute hospital care. Journal Advanced Nursing, 19(2), 249–256. Marson, D. C. (2001). Loss of competency in Alzheimer’s disease: Conceptual and psychometric approaches. International Journal of Law and Psychiatry, 24(2–3), 267–283. Marson, D. C., Cody, H. A., Ingram, K. K., & Harrell, L. E. (1995) Neuropsychologic predictors of competency in Alzheimer’s disease using a rational reasons legal standard. Archives of Neurology, 52(10), 955–959. Marson, D. C., Earnst, K. S., Jamil, F., Bartolucci, A., & Harrell, L. E. (2000). Consistency of physicians’ legal standard and personal judgments of competency in patients with Alzheimer’s disease. Journal of the American Geriatrics Society, 48(8), 911–918. Marson, D. C., Chatterjee, A., Ingram, K. K., & Harrell, L. E. (1996). Toward a neurologic model of competency: Cognitive predictors of capacity to consent in Alzheimer’s disease using three different legal standards. Neurology, 46(3), 666–672. Marson, D. C., Ingram K. K., Cody, H. A., & Harrell, L. E. Assessing the competency of patients with Alzheimer’s disease under different legal standards. A prototype instrument. Archives of Neurology, 52(10), 949–954. McCullough, L. B., Molinari V., & Workman R. H. (2001). Implications of impaired executive control functions for patient autonomy and surrogate decision making. Journal of Clinical Ethics, 12(4), 397–405. Molloy, D. W., Darzins, P., & Strang, D. (1999). Capacity to decide. Ontario, Canada: Newgrange Press. Orrell, M. W., & Sahakian, B. J. (1991). Dementia of frontal lobe type. [Editorial] Psychological Medicine, 21(3), 553–556.

Capacity to Decide to Remain Living Alone

37

Royall, D. R., Mahurin, R. K., & Gray, K. F. (1992). Bedside assessment of executive cognitive impairment: The executive interview. Journal of the American Geriatrics Society, 40(12), 1221–1226. Royall, D. R., Cabello, M., & Polk, M. J. (1998). Executive dyscontrol: An important factor affecting the level of care received by elderly retirees. Journal of the American Geriatrics Society, 46(12), 1519–1524. Schindler, B. A., Ramchandani, D., Matthews, M. K., & Podell, K. (1995). Competency and the frontal lobe. The impact of executive dysfunction on decisional capacity. Psychosomatics, 36(4), 400–404. Schmand, B., Gouwenberg, B. Smit, J. H., & Jonker, C. (1999). Assessment of mental competency in community-dwelling elderly. Alzheimer Disease and Associated Disorders, 13(2), 80–87. Strang, D. G. (1998). Capacity to choose place of residence: Autonomy vs. beneficence? Journal of Palliative Care, 14(1), 25–29.

This page intentionally left blank

Ethics, Law, and Aging Review, Vol. 10, 2004 © 2004 Springer Publishing Company

Chapter 3

Hopes and Cautions for Instrument-Based Evaluation of Consent Capacity: Results of a Construct Validity Study of Three Instruments Jennifer Moye, Michele J. Karel, Armin R. Azar, and Ronald J. Gurrera

E

valuations of capacity to consent to medical treatment are one form of competency evaluation. Questions about an individual’s capacity to consent are typically raised when an individual with significant cognitive or psychiatric disorder is considerably impaired in her or his ability to understand and evaluate treatment information or to make and communicate treatment decisions. Often, when the issue involves the capacity to consent to ordinary treatment in the health care context, a clinician assesses the patient’s decisional capacities. If appropriate, a substitute decision maker, such as a designated health care proxy, may make the current treatment decision. Evaluations of capacity to consent to medical treatment are rarely subject to judicial review (Grisso & Appelbaum, 1998). Yet, even in cases when assessments do not proceed to legal adjudication, legal definitions of capacity should inform clinical evaluations. 39

40

Decision-Making Capacity and Older Persons

Questions about an individual’s capacity to consent to treatment are raised most often when individuals disagree with what clinicians or family members believe to be a prudent course of treatment (Roe, Lereya, & Fennig, 2001). It is at these times that a clinician may evaluate the patient’s clinical capacity to make an informed treatment choice. Because of the potential loss of self-determination, it is imperative that these evaluations be performed in a reliable and valid manner that accommodates individual differences and the specific situation.

OLDER ADULTS AS TARGETS OF CAPACITY EVALUATION In the past, capacity evaluations targeted adults with serious and persistent psychiatric illness (e.g. severe schizophrenia) or neurological illness (e.g. neurodevelopmental disorder). More recently, as the population ages, capacity evaluations are applied to individuals with late onset conditions affecting cognition, such as dementia (Zimny & Grossberg, 1998). Such evaluations can present particular challenges. Adults with dementia may have a range of preserved or impaired abilities, depending on disease stage and etiology. Accordingly, clinicians evaluating capacity in older adults may find themselves particularly challenged in balancing patient autonomy versus protection (Lo, 1990) in individuals with a lifetime of experience and perhaps subtle changes in cognitive abilities. Furthermore, unlike younger adults with earlier onset psychiatric or neurological conditions, older adults with late onset dementia may have considerable financial assets, at times introducing conflicts of interest for some parties.

MAXIMIZING PATIENT PARTICIPATION IN DECISION MAKING There are many ways to maximize an individual’s participation in, and capacity for, health care decision making. Clinicians have the obligation to present information about the condition and treatments in clear, understandable language, accounting for difficulties in hearing or vision and the individual’s educational level and language (Halter, 1999). Providing information in written or visual formats is helpful, as is addressing anxieties about conditions, treatments, and the management of possible consequences of these (e.g., pain). In some cases, it is useful simply to give the patient time to adjust to the impact of a new diagnosis and to consider treatment options (Grisso & Appelbaum, 1998).

RECOGNIZING THE SOCIOCULTURAL CONTEXT OF DECISION MAKING Health care decision making most often occurs in a social context. Frequently, patients are supported by family members who, together with the patient, work to

Instrument-Based Evaluation of Consent Capacity

41

understand the condition and treatment options and to make an appropriate treatment choice for the patient in light of his or her values. It also is important to be sensitive to cultural or spiritual beliefs affecting treatment choices, as well as the extent to which someone desires to be involved in health care decision making in the first place (Caralis, Davis, Wright, & Marcial, 1993).

PROBLEMS IN CLINICAL EVALUATION OF CONSENT CAPACITY Most evaluations of decisional capacity are made on the basis of a clinical interview. However, such clinical evaluations can be unreliable (Kaplan, Strange, & Ahmed, 1988; Markson, Kern, Annas, & Glantz, 1994; Marson, McInturff, Hawkins, Bartolucci, & Harell, 1997; Rutman & Silberfeld, 1992). In an important empirical investigation of the reliability of competency determinations for older adults, Marson and colleagues (1997) found that physicians achieved only a 56% judgment agreement (Kappa = .14) in evaluating competency to consent in mildly demented patients. Subjective impressions, experience in the field, or even ageism may influence a clinician’s tolerance for allowing risk and respecting preferences of older adults (Clemens & Hayes, 1997).

Challenges in Understanding Decision Outcomes In evaluating the extent to which another person’s medical decision is rational, experts may have difficulty appreciating the elderly patient’s perspective (Macklin, 1986). Clinicians may evaluate a patient’s quality of life differently, typically as less desirable, than does the patient (Starr, Pearlman, & Uhlmann, 1986; Uhlmann & Pearlman, 1991). As it turns out, family and physician proxies are poor at predicting patients’ treatment preferences (Seckler, Meier, Mulvihill, & Cammer Paris, 1991; Suhl, Simons, Reedy, & Garrick, 1994). Given individual differences in cultural background, religious beliefs, and life experiences, individuals may vary in the weighing of values that inform treatment decisions.

Challenges in Understanding Decision Processes Cognizant of the nature of individual differences in treatment choices, clinicians who are evaluating consent capacity focus rightly on decisional processes, not outcomes. However, evaluating decisional processes may become more challenging with age. As individuals grow older and gain more experience with life decisions, they appear to depend less on an analytic or rule-based decision process, and are more likely to rely on automatic processes (Yates & Patalano, 1999). Thus, it may be more difficult for the older adult to articulate and explain how he or she reached a particular decision. Furthermore, although older adults may be at an advantage or at least equivalent in performing tasks requiring automatic processing and implicit

42

Decision-Making Capacity and Older Persons

priming, they are at a distinct disadvantage on tasks requiring effortful processing and working memory (Park et al., 1996; Salthouse, 1996). These disadvantages would increase in situations where current illnesses, multiple medications, and situational anxieties are further taxing cognitive resources, such as likely would be the case when an individual’s capacity to consent to treatment is being questioned.

LEGAL GUIDANCE IN EVALUATING CONSENT CAPACITY Statutory Definitions of Incapacity Clinicians may turn to the law for guidance in evaluating capacity. In the United States, most statutory definitions of incapacity include four parts: (1) a disease or disorder that causes (2) cognitive impairment that leads to (3) functional (behavioral or decisional) deficits on a specific task or decision that exceeds; (4) an acceptable risk threshold to the person or society (Anderer, Coleman, Lichtenstein, & Parry, 1990; Sabatino & Basinger, 2000). These components are shown in Figure 3.1. The disease or disorder is the medical diagnosis that is the presumed cause of the cognitive and functional incapacity. Legal definitions of incapacity have moved away from diagnosis-based definitions to “functional” definitions (Hommel, 1996). The emphasis on function means that the courts are looking for information about performance on the specific capacities in question. This functional information may refer to activities of daily living (ADLs) if the capacity in question is independent living; it could concern decisional abilities if the capacity in question is medical decision making.

Four Case Law Standards or Functional Abilities for Consent Capacity In evaluating the “functional” component of consent capacity, clinicians can focus on a framework of abilities relevant for legal competency to consent to treatment: (1) understanding, (2) appreciation, (3) reasoning, and (4) expressing a choice (Table 3.1). These abilities, or legal standards, were first identified by review of case law and statutes (Roth, Meisel, & Lidz, 1977) and refined further by legal scholars, clinicians, and ethicists (Berg, Appelbaum, & Grisso, 1996; Tepper & Elwork, 1984; see Grisso & Appelbaum, 1998, for more discussion). This legal framework is broadly similar to cognitive models that emphasize comprehending and encoding of treatment information, processing information and making a treatment decision, and communicating that treatment decision (Marson & Harrell, 1999; Moye, 1996).

Instrument-Based Evaluation of Consent Capacity

43

1. Disease or disorder Diagnosis or cause of the problem (e.g., dementia)

2. Cognitive abilities (e.g., performance on general cognitive abilities such as attention, memory, and information processing).

←→

3. Functional abilities (e.g., performance on specific capacities such as understanding, appreciation, reasoning, and expressing a choice).

Everyday Functioning Given Environmental and Situational Demands

4. Does the person’s everyday functioning, as a result of the condition and its effects on cognition and function, place the individual or others at unacceptable risk?

Figure 3.1 Four components of most U.S. statutory definitions of competency.

The Problem of Linking Clinical Evaluations to Legal Standards Although the law theoretically provides some guidance in capacity assessment, it often is not clear how to translate legal definitions into clinical practice. Although legal terms may seem at times vague, the process of legal argument by opposing parties is used as the tool by which the judge or jury applies the legal term in a specific case (Melton, Petrila, Poythress, & Slobogin, 1997). This sort of opposing argument protection is challenging to accomplish in clinical settings. Biomedical ethics panels may be the closest counterpart. However, more often, when consent capacity is in question, there is not the tool of argument and opposing parties. Instead, the “expert” opinion of a single evaluator is the deciding factor. The common

44

Decision-Making Capacity and Older Persons

Table 3.1 Definitions of Decisional Capacities Important in Legally Competent Decision Making Understanding The ability to comprehend diagnostic and treatment-related information and to demonstrate that comprehension involves ability to attend, encode, store, and retrieve newly presented words and phrases Appreciation The ability to determine the significance of treatment information relative to one’s own situation, focusing on beliefs about the actual presence of the diagnosis and the possibility that treatment would be beneficial; involves insight, judgment, and foresight Reasoning The process of comparing alternatives in light of consequences, through integrating, analyzing, and manipulating information; involves the ability to provide rational reasons for a treatment decision, to manipulate information rationally, to generate consequences of treatments for one’s life, and to compare those consequences in light of one’s values Expressing a choice This ability to communicate a decision about treatment applies to individuals who cannot or will not express a choice or who are ambivalent

use of a single evaluator to apply rather vague legal concepts is likely a chief contributor to the low reliability of these assessments in complex cases (Marson et al., 1997; Moye, 2000).

EMPIRICAL CONTRIBUTIONS FOR EVALUATING CONSENT CAPACITY Several researchers have tried to improve the reliability of capacity evaluations by suggesting questions, interview guides, or more structured tools for assessing functional abilities in terms of legal standards (Edelstein, 2000; Grisso & Appelbaum, 1998; Janofsky, McCarthy, & Folstein, 1992; Marson, Ingram, Cody, & Harrell, 1995). Such endeavors hold the promise of translating legal terms into clinically useful techniques. However, some worry that these efforts might eventually oversimplify the task, resulting in “capacimeters” that actually decrease reliability, validity, and rights’ protections (Kapp & Mossman, 1996). Indeed, those who have developed such instruments have cautioned that they should be used to contribute to, not substitute for, an individualized clinical evaluation and interpretation. In summary, we know that clinical judgments about consent capacity can be challenging and at times unreliable. This is especially true for older adults who have late onset neurological conditions and subtle cognitive changes, who may

Instrument-Based Evaluation of Consent Capacity

45

also, because of age, use more automatic decisional processes. Fortunately, there is an emerging consensus about the legal standards important for competency, and new instruments that aim to assess these legal standards have been proposed. In our view, an important next step is the empirical study of the utility of these instruments. The long-term goal of such research should be to support individualized, yet reliable and valid, assessments of decisional capacities, so that we can provide care that is maximally sensitive to patients’ preferences. Our bias is that there is a place for instruments in a comprehensive assessment of capacity. If used appropriately, these instruments should improve on more subjective evaluations, by providing clinicians consistent means for operationalizing legal standards in clinical situations. Edelstein (2000) summarizes this middle-of-the-road position: “an approach residing somewhere between the use of unbridled clinical judgment and the use of a ‘capacimeter’ . . . appears prudent” (p. 433).

METHOD Research Goals In this study, we examine and compare three instruments designed to assess capacity to consent to medical treatment. Each instrument provides specific questions and structure for the clinical evaluation of the four standards for legally competent decision making, namely, understanding, appreciation, reasoning, and choice. In this section, we consider the evidence for construct validity of the instruments. The findings are reviewed in consideration of the operationalization of the four legal standards and implications for their measurement.

Participants Forty-four men and 44 women with dementia participated in the study. Mean age was 75.32 (± 6.23), and mean years of education was 13.89 (± 3.00). Years of age and education did not differ between men and women. Three (3.4%) participants identified their race as African American, 1 (1.1%) identified his race as Native American, and 84 (95.5%) identified their race as Caucasian. Ninety-eight percent of the participants reported English as their first language.

Procedures Recruitment Participants were identified through fliers circulated in hospital waiting rooms, senior centers, senior housing, and advertisements placed in community newspapers,

46

Decision-Making Capacity and Older Persons

council of aging newsletters, and an Alzheimer Association newsletter. Efforts were made to recruit participants of color through special solicitation in organizations and media serving communities of color. Screening Interested adults telephoned the research coordinator, who completed a modified version of the Telephone Interview for Cognitive Status (TICS-M) (Brandt et al., 1993), which assesses orientation, 10–word memory, naming, nonverbal praxis, attention, and calculation. Because of the importance of delayed recall in the diagnosis of dementia, the TICS was modified to include delayed recall of the 10–word list, for a total possible score of 50. To exclude individuals with psychiatric conditions that might interfere with cognition, all participants completed the Geriatric Depression Scale—short form (GDS) (Sheikh & Yesavage, 1986), and the Brief Symptom Inventory (BSI, Derogatis, 1993). Those individuals scoring above a raw score of 10 on the GDS and a T score of 70 on the BSI were excluded. To gather more information about dementia, all participants then completed the Dementia Diagnostic Screening Questionnaire (DDSQ) (Rogers & Meyer, 1988), with the help of a caregiver if needed. The 94–item questionnaire asks about subjective memory difficulties, (e.g.,” Do you have trouble remembering things?”) and risk factors for specific dementia subtype etiologies (e.g., for vascular dementia: “Have you ever had heart surgery?”; for substance induced persisting dementia: “Have you ever stopped drinking because you felt you were drinking too much?”). Potential participants in the dementia group also provided medical records, including blood work, neurological examinations, and head Computed Tomography (CT) or Magentic Resource Imaging Scan SW (MRI). Because this study did not focus on capacity impairments associated with specific forms of dementia, we included all individuals who met criteria from the fourth edition Diagnositc and Statistical Manual of Mental Health Disorder (DSM IV) for dementia attributable to any of the following subtypes: Alzheimer’s, vascular, Parkinson’s, alcohol induced persisting, or combined etiologies. Clinical diagnoses of dementia were made by consensus of a geropsychiatrist and a geropsychologist using DSM-IV criteria on the basis of cognitive screening scores, reports of memory and behavioral problems, presence of risk factors for dementia, and medical records. To avoid potential confounds with impairments due to delirium, all participants were medically stable at the time of testing. No participants were drawn from inpatient or long-term care settings. In addition, all subjects had primary attention abilities within normal limits (Wechster Memory Scale III Digit Span combined score at least in the low average range; standard score ≥ 6). Informed Consent All participants gave informed consent as approved by hospital and medical school Institutional Review Board (IRB) and Human Subjects committees. Because we

Instrument-Based Evaluation of Consent Capacity

47

aimed to recruit individuals in the early stages of dementia, we anticipated that most subjects would retain the capacity to consent to this low-risk study (not involving intervention, and with risks only of inconvenience, boredom, and fatigue) and would not have been adjudicated legally incompetent. However, because our study involved individuals selected due to cognitive difficulties, special attention was paid to the informed consent process. To obtain informed consent, information about the study’s purpose, risks, and benefits was disclosed to all participants in simple, direct language, in written and verbal formats. The examiner inquired as to whether the participant understood the study information, risks, and benefits and answered any questions. If the participant had a legal guardian (true for one subject in the study), the study information was disclosed conjointly to the participant and the guardian, and both signatures were obtained, indicating the participant’s assent and the guardian’s consent. Participants were clearly informed that they could discontinue testing at any time if they disliked the testing or were fatigued. All but three participants finished the entire testing protocol. Subjects were compensated for their time. Testing Participants who screened into the study were invited to participate in face-to-face decision making capacity evaluation using standardized protocols. The order of the capacity instrument administration was counterbalanced across the three instruments to avoid order effects. Testing occurred at the medical center, at a convenient location near the subject’s home (e.g., a senior center), or in the subject’s home, depending on the subject’s preference. Testing lasted approximately 120 minutes; participants were given scheduled breaks during testing. Subjects were evaluated with three instruments designed to assess medical decision-making capacity: (1) the MacCAT-T Competence Assessment Tool for Treatment (Mac CAT-T) (Grisso & Appelbaum, 1998), (2) the HCAI Capacity Assessment Interview (HCAI) (Edelstein, 2000), and (3) the Capacity to Consent to Treatment Instrument (CCTI) (Marson et al., 1995). Each instrument presents a hypothetical diagnosis and treatment alternatives and asks the individual to demonstrate the capacity to understand and appreciate diagnostic and treatment information and to explain the reasoning behind choosing one treatment alternative rather than another. Each instrument has a method for evaluating and rating the four legal standards, as presented in Table 3.2. In this study, the MacCAT-T used a vignette involving treatment of a nonhealing toe ulcer with surgery or amputation. The medical component of the HCAI has two vignettes, about treatment of an eye infection and administration of cardiopulmonary resuscitation in a friend; the use of the third person is intended to avoid personalization of information when used for research purposes (e.g., “But I don’t have that condition”). There also is a financial component to the HCAI that was not used in this study. The CCTI consists of brain cancer and heart surgery vignettes.

Decision-Making Capacity and Older Persons

48

Table 3.2 Comparison of Methods of Assessing Capacities for Each Instrument Capacity Understanding MacCAT-T HCAI CCTI Appreciation MacCAT-T HCAI CCTI

Method Paraphrasing, “in your own words,” diagnostic and treatment information Series of questions about information described in the condition and treatment Series of questions about the details of information described in two vignettes Asks (1) if there is “any reason to doubt” information about the condition; (2) whether treatment “might be of benefit” Asks why the doctor wants the person to take the treatment (in the first vignette) Asks (1) preparation: what would need to be done to prepare for the chosen treatment; (2) projection: what life will be like 1 year after the treatment.

Reasoning MacCAT-T

Asks for (1) comparison of treatments; (2) consequences of treatments; (3) everyday impact of treatment alternatives; (4) logical consistency of reasoning. HCAI Asks why a choice was made, with query and credit for the risks and benefits considered CCTI Asks to give all the reasons why choice was made with credit given for the total number and accuracy of reasons provided. Expressing Choice MacCAT-T Rates if there is a clear choice HCAI Rates whether a choice is made CCTI Rates whether a choice is made for each vignette CCTI = Capacity to Consent to Treatment Instrument HCAI = Hopemont Capacity Assessment Interview MacCAT-T = MacArthur Competence Assessment Tool for Treatment

Statistical Analyses Descriptive Statistics Descriptive data for each capacity variable were reviewed with special attention to distribution. Capacity instruments should have a low difficulty level, as healthy adults are presumed competent and should “test” so. In measurement terms, individuals without psychiatric or neurologic illness should score at or near ceiling on the measure, indicating adequate capacity. Individuals with significant psychiatric or neurologic illness should show some range of impairment on capacity, if capac-

Instrument-Based Evaluation of Consent Capacity

49

ity is likely to be impaired in that illness group. Individuals with mild to moderate degrees of illness would be expected to show mild to moderate impairment on relevant capacities, meaning some degree of left skew might be anticipated, although such non-normal distributions are not ideal for research purposes as they limit statistical analyses. Specifically, skewness and kurtosis values above 1.0 are undesirable. Multitrait Multimethod Matrix Evidence for construct validity was evaluated through a multitrait, multimethod matrix, using four Campbell and Fiske (1959) criteria under Schmitt and Stults (1986) assumptions, in which each variable is hypothetically comprised of trait, method, and error variance (see Figure 3.2). In this research, trait refers to the particular decisional capacity (understanding, appreciation, reasoning, expressing a choice) and method refers to the particular assessment tool (MacCAT-T, HCAI, CCTI). Internal consistency reliability values (alpha) were computed for the reliability diagonals (monotrait, monomethod), when there was more than one item for the variable (shown in italics Figure 3.3). Factor analytic and other multivariate methods of analyzing a multi-trait multi-method matrix could not be used due to restrictions in range and irregularities in distribution. The Campbell–Fiske criteria for convergent or construct validity are 1. Monotrait, heteromethod (MTHM) or “validity values” (shown in outline on Figure 3.3) should be statistically significant and considerably different from 0. 2. MTHM validity diagonal values should be higher than heterotrait, heteromethod (HTHM) (shown in bold in Figure 3.3) values in the associated HTHM rows and columns; a variable should correlate higher with an independent method to measure the same trait than with independent methods to measure different traits. 3. MTHM validity diagonal values should be higher than heterotrait, monomethod (HTMM) values (shaded gray in Figure 3.3) in the associated HTMM triangle; a variable should correlate higher with an independent method to measure the same trait than with the same method used to measure independent traits. 4. Patterns of trait interrelationships should be the same in monomethod and heteromethod triangles.

RESULTS Descriptive Statistics Mean and standard deviation values for each capacity score are presented in Table 3.3, along with skewness and kurtosis values. For the capacity of understanding,

Understanding

Appreciation

Reasoning

50

Theoretical Trait

Choice

Components

Observed

Mu

Ma

Mr

Mc

Hu

Ha

Hr

Hc

Cu

Ca

Cr

Cc

Variables

MacCAT-T

HCAI

CCTI

Components

Figure 3.2 Illustration of hypothesized trait and method determinants of observed variables. Note. Observed variables are labeled by the first initial of the method followed by the first initial of the trait. Error components associated with each variable are not displayed in the illustration. CCTI = Capacity to Consent to Treatment Instrument HCAI = Hopemont Capacity Assessment Interview MacCAT-T = MacArthur Competence Assessment Tool for Treatment

Decision-Making Capacity and Older Persons

Theoretical Method

Instrument-Based Evaluation of Consent Capacity

51

Table 3.3 Mean Values for Decisional Capacities Capacity/ instrument Understanding MacCAT-T HCAI CCTI Appreciation MacCAT-T HCAI CCTI Reasoning MacCAT-T HCAI CCTI Expressing A Choice MacCAT-T HCAI CCTI

# items

Potential range

M

(SD)

Skewness

Kurtosis

12 14 18

0–24 0–28 0–130

16.92 24.19 45.99

(4.17) (3.38) (13.98)

–0.71 –1.85 –0.55

0.16 3.34 –0.17

2 1 4

0–4 0–2 0–8

3.79 1.66 4.98

(0.54) (0.52) (1.60)

–2.98 –1.15 –0.14

10.04 0.29 –0.57

4 3 2

0–8 0–6 0–20*

6.67 5.07 3.91

(1.32) (1.29) (1.92)

–0.76 –1.71 0.13

–0.34 3.02 –0.60

1 3 2

0–2 0–6 0–4

1.96 5.79 3.94

(0.19) (0.56) (0.32)

–5.13 –2.56 –3.08

24.88 5.29 8.82

*CCTI total scores for reasoning were standardized to ten points per vignette to adjust for different potential total scores on reasoning associated with different treatment choices. CCTI = Capacity to Consent to Treatment Instrument HCAI = Hopemont Capacity Assessment Interview MacCAT-T = MacArthur Competence Assessment Tool for Treatment SD = standard deviation

the MacCAT-T has adequate range and within normal limits (WNL) distribution values, although there was very mild left skew. The HCAI understanding mean score approaches the upper limit, and the skewness and kurtosis values are higher. The CCTI understanding mean score is much lower than the upper limit, but skewness and kurtosis are WNL, although there is mild left skew. For the capacity of appreciation, the MacCAT-T mean is very near the upper limit, with high skewness and kurtosis values. The HCAI appreciation mean approaches the upper limit, and the distribution is left skewed. The CCTI appreciation range and distribution of scores are adequate. For the capacity of reasoning, ranges and distributions are adequate on the MacCAT-T and CCTI, but the mean approaches the upper limit and skewness and kurtosis values are high for the HCAI. For the capacity of choice, means on all three instruments approach the upper limit, and all distributions are considerably left skewed with high kurtosis values.

52

Decision-Making Capacity and Older Persons

Multitrait, Multimethod Matrix The multi-trait multi-method matrix is presented in Figure 3.3. Understanding Validity Values: Campbell–Fiske Criteria 1–3 On the capacity of understanding, each of the MTHM validity values met the first three Campbell–Fiske criteria. All three MTHM validity values were statistically significant and greater than 0. The MacCAT-T/HCAI validity value (.77) was higher than the associated HTHM values, which ranged from r = .02–.57 (M = .34, SD = 16) and HTMM values (range r = –.03–.74; M = .36, SD = .23). The HCAI/CCTI validity value (.74) was generally higher than the associated HTHM values, ranging from r = –.02 to .56 (M = .36, SD = .19) and HTMM values (range r = –.01–.74; M = .35, SD = .22). The MacCAT-T/CCTI validity value (.74) was higher than the associated HTHM values, which ranged from r = –.02–.57 (M = .28, SD = .18) and HTMM values (range r = –.03–.50; M = .23, SD = 18). Appreciation Validity Values: Campbell–Fiske Criteria 1–3 For the capacity of appreciation, the MTHM validity values ranged from .15 to .20, none of which were statistically significant and all of which were in the range or lower than the reliability values (á = .19, .49). In general, none of the values met the Campbell–Fiske criteria for the capacity of appreciation. The MacCAT-T/HCAI validity value (.20) was lower than the mean associated HTHM values (range r = .00–.50; M = .29, SD = 16) and HTMM values (range r = –.03–.74; M = .36, SD = .23). The HCAI/CCTI validity value (.19) was about the same as the mean score for the associated HTHM values (range r = –.04–.42; M = .18, SD = .14) and lower than the HTMM mean score values (range r = –.01–.74; M = .35, SD = .22). The MacCAT-T/CCTI validity value (.15) was lower than most of the associated HTHM values, which ranged from r = –.04–.50 (M = .26, SD = .16), and HTMM values (range r = –.03–.50; M = .23, SD = 18). Reasoning Validity Values: Campbell–Fiske Criteria 1–3 For the capacity of reasoning, results were mixed. The MTHM validity values ranged from .26 to .42, two of which were statistically significant. These values were somewhat smaller than reliability values which ranged from á = .39 to .59. Most of the Campbell–Fiske criteria were met for the reasoning validity values, although MTHM validity values were often close in size to mean scores for the relevant HTHM and HTMM correlations. The MacCAT-T/HCAI MTHM reasoning validity value (.42) was higher than the mean scores for associated HTHM correlations, which ranged from r = .02 to .57 (M = .33, SD = .18), and HTMM correlations (range r = –.03–.74; M = .36, SD = .23). The HCAI/CCTI validity value (.40) was higher than the means of associated HTHM correlations, ranging from r = .01 to .57 (M = .28, SD = .20) and HTMM correlations (range r = –.01– .74; M = .35, SD = .22). The MacCAT-T/CCTI validity value (.26) was lower than

MacCAT-THCAI Under MacCAT-T

CCTI

Appr

Reas

Under

.77

Appr

.42*

.19

Reas

.48*

.34*

.42

.04

.24

Choice HCAI

CCTI

–.03

Choice

Under

Appr

Reas

Choice

Under

Appr

Reas Choice

+

Under

.77*

.47*

.47*

.02

.74

Appr

.42*

.20

.31*

.00

.42*

+

Reas

.57*

.36

.42*

.02

.74*

.23

.59

Choice

.51*

.50*

.43*

–.07

.64*

.27

.53*

.03

Under

.74*

.39*

.46*

–.02

.74*

.37*

.56*

.56*

.87

Appr

.24

.15

.15

–.04

.23

.19

.13

.18

.26

.49

Reas

.31*

.35*

.26

.01

.39*

.04

.40*

.37*

.50*

.28*

Choice

.13

.19

.27

.25

.29*

.14

.21

.30*

.14

–.01

Instrument-Based Evaluation of Consent Capacity

Figure 3.3 Multitrait (Capacity), Multimethod (Instrument) Matrix

.39 .20

.32

53

Note. Monotrait, heteromethod (MTHM) validity values are outlined. Heterotrait, monomethod (HTMM) values are shaded. Heterotrait, heteromethod (HTHM) values are in bold. Monotrait, monomethod reliability values are in italics. *Correlation is significant at the 0.01 level (2–tailed). + Alpha cannot be computed, as there is only one item. CCTI = Capacity to Consent to Treatment Instrument HCAI = Hopemont Capacity Assessment Interview MacCAT-T = MacArthur Competence Assessment Tool for Treatment

54

Decision-Making Capacity and Older Persons

the mean relevant HTHM correlations (range r = .01–.47; M = .30, SD = .15) and close to the mean of associated HTMM correlations values (range r = –.03 to .50; M = .23, SD = 18). Expressing a Choice Validity Values: Campbell–Fiske Criteria 1–3 For the capacity of choice, results were mostly negative. The MTHM validity values ranged from r = –.07 to .30; only one was statistically significant. Reliability values could be computed for two measures and were low (á = .03 and .32). Most of the Campbell–Fiske criteria were not met for the capacity of expressing a choice. The MacCAT-T/HCAI MTHM validity value (–.07) was lower than most of the relevant HTHM correlations (range r = –.04–.56; M = .19, SD = .24) and HTMM correlations (range r = –.03–.74; M = .36, SD = .23). The HCAI/CCTI validity value (.30) was lower than most associated HTHM correlations (range r = .13–.56; M = .32, SD = .15) and the HTMM values (range r = –.01–.74; M = .35, SD = .22). The MacCAT-T/CCTI validity value (.25) was higher than most of the associated HTHM correlations (range r = –.04–.29; M = .10, SD = .12) and close to the mean of the HTMM correlations values (range r = –.03–.50; M = .23, SD = 18) . Campbell–Fiske Criterion 4 In comparing patterns of trait interrelations across three monomethod and six heteromethod triangles, correlations between measures of the capacities of understanding and reasoning were often the highest (eight of nine triangles). Correlations between measures of appreciation and expressing a choice were many times lowest. Correlations of measures of reasoning and expressing a choice were often midrank. Correlations between appreciation and understanding, appreciation and reasoning, and expressing a choice and understanding varied in rank size across the triangles.

DISCUSSION In this chapter we consider the appropriateness of instrument-based assessment of consent capacity. Instrument-based assessment may address the low reliability of evaluations using interview alone and the difficulty of interpreting legal terms in clinical settings. To address the pros and cons of instrument-based assessment, we considered the evidence for construct validity associated with three instruments designed to evaluate four specific capacities in a group of 88 older adults with dementia. Prior to the discussion of results, several limitations regarding our sample are noted. First, we recruited individuals with dementia of heterogeneous causes. Although we feel this increases the generalizability of our findings to the types of patients seen in our clinical practice, who most often present with multiple risk factors for different forms of dementia, it means we cannot comment on patterns of deficits associated with specific forms of dementia, such as Alzheimer’s. Demo-

Instrument-Based Evaluation of Consent Capacity

55

graphic variables suggest our sample is not equivalent to the U.S. population. Although we made special efforts to recruit individuals of color, 96% of our participants with dementia were Caucasian. Also, 39% of our sample had a high school education or less, which is lower than the current national mean within the 60+ age group. In addition, although our income data are comparable to the national median (within the 60+ age group), financial compensation for participation in this study may have attracted individuals with greater financial needs. Forty-three percent of our participants with dementia were recruited from Veterans Affairs (VA) clinics, which likely influenced these sample characteristics.

Understanding The capacity of understanding concerns whether the individual can demonstrate comprehension of basic diagnostic and treatment information. The CCTI and HCAI assess understanding by asking for recall of specific facts about the diagnostic and treatment information. The MacCAT-T assesses understanding by asking for paraphrasing of information in a series of disclosure and cued recall prompts. Distribution results suggest that there is some tendency to left skew (majority of scores approaching ceiling), which seems appropriate for individuals with mild dementia; this is to say that capacity instrument scores would not always show normal distributions. Incapacity should be found only with significant impairment; thus mildly impaired individuals should score near ceiling. In this study, the left skew was especially true for the HCAI, designed to be appropriate for more considerably impaired individuals within long-term care settings. Examination of the multitrait, multimethod matrix showed good convergent validity for the capacity of understanding as measured by the three instruments, with high intertest correlations, which generally exceeded correlations between different traits by different measures and by the same measures. These findings suggest good agreement between instruments for the measurement of understanding and support the concept of understanding and its measurement through structured instruments.

Appreciation The capacity of appreciation is somewhat complex. In case law, it has been applied to individuals who may show superficial understanding of and reasoning about medical information, yet fail to accept that they have a condition they really have or that the treatment proposed may be of benefit. This component relates to trust and judgment and applies especially to the interpersonal aspects of medical decisions (whether a patient believes a doctor). Problems with appreciation may be seen in individuals with delusional disorders, but they could occur in any individual who struggles with discernment and belief. The three instruments used here assess it differently: the MacCAT-T as “reasons to doubt” the disorder or treatment benefit—on which scores are considerably

56

Decision-Making Capacity and Older Persons

left skewed; the HCAI, as direct questions about why the doctor is suggesting treatment— for which scores are somewhat left skewed; and the CCTI, as future planning and projection in the context of planned treatments—on which distributions are more normal. These distributions suggest that individuals with dementia may not show appreciation impairments through doubting of information or questioning of doctors. Hence, the CCTI approach of assessing appreciation is rather creative and may be useful for individuals with dementia. It is not surprising, given the different methods of measuring this complex construct and the limited observed variance, that the evidence for convergent validity for the concept of appreciation was poor. Although the CCTI approach for measuring appreciation in demented populations may hold promise, more research is needed to establish the meaning of the concept in different populations and valid means for its assessment. Such research should compare different ways of measuring appreciation and explore the potential roles of social judgment (e.g., trust of clinician) and reflective judgment or insight, foresight, and discernment (e.g., trust of information and personal reflection about it).

Reasoning The capacity of reasoning involves the ability to weigh risks and benefits of treatment alternatives, as well as to realize the impact of those risks and benefits on one’s own life. The outcome of this reasoning is the treatment choice. To evaluate an individual’s capacity to reason, the examiner asks the patient to backtrack and articulate the internal and perhaps intuitive process of arriving at that choice. The assessment of reasoning is operationalized on the CCTI and HCAI as the provision of “rational reasons,” in many ways a restatement of the facts previously recounted for the assessment of understanding, as supported by the high correlations between understanding and reasoning as measured by the CCTI and HCAI. On the MacCATT, reasoning is assessed by comparing treatments in light of stated consequences (e.g., immobility) and how those affect the individual’s life and valued activities (e.g., the inability to participate in certain activities). The first part of the MacCATT assessment of reasoning is similar to the CCTI and HCAI and the second part, involving application to one’s own life, extends the task. The evidence for convergent validity was mixed, although generally positive. The association between the MacCAT-T and CCTI methods of assessing reasoning had the lowest correlation, and was often lower than the correlations of different traits by different methods. Other hetero-method correlations for reasoning were higher and met Campbell–Fiske criteria. These findings suggest mixed agreement between instruments for the measurement of reasoning. More research is needed to compare methods that focus on the capacity to list rational reasons versus the ability to articulate how risks and benefits mesh with one’s own interests and values. We favor the latter approach, as it seems the process of asking the individual to explain the reasoning process in light of values (Karel, 2000) would seem a richer

Instrument-Based Evaluation of Consent Capacity

57

assessment of reasoning than simply the restating of reasons (however much that may comply with some views of case law). In our view, “competent” reasoning may be best described as a personally authentic or valid decision process, rather than a logical or rational one (Snyder, 1994).

Choice The capacity of expressing a choice was evaluated as the ability to state a clear enough choice for oneself (MacCAT-T, CCTI) or another (HCAI). In this sample, almost all individuals could do this, as indicated by highly left-skewed distributions. The capacity of expressing a choice may be most relevant to individuals in more advanced stages of dementia, for whom the simple ability to state a choice may be impaired. In those cases, it is probably not necessary (or possible) to assess other capacities. For individuals in early stages of dementia, such as in this sample, the simple capacity to express a choice is less likely to be impaired. We think the concept has meaning in general, but its convergent validity in this sample was limited by restrictions in range.

Pros and Cons of Instrument-Based Assessment of Consent Capacity Is the move to develop instruments to evaluate legal competency advantageous? Do instruments increase precision of measurement, so that the specific capacity is more reliably and meaningfully measured? Or do instruments in their sense of precision merely prevaricate by confusing precision with validity? Of note, the answer to this question should be oriented on the type of capacity in question. An instrument to assist in the evaluation of capacity to drive or to live at home would be quite different from one that assesses capacity to consent to medical treatment. As regards instruments for consent capacity, the findings of this study suggest that there is relative agreement on the assessment of the capacity to understand diagnostic and treatment information, and probably (although our data were too restricted in range to be conclusive) on the assessment of expressing a choice (a threshold ability). The concepts of reasoning and especially appreciation need more fleshing out before we can feel confident that they are being assessed in a way that is meaningful across measures and for specific populations. It would be helpful to develop trial instruments that draw from the strengths of each of these instruments and also explore novel means to assess specific capacities. Especially for the capacities of reasoning and appreciation, it would be interesting to study multiple items or means for measuring the capacities within a single instrument, so that these items can be compared within a single test or method through item-scale or factor analyses. The best items or methods for assessing the capacity can then be retained. Also, although it can be hard to obtain funding for basic psychometric research, it is imperative to establish test/retest reliability and normative properties of these instruments.

58

Decision-Making Capacity and Older Persons

In our caution about avoiding a rush to develop and use capacity instruments in clinical work, we are nevertheless mindful of the limitations of contemporary practice without such instruments. Subjective clinical interviews of questionable reliability are still the norm in evaluation of consent capacity. In long-term care facilities, assessing capacity to complete an advance directive most often relies on only the evaluation of orientation to person, place, or time as an indication of that capacity; such capacity assessments rarely involve physicians and sometimes rely on clerical personnel (Walker, Blechner, Gruman, & Bradley, 1998). Against this norm, instruments that direct evaluation toward consideration of appropriate cognitive tasks and legal standards are certainly worth further consideration and development. “Competency,” and its more recent cousin “capacity,” are concepts that have been a part of law and medicine for a very long time; they are aged terms. At the same time, these concepts can be elusive, and our understanding of how best to define and operationalize these terms is still in its infancy. Clinical judgments of capacity can be shockingly unreliable. The potential low reliability of subjective evaluations of capacity means that patients assessed by clinicians to lack capacity when they in actuality have capacity could lose the right to make independent medical decisions. On the other hand, patients assessed by clinicians to have capacity when they actually lack it could make treatment or research decisions not fully understanding or appreciating risks. Capacity instruments aim to fix problems with reliability and their consequences by providing clinicians more standardized methods of assessing decision-making abilities relevant for consent capacity. In the absence of a reliable gold standard for capacity evaluation, capacity instruments need to be evaluated through construct validation approaches. Our construct validity study finds that the three capacity instruments compared here have many strengths and areas of agreement, yet the most accurate way to operationalize and assess the concepts of reasoning and appreciation is still not clear. Further instrument development and refinement and follow-up construct validation investigation is needed. Additional research to better understand the factors influencing test/re-test and inter-rater reliability are also needed.

CONCLUSION In closing, we return to a critical point illustrated in Figure 3.1. Capacity instruments are meant to assess practically and directly performance on a specific task or decision in question (Box 3 on Figure 3.1). But this component does not alone comprise a capacity evaluation, because it does not relate that performance to general abilities or to the diagnosis that explains why, on what basis, and for how long the observed capacity impairments may exist. Nor does it relate the capacity impairments to contextual individual, situational, familial, and cultural factors. If we can continue to improve capacity instruments and remember to place these

Instrument-Based Evaluation of Consent Capacity

59

within the framework of a comprehensive evaluation, we ultimately should be able to improve the reliability and validity of these important assessments.

ACKOWLEDGMENTS This research was supported by a grant from the National Institute of Mental Health to the first author (R29 MH57104). We thank Barry Edestein, Jayne Fulkerson, Linda Ganzini, Daniel Marson, and Stacey Wood for helpful comments on earlier drafts of this chapter. Special gratitude is extended to Thomas Grisso, whose wise counsel from the outset of this project exemplifies gracious mentorship of new investigators.

REFERENCES Anderer, S. J., Coleman, N. A., Lichtenstein, E. C., & Parry, J. W. (1990). Determining competency in guardianship proceedings. Washington, DC: American Bar Association. Berg, J. W., Appelbaum, P. S., & Grisso, T. (1996). Constructing competence: Formulating standards of legal competence to make medical decisions. Rutgers Law Review, 48, 345–396. Brandt, J., Welsh, K. A., Breitner, J. C., Folstein, M. F., Helms, M., & Christian, J. C. (1993). Hereditary influences on cognitive functioning in older men: A study of 4000 twin pairs. Archives of Neurology, 50(6), 599–603. Campbell, D., & Fiske, D. (1959). Convergent and discriminant validation by the multitrait multi-method matrix. Psychological Bulletin, 56(2), 81–105. Caralis, P. V., Davis, B., Wright, K., & Marcial, E. (1993). The influence of ethnicity and race on attitudes toward advance directives, life-prolonging treatments, and euthanasia. Journal of Clinical Ethics, 4(2), 155–165. Clemens, E., & Hayes, H. E. (1997). Assessing and balancing elder risk, safety, and autonomy: Decision making practices of elder care workers. Home Health Care Services Quarterly, 16(3), 3–20. Derogatis, L. R. (1993). Brief symptoms inventory. Minneapolis: National Computer Systems. Edelstein, B. (2000). Challenges in the assessment of decision-making capacity. Journal of Aging Studies, 14, 423–437. Grisso, T., & Appelbaum, P. S. (1998). Assessing competence to consent to treatment. New York: Oxford University Press. Halter, J. B. (1999). The challenge of communicating health information to elderly patients: A view from geriatric medicine. In D. C. Park, R. W. Morrell, & K. Shifren (Eds.), Processing of medical information in aging patients: Cognition and human factors perspectives (pp. 23–28). Mahwah, NJ: Lawrence Erlbaum. Hommel, P. A. (1996). Guardianship reform in the 1980s: A decade of substantive and procedural change. In M. Smyer, K. W. Schaie, & M. B. Kapp (Eds.), Older adults’ decision making and the law (pp. 225–253). New York: Springer.

60

Decision-Making Capacity and Older Persons

Janofsky, J. S., McCarthy, R. J., & Folstein, M. F. (1992). The Hopkins Competency Assessment Test: A brief method for evaluating patients’ capacity to give informed consent. Hospital and Community Psychiatry, 43(2), 132–136. Kaplan, K. H., Strang, J. P., & Ahmed, I. (1988). Dementia, mental retardation, and competency to make decisions. General Hospital Psychiatry, 10(6), 385–388. Kapp, M., & Mossman, D. (1996). Measuring decisional capacity: Cautions on the construction of a “capacimeter.” Psychology, Public Policy, and Law, 2, 73–95. Karel, M. J. (2000). The assessment of values in medical decision making. Journal of Aging Studies, 14, 403–422. Lo, B. (1990). Assessing decision making capacity. Law, Medicine, and Health Care, 18(3), 193–201. Macklin, R. (1986). The geriatric patient: Ethical issues in care and treatment. In T. Mappes & J. S. Zambaty (Eds.), Biomedical ethics (2nd ed., pp. 162–167). New York: McGraw–Hill. Markson, L. J., Kern, D. C., Annas, G. J., & Glantz, L. H. (1994). Physician assessment of patient competence. Journal of the American Geriatrics Society, 42(10), 1074–1080. Marson, D. C., & Harrell, L. E. (1999). Neurocognitive changes associated with loss of capacity to consent to medical treatment in patients with Alzheimer’s disease. In D. C. Park, R. E. W. Morrell, & K. Shifren (Eds.), Processing of medical information in aging pateints: Cognition and human factors perspectives (pp. 109–126). Mahwah, NJ: Lawrence Erlbaum. Marson, D. C., Ingram, K. K., Cody, H. A., & Harrell, L. E. (1995). Assessing the competency of patients with Alzheimer’s disease under different legal standards. Archives of Neurology, 52(10), 949–954. Marson, D. C., McInturff, B., Hawkins, L., Bartolucci, A., & Harrell, L. E. (1997). Consistency of physician judgments of capacity to consent in mild Alzheimer’s disease. Journal of the American Geriatrics Society, 45(4), 453–457. Melton, G. B., Petrila, J., Poythress, N. G., & Slobogin, C. (1997). Psychological evaluations for the courts (2nd ed.). New York: Guilford Press. Moye, J. (1996). Theoretical frameworks for competency assessments in cognitively impaired elderly. Journal of Aging Studies, 10, 27–42. Moye, J. (2000). Mr. Franks refuses surgery: Cognition and values in competency determination in complex cases. Journal of Aging Studies, 14, 385–401. Park, D. C., Smith, A. D., Lautenschlager, G., Earles, J., Frieske, D., Zwahr, M., & Gaines, C. (1996). Mediators of long-term memory performance across the life span. Psychology and Aging, 11(4), 621–637. Roe, D., Lereya, J., & Fennig, S. (2001). Comparing patients’ and staff members’ attitudes: Does patients’ competence to disagree mean they are not competent? Journal of Nervous and Mental Disease, 189(5), 307–310. Rogers, R. L., & Meyer, J. S. (1988). Computerized history and self-assessment questionnaire for diagnostic screening among patients with dementia. Journal of the American Geriatrics Society, 36(1), 13–21. Roth, L. H., Meisel, C. A., & Lidz, C. A. (1977). Tests of competency to consent to treatment. American Journal of Psychiatry, 134(3), 279–284. Rutman, D., & Silberfeld, M. (1992). A preliminary report on the discrepancy between clinical and test evaluations of competency. Canadian Journal of Psychiatry, 37, 634–639. Sabatino, C. P., & Basinger, S. L. (2000). Competency: Reforming our legal fictions. Journal of Mental Health and Aging, 6, 119–144.

Instrument-Based Evaluation of Consent Capacity

61

Salthouse, T. A., (1996). The processing-speed theory of adult age differences in cognition. Psychological Review, 103(3), 403–428. Schmitt, N., & Stults, D. M. (1986). Methodology review: Analysis of multi-trait multimethod matrices. Applied Psychological Measurement, 10, 1–22. Seckler, A. B., Meier, D. E., Mulvihill, M., & Cammer Paris, B. E. (1991). Substituted judgement: How accurate are proxy predictions? Annals of Internal Medicine, 115(2), 92–98. Sheikh, J. I., & Yesavage, J. A. (1986). Geriatric depression scale: Recent evidence and development of a shorter version, Clinical Gerontologist, 5, 165–73. Snyder, A. C. (1994). Competency to refuse lifesaving treatment: Valuing the nonlogical aspects of a person’s decisions. Issues in Law and Medicine, 10(3), 299–320. Starr, T. J., Pearlman, R. A., & Uhlmann, R. F. (1986). Quality of life and resuscitation decisions in elderly patients. Journal of General Internal Medicine, 1(6), 373–379. Suhl, J., Simons, P., Reedy, T., & Garrick, T. (1994). Myth of substituted judgment: Surrogate decision making regarding life support is unreliable. Archives of Internal Medicine, 154(1), 90–96. Tepper, A., & Elwork, A. (1984). Competence to consent to treatment as a psychological construct. Law and Human Behavior, 8(3-4), 205–223. Uhlmann, R. F., & Pearlman, R. A. (1991). Perceived quality of life and preferences for life-sustaining treatment in older adults. Archives of Internal Medicine, 151(3), 495– 497. Walker, L., Blechner, B., Gruman, C., & Bradley, E. (1998). Assessment of capacity to discuss advance care planning in nursing homes. Journal of the American Geriatrics Society, 46(8), 1055–1056. Yates, J. F., & Patalano, A. L. (1999). Decision making and aging. In D. C. Park, R. W. Morrell, & K. Shifren (Eds.), Processing of medical information in aging patients: Cognition and human factors perspectives (pp. 31–54). Mahwah, NJ: Lawrence Erlbaum. Zimny, G. H., & Grossberg, G. T. (1998). Guardianship of the elderly. In G. H. Zimny & G. T. Grossberg (Eds.), Guardianship of the elderly (pp. 3–24). New York: Springer.

This page intentionally left blank

Ethics, Law, and Aging Review, Vol. 10, 2004 © 2004 Springer Publishing Company

Chapter 4

Competency in Parkinson’s Disease With Dementia Daniel C. Marson and Maureen Dymek

I

Impairment of competencies, such as medical decision-making capacity and financial capacity, is an inevitably frequent consequence of neurodegenerative disorders like Alzheimer’s disease (AD) and Parkinson’s disease (PD) with dementia (Dymek, Atchison, Harrell, & Marson, 2001; Marson, Ingram, Cody, & Harrell, 1995; Marson, 2000). Such impairment is critical to the clinical diagnosis of dementia (American Psychiatric Association, 1994) and causes substantial patient disability and caregiving burden for families. A key competency in this regard is decisional capacity: specifically, the capacity to consent to medical treatment, or medical decision-making capacity (MDC). MDC is an integral element of the legal doctrine of informed consent, which requires that a person’s consent to medical treatment be informed, voluntary, and competent (Kapp, 1999). MDC is a key clinical issue for cognitively impaired AD and PD patients, families, and clinicians, who together must make complex decisions about a patient’s medical care over the course of protracted neurodegenerative diseases (Dymek et al., 2001). Along with research consent capacity, MDC in dementia is an ethical issue of national importance, as patients with AD and PD increasingly must choose among new and complex medication regimens and decide whether to participate in clinical research studies aimed at developing new treatments (Kim, Caine, Currier, Leibovici, & Ryan, 2001). Thus, impairment in the decisional capacity of

63

64

Decision-Making Capacity and Older Persons

patients with AD and PD has important scientific, clinical, legal, and ethical implications. In recent years, the capacity of patients with AD to consent to medical treatment has received increasing research attention. Prior work has shown that MDC is significantly impaired in patients with mild and moderate Alzheimer’s disease ( Marson, Cody, Ingram, & Harrell, 1995 ; Marson, Earnst, Jamil, Bartolucci, & Harrell, 2000; Marson, McInturff, Hawkins, Bartolucci, & Harrell, 1997). These findings have been replicated recently in a study of research consent capacity in AD (Kim et al., 2001). Neurocognitive studies have begun to identify the cognitive functions and neurologic substrates associated with declining MDC in AD (Dymek, Marson, & Harrell, 1999; Earnst, Marson, & Harrell, 2000; Marson, Chatterjee, Ingram, & Harrell, 1996; Marson, Cody et al., 1995; Marson, Hawkins, McInturff, & Harrell, 1997), and the factor structure of MDC in AD has been initially identified (Dymek et al., 1999). These studies have been an integral part of the emergence of competency assessment as a distinct field of academic and clinical interest in gerontology (Marson, 2002; Marson & Ingram, 1996). In contrast, relatively little attention has been given to date to consent capacity in patients with PD and its dementia syndrome. PD is one of the most prevalent and disabling of neurologic disorders (Jacobs, Stern, & Mayeux, 1997); over time, patients become extremely incapacitated by their progressive motor and cognitive impairments. The prominence of motor dysfunction in PD has tended to obscure the contributions of cognitive change and dementia to patients’ functional decline. Both cognitive impairment and dementia are prevalent in PD (Aarsland, Anderson, Larsen, Lolk, & Kragh-Sorenson, 2003; Aarsland, Larsen, & Tandberg, 1996; Levy et al., 2002; Olanow, Watts, & Koller, 2001; Woods & Troster, 2003); diffuse Lewy body disease (DLB), the most common dementia within the parkinsonian spectrum, is viewed to be the most prevalent dementia in the elderly after AD (Burn & McKeith, 2003; McKeith, Galasko, & Kosaka, 1996). Impairment of MDC in PD and its dementia syndrome is likely to differ in important ways from that in AD, as these two dementias have different neuropathology and neurologic substrates and cognitive, psychiatric, and motor features (Mahler & Cummings, 1990; Stern, Richards, Sano, & Mayeux, 1993). Thus, competency loss in PD and its dementia syndrome represents an important area of study in its own right. MDC is a competency that is particularly suitable for study in PD. As a competency, MDC appears to be primarily a verbally based construct. Exploratory and validation factor analyses in AD patients have indicated that MDC is composed of two distinct factors corresponding to verbal conceptualization/reasoning and verbal memory (Dymek et al., 1999). By implication, therefore, MDC appears to be a multidimensional and verbally mediated construct. Such a finding is intuitively reasonable, insofar as the MDC construct has as its context a largely oral dialogue between physician and patient (Dymek et al., 1999). This dialogue involves verbal communication of medical and treatment information by the physician or other

Competency in Parkinson’s Disease With Dementia

65

clinician, verbal comprehension and recall, verbal processing and reasoning, and basic communication skills on the part of the patient (Marson & Harrell, 1999). The only pragmatic and procedural element of the treatment consent process arguably is the signature on the consent form (Dymek et al., 1999). It is this fundamental verbal basis that makes MDC particularly suitable for investigation in cognitively impaired patients with PD. Unlike other competencies or instrumental activities of daily living (IADL), such as driving, cooking, and medication compliance, MDC does not involve significant motoric demands or skills that can complicate and potentially confound studies of higher order functional abilities in patients with PD. In this chapter, we describe work previously completed by our research group on the capacity of cognitively impaired PD patients to consent to medical treatment (Dymek et al., 2001). We first present general background regarding PD, in particular the cognitive impairment and dementia syndrome associated with PD. We then present a model of consent capacity and a related psychometric instrument developed by our group called the Capacity to Consent to Treatment Instrument (CCTI). We examine the performance and capacity outcomes of older controls and patients with PD and dementia on the different CCTI capacity standards. We next explore the relationship of neurocognitive impairments in the PD group to their competency performance on the CCTI. Finally, we discuss the implications of the study findings for competency in patients with PD and indicate directions for future competency research in this group.

PARKINSON’S DISEASE AND ITS DEMENTIA SYNDROME As mentioned above, PD is one of the most prevalent and disabling neurologic disorders (Jacobs et al., 1997). PD has a prevalence rate of approximately 0.5% to 1% among persons 65 to 69 years of age, a rate that increases to as high as 3% among persons 80 years of age and older (Nussbaum & Ellis, 2003; Twelves, Perkins, & Counsell, 2003). Current diagnostic criteria for idiopathic PD include at least two of the following signs: tremor at rest, muscle rigidity, and motor slowing or bradykinesia (Langston et al., 1992), as well as unilateral onset of motor symptoms and persistent asymmetry (Hughes, Daniel, Kilford, & Lees, 1992; Hughes, Shlomo, Daniel, & Lees, 1992). With appropriate neurologic care and treatment with levodopa and other medications, PD patients can function relatively normally for a number of years. However, PD is a chronic neurodegenerative disorder, and over time the symptoms of motor dysfunction respond less and less well to pharmacological intervention, and the patient becomes increasingly immobile and physically incapacitated.

66

Decision-Making Capacity and Older Persons

Although PD presents initially as a movement disorder, it commonly involves cognitive impairment (Levy et al., 2002; Olanow et al., 2001), and in a substantial number of cases (30% to 50% or more) proceeds to a progressive dementia syndrome (PDDS, Aarsland et al., 1996, 2003; Woods & Troster, 2003). The prevalence of dementia in PD increases with age (Cummings & Benson, 1992; Mahler & Cummings, 1990), with 10% to 15% of individuals between the ages of 50 and 59 demented and over 60% of individuals over age 80 (Galasko & Salmon, 2000; Mayeux et al., 1992). A recent study demonstrated that over 75% of a representative PD sample developed dementia during an 8–year period (Aarsland et al., 2003). Empirical studies have suggested that the dementias of AD and PDDS differ in many ways (Mahler & Cummings, 1990; Stern et al., 1993). AD is a “cortical” dementia and, over time, involves prominent amnesia, aphasia, and global loss of cognitive abilities (Cummings & Benson, 1992). The neuropathological basis of AD is progressive synaptic and neuronal losses in regions of the hippocampus, entorhinal cortex, temporal lobe, and parietal, frontal, and occipital association frontal cortices (Galasko & Salmon, 2000). The primary neurotransmitter change in AD is the reduction of cortical cholinergic function related to atrophy of the nucleus basalis (Mahler & Cummings, 1990). In contrast, PDDS is a set of parkinsonian dementing disorders characterized primarily by frontal/executive system impairments in complex attention, spontaneous generation, recall and information retrieval, and speed of information processing (Cummings & Benson, 1992; Woods & Troster, 2003). Early visuospatial and visuoconstruction impairments are also characteristic of PDDS dementia (Burn & McKeith, 2003). Cortical changes such as frank aphasia, agnosia, and severe amnesia are rarer in PDDS and usually represent the concurrent presence of AD (Cummings & Benson, 1992). PD involves degeneration of pigmented neurons and the presence of Lewy bodies in the substantia nigra, ventral tegmental area, and locus ceruleus, with associated loss of striatal dopamine concentrations and disruption of cortical-basal ganglionic-thalamic-frontal dopaminergic circuits. PDDS additionally involves neuronal loss in the forebrain, with associated alterations in cholinergic and other nondopaminergic neurotransmitter systems (Burn & McKeith, 2003; Burn et al., 2003; Dickson, 2000; Mahler & Cummings, 1990; Stern et al., 1993; Woods & Troster, 2003). Taken together, the dementias associated with AD and PD constitute a very large proportion of existing cases of dementia in the United States. The functional impairments, incalculable suffering, and enormous costs imposed on society by these two diseases (Dodel et al., 1998) will continue to increase in the next several decades as our society ages. Like AD, PD is a significant public health issue and is receiving intense interest from the National Institutes on Health (National Institute of Neurologic Disorders and Stroke, 2003), the national scientific research community (Nussbaum & Ellis, 2003), and public policy makers. As mentioned above, an area of significant national interest is the medical and research decision-making capacity of these patients (Nussbaum & Ellis, 2003).

Competency in Parkinson’s Disease With Dementia

67

CONCEPTUAL MODEL OF MEDICAL DECISIONMAKING CAPACITY From a conceptual standpoint, MDC has been understood to consist of four different consent abilities or standards (Appelbaum & Grisso, 1988; Grisso & Appelbaum, 1995; Roth, Meisel, & Lidz, 1977). These abilities, with their underlying definitions, are: 1. Capacity to evidence a treatment choice (focusing on the presence or absence of a decision, and not on the quality of the decision) (Roth et al., 1977), which we refer to as S1; 2. Capacity to appreciate emotionally and cognitively the personal consequences of a treatment choice (emphasizing the patient’s awareness of the consequences of a treatment decision, its emotional impact, rational requirements, and future consequences) (Roth et al., 1977), which we refer to as S3; 3. Capacity to reason about a treatment choice or make a treatment choice based on rational reasons (testing the capacity to use logical processes to compare the benefits and risks of various treatment options and weigh this information to reach a decision) (Appelbaum & Grisso, 1988), which we refer to as S4; and 4. Capacity to make a treatment choice based on an understanding of the treatment situation and alternatives (requiring memory for words, phrases, ideas, and sequences of information, and also comprehension of the fundamental meaning of information about treatment) (Appelbaum & Grisso, 1988), which we refer to as S5. In addition to these four standards, there is a consent ability described as making the reasonable treatment choice when the alternative is unreasonable, (Roth et al., 1977; Tepper & Elwork, 1984), which we refer to as S2. S2 is not an accepted clinical standard for judging consent capacity, because of concerns about arbitrariness in determining what constitutes a reasonable choice (Tepper & Elwork, 1984). However, we have used S2 as an experimental research variable to better understand subjects’ treatment preferences (Marson, Earnst et al., 2000; Marson, Ingram et al., 1995). The above standards represent different thresholds for evaluating MDC (Marson, Schmitt, Ingram, & Harrell, 1994). For example, the first standard—evidencing a choice—requires nothing more for competency than simply a subject’s communication of a treatment choice. In contrast, the fourth standard —reasoning—bases competency on a subject’s capacity to supply rational reasoning for the treatment choice. These standards can be applied readily to other competencies to consent, such as capacity to consent to research participation, and to decisional capacity in general.

68

Decision-Making Capacity and Older Persons

COMPETENCY ASSESSMENT MEASURE Over the past decade several investigators have developed instruments for assessment of decisional capacity in different patient populations (Grisso & Appelbaum, 1995; Grisso, Appelbaum, Mulvey, & Fletcher, 1995; Janofsky, McCarthy, & Folstein, 1992; Marson, Ingram et al., 1995). In 1991, our research group sought to develop a reliable and valid instrument for assessing treatment consent capacity in patients with Alzheimer’s disease and related dementias. Using the above conceptual model, we developed a psychometric instrument called the Capacity to Consent to Treatment Instrument (CCTI). The CCTI consists of two specialized clinical vignettes, vignette A (Neoplasm) and vignette B (Cardiac), that tested MDC using the consent abilities detailed above (Marson, Ingram, et al., 1995). Each CCTI vignette presents a hypothetical medical problem and symptoms, along with two treatment alternatives with associated risks and benefits. The medical content of each vignette was reviewed by a neurologist with expertise with the elderly and dementia. The vignettes, which are presented orally and in writing to subjects in an uninterrupted disclosure format (Grisso & Appelbaum, 1991), are written at a fifth- to sixth-grade reading level (Flesch, 1974), with low syntactic complexity and a moderate information load. The administration format approximates an informed consent dialogue and requires the subject to consider two different treatment options with associated risks and benefits. Vignettes are administered by having subjects simultaneously read and listen to an oral presentation of the vignette information. Subjects then answer standardized questions designed to test consent capacity under the four standards set forth above (and also S2). The CCTI has a detailed and well-operationalized scoring system for each vignette standard. In prior work with AD patients, three trained raters achieved high interrater reliability for standards with both interval scales (r >.83, p < .0001) (S3–S5) and categorical scales (> 96% agreement) (S1, S2) (Marson, Ingram et al., 1995). (We also treat S1 as an interval scale.) The CCTI scoring system permits evaluation of both a subject’s competency performance and competency status on a standard. By competency performance, we refer to the quantitative score that a subject achieves on a particular consent standard as determined by the CCTI scoring system. By competency status, we refer to the categorical outcome (capable, marginally capable, or incapable) of a subject on a standard based on use of psychometric cutoff scores derived from normal control performance (Dymek et al., 2001; Marson, Ingram et al., 1995). The CCTI has demonstrated construct and convergent neuropsychological validity in empirical clinical studies in dementia (Dymek et al., 2001; Marson et al., 1996; Marson, Cody et al., 1995; Marson, Ingram et al., 1995).

Neuropsychological Battery Neurocognitive functioning was measured with a comprehensive neuropsychological battery designed to evaluate cognitive functions clinically; this measure-

Competency in Parkinson’s Disease With Dementia

69

ment was theoretically linked to competency and dementia (Alexander, 1988; Marson et al., 1996; Marson, Ingram et al., 1995). Specifically, the neuropsychological battery tapped the cognitive domains of orientation, attention/concentration, expressive language, receptive language, visuospatial skills, verbal memory, executive function, verbal conceptualization and reasoning, and judgment. Mood was assessed with a self-report instrument.

Study Participants Twenty patients age 60 and older with idiopathic PD and cognitive impairment were recruited from the Movement Disorders Clinic at the University of Alabama at Birmingham (Dymek et al., 2001). After conducting chart reviews to determine eligibility, selected PD patients were provided handouts describing the study. Follow-up phone calls were made to interested patients. Inclusion criteria for the PD group were (1) a positive diagnosis of idiopathic PD by a neurologist with expertise in movement disorders, based on symptomatology, neurological examination, disease development, and positive response to antiparkinsonian medication; (2) patient and/or caregiver reported complaints of cognitive impairments in the PD patient; and (3) psychometric evidence of significant cognitive impairment, as measured by a Dementia Rating Scale (DRS) total score (Mattis, 1976) of 130 and below. Exclusion criteria consisted of (1) positive history of major neurologic conditions other than PD, including AD and diffuse Lewy body disease; (2) a positive history of major psychiatric disorders, including major depression but excluding minor depression and dysthymia; (3) current or past use of neuroleptics; (4) a concomitant medical illness adversely affecting cognition (e.g., obstructive pulmonary disease); (5) a history of substance abuse; and (6) prior neurosurgical intervention. All PD patients were taking antiparkinsonian medications. Although a formal dementia diagnosis using criteria from the fourth edition of the Diagnostic and Statistical Manual (DSM-IV; American Psychiatric Association, 1994) was not used in the study, most if not all of the PD patients were demented, as reported by the participating neurologist (Dr. Atchison, coauthor on the original study) and as reflected by the DRS total score mean of 117 (SD = 14.5) and score range of 72 to 129 (Dymek et al., 2001) (Table 4.1). Thus, the PD patient group in this study probably closely approximated how a formally diagnosed group of patients with Parkinson’s disease dementia syndrome would perform. We hereafter reference the PD group as PDDS to reflect its probable dementia status. Older controls previously were recruited from a Program Project in Alzheimer’s Disease (NIA 5P01 AG06569–05) and an Alzheimer’s Disease Center Core (NIA 1P30 AG101163–1). Control subjects were screened using neurological, psychiatric, neuropsychological, neuroradiological (including cranial magnetic resonance imaging or computed tomography scans), and laboratory evaluations. Diagnostic assignment as a control was made by consensus of a neurologist, a psychiatrist, and a neuropsychologist.

Decision-Making Capacity and Older Persons

70

Table 4.1 Group Comparisons on Demographic and Dementia Screen Variables Variable

Older controls (n = 20) Mean (sd) Range

PDDS patients (n = 20) Mean (sd) Range

F

p

Age Education DRS total score

68.1 (5.8) 14.8 (2.3) 141.2 (3.1)

75.0 (7.5) 63–86 14.3 (3.1) 9–20 117.3 (14.5) 72–129

10.4 0.34 51.8

.003 .56 .0001

60–9 9–18 138–144

DRS = Dementia Rating Scale PDDS = Parkinson’s disease dementia sundrome

As reflected in Table 4.1, the control and PDDS patients groups did not differ in years of education (Dymek et al., 2001). The PDDS group was older than the control group. As expected, the mean DRS total score of the PDDS group fell significantly below that of controls and reflected an overall mild level of mild cognitive impairment. The mean DRS total score of the control group was indicative of normal cognitive function (Dymek et al., 2001).

DATA ANALYSES Competency Performance on Capacity Standards For each capacity standard, subject scores were summed across the two vignettes to create a composite variable (except for S2, which is specific to Vignette A). PDDS and control groups were compared on these composite variables using ANOVA (S1.S3–S5). Because S2 was scored on a dichotomous basis (pass/fail), chi-square analysis was used for this variable.

Competency Outcomes on Capacity Standards Because competency is ultimately a categorical status, we also investigated the competency outcome status (capable, marginally capable, incapable) of PDDS subjects for each standard. As discussed below, these outcomes were identified psychometrically for scientific purposes and do not represent the actual legal competency status of the participants. For each of the three standards using interval data (S3–S5), a PDDS patient’s performance was classified into one of the three competency outcomes using cutoff scores statistically derived from control performance. Cutoff scores were established that defined capable as a score equal to or greater than 1½ standard deviations (SDs) below the control mean on the standard, marginally capable as a score falling between 1½ and 2½ SDs below the control group mean on the standard, and incapable as a score falling below 2½ SDs below

Competency in Parkinson’s Disease With Dementia

71

the control mean on the standard. Although statistical approaches to assigning competency status inevitably have an arbitrary aspect, our approach reflects contemporary methods for defining neuropsychological impairment, and thus represents a theoretically based modification of the initial cut-score approach used successfully in prior competency research (Griffith et al., 2003; Marson et al., 1996; Marson, Ingram et al., 1995). A different approach was used for the two standards using categorical data (S1 and S2). For S1, which has a possible score range of 0 to 4, the cutoff for capable was set using a perfect score (4 points), with marginally capable as the next lowest possible score (3 points), and incapable as the remaining score range (0–2 points). For S2, which has a range of 0 to 1, there were only two possible outcomes: capable (1) and incapable (0).

Neuropsychological Predictors of Competency Performance Univariate and multivariate analyses were conducted to identify key neurocognitive predictors of PDDS group performance on each standard. Univariate correlations were used as a data reduction step to identify potential predictors of standard performance for the multivariate analyses. For each standard, the four neurocognitive variables with the strongest univariate correlations were selected for follow-up multivariate analyses. This number of predictor variables reflected the minimum 5:1 subject to predictor ratio suggested by Tabachnick and Fidell (1996) for multiple regression equations. Each set of univariate predictors was entered into stepwise regression analyses for its respective standard, using the performance score as the dependent variable and the selected neuropsychological measures as the predictor variables.

Neuropsychological Predictors of Capacity Outcomes For each standard, nonparametric discriminant function analysis (DFAs) using SAS NEIGHBOR (SAS Institute, 1985) were conducted to identify predictors of capacity status (capable, marginally capable, and incapable) for the PD sample.

RESULTS Group Performance and Outcomes on the CCTI Capacity Standards As shown in Table 4.2, the PDDS group performed significantly below the control group (p < .05) on all four main CCTI consent abilities: evidencing a choice, appreciating consequences, reasoning about treatment (rational reasons), and understanding treatment (S1, S3–S5) (Dymek et al., 2001). PDDS patients performed equivalently with controls only on the experimental ability of reasonable choice (S2) (Dymek et al., 2001).

Decision-Making Capacity and Older Persons

72

Table 4.2 Group Comparisons on CCTI Consent Standard Variables Variable

Older controls (n = 20) Mean (sd) Range

Evidencing choice (S1) 4.0 (0.0) Reasonable choice (S2) 0.95 (0.2) Appreciate consequences (S3) 8.9 (1.2) Reasoning about treatment (S4) 10.9 (3.7) Understanding treatment (S5) 59.0 (6.0)

PDDS patients (n = 20) Mean (sd) Range

F

p

4

3.6 (.8)

1–4

5.9

.020

0–1

0.95 (0.2)

0–1

——

——

6–10

7.5 (2.5)

1–10

5.7

.022

6–21

5.1 (3.2)

1–11

27.9

.000

51–68

36.8 (13.0)

1–60

47.8

.000

PDDS = Parkinson’s disease dementia sundrome

Capacity status of PDDS patients on the standards was classified (capable, marginally capable, incapable) using psychometric cutoff scores referenced to control group performance (Marson, Ingram et al., 1995) (Table 4.3). PD patients demonstrated a pattern of capacity compromise (defined as the combination of marginTable 4.3 Capacity Outcomes by CCTI Standard and Group Standard/group Evidencing choice (S1) Controls PDDS Patients Reasonable choice (S2) Controls PDDS Patients Appreciate consequences (S3) Controls PDDS Patients Reasoning about treatment (S4) Controls PDDS Patients Understanding treatment (S5) Controls PDDS Patients

Capable

Marginally capable

Incapable

20 (100%) 14 (70%)

0 (0%) 5 (25%)

0 (0%) 1 (5%)

19 (95%) 19 (95%)

—— ——

1 (5%) 1 (5%)

17 (85%) 11 (55%)

3 (15%) 5 (25%)

0 (0%) 4 (20%)

20 (100%) 9 (45%)

0 (0%) 10 (50%)

0 (0%) 1 (5%)

20 (100%) 4 (20%)

0 (0%) 3 (15%)

0 (0%) 13 (65%)

Capable: For S3–S5, scores falling at or above 1½ SDs below the control group mean on the standard. For S1, a score of 4. For S2, a score of 1. Marginally capable: For S3–S5, scores falling between 1½ and 2½ SDs below the control group mean on the standard. For S1, a score of 3. No marginally capable outcomes are possible on S2. Incapable: For S3–S5, scores falling 2½ or more SDs below the control group mean on the standard. For S1, a score of 0–2. For S2, a score of 0. PDDS = Parkinson's disease dementia syndrome

Competency in Parkinson’s Disease With Dementia

73

ally capable and incapable outcomes) that related to stringency of the standard: S1 (25%), S2 (5%), S3 (45%), S4 (55%), and S5 (80%). Control subjects, with few exceptions, were capable under all five standards.

Group Comparisons on Neuropsychological and Depression Screen Variables: Table 4.4 sets forth group comparisons on neuropsychological and depression screening variables. As expected, PDDS patients performed below controls on virtually all neurocognitive measures (p < .001). PDDS patients performed well within

Table 4.4 Group Means and Standard Deviations (SDs) of Neuropsychological Measures PDDS group

Control group

Measure

Mean

SD

Mean

SD

p

DRS total score Attention Initiation/perseveration Construction Conceptualization Memory WMS-R Mental control Information Logical memory I Logical memory II Digit span WAIS-R Similarities Comprehension Boston Naming Test Phonemic fluency (CFL) Semantic fluency (animal) Simple auditory comprehension Token test EXIT 25 Trails A (seconds) Trails B (seconds) Geriatric Depression Scale

117.3 33.4 26.1 4.5 32.5 19.0

14.5 2.6 8.0 1.1 5.1 3.5

141.2 36.7 36.6 5.3 38.2 24.5

3.1 0.6 1.0 0.9 1.1 1.1

.001 .001 .001 .02 .001 .001

3.3 11.9 13.8 8.3 11.3

2.1 1.3 5.6 5.0 3.8

** ** 30.2 27.7 15.2

** ** 6.5 7.5 3.9

.001 .001 .003

12.4 15.7 51.5 19.6 8.9 9.8 12.1 19.0 188.9 350.0 3.5

5.6 5.8 4.1 10.6 4.8 0.7 3.7 7.3 131.5 94.6 2.0

** 25.7 57.5 39.9 19.0 10.0 15.6 ** 35.8 82.6

** 2.9 2.2 7.6 3.5 0.0 0.8 ** 17.4 36.9 **

** Neuropsychological data not available DRS = Dementia Rating Scale PDDS = Parkinson’s disease dementia syndrome

.001 .001 .001 .001 .21 .001 .001 .001 **

Decision-Making Capacity and Older Persons

74

normal limits on a self-report measure of depression (Geriatric Depression Scale) (GDS; Yesavage, 1983). Moreover, the GDS did not emerge as a predictor of capacity performance or status (see below), suggesting that in the PDDS group depression was not a key factor influencing capacity or neuropsychological performance.

Neuropsychological Predictors of Capacity Performance in the PDDS Group Evidencing a Treatment Choice Tables 4.5 and 4.6 present the four strongest univariate correlates and also the multivariate predictor of PDDS patient performance and capacity outcome on S1. DRS Memory emerged as the only stepwise regression predictor of S1 scores. DRS Memory correctly classified 70% of PDDS patient outcomes on S1, well above chance levels (33%). Using both DRS Memory and WAIS-R Comprehension as predictor variables, a classification rate of 100% was obtained. Appreciating Consequences of Choice and Reasonable Choice No neuropsychological measures correlated significantly (p < .05) with S3 or S2 on the univariate level (Dymek et al., 2001). Accordingly, S3 and S2 were excluded from subsequent multivariate analyses and no predictor models are reflected in Table 4.5.

Table 4.5 Neuropsychological Predictors of Capacity Standard Performance for PDDS Patients (n = 20)

Standard Evidencing choice (S1)

Rational reasons (S2)

Understanding treatment (S5)

Predictor variable(s)

Univariate correlation r p

Stepwise regression cumR2 p

DRS Memory WAIS-R Comprehension DRS Attention EXIT 25 EXIT 25 Trails B DRS Attention WMS-LM II

.73 .67 .58 –.53 –.67 –.60 .58 .48

.000 .002 .008 .02 .002 .005 .008 .04

.55

.000

.45

.002

EXIT 25 DRS Memory WAIS-R Comprehension WMS-R LM II

–.75 .71 .70 .65

.000 .000 .001 .002

.56 .68

.000 .000

DRS = Dementia Rating Scale

Competency in Parkinson’s Disease With Dementia

75

Table 4.6 Neuropsychological Predictors of Capacity Standard Outcomes in the PDDS Group Standard

Predictor Variable (s)

Classification accuracy rate*

Evidencing choice (S1) DRS Memory DRS Memory/WAIS-R Comprehension Rational reasons (S4) EXIT 25 EXIT 25/Trails B Understanding treatment (S5) EXIT 25 EXIT 25/ DRS Memory

70% 100% 90% 95% 90% 95%

*Percentage of capacity outcomes on each standard that were accurately classified by the respective neuropsychological predictor variable(s). Because there are three outcomes (capable, marginally capable, incapable), a chance classification rate would be 33%.

Reasoning/Rational Reasons for Choice Tables 4.5 and 4.6 present univariate correlates and multivariate predictor of PDDS patient performance and capacity outcome on S4 (Dymek et al., 2001). EXIT 25 emerged as the only multivariate predictor of S4 scores. Regarding competency status, the correct classification rate using EXIT 25 as the sole predictor of competency outcome was 90%. A classification rate of 95% was obtained when EXIT 25 and Trails B were the predictor variables. Understanding Treatment Situation/Choices Tables 4.5 and 4.6 present univariate correlates and multivariate predictors of PDDS patient performance and capacity outcome on S5 (Dymek et al., 2001). EXIT 25 emerged as the step 1 predictor, and DRS Memory emerged as the step 2 predictor of S5 scores. Regarding competency status, the classification rate using EXIT 25 as the sole predictor variable was 90%. The classification rate using both EXIT 25 and DRS Memory as predictor variables was 95%.

DISCUSSION The study reported above is the first empirical investigation of medical decisionmaking capacity in PD, and one of the very few extant studies of higher order IADL in PD. Our findings indicate that MDC is significantly impaired in PD patients with cognitive impairment and dementia. In addition, our findings suggest that executive dysfunction may be the primary neurocognitive mechanism for competency loss in PD and its dementia syndrome.

76

Decision-Making Capacity and Older Persons

Capacity Findings PDDS patients demonstrated significant deficits across all four CCTI capacity standards. The PDDS group demonstrated a trend toward poorer performance on the standards as their difficulty increased, with impairment greatest for the most complex standards of reasoning and understanding. Similarly, capacity outcomes of the PDDS patients reflected a pattern of increasing compromise (marginally capable and incapable outcomes) across these four standards, ranging from 30% compromise on evidencing a choice (S1) to 80% compromise on understanding treatment (S5). Similar to findings in studies with AD patients (Marson, Ingram et al., 1995), it appears that these four standards may be hierarchical in difficulty for PDDS patients, with standards tapping reasoning (S4) and medical treatment information comprehension (S5) being the most difficult and requiring a level of information retention and processing beyond the capacity of many PDDS patients. We were initially surprised that PDDS patients also showed impairments in performance and outcome on S1, a minimal CCTI standard requiring only communication of a treatment choice. Examination of the actual PDDS patient responses on S1 indicated a tendency toward indecisiveness and tangentiality, and although most patients were able to state a treatment choice, prompting was required in some cases. The CCTI score on S1 is reduced if prompting is required; thus, there was a relatively high proportion of marginally competent outcomes for PD patients on LS1 (25%). After further consideration, the findings of indecisiveness on S1 suggested that bradyphrenia and executive dysfunction may interfere with PDDS patients’ capacity to communicate treatment choices. In contrast, PDDS patients performed equivalently to controls on the ability to make the reasonable treatment choice when the alternative is clearly unreasonable (S2). Thus, these patients appear to retain the ability to distinguish a reasonable treatment option from one that is unreasonable. The study findings raise significant concerns about the consent capacity of PD patients with cognitive impairment and dementia. In particular, PDDS patients had difficulty performing on more difficult, clinically relevant standards for competency that tap reasoning and comprehension abilities. It is likely, therefore, that, in the usually protracted and progressive course of their illness, many patients with PD will become impaired and, in some cases, incapable of consenting to treatment. This conclusion highlights the importance of careful and continuing assessment of competency in PD patients throughout their illness.

Neuropsychological Finding A second aim of the present study was to identify neurocognitive changes associated with declining competency in PDDS patients. Our findings suggest that declines in executive functions, and to a lesser extent memory, are key neurocognitive changes associated with competency loss in PD.

Competency in Parkinson’s Disease With Dementia

77

Executive dysfunction was closely associated with PDDS patient performance on S5 (understanding treatment) and also S4 (reasoning about treatment). Specifically, simple measures of executive function (EXIT 25, Royall, Mahurin, & Gray, 1992) and memory (DRS Memory, Mattis, 1976) predicted S5 performance, together accounting for 68% of score variance. Using the EXIT 25, nonparametric DFA showed a very high classification rate of LS5 competency outcomes (90%), which increased to 95% when both the EXIT 25 and DRS Memory were used. The EXIT 25 is a bedside test of simple executive abilities, including verbal and spatial fluency, inhibition, primitive reflexes, and set flexibility (Royall et al., 1992). DRS Memory is a composite measure of memory, consisting of short term verbal recall items, orientation items, and verbal and visual recognition items (Mattis, 1976). Thus, basic executive and, to a lesser extent, memory functions appear to mediate PDDS patients’ capacity to comprehend a treatment situation and choices. This finding was consistent with the task demands of S5, which require conceptual organization as well as recall of factually complex material (Dymek et al., 1999). Executive dysfunction also was closely associated with PDDS patient performance on S4 (rational reasons). Here again, the EXIT 25 was the key predictor of S4 performance, accounting for 45% of score variance. Using the EXIT 25, nonparametric DFA showed a very high classification rate of LS4 competency outcomes (90%), which increased to 95% when using both EXIT 25 and Trails B (Reitan, 1958). Trails B is a measure of visuomotor sequencing and set flexibility that is strongly associated with executive ability (Reitan, 1958). Thus, basic executive functions also appear to mediate PDDS patients’ capacity to provide rational reasons for a choice of medical treatment. This finding was consistent with the task demands of S4, which require a subject to integrate information regarding two treatment choices and their risk/benefit profiles and to provide logical reasons (pro and con) for the treatment choice. Simple memory and comprehension/judgment abilities were associated with PDDS patient performance on S1. As discussed above, S1 is a minimal standard requiring only communication of a treatment choice. DRS Memory emerged as the only multivariate predictor of PDDS patients’ S1 scores (R2 = .55, p = .000), and it correctly classified 70% of patient competency outcomes. When DRS Memory was coupled with WAIS-R Comprehension, they together correctly classified 100% of LS1 competency outcomes. These findings suggest that simple memory and also comprehension/judgment deficits underlie PD patients’ declining capacity simply to communicate a treatment choice (LS1). The available neuropsychological findings from this study are consistent with prior literature proposing a strong association between the frontal-subcortical disconnection syndrome of PD and executive dysfunction (Mahurin, Feher, Nance, Levy, & Pirozzolo, 1993; White, Au, Durso, & Moss, 1992). The most problematic CCTI standards were the reasoning and comprehension standards (S4 and S5) that are cognitively most complex (Dymek et al., 1999; Marson, Ingram et al., 1995). Previous research has shown that PD patients perform well on simple cognitive

78

Decision-Making Capacity and Older Persons

tasks, but as the complexity of the tasks increases, patients’ performance deteriorates, likely a result of impaired higher order executive control of cognitive processes (Girotti et al., 1986; Gotham, Brown, & Marsden, 1988). The findings also are consistent with research on patients with frontal lobe dementia and significant executive dysfunction who show impaired decision-making capacity despite intact language, memory, perception, and absence of apraxia and agnosia (Schindler, Rachmandi, Matthews, & Podell, 1995). Thus, the findings of the present study point to important relationships in PD between cognitive impairment, executive dysfunction, and competency loss.

Limitations Limitations of the present study should be noted. First, the small samples of controls and PDDS patients suggest the need for caution concerning the generalizability of the results. Second, the CCTI’s psychometrically based performance and outcome results should not be construed as an actual index of a subject’s legal competency. Rather, the CCTI is an adjunct objective tool to be used by health care professionals, in conjunction with other clinical and historical information, to make informed clinical judgments about the quality of an individual’s medical decisionmaking, and thereby their competency to make such decisions. Although CCTI results in the present study indicated deficits in PD patients’ consent capacity performance and outcomes, such findings must not be confused with legal competency outcomes, which are a judgment of the legal system. Finally, the vignette methodology employed in the present study has certain limitations. Decision-making concerning a real and personal medical problem arguably is distinct from decisionmaking in a hypothetical medical situation (Marson & Harrell, 1999; Marson, Ingram et al., 1995). It is possible that PDDS patients facing real, personal medical issues might demonstrate treatment decision-making approaches somewhat different from those elicited by the CCTI.

CONCLUSION Parkinson’s disease is a progressive and highly debilitating motor and neurocognitive disorder that is a common cause of dementia in later life. The chronic and progressive nature of PD compels patients and families to make ongoing medical treatment decisions over the course of a protracted and challenging illness. The study reported here was the first to systematically examine MDC in cognitively and demented patients with PD (Dymek et al., 2001). The findings strongly indicate that consent capacity is impaired in this patient group. Future research in the area of competency in PD may take several directions. First, studies need to replicate these findings in larger cross-sectional samples of patients with PD and dementia. Second, comparison studies of MDC in AD and

Competency in Parkinson’s Disease With Dementia

79

PDDS promises to reveal a great deal about the different neurocognitive profiles of these diseases and how they translate into functional impairments. Finally, longitudinal studies of MDC in PD and its dementia syndrome can reveal the natural history of competency loss in PD and support the efforts of clinicians in developing interventions to support the consent capacity of older patients with PD.

ACKNOWLEDGMENTS This research was supported in part by an Alzheimer’s Disease Center Cores grant (NIH, NIA 1 P30 AG10163–1), an Alzheimer’s Disease Program Project grant (NIH, NIA 5 P01 AG06569–05), an Alzheimer’s Disease Research Center grant (NIH, NIA 1P50 AG16582–01), and the Alzheimer’s Disease Cooperative Study (NIH, NIA AG 10483–12) (Thal, PI). All tables in this chapter are reprinted with permission from AAN Enterprises, Inc. from Dymek, M., Atchison, P., Harrell, L., & Marson, D.C. (2001). Competency to consent to treatment in cognitively impaired patients with Parkinson’s disease. Neurology, 56, 17–24.

REFERENCES Aarsland, D., Anderson, K., Larsen, J., Lolk, A., & Kragh–Sorenson, P. (2003). Prevalence and characteristics of dementia in Parkinson’s disease: An 8–year prospective study. Archives of Neurology, 60(3), 387–392. Aarsland, D., Larsen, J., & Tandberg, E. (1996). Frequency of dementia in Parkinson’s disease. Archives of Neurology, 53(6), 538–342. Alexander, M. (1988). Clinical determination of mental competence. Archives of Neurology, 45(1), 23–26. American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author. Appelbaum, P., & Grisso, T. (1988). Assessing patients’ capacities to consent to treatment. New England Journal of Medicine, 319(25), 1635–1638. Burn, D. J., & McKeith, I. G. (2003). Current treatment of dementia with Lewy bodies and dementia associated with Parkinson’s disease. Movement Disorders, 18(Suppl 6), S72–S79. Burn, D. J., Rowan, E. N., Minett, T., Sanders, J., Myint, P., Richardson, J., Thomas, A., Newby, J., Reid, J., O’Brien, J. T., & McKeith, I. G. (2003). Extrapyramidal features in Parkinson’s disease with and without dementia and dementia with Lewy bodies: A cross-sectional comparative study. Movement Disorders,18(8), 884–889. Cummings, J., & Benson, D. (1992). Dementia: A clinical approach. Stoneham, MA: Butterworth. Dickson, D. (2000). Alzheimer–Parkinson disease overlap: Neuropathology. In C. Clark & J. Trojanowski (Eds.), Neurodegenerative dementias (pp. 247–259). New York: McGraw–Hill.

80

Decision-Making Capacity and Older Persons

Dodel, R., Singer, M., Kohen–Volland, R., Szucs, T., Rathay, B., Scholz, E., & Oertel, W. (1998). The economic impact of Parkinson’s disease: An estimation based on a 3 month prospective analysis. Pharmacoeconomics, 14(3), 299–312. Dymek, M., Atchison, P., Harrell, L., & Marson, D. (2001). Competency to consent to treatment in cognitively impaired patients with Parkinson’s disease. Neurology, 56, 17–24. Dymek, M. P., Marson, D. C., & Harrell, L. (1999). Factor structure of capacity to consent to medical treatment in patients with Alzheimer’s disease: An exploratory study. Journal of Forensic Neuropsychology, 1, 27–48. Earnst, K., Marson, D., & Harrell, L. (2000). Cognitive models of physicians’ legal standard and personal judgments of competency in patients with Alzheimer’s disease. Journal of the American Geriatrics Society, 48(8), 919–927. Flesch, R. (1974). The art of readable writing. New York: Harper & Row. Galasko, D., & Salmon, D. (2000). The Alzheimer–Parkinson connection. In C. Clark & J. Trojanowski (Eds.), Neurodegenerative dementias (pp. 229–240). New York: McGraw–Hill. Girotti, G., Grassi, M., Carella, F., Soliveri, P., Musicco, M., Lamperti, E., & Caraceni, T. (1986). Possible involvement in attention processes in Parkinson’s disease. In M. Yahr & K. Bergmann (Eds.), Advances in neurology (pp. 425–429). New York: Raven Press. Gotham, A., Brown, R., & Marsden, C. (1988). “Frontal” cognitive functions in patients with Parkinson’s disease “on” and “off” levodopa. Brain, 111(Pt 2), 199–231. Griffith, H., Belue, K., Sicola, A., Krzywanski, S., Zamrini, E., Harrell, L., & Marson, D. (2003). Impaired financial abilities in mild cognitive impairment: A direct assessment approach. Neurology, 60(3), 449–457. Grisso, T., & Appelbaum, P. (1991). Mentally ill and non–mentally ill patients’ abilities to understand informed consent disclosure for medication. Law and Human Behavior, 15(4), 377–388. Grisso, T., & Appelbaum, P. (1995). The MacArthur Treatment Competence Study. III: Abilities of patients to consent to psychiatric and medical treatments. Law and Human Behavior, 19(2), 149–169. Grisso, T., Appelbaum, P., Mulvey, E., & Fletcher, K. (1995). The MacArthur Treatment Competence Study. II: Measures of abilities related to competence to consent to treatment. Law and Human Behavior, 19(2), 127–148. Hughes, A., Daniel, S., Kilford, L., & Lees, A. (1992). Accuracy of diagnosis of idiopathic Parkinson’s disease: A clinicopathological study of 100 cases. Journal of Neurology, Neurosurgery, and Psychiatry, 55(3), 181–184. Hughes, A., Shlomo, Y., Daniel, S., & Lees, A. (1992). What features improve the accuracy of clinical diagnosis in Parkinson’s disease: A clinicopathologic study. Neurology, 42(6), 1142–1146. Jacobs, D., Stern, Y., & Mayeux, R. (1997). Dementia in Parkinson’s disease, Huntington’s disease, and other degenerative conditions. In T. Feinberg & M. Farah (Eds.), Behavioral neurology and neuropsychology (pp. 579–587). New York: McGraw–Hill. Janofsky, J., McCarthy, R., & Folstein, M. (1992). The Hopkins Competency Assessment Test: A brief method for evaluating patients’ capacity to give informed consent. Hospital and Community Psychiatry, 43(2), 132–136. Kapp, M. (1999). Geriatrics and the law: Patient rights and professional responsibilities (3rd ed.) New York: Springer. Kim, S., Caine, E., Currier, G., Leibovici, A., & Ryan, M. (2001). Assessing the compe-

Competency in Parkinson’s Disease With Dementia

81

tence of persons with Alzheimer’s disease in providing informed consent for participation in research. American Journal of Psychiatry, 158(5), 712–717. Langston, J., Widner, H., Brooks, D., Fahn, S., Freeman, T., Goetz, C., & Watts, R. (1992). Core assessment program for intracerebral transplantation. Movement Disorders, 7(1), 2–13. Levy, G., Jacobs, D., Tang, M., Cote, L., Louis, E., Alfaro, B., Mejia, H., Stern, Y., & Marder, K. (2002). Memory and executive function predict dementia in Parkinson’s disease. Movement Disorders, 17(6), 1221–1226. Mahler, M., & Cummings, J. (1990). Alzheimer disease and the dementia of Parkinson disease: Comparative investigations. Alzheimer Disease and Associated Disorders, 4(3), 133–149. Mahurin, R., Feher, E., Nance, M., Levy, J., & Pirozzolo, F. (1993). Cognition in Parkinson’s disease and related disorders. In R. Parks, R. Zec, & R. Wilson (Eds.), Neuropsychology of Alzheimer’s disease and other dementias (pp. 247–268). New York: Oxford University Press. Marson, D. (2002, Spring). Competency assessment and research in an aging society. Generations, 99–103. Marson, D. C., Chatterjee, A., Ingram, K. K., & Harrell, L. E. (1996). Toward a neurologic model of competency: Cognitive predictors of capacity to consent in Alzheimer’s disease using three different legal standards. Neurology, 46(3), 666–672. Marson, D. C., Cody, H. A., Ingram, K. K., & Harrell, L. E. (1995). Neuropsychologic predictors of competency in Alzheimer’s disease using a rational reasons legal standard. Archives of Neurology, 52(10), 955–959. Marson, D., Earnst, K., Jamil, F., Bartolucci, A., & Harrell, L. (2000). Consistency of physicians’ legal standard and personal judgments of competency in patients with Alzheimer’s disease. Journal of the American Geriatrics Society, 48(8), 911–918. Marson, D. C., & Harrell, L. E. (1999). Neurocognitive models that predict physician judgments of capacity to consent in patients with mild Alzheimer’s disease. In D. Park, R. Morrell, & K. Shifrin (Eds.), Medical information processing and aging. New York: Lawrence Erlbaum. Marson, D. C., Hawkins, L., McInturff, B., & Harrell, L. E. (1997). Cognitive models that predict physician judgments of capacity to consent in mild Alzheimer’s disease. Journal of the American Geriatrics Society, 45(4), 458–464. Marson, D., & Ingram, K. (1996). Competency to consent to treatment: A growing field of research. Journal of Ethics, Law and Aging, 2, 59–63. Marson, D. C., Ingram, K. K., Cody, H. A., & Harrell, L. E. (1995). Assessing the competency of patients with Alzheimer’s disease under different legal standards. Archives of Neurology, 52(10), 949–954. Marson, D. C., McInturff, B., Hawkins, L., Bartolucci, A., & Harrell, L. E. (1997). Consistency of physician judgments of capacity to consent in mild Alzheimer’s disease. Journal of the American Geriatrics Society, 45(4), 453–457. Marson, D., Sawrie, S., Snyder, S., McInturff, B., Stalvey, T., Boothe, A., Aldridge, T., Chatterjee, A., & Harrell, L. (2000). Assessing financial capacity in patients with Alzheimer’s disease: A conceptual model and prototype instrument. Archives of Neurology, 57(6), 877–84. Marson, D. C., Schmitt, F., Ingram, K. K., & Harrell, L. E. (1994). Determining the competency of Alzheimer’s patients to consent to treatment and research. Alzheimer’s Disease and Associated Disorders, 8(Suppl 4), 5–18.

82

Decision-Making Capacity and Older Persons

Mattis, S. (1976). Dementia rating scale. In R. Bellack & B. Karasu (Eds.), Geriatric psychiatry. New York: Grune & Stratton. Mayeux, R., Denaro, J., Hemenegildo, N., Marder, K., Tang, M., Cote, L., & Stern, Y. (1992). A population based investigation of Parkinson’s disease with and without dementia: Relationship to age and gender. Archives of Neurology, 49(5), 492–497. McKeith, I., Galasko, D., & Kosaka, K. (1996). Consensus guidelines for the clinical and pathological diagnosis of dementia with Lewy bodies (DLB): Report of the Consortium on DLB International Workshop. Neurology, 47(5), 1113–1124. National Institute of Neurologic Disorders and Stroke. (2003). Parkinson’s disease research agenda: Enhancing the research process. Retrieved April 18, 2003, from www.ninds.nih.gove/about_ninds/nihparkiinsons_agenda.htm. Nussbaum, R., & Ellis, C. (2003). Alzheimer’s disease and Parkinson’s disease. New England Journal of Medicine, 348(14), 1356–1364. Olanow, C., Watts, R., & Koller, W. (2001). An algorithm (decision tree) for the management of Parkinson’s disease (2001): Treatment guidelines. Neurology, 56(Suppl 5), S1–S88. Reitan, R. (1958). Validity of the Trail Making Test as an indication of organic brain damage. Perceptual and Motor Skills, 8, 271–276. Roth, L., Meisel, A., & Lidz, C. (1977). Tests of competency to consent to treatment. American Journal of Psychiatry, 134(3), 279–284. Royall, D., Mahurin, R., & Gray, K. (1992). Bedside assessment of executive cognitive impairment: The Executive Interview. Journal of the American Geriatrics Society, 40(12), 1221–1226. SAS Institute, I. (1985). User’s guide, Version 5 (3rd ed.). Cary, NC: Author. Schindler, B., Ramchandani, D., Matthews, M., & Podell, K. (1995). Competency and the frontal lobe: The impact of executive dysfunction on decisional capacity. Psychosomatics, 36(4), 400–404. Stern, Y., Richards, M., Sano, M., & Mayeux, R. (1993). Comparison of cognitive changes in patients with Alzheimer’s disease and Parkinson’s disease. Archives of Neurology, 50(10), 1040–1045. Tabachnick, B. G., & Fidell, L. S. (1996). Using multivariate statistics (3rd ed.). New York: HarperCollins. Tepper, A., & Elwork, A. (1984). Competence to consent to treatment as a psychological construct. Law and Human Behavior, 8(3-4), 205–223. Twelves, D., Perkins, K., & Counsell, C. (2003). Systematic review of incidence studies in Parkinson’s disease. Movement Disorders, 18(1), 19–31. White, R., Au, R., Durso, R., & Moss, M. (1992). Neuropsychological function in Parkinson’s disease. In R. White (Ed.), Clinical syndromes in adult neuropsychology: The practitioner’s handbook. New York: Elsevier Science. Woods, S., & Troster, A. (2003). Prodromal frontal/executive dysfunction predicts incident dementia in Parkinson’s disease. Journal of the International Neuropsychology Society, 9(1), 17–25. Yesavage, J. (1983). Development and validation of a geriatric depression screening scale: A preliminary report. Journal of Psychiatric Research, 17(1), 37–49.

Ethics, Law, and Aging Review, Vol. 10, 2004 © 2004 Springer Publishing Company

Chapter 5

Decisional Capacity in Theory and Practice: Legal Process Versus “Bumbling Through” Marshall B. Kapp

G

uardianship is a part of the legal system that has evolved over hundreds of years to protect the interests of individuals, many of whom are older, who have serious cognitive and/or emotional impairments that interfere with the present capacity to make autonomous, authentic choices regarding various personal and financial aspects of their lives. The revision of guardianship law and practice remains an active topic of interest for service providers, policy makers, and advocates involved with older persons in the United States and elsewhere. A broad array of invited American legal academic, practitioner, and judicial experts in the aging and guardianship field gathered for two days at the end of 2001 at Stetson University School of Law in St. Petersburg, Florida, for an event labeled by its cosponsors the “Wingspan Conference” (Symposium, 2002). Participants at Wingspan met for the assigned purpose of reviewing and revising the recommendations made 13 years prior at the Wingspread Conference (American Bar Association Commission on the Mentally Disabled, 1989), which was organized in reaction to revelations of the Pulitzer Prize–winning Associated Press initiative on guardianship in the United States in the mid-1980s. 83

84

Decision-Making Capacity and Older Persons

The subjects debated by Wingspan participants and others involved in ongoing guardianship law reform endeavors—the substantive, procedural, and administrative aspects of formal, legal guardianship and formal diversion alternatives to guardianship—are undeniably important. However, for the majority of persons in the de facto “gray zone” or netherworld of decisional capacity and their families, the set of issues that made up most of the conference’s agenda are, at the most, of only secondary significance. This chapter explores and expands on this thesis. First, it briefly outlines the key theoretical legal parameters of the decisional capacity issue in the USA. Next, those theoretical parameters are contrasted with the practical reality presented by most situations involving actual incapacitated persons. One then asks what message advocates of older persons ought to be conveying to, and which behaviors we should be encouraging in, the health care, social service, and financial professionals who are responsible for the clinical and business practice, as opposed to the legal theory, that actually affects the quality of life for most decisionally impaired (who may or may not be incapacitated) persons. Finally, some public policy ramifications of the foregoing questions are identified.

DECISIONAL INCAPACITY IN LEGAL THEORY According to contemporary American legal theory, citizens live in an arms-length world of strangers. In this world, all personal decisional authority resides within the adult individual unless and until that authority is transferred by formal legal means (namely, judicial appointment of a guardian or the execution of a valid power of attorney instrument) to another specific person. Decisional authority regarding personal issues in the legalistic model is atomistic, individualistic, singular, and sequential; only one person at a time can hold power. All adults are legally presumed to be capable of making their own decisions. In theory, that presumption can be rebutted or overcome only by official action. Such action might include a judicial adjudication of incompetence in the guardianship context. It also might include a physician’s documented determination of incapacity when the effectiveness of an agent’s authority under a durable power of attorney depends on that medical determination. Moreover, the legitimacy of this current model for protecting both the rights and the well-being of alleged or actual incapacitated persons rests heavily on society’s faith that the courts and the medical profession, utilizing appropriate consultation with mental health experts, are able to accurately and reliably determine when an alleged incapacitated person is so incapacitated that the sequential transfer of legal decisional authority should be triggered. The judicial process and medical professionals are depended on as being able to definitively distinguish between capacity and incapacity in particular persons, even on a decision-specific and timespecific basis.

Decisional Capacity in Theory and Practice

85

DECISIONAL INCAPACITY IN PRACTICE In real life, autonomy in making personal choices is often not exercised in the atomistic and sequential manner embodied in legal theory. In practice, many older persons regularly delegate their decision-making authority to chosen agents without any formal legal trappings (“Doctor, ask my daughter”). Even more frequent is a voluntary informal, non-explicit sharing of authority between the individual and one or more partners in decision-making (“Doctor, talk to my daughter and me together”) (Gillick, 2001). While a variety of legal mechanisms, such as joint ownership of property, are in place to enable the sharing of financial decision-making authority among multiple parties, there do not exist comparable mechanisms recognizing and facilitating the sharing of authority regarding non-financial, personal decisions about such matters as medical care and residential arrangements (Kapp, 1991). When a person is de facto incapable of explicitly delegating decisional authority to or sharing decisional authority with another, the authority to make decisions for that person very often gets transferred to others anyway as a matter of custom and expediency without formal legal approval. This occurs, for instance, when third parties such as health care providers look to family members to make crucial medical decisions for a relative who cannot speak for herself, even in the absence of a guardianship appointment or a prior or contemporaneous explicit delegation of authority by the patient/client (Callahan, 2000). Actual practice also diverges from legal theory in another essential respect. In contrast to the law’s naive’ presumption about the ability of judges and medical professionals to draw neat, clean, dyadic (either/or) distinctions between decisional capacity and incapacity, accurately determining capacity in particular cases often turns out in practice to be a much more complex and uncertain matter. A number of factors contribute to this complexity and uncertainty. Ironically, these include certain provisions in contemporary guardianship statutes. First, there is consensus today, as embodied in the guardianship statutes that every state has rewritten since the late 1980s, that decisional capacity must be assessed on a decision-specific rather than a global, all-or-nothing basis. The inquiry is supposed to be whether the person is capable enough to make the particular choice confronting him or her at that particular time. If guardianship is deemed necessary, it is supposed to be ordered on as limited a basis as possible, consistent with the decisionspecific incapacities of the ward (Hurme, 1994). Examining capacity in decisionspecific terms ordinarily entails a more careful, individualized scrutiny than would a more generalized determination. Second, for many older individuals the level of decisional capacity is not a constant matter, but rather fluctuates according to such factors as time, location, medications being taken, and transient physical illness; a conscientious evaluation of decisional capacity will take the possibility of fluctuations into account, rather than predicating a judgment solely on a snapshot of the individual taken at a single point in time.

86

Decision-Making Capacity and Older Persons

Another factor making the process of capacity assessment something less than the objective, scientific exercise presumed in legal theory is the prevailing perspective, embodied in modem guardianship statutes, that capacity must be determined on the basis of functional, rather than outcome or diagnostic, criteria. In other words, it is improper to treat—legally or for any other purpose—a person as incapacitated just because the assessor disagrees with the outcome of that person’s decision-making process (“No person could rationally choose to decline the operation in these circumstances”) or the person has received a particular clinical diagnosis. Rather, while the choice being expressed by the individual and that individual’s diagnostic label or category may be useful elements of evidence in determining capacity, the focus must be on the adequacy of an individual’s functional ability to engage in a rational decision-making process regarding a specific decision at a specific moment. Because decisional capacity is decision-specific, it may wax and wane over time. Because it is a functional rather than a diagnostic or outcome-determined matter, its assessment in practice more often than not involves ambiguity. Underlying value judgments are inevitable, and standardized mental status instruments developed for purposes of clinical diagnosis and treatment are of limited utility (Kapp & Mossman, 1996). The unavoidable individualization and subjectivity involved in the assessment process may contribute substantially to the tremendous financial cost, time investment, inefficiency, and emotional turmoil that generally results from the initiation of a legal guardianship proceeding. These “hassle” factors are significant. For example, filing fees for the initiation of a guardianship proceeding ordinarily range from $100 (Cleveland, Ohio) to $194 (Los Angeles, California) or more. Depending on particular jurisdiction, the application may need to include a statement of the applicant’s willingness to perform as guardian, a bond, and a statement pertaining to the ward’s mental and physical condition from a treating physician or psychologist. Sufficient notice must be served of the impending guardianship, a court investigation may be required, and an adversarial hearing must be held to determine whether a guardianship is necessary and the proposed guardian is suitable for that role. Once a guardianship has been established, the guardian must submit to the monitoring court periodic detailed financial accountings and personal status reports concerning the ward. In large part because of these burdens, most individuals in the netherworld of decisional capacity, and even many who are quite unambiguously de facto incapacitated, never have the capacity issue formally raised and the legal process of guardianship (or the process of placement in a formal guardianship alternative/ diversion program [Hartman, 1996]) never gets invoked. The judicial branch of government, which interprets and administers the guardianship statutes enacted by state legislatures, cannot generate its own caseload. It is limited to involvement in controversies that are brought to the courts by parties who could not resolve their problems in a less formal manner. Instead of initiating formal guardianship proceedings whenever there are concerns about someone’s decisional capacity, the

Decisional Capacity in Theory and Practice

87

various parties generally “bumble through” extra-legally as best they can. They do this based on informal, working, clinical judgments about capacity and the cooperation (or complicity, depending on one’s attitude about the propriety of “bumbling through”) of willing and available family members, friends, and health care and social service providers. Besides concerns about the financial, time, and emotional costs entailed in initiating the legal system’s intervention into the capacity issue, there are several other reasons that such initiation is the exceptional rather than the usual circumstance. One thing is the widespread pragmatic belief on the part of families and professionals that obtaining a court’s legal imprimatur on a decision-making arrangement that would have occurred informally anyway would rarely make any real difference in terms of decisions made or protections provided to the incapacitated person. There is also the powerful influence of inertia; since the current process of “bumbling through” works well and without adverse legal or other kinds of consequences in the majority of situations, there is little perceived benefit for anyone to be derived in changing everyday practice in a direction that would be certain to generate financial and other costs. When the formal guardianship process does get invoked, it is usually chiefly for the benefit of a third party, such as a service provider, financial institution, or feuding family member, rather than any primary or incidental benefit of the ward. Legally authoritative delineation of the alleged incapacitated person’s legal status by a court is commonly seen and obtained as a way to protect the legal and financial interests of the third party from potential liability (guardianship qua defensive medicine), with the court employed as an immunity shield.

PROFESSIONAL BEHAVIORS TO BE ENCOURAGED Thus, there is substantial discordance described above between legal theory and practical approaches to decision-making for persons with questionable capacity. In light of this discordance, we must ask what precise messages advocates and policy makers ought to be sending to, and what behaviors we should be seeking to encourage in, health care, social service, and financial professionals and agencies who implement the clinical, daily reality that actually impacts the lives of persons with questionable capacity and those (including but not limited to their families) who care about them. Put differently, what is the psychological environment we ought to be cultivating, through professional education and other strategies, for those who will make the most important threshold choices about whether any particular patient/ client situation will ever be transformed into a legal “case”? More specifically, should we be encouraging or discouraging a general, presumed professional practice of initiating (or encouraging the family to initiate) a formal, legalistic approach to situations involving persons of ambiguous decisional capacity, versus a more pragmatic, extra-legal “bumbling through” approach to

88

Decision-Making Capacity and Older Persons

such situations? Should we be encouraging the risk of more false positives (i.e., guardianship petitions being filed unnecessarily when the person is found to be still capable) or false negatives (i.e., incapacitated, vulnerable persons who really need formal protection but who do not receive it because no one initiates guardianship)? How should we measure “success” in this equation? With regard to professionals and the public, should we be actively promoting the legal process as the best way to protect an individual’s rights, or instead as an often wasteful, superfluous, and negative experience for the participants/victims? How should we deal productively with the risk management apprehensions of third parties that often inspire the filing of otherwise avoidable or premature guardianship petitions? Do we wish to encourage service providers and financial institutions running to, or running away from, attorneys and risk managers to resolve questions about decisional authority for patients/clients? What ought we to be teaching to helping professionals about the ethical interplay of autonomy (self-determination) and beneficence (doing good) in this context? What should we be teaching health and human service professionals about the most appropriate process for assessing decisional capacity? Should we be encouraging or discouraging, whenever there is doubt about the issue, the conduct of more formal, elaborate, extensively documented capacity assessments than is the current norm for most individuals? Do we want to frighten third parties into an adversarial due process model of interacting with individuals of questionable decisional capacity and their families, in which each party’s rights and responsibilities are expressly delineated in advance by judicial order? Conversely, would it be preferable to calm third parties into an informal, therapeutically based model of pragmatically working out rights and responsibilities along the way collaboratively as circumstances require? Should we be encouraging or discouraging health and human service professionals regarding the administration of formal mental status assessment instruments for the purpose of assistance in determining a person’s decisional capacity?

PUBLIC POLICY IMPLICATIONS How we answer the fundamental questions posed in the preceding section ought to guide the further evolution of public policy in the guardianship arena for the foreseeable future. Various kinds of incentives and disincentives can be created or accentuated to, respectively, effectively promote or impede specific forms of behavior by families and providers of health care, social service, and financial services. On the one hand, if the intent is to encourage more use of the formal legal guardianship system, the courts should be quicker to err on the side of disallowing or voiding decisions and transactions by persons of legally questionable capacity. Statutes and common law should be amended or interpreted to expose service providers, financial institutions, and even family members to liability for taking ac-

Decisional Capacity in Theory and Practice

89

tion (e.g., agreeing to and performing surgery) regarding a person of questionable decisional capacity in the absence of definitive legal authority. Perhaps the strongest behavior-inducer in this direction would be convincing the parties that the formal appointment of a guardian would entail real, meaningful continuing judicial oversight that actually protects the vulnerable ward, that is, that makes a difference in both the process and outcome of decision-making for the ward. In other words, a persuasive argument that the likely benefits will exceed the certain costs of initiating guardianship would be a large incentive for embracing the due process model. On the other hand, we could discourage reliance on the formal legal system in favor of extra-legal “bumbling through” in scenarios with questionably capable individuals if we made it more difficult for third parties and questionably capable individuals to bring and succeed in litigation attacking and voiding decisions and transactions involving persons whose decisional capacity was unclear at the time of the decision or transaction. Policy makers could address third parties’ risk management anxieties. Legal worries point those third parties toward formal, adversarial approaches to capacity determination as a source of perceived legal prophylaxis to be achieved by reducing the exposure of service providers, financial institutions, and family members to liability for acting in the absence of absolute, definitive legal authority. Finally, creative informal approaches to handling the decisional incapacity issue certainly would be encouraged by the development and dissemination of more good, less intrusive, alternative to guardianship resources and programs (e.g., money management programs) (Wilber & Reynolds, 1995) that protect the rights and well-being of mentally impaired persons without subjecting them to the negative aspects of legal guardianship.

CONCLUSION The last suggestion, regarding the development and proliferation of more good alternatives to guardianship options for persons who may benefit from some external assistance but would probably be more harmed than helped by the involuntary imposition of a legal guardian, really sums up why the challenges presented in this chapter are so vexing. There simply is no way to achieve—in theory or practice— the purported protections of a formal, legalistic approach to guardianship for alleged incapacitated persons without incurring the financial, time, and emotional expenses intertwined with that approach. At the same time, however, we cannot produce the flexibility and opportunity for innovation and creativity in fashioning solutions to the challenge of impairment in decisional capacity among older persons that is fostered by an unspoken but prevalent practice of “bumbling through” extra-legally without relying greatly, and in some cases tragically erroneously, on trust and goodwill rather than external oversight and enforcement. As advocates for older persons and public policy makers attempt to further refine the details of

90

Decision-Making Capacity and Older Persons

the U.S. guardianship system, the practical operation as well as the theoretical underpinnings of that system must be borne in mind, so that ultimately we will have helped to achieve a balance of formality and pragmatism that truly improves the lives of those who are vulnerable and need protection against harm not only from themselves and designing or inept others, but also from their well-meaning but sometimes overzealous legal protectors.

REFERENCES American Bar Association Commission on the Mentally Disabled. (1989). An agenda for reform—recommendations of the national guardianship symposium and policy of the American Bar Association. Mental Disability Law Reporter, 13, 271–313. Callahan, S. (2000). My mother’s voice. Forest Knolls, CA: Elder Books. Gillick, M. R. (2001). Lifelines: Living longer, growing frail, taking heart. New York: W. W. Norton. Hartman, S. D. (1996). Adult guardianship mediation. Clearinghouse Review, 30, 5 97– 602. Hurme, S. (1994). Limited guardianship: Its implementation is long overdue. Clearinghouse Review, 28, 660–674. Kapp, M. B. (1991). Health care decision-making by the elderly: I get by with a little help from my family. Gerontologist, 31(5), 619–623. Kapp, M. B., & Mossman, D. (1996). Measuring decisional capacity: Cautions on the construction of a “capacimeter”. Psychology, Public Policy, and Law, 2, 73–95. Symposium. (2002). Wingspan: The Second National Guardianship Conference. Stetson Law Review, 31, 573–1055. Wilber, K. H., & Reynolds, S. L. (1995). Rethinking alternatives to guardianship. Gerontologist, 35(2), 248–257.

Part II

INDEPENDENT ARTICLES

This page intentionally left blank

Ethics, Law, and Aging Review, Vol. 10, 2004 © 2004 Springer Publishing Company

Chapter 6

End-of-Life Liability Issues Stuart Selkin

A

bout 3,800 years ago, the Code of Hammurabi decreed that physicians who harm their patients shall have their hands cut off.1 Ever since then, the physician–patient relationship has spawned potential civil, criminal, and administrative liability. This chapter addresses liability issues that physicians may confront when caring for the terminally ill.

PHYSICIANS AND THE LAW To protect the public health, each state has a compelling interest in regulating medical practice. Each state generally does this by enacting statutes.2 To implement those statutes, states look to courts that hear medical malpractice claims and criminal complaints, as well as to agencies that oversee physician licensing and discipline. Most often, physicians learn the law as defendants in malpractice claims. In an adversary system that they view as antithetical to seeking truth, physicians have seen negligence awards and their own liability premiums soar. They have seen colleagues investigated, charged, convicted, and punished under criminal statutes. Physicians have seen the agencies that license them resort to remedies ranging from reprimand to revocation—and put unprecedented numbers of colleagues out of business. Physicians risk civil, criminal, and administrative liability when caring for the terminally ill. But, reasoning deductively in a scientific world, a doctor doesn’t “think like a lawyer.” Few physicians know the elements of negligence or informed

93

94

Independent Articles

consent, and that ignorance leads to inappropriate defensive medicine. Few know the criminal law, and fewer can fathom the administrative law that governs the physician-discipline process.

THE PHYSICIAN-DISCIPLINE PROCESS Court dockets readily confirm the staggering numbers of malpractice claims and still rare, but increasing, numbers of criminal complaints against physicians.3 However, states still report a failure to protect the public from “medical negligence, incompetence, or illegal and unethical practices.”4 So, in the past decade, legislatures have vested administrative agencies with ever-increasing authority to investigate, prosecute, and adjudicate physician misconduct claims. These agencies act under a system that frustrates even skilled attorneys—that body of jurisprudence known as administrative law. Just about anyone can complain to licensing and discipline agencies; and, it seems, just about anyone does. Most complaints come from patients, patients’ relatives, hospitals, other health professionals, insurance companies, court clerks, state or federal agencies, and the Federation of State Medical Boards. In some states, almost every malpractice claim breeds a misconduct complaint. Agencies investigate every complaint. Each state has designated a laundry list of conduct that can lead to professional discipline.5 The terms negligence, gross negligence, incompetence, gross incompetence, unprofessional conduct, and moral unfitness seem unspecific and vague. Yet agencies routinely enforce these unspecific, vague standards—because courts believe that physicians should know what the public interest requires. Administrative agencies may issue a reprimand, which declares conduct improper without limiting the physician’s right to practice. Censure harshly condemns the conduct, but it still does not limit the right to practice. Agencies may impose substantial monetary fines. Usually, agencies impose sanctions only after a formal hearing. If they discover an imminent danger to the public health, though, agencies may summarily suspend a physician’s right to practice. Agencies may restrict a physician’s ability to prescribe controlled substances or perform surgery. They may mandate supervised practice. They may impose probation, which for a prescribed time subjects a physician to monitoring. They may suspend a license, which for a prescribed time prevents a physician from practicing. Agencies also may revoke a license, thus “forever placing the offender beyond the pale.”6 Restoring a revoked license requires a petition and review that can take years to complete—and that frequently fail. Even if a physician escapes a misconduct complaint unscathed, defending a misconduct complaint that results in a hearing can cost the accused physician between $80,000 and $100,000.7 The same agency may fulfill three conflicting roles. In their quasi-legislative role, agencies promulgate rules and regulations that implement physician-discipline

End-of-Life Liability Issues

95

statutes. In their quasi-executive role, agencies investigate and prosecute alleged violations of physician-discipline statutes. Finally, in their quasi-judicial role, agencies hold hearings to determine whether physicians have violated physician-discipline statutes, then impose sanctions. The United States Supreme Court has found that an agency’s acting as prosecutor, judge, and jury does not violate the Constitution.8 Indeed, wrote the High Court, “without a showing to the contrary, state administrators ‘are assumed to be men of conscience and intellectual discipline, capable of judging a particular controversy fairly on the basis of its own circumstances.’”9 In the context of the physician-discipline process, however, the Supreme Court’s words disregard administrative law’s realities. At least one court has described a physician disciplinary agency as “a tribunal predisposed to conviction.”10 Another described the physician-discipline process as “a schizophrenic fact of justice [that] threaten[s] complete objectivity.”11 Indeed, yet another observed that “the board was forced to become creative in order to effectively vent its moral outrage. It did so with all the subtlety of the proverbial eight-hundred-pound gorilla that it has become.”12 But, relying on the Supreme Court’s faith in administrative law and in those who enforce it, the courts almost always uphold adverse physician-discipline determinations.13 In malpractice cases, plaintiffs must establish by a preponderance of the evidence that the physician’s violating a relevant standard of care proximately caused the patients’ harm. In criminal cases, the government must prove its case beyond a reasonable doubt. In both civil and criminal cases, physician-defendants retain a panoply of due process protections. In the physician-discipline process, though, many evidentiary standards and due process protections evaporate. In a very few states, evidence admitted at disciplinary hearings must conform to that state’s detailed evidentiary rules for civil actions.14 In most states, however, the “probative and relevant evidence” admitted at physician-discipline hearings often includes hearsay.15 In a very few states, physician misconduct must be established by “clear and convincing evidence” that is “highly probable or reasonably certain.”16 In most states, physician misconduct must be established by a “preponderance of the evidence” that is “the stronger evidence, however slight the edge may be.”17 Actually, in most states, physician misconduct may be established by “substantial evidence” that is “less than a “preponderance.”18 Indeed, this “substantial evidence” standard—that in most states can strip physicians of their right to practice—requires only “evidence beyond a scintilla.”19 Although physician-discipline statutes require experts to establish that a physician violated a relevant standard, they do not require proof that the patient suffered any harm. Those statutes also view physicians’ rights to discover the nature and extent of testimony against them before the hearing as being severely curtailed or nonexistent. Agencies typically offer an internal appeal of their final determinations. Physicians find scant solace in having an agency preside over an appeal of its own decision. Yet, physicians must exhaust all administrative remedies before seeking judicial review.

96

Independent Articles

Courts exercise only limited judicial review of agency determinations and generally defer to an agency’s presumed expertise in health-related matters.20 In essence, judicial review “distills to whether the [agency’s] findings have a rational basis and are factually supported."21 Courts thus uphold determinations that some evidence in the record supports.22 Again, this standard requires only “evidence beyond a scintilla.”23 Thus, physicians who escape liability in court may face an agency that stacks the odds against them—in a climate that favors yet more physician oversight and accountability. A plaintiff who does not succeed in court may use the same allegations in a physician-discipline complaint and put a physician, who did succeed in court, out of business. Hence, the reality—but more often the fear—of incurring civil, criminal, and administrative liability has molded physicians’ conduct when they care for the terminally ill.24

SOURCES OF END-OF-LIFE LIABILITY Under the common law right to preserve one’s bodily integrity, competent adults, defined as those with decision-making capability, may refuse medical treatment.25 The seminal case of In re Quinlan was the first state court decision to allow physicians to withdraw a respirator from a patient who was in a persistent vegetative state.26 In a ruling that jolted the medical and legal communities, the Quinlan court held that, in end-of-life decisions, patients’ judgments must prevail over physicians’ judgments.27 Since Quinlan was decided in 1976, courts and legislatures have struggled to fix medical management’s legal boundaries in the context of end-of-life care. In fixing those boundaries, courts have uniformly held that no legal distinction exists between withholding or withdrawing life-sustaining medical treatment.28 When physicians have withdrawn life-sustaining treatment, no successful civil suit or criminal prosecution against them has yet been reported.29 Yet when physicians override a patient’s wish to withdraw life-sustaining treatment, they cite their fear of a civil suit or criminal prosecution. Those fears increase when patients lose the capacity to make their own decisions. Quinlan spawned statutes that permit competent adults to direct medical decisions even after they become incompetent to make those decisions. Living wills permit competent adults to formally instruct others when to refrain from using life-support measures to prolong their lives during their own catastrophic illness.30 Advance proxy directives permit competent adults to formally designate others to make health care decisions when their makers become incompetent. Unlike ordinary powers of attorney, advance directives remain in effect during their maker’s incompetency.31 The Federal Patient Self-Determination Act requires hospitals to inform patients of their rights to refuse medical treatment and to create and use advance directives.32

End-of-Life Liability Issues

97

Do-not-resuscitate (DNR) statutes permit physicians and patients to direct that cardiopulmonary resuscitation (CPR) be withheld.33 Surrogate decision-making statutes permit courts to allow particular people to make health care decisions for those who have become incapacitated and have executed neither a living will nor an advance proxy directive.34 Only a few states reject the principle of substituted judgment: New York in all situations,35 Missouri if artificial nutrition is involved,36 Michigan if the patient is neither terminally ill nor permanently unconscious,37 and Maine in name, although not in fact.38 The U.S. Supreme Court has yet to address whether surrogates may refuse treatment on behalf of those who have never been competent to make a decision. Still, court involvement in end-of-life care for incompetent persons has increased. Professor George Annas has observed “an increasing trend to ask the courts whether life-sustaining treatment should be withheld from patients who are unable to make this decision themselves. Judges are asked to decide this question, not because they have any special expertise, but because only they can provide the physicians with civil and criminal immunity for their actions.”39 Other experts opine that Professor Annas overstates courts’ involvement in endof-life care, but concede that “provider perception of a legal system that continually lurks in the shadows is both real and powerful.”40 Indeed, physician Timothy Quill, a party in Vacco v. Quill,41 wrote that end-of-life decisions are “influenced more by considerations of risk management than by those of patient care.”42 A study by physicians familiar with end-of-life issues reports that “[f]ear of legal liability often interferes with the physician’s ability to make the best choice for the patient.”43 Another study reports that physicians caring for the terminally ill often bow to family demands because they fear adverse legal outcomes.44 Despite the paucity of experience to support such consternation, physicians’ concerns about being sued for malpractice in end-of-life situations have worsened.45 A 1995 study confirmed, “Physicians may be apprehensive about being sued by a family member who wants a different level of care provided than specified in the patient’s directive.”46 When patients become incapable of expressing their medical preferences, physician anxiety about family members becoming plaintiffs intensifies.47 The stereotypical situation takes place when the long-absent child arrives from some distant place at the last minute, uninvited and unexpected. The child then disrupts the caring scene with unreasonable demands for previously neglected futile medical assaults.48 Legal suspicion thus clouds the relationship between physicians and families. Indeed, at least one appellate court has found that disregarding a family’s wishes to withdraw life support from a patient in a persistent vegetative state would subject the physician to civil liability.49 Some studies report that only 15% to 20% of people prepare a written directive.50 Others report that only 6% ever do.51 Difficulties with end-of-life decisions thus may reflect physician uncertainty about patient wishes. Physicians who try to fulfill their patients’ wishes may not be sure what those wishes are. Indeed, studies

98

Independent Articles

consistently have shown that, although physicians believe that they know their patients’ treatment preferences, they often do not.52 That confusion may flow from the many terms in end-of-life statutes that are ambiguous. Statutory provisions often apply to the terminally ill, yet they rarely define who is “terminally ill.” An Illinois statute describes “an incurable and irreversible condition [where] death is imminent and the application of death delaying procedures serves only to prolong the dying process.”53 Yet the statute does not define imminent, nor does it give guidance for determining when a life-sustaining treatment is delaying death rather than prolonging life. For physicians, advance directives are limited by their own ambiguity. Although meaningful quality of life, acceptable quality of life, and extraordinary means appear, the terms are never defined.54 One study reported that of 688 advance directive documents, only 5% contained specific treatment instructions, and 87% were ambiguous.55 DNR statutes have not completely resolved physicians’ liability anxieties. CPR’s dismal success rate makes it difficult for plaintiffs to prove that a physician’s failure to administer CPR proximately caused any legally compensable injury.56 Still, many physicians believe that administering even unsuccessful CPR is preferable to facing a malpractice suit’s or misconduct complaint’s potentially damaging outcome. Media attention may fuel physicians’ fears of unwelcome litigation. For example, in 1997, the U.S. Supreme Court decided Washington v. Glucksberg and Vacco v. Quill.57 In Glucksberg and Quill, respectively, the Court held that neither the due process clause nor the equal protection clause confers a constitutional right to assisted suicide.58 These cases did not involve criminal prosecutions, and nothing in their holdings suggests that states will prosecute more physicians. Yet NBC’s Today Show reported that the Supreme Court’s decisions in Washington v. Glucksberg and Vacco v. Quill “could make murder charges against doctors more common.”59 Although the objective risk of criminal prosecution in end-of-life care is extremely small, it looms large for physicians who make treatment decisions for the terminally ill.60 Fear of prosecution, conviction, and punishment may skew treatment of the most vulnerable patients toward overtreatment or undertreatment.61 Indeed, 40% of physicians act contrary to their consciences by overtreating dying patients because they think that to do otherwise would risk liability.62 The very legal and regulatory environments intended to protect patients may therefore inadvertently cause many terminally ill patients to be treated inappropriately,63 especially when they have severe, persistent pain. A comprehensive study of end-of-life care in the United States suggested that pain management for dying patients is inadequate. The study reported that nearly half of the 1.6 million Americans living in nursing homes experience persistent, severe pain that is treated deficiently.64 Another study reported that 80% of those afflicted with end-stage cancers experience persistent, severe pain.65 Terminally ill

End-of-Life Liability Issues

99

patients with acquired immunodeficiency syndrome (AIDS) report similar statistics.66 Although physicians can relieve the pain in 90% of those patients, they rarely do.67 Throughout the United States, 60% to 70% of patients who experience persistent, severe pain are treated deficiently.68 The mainstay for treating persistent, severe pain remains opium-derived controlled substances that include morphine,69 but medical training in treating pain remains wanting,70 and drugs that treat severe pain have become the major focus in the war on drug abuse.71 Recent studies report that patients who experience severe pain can tolerate enormous doses of morphine without experiencing the respiratory depression that can prove fatal,72 but 30 years in the private practice of otolaryngology/ head and neck surgery have convinced this author otherwise. In fact, no standard has emerged for managing persistent, severe pain, and pain management protocols remain plagued by major disagreements. Although most states have enacted pain management statutes, even members of physician-discipline boards lack a clear understanding of legally and medically acceptable pain management.73 Plaintiffs and prosecuting attorneys fare no better. Thus, although undertreating pain has reached epidemic proportions in the United States, physicians blame that deficiency on the confusing regulatory oversight invited by the law.74 Without clear pain management guidelines, agencies often interpret the law in any way they see fit.75 A physician who spent 5 years and $140,000 fighting the California Medical Board’s charges of overprescribing summarized physicians’ fears: “A doctor, if he really wants to cover himself, is going to underprescribe. There’s no law against underprescribing other than the law of compassion. . . . Doctors hear about these [investigations] happening, and compassion goes out the window."76 Courts, however, do not always agree with this assessment. In Estate of Henry James v. Hillhaven Corp., a nurse refused to follow a physician’s morphine prescription for a terminally ill man. Although eventually settled for an undisclosed amount, a jury awarded pain and suffering and punitive damages of $15 million.77 Gaddis v. United States involved the failure to diagnosis a laryngeal cancer that caused severe pain.78 In addition to wrongful death damages, the court awarded pain and suffering damages of $125,000.79 Bergman v. Chin involved a terminally ill patient with lung cancer whose pain was inadequately managed.80 Although a damage cap statute mandated reduction to $250,000, the jury awarded pain and suffering damages of $1.5 million.81 In criminal cases, physicians who act as no more than “drug pushers” are appropriately tried, convicted, and punished.82 However, a Utah physician who prescribed morphine to five of his terminally ill patients was found guilty of manslaughter and negligent homicide.83 Prosecutorial misconduct, in failing to provide exculpatory expert opinion that the prosecutor had heard, caused the conviction to be overturned, but the physician faces a new trial. In such criminal cases, physician liability depends on the “double-effect doctrine.” Under the double-effect doctrine, controlled substances may be used to relieve pain and anxiety in the terminally ill, even if doing so foreseeably hastens the patient’s death.84 In some cases, relieving

100

Independent Articles

extreme pain, agitation, delirium, or breathing difficulty requires physicians to sedate the dying patient into unconsciousness. In the subset of double effect called “terminal sedation,” the patient, sedated into coma, often dies within days.85 Although the double-effect doctrine has long been controversial in moral philosophy, in medical ethics, and in law,86 it has been incorporated into the American Medical Association (AMA) Code of Ethics.87 The AMA’s purporting to speak for an entire profession, however, should raise concerns. First, the steadily declining AMA membership roster claims only a third of America’s physicians.88 Second, the AMA’s president appoints the entire Council on Ethical and Judicial Affairs, which authors the AMA’s Code of Ethics.89 Thus, not one author of the AMA’s Code of Ethics has ever been elected. Third, in asserting ethical positions, the unelected council often ignores ethical positions that America’s physicians support.90 That fact should not surprise anyone, because when it issues ethical guidelines, the unelected Council never even polls physicians.91 Still, the U.S. Attorney General, Congress, and the Supreme Court accord AMA ethical positions pivotal deference, embracing as legitimate practice the doctrine of double-effect.92 Under the double-effect doctrine, the morality or legality of physicians’ conduct turns on intent. Did the physician prescribe with intent to hasten death? Or did that physician prescribe with intent to relieve pain, agitation, delirium, or breathing difficulty—with death foreseeably following?93 Deciding intent mires physicians in ethical and legal quandaries. From an idealized ethical perspective, intentions are clear and distinct, but in real end-of-life situations, physicians’ intentions become complex, ambiguous, and contradictory.94 In treating the terminally ill, physicians rarely act with only one intent. Instead, they act with several intents, which may include a real possibility of hastening their patients’ deaths.95 When physicians may incur civil, criminal, or administrative penalties based on their intent, ethical and legal quandaries turn on just who may rightfully determine that intent. Under basic principles of jurisprudence, intent may be inferred from conduct. Under the double-effect doctrine, though, what physicians say becomes more important than what they actually do. To avoid civil, criminal, or administrative penalties for their prescribing practices, physicians must assert their own intent, and in asserting that intent they must never admit that they have honored a patient’s or family’s request for a patient’s death. Instead, physicians must assert that they have prescribed only to relieve pain and suffering—which, in the just-described realities of end-of-life care, mires physicians in doctrinal hypocrisy. By embracing the double-effect doctrine, the AMA, U.S. Attorney General, Congress, and the Supreme Court have ensured that the hypocrisy will endure. They also have ensured that when physicians prescribe for the terminally ill, their intent may be determined by those who can make no credible claim to medical expertise. That flows from the AMA’s acquiescence to determination of physicians’ prescribing intent by federal law enforcement agents, because of its unyielding opposition to physician-assisted suicide.

End-of-Life Liability Issues

101

THE AMA’S CODE OF ETHICS COULD CAUSE CRIMINAL LIABILITY FOR PRESCRIBING PRACTICES Under its 1994 Death with Dignity Act, only Oregon prescribes detailed, closelymonitored conditions under which physicians legally may hasten the death of a terminally ill person.96 But condemning assisted suicide as “fundamentally incompatible with the physician’s role as healer,” the AMA has championed almost every attempt to subvert that duly enacted Oregon law.97 In 1997, the Ninth Circuit vacated a 3-year long injunction that stayed the act’s implementation.98 Congressional conservatives reacted immediately to seek to subvert Oregon’s act by trying to rewrite the Controlled Substances Act, which addresses drug abuse in the United States.99 Under two separate defeated bills, an amended Controlled Substances Act would have, in essence, transmuted the double-effect doctrine into federal law. The amended Act would have proclaimed using controlled substances to relieve pain— even if death follows—legitimate medical practice,100 but using controlled substances to assist suicide illegitimate medical practice and therefore in violation of the act.101 Using controlled substances to assist suicide, even under Oregon law, therefore would have subjected physicians’ federal controlled substances registration to revocation and would have subjected physicians to criminal prosecution and a 20–year mandatory prison term.102 At first, the AMA feared involvement by Drug Enforcement Administration (DEA) agents as “unacceptable federal intrusion over matters of state law regarding the practice of medicine,”103 but in supporting an almost identical proposal, it apparently rethought its concerns.104 To vindicate the double-effect doctrine, the AMA exalted the proposed Pain Relief Promotion Act for “reducing physicians’ exposure to criminal investigation and prosecution for legitimate medical practices.”105 Before it stalled in the Senate, the Pain Relief Promotion Act passed in the House of Representatives by a 271–156 majority.106 Many attribute that vote in the House to the AMA’s support. The AMA’s reasoning raises both medical and constitutional concerns.107 First, the proposed bills would have imposed a national solution on issues that historically have been handled by the states. Second, DEA agents would have intruded into the physician–patient relationship.108 Third, the U.S. Attorney General would be acting as though Oregon’s Death with Dignity Act, a duly enacted state law, did not exist.109 Fourth, even when physicians strongly disagree and no prescribing standard has emerged, DEA agents instead of physicians would have determined appropriate prescribing practices.110 Fifth, when physicians prescribed controlled substances, DEA agents would have interpreted their intent.111 Under AMA reasoning, those most empowered by federal law to determine appropriate prescribing practices and physician intent would have been those least qualified to do so. The AMA reasoning did not die with the demise of the proposed Pain Relief Promotion Act. Instead, it was resurrected by Attorney General John Ashcroft. In

102

Independent Articles

November 2001, in what has become known as the “Ashcroft directive,” the Attorney General decided to define “legitimate medical purpose.” With no credible claim to medical expertise, Mr. Ashcroft wrote that using controlled substances to aggressively manage pain is a “legitimate medical purpose.”112 Under the Ashcroft directive, however, using controlled substances to assist suicide is “inconsistent with the public interest” and is not a “legitimate medical purpose.”113 Repeatedly citing the double-effect doctrine and its incorporation into the AMA’s Code of Ethics, the Ashcroft directive effectively annulled the Death with Dignity Act and Oregon’s 4–year experience in applying it. Under the “Ashcroft directive,” physicians who comply with that duly enacted Oregon law risk having their prescribing privileges suspended or revoked and a criminal prosecution with a 20-year prison sentence.114 Federal District Court Judge Robert E. Jones at first restrained the Ashcroft directive temporarily. In an April 17, 2002, decision, Judge Jones restrained the Ashcroft directive permanently.115 In a decision sharply criticizing Attorney General Ashcroft, Judge Jones wrote that, in deciding that prescribing controlled substances to assist suicide had no “legitimate medical purpose,” the Attorney General had overstepped his authority. Indeed, wrote Judge Jones, “the Ashcroft directive is not entitled to deference under any standard and is invalid.”116 Judge Jones admonished, “To allow an attorney general—an appointed executive whose tenure depends entirely on whatever administration occupies the White House—to determine the legitimacy of a particular medical practice without a specific congressional grant of such authority would be unprecedented and extraordinary.”117 Undaunted and still asserting the AMA’s Code of Ethics, the Attorney General took his case to the Ninth Circuit Court of Appeals,118 which affirmed the District Court’s decision.

CONCLUSION End-of-life medical care is driven by physicians’ risk of civil, criminal, and administrative liability and by their fear of that liability. Until coherent, agreed-upon standards for end-of-life care emerge, those fears will endure. Physicians who escape civil, criminal, or administrative actions with their reputations and freedom intact still incur substantial expenses for defending against those actions. Although professional liability policies pay the awards in malpractice cases, defending those cases causes those policy premiums to escalate.119 Only rarely do professional liability policies provide a defense against administrative actions, and they never provide a defense against criminal actions. Even when innocent, accused physicians face time away from their practice, patients, and income. Even when innocent, physicians face loss of professional and personal esteem, and sometimes media exposure. Legal scholar Barry R. Furrow asserts that failure to properly manage pain is professional negligence.120 He suggests other liability theories, which include fail-

End-of-Life Liability Issues

103

ure to refer patients to pain management specialists, negligent or intentional infliction of emotional distress, and failure to obtain informed consent. The Emergency Medical Treatment and Labor Act (EMTALA) was enacted to combat patient dumping, the refusal to treat patients who have no medical insurance.121 Professor Furrow asserts that EMTALA may impose institutional liability on hospitals, as will corporate negligence theory. Finally, Professor Furrow suggests suing nursing homes under the Omnibus Budget Reconciliation Act and suing insurance companies under general agency theory. Although laden with legal hurdles that remain untested, Professor Furrow’s reasoning creates a “pincer’s movement of liability” for physicians who care for the terminally ill. Afraid now of the civil, criminal, and administrative sanctions that they risk for overmedicating, physicians will become just as afraid of the sanctions that they will risk for undermedicating. As it has for centuries, the law that governs end-of-life liability issues will continue to evolve. But one tenet will remain unchanged: Those who care for the terminally ill will, for time immemorial, risk civil, criminal, and administrative liability for their conduct.

NOTES 1. Code of Hammurabi (c. 1780 B.C.). Translated by L.W. King, Commentary by Claude Hermann Walter Johns, Encyclopedia Britannica, (11th ed.) 1911. 2. U.S. Const., amend. X; Dent v. State of West Virginia, 129 U.S. 114 (1889); Linder v. United States, 268 U.S. 5 (1925). 3. Ann Alpers, Criminal Act or Palliative Care? Prosecutions Involving the Care of the Dying, 26 J. L. Med. and Ethics 308 (1998). 4. Physician Discipline: Can State Boards Protect the Public?, Hearing Before the Subcommittee on Regulation, Business Opportunities, and Energy of the House Committee on Small Business, 101st Cong., 2d Sess. (1990) at 2. See also U.S. Department of Health and Human Services, Medical Licensure and Discipline: An Overview (1986). 5. William J. Curran, Mark A. Hall, Mary Anne Bobinski, and David Orentlicher, Health Care Law and Ethics 946 (5th Edition 1998). 6. S. Sandy Sanbar (ed.), Legal Medicine 75 (5th ed. 2001), ch. 7 (citing R. C. Derbyshire, Offenders and Offenses, 19 Hosp. Prac. 981 (1984)). 7. Personal communication with Anthony Z. Scher, Esq., private legal practitioner, Scarsdale, New York, December 27, 2001. 8. Winthrow v. Larkin, 421 U.S. 35, 95 S.Ct. 1456 (1975). 9. 421 U.S. at 55, 95 S. Ct. at 1468. 10. Application of Epstein, 267 A.D. 27, 28, 44 N.Y.S.2d 921, 922 (3rd Dept. 1943). 11. Lyness v. State Board of Medicine, 529 Pa. 535, 546, 605 A.2d 1204, 1210 (Pa. 1992). 12. Pons v. Ohio State Med. Bd., 66 Ohio St. 3d 619, 624, 614 N.E.2d 748, 753 (1993) (Pfeifer, J., dissenting). 13. Sanbar, supra note 6, at 76.

104

Independent Articles

14. See, e.g., N.C. Gen. Stat. §90–14.6 (2002). 15. See, e.g., NY Education Law § 6510[3][c]; Doe v. Office of Prof’l Med. Conduct, 81 N.Y.2d 1050 (N.Y. 1993); Coderre v. De Buono, 247 A.D.2d 793 (N.Y. A.D.3rd Dept. 1998). 16. William J. Curran et al., supra note 5, at 950. 17. Black’s Law Dictionary 1200 (7th ed. 1999). 18. Matter of 300 Gramatan Ave. Assocs. v. New York State Div. of Human Rights, 45 N.Y.2d 176, 180, 379 N.E.2d 1183, 1186, 408 N.Y.S.2d 54, 56 (N.Y. 1978) (italics added). 19. Black’s Law Dictionary 581 (7th ed. 1999). 20. William J. Curran et al., supra note 5, at 952. 21. Steckmeyer v. State Bd. for Prof’l Med. Conduct, 295 A.D.2d 815 (N.Y.A.D. 3rd Dept. 2002). 22. William J. Curran et al., supra note 5, at 952. 23. Black’s Law Dictionary 581 (7th ed. 1999). 24. T.E. Quill and R.V Brody, “You Promised Me I Wouldn’t Die Like This!,” 155 Archives of Internal Med. 1250 (1995). 25. Cruzan v. Director, Mo. Dept. of Health, 497 U.S. 261 (1990). 26. In re Quinlan, 70 N.J. 10, 355 A.2d 647 (1976). 27. Oregon v. Ashcroft, No. 02–35587, Brief of Amici Curiae Margaret P. Battin et al. (Bioethicists) in Support of Plaintiffs-Appellees for Affirmance (9 Cir. November 12, 2002) (citing Quinlan, 70 N.J. at 41). 28. 497 U.S. at 333. 29. David Orentlicher, “Trends in Health Care Decision-making: The Limits of Legislation,” 53 Md. L. Rev. 1255 (1994). 30. Bryan Garner, A Dictionary of Modern Legal Usage 535 (2nd ed. 1995). 31. Id. 32. 42 U.S.C. §1395cc (a)(1). 33. Alan Meisel, The Right to Die, §§ 9.7–9.30 (2nd ed. 1995 and Supp. 1997). 34. Id., § 1.7, ch. 14 (2nd ed. 1995 and Supp. 1997). 35. In re Westchester County Medical Ctr. ex rel O’Connor, 72 N.Y.2d 517 (N.Y. 1988). 36. Cruzan, 497 U.S. 261. 37. Martin v. Martin, 538 N.W.2d 399 (Mich. 1995). 38. In re Swan, 569 A.2d 1202 (Me. 1990); Meisel, supra note 33, § 7.5, at 364–66. 39. George J. Annas, The Incompetent’s Right to Die: The Case of Joseph Saikewicz, 8 Hastings Ctr. Rep. 21 (1978). 40. Alan Meisel, The “Right to Die”: A Case Study in American Lawmaking, 3 Eur. J. Health L. 49, 68–69 (1996). 41. Vacco v. Quill, 521 U.S. 793 (1997). 42. Timothy E. Quill, “New York’s Health Care Proxy Law,” 326 New Eng. J. Med. 495 (1992). 43. Sidney H. Wanzer, S. J. Adelstein, R. E. Cranford, D. D. Federman, E. D. Hook, C. G. Moertel, P. Safar, A. Stone, H. B. Taussig, and J. van Eys, “The Physician’s Responsibility Toward Hopelessly Ill Patients,” 310 New Eng. J. Med. 955 (1984). 44. David T. Watts, “The Family’s Will or the Living Will: Patient Self-Determination in Doubt,” 40 J. Am. Geriatrics Soc’y 533 (1992). 45. Renee M. Goetzler and Mark A. Moskowotz, “Changes in Physician Attitudes Toward Limiting Care of Critically Ill Patients,” 151 Archives Internal Med. 1537 (1991).

End-of-Life Liability Issues

105

46. U.S. Gen. Accounting Office, Patient Self-Determination Act: Providers Offer Information on Advance Directives but Effectiveness Uncertain 16 (1995). 47. Lawrence J. Schneiderman, “Who Decides Who Decides? When Disagreement Occurs Between the Physician and the Patient’s Appointed Proxy About the Patient’s Decision-Making Capacity,” 155 Archives Internal Med. 793 (1995). 48. David W. Molloy, R. M., Clarnette, E. A. Braun, M. R., Eisemann, and B. Sneiderman, “Decision Making in the Incompetent Elderly: The Daughter from California Syndrome,” 39 J. Am. Geriatrics Soc’y 396 (1991). 49. See, e.g., Estate of Leach v. Shapiro, 469 N.E.2d 1047 (Ohio Ct. App. 1984). 50. Jeremy Sugarman, M. Weinberger, and G. Samsa, “Factors Associated with Veterans’ Decisions About Living Wills,” 152 Archives Internal Med. 343 (1992). 51. Susan M. Rubin, W.M. Strull, M.F. Fialkow, SJ Weiss, and B. Lo, “Increasing the Completion of the Durable Power of Attorney for Health Care: A Randomized, Controlled Trial,” 271 JAMA 209 (1994). 52. Richard F. Uhlmann, R. A. Pearlman, and K. C. Cain, “Physicians’ and Spouses’ Predictions of Elderly Patients’ Resuscitation Preferences,” 43 J. Gerontology 115 (1988). 53. Ill. Ann. Stat. ch. 755, para. 53/3(a) (Smith-Hurd 1992). 54. Evans v. Bellevue Hosp. (N.Y. L.J. July 28, 1987), at p.11, col 1 (N.Y. Sup. Ct. 1987). 55. Joan Teno, Joanne Lynn, R. S. Phillips, Donald Murphy, Stuart J. Youngner, P. Bellamy, A. F. Connors, Jr., N.A. Desbiens, W. Fulkerson, and William A. Kraus, Do Formal Advance Directives Affect Resuscitation Decisions and Use of Resources for Seriously Ill Patients?, 5 J. Clinical Ethics 28 (1994). 56. Frank M. McClellan, Medical Malpractice: Law, Tactics, and Ethics 29–44 (1994). 57. Washington v. Glucksberg, 521 U.S. 702 (1997); Vacco v. Quill, 521 U.S. 793 (1997). 58. Id. 59. Kerry Sanders, NBC Today Show (NBC News broadcast June 27, 1997). 60. Evan C. Allen, “Doctors and the Criminal Law,” 334 N. Eng. J. Med. 196 (1996). 61. Id. 62. Matthew K. Wynia, “Do Everything,” 121 Annals Internal Med. 900 (1994). 63. Office of Technology Assessment, U.S. Congress, Report on Intensive Care Units (1984). 64. Roberto Bernabei, G. Gambassi, K. Lapane, F. Landi, C. Gatsonis, R. Dunlop, L. Lipsitz, K. Steel, and V. Mor, “Management of Pain in Elderly Patients with Cancer,” 279 J.A.M.A 1877 (1998). 65. Michael Edwards, “Barriers to Effective Pain/Symptom Control,” 15 Am. J. Hospice and Palliative Care 107 (1998). 66. William Breitbart, M. Kaim, and B. Rosenfeld, “Clinicians’ Perceptions of Barriers to Pain Management in AIDS,” 18 J. Pain and Symptom Mgmt. 203, 203 (1999). 67. Id. 68. Francis X. Mahaney, Jr., “Proper Relief of Cancer Pain Is Worldwide Concern,” 87 J. Nat’l Cancer Inst. 481 (1995). 69. D.E. Joranson, KM Ryan, AM Gilson, and JL Dahl, “Trends in Medical Use and Abuse of Opioid Analgesics,” 283 JAMA, 1710 (2000). 70. J. Andrew Billings and Susan Block, “Palliative Care in Undergraduate Medical Education: Status Report and Future Directions,” 278 JAMA 733 (1997); K. M. Foley,

106

Independent Articles

“Competent Care for the Dying Instead of Physician-assisted Suicide,” 336 New Eng. J. Med. 54 (1992). 71. Comprehensive Drug Abuse Prevention and Control Act of 1970, Pub. L. No. 91– 513, 84 Stat. 1236 (1970); H.R. Rep. No 91–1444, 91st Cong., 2nd Sess. (1970). 72. Henry McQuay, “Opioids in Pain Management,” 353 Lancet 2229 (1999). 73. Chris Stern Hyman, “Pain Management and Disciplinary Action: How Medical Boards Can Remove Barriers to Effective Treatment,” 24 J. L. Med. and Ethics 338 (1996). 74. Ann Jackson of the Oregon Hospice Association, Hearing on H.R. 2260, the Pain Relief Promotion Act of 1999, before the Subcomm. on the Const. of the House Comm. on the Judiciary, 106th Cong., 1st Sess. (June 24, 1999). 75. See, e.g., Sandra H. Johnson, “Disciplinary Actions and Pain Relief: Analysis of the Pain Relief Act,” 24 J. L. Med. and Ethics 319 (1996). 76. Hugh McIntosh, “Regulatory Barriers Take Some Blame for Pain Undertreatment,” 83 J. Nat’l Cancer Inst. 1202 (1991). 77. Estate of Henry James v. Hillhaven Corp., Super. Ct. Div. 89CVS64 (Hertford Cty, N.C. 1990). 78. Gaddis v. U.S., 7 F. Supp. 2d 709, 711–14 (D. S.C. 1997). 79. Id. 80. Bergman v. Chin, No. H205732–1 (Cal. Super. Ct. 2001). 81. Pain and the Law, Undermedicating Cases, available at http://www.painandthelaw.org/ malpractice/undermedicatingcases.php. 82. See, e.g., U.S. v Moore, 423 U.S. 122 (1975); U.S. v. Rosenberg, 515 F.2d 190 (9th Cir. 1975). 83. 60 Minutes: A Sad Fact of Life, transcript Vol. 34, no. 25 (CBS television broadcast, March 3, 2001). 84. Lawrence O. Gostin, “Deciding Life and Death in the Courtroom,” 278 JAMA 1523 (1997). 85. Timothy E. Quill and Ira R. Byock, “Responding to Intractable Terminal Suffering: The Role of Terminal Sedation and Voluntary Refusal of Food and Fluids,” 132 Annals Internal Med. 408 (2000). 86. Alpers, supra note 3. 87. AMA Code of Medical Ethics § 2.20, at 56 (2000–2001). 88. Historical membership chart, American Medical Association (available from American Medical Association, 515 North State Street, Chicago, IL, telephone (312) 464–4969). 89. David Orentlicher, “The Influence of a Professional Organization on Physician Behavior,” 57 Alb. L. Rev. 583, 588 (1994). 90. Melinda A. Lee et al., “Legalizing Assisted Suicide–Views of Physicians in Oregon,” 334 New Eng. J. Med. 310, 311 (1996); David Orentlicher, “The Legalization of Physician Assisted Suicide,” 335 New England J. Med. 663 (1996). 91. AMA Code of Medical Ethics—Current Opinions with Annotations, at iii (2000– 2001) (first stated in 1992 Code, at 87). See also Historical Membership Chart (AMA), supra note 88. 92. Quill, 521 U.S. at 802; Glucksberg, 521 U.S. at 751; Oregon v. Ashcroft, 192 F. Supp.2d 1077 (D. Or. 2002); Pain Relief Promotion Act, H.R. 4006, 105th Cong. (1998); S. 2151, 105th Cong. (1998); H.R. 4006, 105th Cong. § 2(c)(2); H.R. 2260, 106th Cong. § 101(i)(1) and S.1272 (1999). 93. Timothy E. Quill, R. Dresser, and D. W. Brock, “The Rule of Double Effect—A Critique of its Role in End-of-Life Decision Making,” 337 New Eng. J. Med 1768 (1997).

End-of-Life Liability Issues

107

94. Timothy E. Quill, “The Ambiguity of Clinical Intentions,” New Eng. J. Med. 1039 (1993). 95. Id. 96. Ore. Rev. Stat. §§127.800—127.897 (2001). 97. AMA Code of Medical Ethics § 2.211; AMA position on the Pain Relief Promotion Act, at http://www.ama-assn.org/ama/basic/article/0,1059,199–483–1,00.html. 98. Lee v. Oregon, 107 F.3d 1382 (9th Cir. 1997), cert. denied, 522 U.S. 927 (1997). 99. Comprehensive Drug Abuse Prevention and Control Act of 1970, Pub. L. No. 91– 513, 84 Stat. 1236 (1970); H.R. Rep. No 91–1444, 91st Cong., 2d Sess. (1970). 100. H.R. 4006, 105th Cong. (1998); S. 2151, 105th Cong. (1998); H.R. 4006, 105th Cong. § 2(c)(2); H.R. 2260, 106th Cong. § 101(i)(1) and S-1272 (1999). 101. Id. 102. H.R. Rep. No. 106–378, pt. 2, at 10 (1999); 145 Cong. Rec. H10872 (daily ed. October 27, 1999). See also 21 U.S.C. § 841(b)(i)(C) (1994). 103. Hearings on H.R. 4006 before the Subcommittee on the Constitution, House Committee on the Judiciary, 105th Cong. (July 14, 1998). 104. Pain Management and End of Life Care, Hearings on S. 1272 before the Senate Comm. on Health, Education, Labor and Pensions, 106th Cong. (October 13, 1999). 105. AMA position on the Pain Relief Promotion Act, available at http://www.amaassn.org/ama/basic/article/0,1059,199–483–1,00.html. 106. Robert Pear, “House Backs Ban on Using Medicine to Aid in Suicide,” New York Times, October 28, 1999, at A1. 107. H.R. Rep. No. 106–378, pt. 1, at 31–39 (1999) 108. 145 Cong. Rec. H10870 (October 27, 1999); Oregon v. Ashcroft, 192 F. Supp.2d 1077, “Oregon’s Supplemental Memorandum in Support of Motion for a Preliminary Injunction.” (November 16, 2001) available at http://www.deathwithdignity.org/litigation/ ashcroft_documents.htm. 109. Id. 110. 64 Fed. Reg. 25,073, 25079 (1999). 111. William E. May, “Double Effect,” in 1 Encyclopedia of Bioethics 316–19 (Warren T. Reich ed., rev. ed. 1995). 112. 66 Fed. Reg. 56,607, 56,608 (November 9, 2001); 21 CFR § 1306.04 (2001). 113. Id. 114. Id. 115. Oregon v. Ashcroft, 192 F. Supp.2d 1077 (D. Or. Apr. 17, 2002). 116. Id. 117. Id. 118. Oregon v. Ashcroft, No. 02–35587, Brief for Appellants, filed September 20, 2002 (C.A. 9th Cir.) 119. William. B. Schwartz and Daniel N. Mendelson, “Physicians Who Have Lost Their Malpractice Insurance,” 262 JAMA 1342 (1989). 120. Barry R. Furrow, “Pain Management and Provider Liability: No More Excuses,” 29 J. L. Med. and Ethics 28 (2001). 121. 42 U.S.C.A. §1395dd (1995).

This page intentionally left blank

Ethics, Law, and Aging Review, Vol. 10, 2004 © 2004 Springer Publishing Company

Chapter 7

The Work Versus Eldercare Dilemma And The Law: An Israeli Example Israel Doron and Galia Linchitz

T

he current experience in Israel and many other societies is one where family members constitute the social backbone of care for the older and disabled populations (Morgan & Lawton, 1996; Rosin, 1979). Within this social context, many employees, in addition to their normal work hours, devote themselves to caring for their loved ones, who are often older, sick, or physically disabled persons. This phenomenon demonstrates the basic human commitment to love and care for those close to us, despite the hardship it may involve. In Israel, as in many other societies and religions, it also mirrors moral, cultural, and religious duties. Changes in the modern era, however, have created new difficulties, which family members must cope with if they wish to fulfill their moral and social duties of looking after and caring for their older relatives. Medical and technological developments have increased the life span, yet the number of male and mostly female relatives available to care for the elderly is in constant decline. This is due to many factors, including lower birth rates, lifestyle changes, and the increasing number of women joining the workforce, as well as shifts in the traditional family unit. These shifts include a dramatic increase in divorce rates paralleled by a dramatic reduction

109

110

Independent Articles

in multigenerational living arrangements. Thus, the burden of care causes many family members to end up paying a high monetary, emotional, and social price for fulfilling their duties (Kane & Penrod, 1995). Many countries recognize the important role played by family members who provide informal care for their older relatives. In many cases, this informal care enables older persons to remain within the community longer and thus reduces the state’s financial burden. There also is a growing awareness of the burden of informal care on working caretakers. This growing recognition and awareness are addressed in many ways, including the creation of new legal frameworks that provide support and assistance for informal caregivers. This is a genuine attempt to lessen the burden of care and decrease the conflict between family commitments and duties to the workplace. The purpose of this chapter is to describe and assess Israeli legislation that attempts to alleviate the conflict experienced by employees who, in addition to their regular employment, act as informal caregivers to their older relatives.

OLD AGE AND LONG-TERM CARE The Aging of Israeli Society Like the rest of the world, Israeli society is aging (Kinsella & Velkoff, 2001). Israel began its course as a relatively young country, where, in 1955, approximately 85,000 people, or less than 5% of the population, were over the age of 65 . But by the year 2000, this figure had grown to more than 600,000, or 10% of the population (Brodsky, Shnoor, & Be’er 2001; Factor, Be’er, & Primak, 1992). Another aspect of the aging of Israeli society relates to the rate of increase in the “old old” population, or those over 75 years of age. Between 1970 and 1990, the over age 65 population doubled in size, and the over age 75 population tripled, with the group over 80 having the fastest growth rate during the same period. These trends are indicative of the increase in life expectancy in Israel. While in 1965 life expectancy for men was 70.5 and for women 73.2, by 1999, it had increased by almost 10% to 76.6 and 80.4, respectively (Brodsky et al., 2001). Another perspective through which to consider the significance of an Israeli aging society relates to the concept of elder support ratio, that is, the number of people over 65 per 100 work-aged people (ages 20–64). In the 1960s, the figure for this ratio was about 10, whereas in 1994 it almost doubled, reaching a ratio of 19 older individuals per 100 work-aged individuals (Brodsky & Morginstin, 1999). A look toward the future reveals that this trend is expected to continue in Israeli society, suggesting that, by 2025, 14% of the total population of Israel will be elderly, while life expectancy will continue to rise, and the birth rate will continue to drop (Brodsky, et al., 2001).

Work vs. Eldercare Dilemma & the Law

111

The Need for Long-Term Care of Older Persons The term long-term care refers to a wide range of activities aimed at supporting older and disabled persons who are unable to function independently in their daily lives. Israeli as well as international data indicate that a significant proportion of the older population, particularly those of advanced age, require long-term care due to illness or disability (Tennstedt, 2001). In Israel, data indicate that at the end of 1999, the number of disabled elderly was estimated at approximately 88,400. These numbers were representative of 14.5% of the elderly population in Israel, with 69,000 living in their communities and 19,400 living in institutions (Brodsky et al., 2001). In general, Israeli studies indicated that the disabled elderly population is older than the independent older population, as it consists of more widows and widowers and elderly individuals who do not live alone (Brodsky, Naon, & King, 1993; Factor & Primak, 1990). Future predictions indicate that the number and proportion of elderly persons whose disability affects their daily living is likely to increase, so that by the end of 2005, indications are that they will constitute 16% of the elderly population in Israel (Be’er, 1996).

Characteristics of Informal Long-Term Care for Older Persons Research conducted in several Western societies reveals that, despite the presentation of many negative hypotheses regarding the adverse effects of modernization on family life and intergenerational relations and a negative prognosis about the adverse effects of long-term formal care systems on informal arrangements, informal care and support continue to be the main form of care for the older population. The scope of informal care is so extensive that studies in Israel and abroad indicate that family members provide between 80% and 90% of personal and instrumental care to their older disabled relatives (Brodsky, 1991; Chappell, 1992; Habib & Windmiller, 1993; Pandya & Colman, 2000). The volatility of long-term informal care for the elderly relates also to the identity of the caregiver. The literature in Israel identifies long-term informal caregivers as spouses, adult children (mostly daughters), blood relatives of varying degrees, and even friends, acquaintances, or neighbors (Brodsky & Morginstin, 1999). Caregivers’ ages can vary, although 35 to 49 year olds appear to carry the brunt of the burden (Pandya & Coleman, 2000). Men as well as women act as caregivers, although most often the primary caregivers are women and the “duty of care” rests mainly on their shoulders (Brody, 1995). Finally, there usually is a primary caregiver, who occasionally is accompanied by other informal caregivers who help carry the load.

WORK AND ELDERCARE Informal long-term care for older people does not take place in a social vacuum. Relatives, friends, and others who provide the informal care are entrenched in a

112

Independent Articles

social reality that is greatly influenced by their personal obligations. As a result, there often is great conflict between the social role of an older person’s caregiver and one’s obligations to an employer. One’s personal career development is influenced by the degree to which the individual can be active in the workforce. Several aspects of this conflict are detailed in the next section.

Working and Caring for Older Persons Studies observing the relationship between caring for older persons and working indicate that most informal caregivers are employed in either full- or part-time positions (Pandya & Coleman, 2000). Studies conducted in the United States looked at the problem from a different angle and found that between 23% and 32% of the workforce was involved in providing informal care for elderly relatives (Neal, Chapman, IngersollDayton, & Emlen 1993). Israeli studies showed a similar trend. A study published in 1998 found that more than one third of older persons’ primary caregivers were also gainfully employed in the workforce. When caregivers below age 49 were taken into account, this rate rose to 63% (Bentur, King, Brodsky, Mualem, & Gindin, 1998). These data indicate that a large proportion of older persons’ informal caregivers are forced to bear this responsibility along with another: their responsibility to the workplace.

The Burden of Eldercare Informal long-term care for older friends and relatives is a source of both physical and psychological stress, which often causes caregivers to pay a significant personal price (Braithwaite, 1992). Informal caregivers often suffer from an array of personal feelings and psychological phenomena, including depression, stress, exhaustion, fatigue, and anger. These feelings occasionally have detrimental affects on caregivers’ health (Cantor, 1983; Haley, Levine, Brown, Berry, & Hughes, 1987; Sheehan & Nuttall, 1988). Side effects vary according to the population group of the caregiver and characteristics of the elderly group (Merril, 1997). Studies conducted in Israel on this issue indicate that, on average, more than two thirds of primary caregivers have complained that the burden is beyond bearable. Most caregivers report that they are constantly worrying about their older relative’s condition, and the majority have reported feelings of anxiety because of the burden of informal care (Brodsky et al., 1993; Bentur et al., 1998). As a result of their desire to not only care for and protect relatives, but to keep working as well, many informal caregivers have much less time for themselves. Socializing, entertaining friends, vacationing, maintaining a hobby, and devoting time to selfdevelopment are luxuries that they can no longer afford.

The Work Versus Eldercare Conflict Informal caregivers pay a heavy price in both personal and employment realms. The work versus eldercare conflict can be time-based, strain-based, or even behav-

Work vs. Eldercare Dilemma & the Law

113

ior- based (Greenhaus & Beutell, 1985). The time needed for eldercare, strain experienced in providing it, and nature of the caring role both affect and conflict with the caregiver’s duties in the workplace. This conflict often is the basis of many losses suffered by the caregiver, including the depletion of sick days; cuts in, or the relinquishing of, overtime options; shifting to a part-time position or a framework of flexible work hours; arriving late or leaving early; loss of promotion possibilities; lack of professional advancement; and, in extreme cases, even resignation and withdrawal from the workforce altogether (MetLife, 1999; Pandya & Coleman, 2000). Research conducted in Israel on this issue also reveals the employment-related price paid by informal caregivers of older friends and relatives. A study of caregivers tending to relatives confined to their homes found that 38% of the caregivers reduced their work hours, and 48% were absent from work for several days. Of the caregivers who were not employed at the time of the study, 26% indicated that they had to stop working or stopped seeking employment because they needed to care for an elderly parent (Bentur et al., 1998). Therefore, there is enough evidence to conclude that the combination of the factors described above demonstrates that the burden of informal care takes a heavy toll on those workers who choose to provide long-term informal care for their older relatives (Gignac, Kelloway, & Gottlieb, 1996).

LAW AND SUPPORT FOR ELDERCARE IN ISRAEL Legal Support for Eldercare Many countries, including Israel, have recognized the significance and importance of informal care to long-term eldercare. In addition, awareness of the high price that workers who provide care for their older family members are forced to pay has increased in recent decades. This awareness has in some cases been translated into legislation and social policies that, among other things, support working caregivers. The following discussion focuses on employment support policy, or those laws and instruments that provide support for informal caregivers of older persons by easing the degree of conflict between work and care commitments.

Support for Informal Care in Israeli Labor Law Israeli legislation includes different statutes that attempt to alleviate the burden of informal eldercare carried by family members. For example, the Nursing Care Act (which is part of Israel’s National Insurance Act) provides in-home formal care services for disabled older persons living in the community. Although this legislation does not directly address the work versus eldercare dilemma, there are two pieces of legislation that do pertain directly to the issue of employment support for

Independent Articles

114

family members who provide informal care for their older relatives. The first piece of legislation is found in Article 6 of the “Severance Compensation Act of 1963” (hereinafter Severance Compensation Act ) and the other is the “Paid Sick Leave” (Due to a Parent’s Illness) Act of 1993 (hereinafter “Paid Sick Leave Act”). These two pieces of legislation are discussed at length in the next section.

Article 6 of the Severance Compensation Act The Severance Compensation Act is a general law that deals with terminating the employee–employer relationship under circumstances of dismissal or resignation. As such, it was not intended to deal with the issue of family members functioning as informal caregivers of older relatives. However, among all the articles that deal with the legal conditions in which an employee’s voluntary resignation may be legally considered severance, and thus legally merit compensation, a condition relevant to the eldercare issue is mentioned. Article 6 of the Severance Compensation Act states: Should an employee resign due to either his/her own or a family member’s health condition… for the matter of compensation, the resignation is considered equivalent to severance.

Although the main intent of this article may have been to deal with instances in which an employee is forced to resign due to his or her own health condition, it nevertheless includes the possibility of considering “resignation as a dismissal” when the cause of the resignation is the health of the employee’s “family member.” The term family member is defined in the regulations to this article as follows: 1. The employee’s spouse, or one known in public as the person with whom the employee shares his or her life; 2. The employee’s child, including a stepchild or an adopted child; 3. The employee’s parent; 4. The employee’s grandchild or grandparent or a live-in parent-in-law who is financially supported by the employee. The combination of Article 6 of the act and the definition of family member in the regulations effectively means that employees who resign in order to care for their older parents, grandparents, or parents-in-law are entitled to full severance compensation, as well as to all the rights applicable to a worker who has been dismissed. The ordinance in this article provides some degree of relief to family members who decide to dedicate themselves to the long-term informal care of their older relatives, given that such a decision does not deprive them of their right to workers’ compensation. Therefore, the financial damage incurred by ending the employee–

Work vs. Eldercare Dilemma & the Law

115

employer relationship is addressed. Another significant aspect of this article is its relation to unemployment benefits. Based on Article 6, an employee can resign and is nevertheless entitled to full unemployment benefits without delay of deducted days (as long as no job is found that offers suitable conditions, i.e., that enables the worker to continue in the role of informal caregiver for an elderly relative) (Gisin v. NII, 1998). As a matter of fact, no study has been conducted in Israel regarding the extent to which informal care providers actually use this legal option. Moreover, Labor Courts’ decrees published in various databases reveal that only a very few cases based on this article of the law ever reach the courts. Several rulings have stated that the family member’s health condition cannot be simply one of the factors that led to the resignation, but rather it must be the sole or the main factor that actually led the worker to resign (Sholomon v. Cohen, 1998). Furthermore, the courts ruled that the resignation does not need to be solely for the purpose of direct caregiving. There were several cases where the worker resigned not to personally provide care, but in order to manage an older relative’s farm (Asadi v. Kit LTD., 1966), move the residence closer to the location of medical treatment (Tsofnat v. State of Israel, 1983), or even deal with other matters not directly related to the care or treatment of the elderly relative (Bentzilovits v. Ata LTD, 1978). In all these cases, the court recognized the resignation as meriting severance compensation. The courts also have ruled that, whenever the work conditions can be adapted to enable the employee to continue working while providing the informal care, a resignation is considered unjustified, and the employee must continue working under the new conditions. Therefore, it is an employee’s obligation to inform the employer of the reason for resigning, so that the employer will have the option to offer improved or suitable conditions as a solution (e.g., allowing flexibility or a change in the work environment, in order to eliminate the employee’s reason for resigning) (Snonit v. Peretz, 1997).

Paid Sick Leave (Due to a Parent’s Illness) Act of 1993 In contrast to the Severance Compensation Act, the Paid Sick Leave Act of 1993 was legislated with the specific intent of addressing the issue of the aging Israeli society and the existing conflict between informal eldercare and one’s duties to the workplace. The preamble to the proposed law in its initial stages of legislation stated: As life expectancy increases, a heavy burden is placed on the children of the elderly, especially in regard to caring for a sick parent. An older parent’s illness affects the family much like a child’s illness does–an issue that is addressed in many collective agreements. It is proposed that every worker be allowed absences due to an older parent’s illness, in order to enable the worker to make the necessary arrangements for the parent’s care. (Proposed Acts, 1993)

Independent Articles

116

During the discussion of the act’s proposal in the parliamentary plenum, the initiator of this law, Knesset member Yoram Less, gave a detailed rationale for his proposal: We are in a new generation, in which the number of older persons is increasing, and a growing number of families find themselves investing in and caring for parents, perhaps more than for children…When an old person becomes ill, the family is gravely affected. . . . All these things have a strong effect on the families, and they should be allowed the peace of mind necessary to attend to this problem. (Knesset Minutes, 1992)

Following the legislative proceedings, the law allowing employees to use up to 6 paid days of absence a year due to illness of a parent or in-law age 65 or older, as part of the employee’s total accumulated sick leave, was finally ratified in 1993 . However, this legal option is available only if the employee’s spouse is working and does not simultaneously use the same option. Furthermore, the law defines illness as a condition in which the older parent is sick and completely dependent on the help of others to manage everyday activities. As a result, the law effectively allows workers whose parents are totally dependent on help for daily functioning to devote 6 working days a year to care for them without having to make any special appeals to their employer, and without incurring any loss to their income (aside from the deduction of 6 days from their accumulated paid sick leave). Since its enactment, there has been no empirical research conducted as to the actual usage of the law or the awareness of its existence. There also are no documented court rulings regarding this law, and the interpretive policies that could follow have yet to be determined in the labor courts. However, the significance of the act can be attributed to its symbolic dimension. It is a milestone marking Israeli legislators’ awareness of the need for legislative arrangements in the sphere of employment support.

A CRITIQUE OF THE ISRAEL SITUATION Having presented the social background and describing both Article 6 of the Severance Compensation Act and the Paid Sick Leave Act, this chapter next discusses three significantly different viewpoints of the Israeli legal situation.

Improving Existing Legislation One viewpoint rests on the assumption that the current Israeli legislation is a good first step, which only needs to be improved and expanded. More specifically, this viewpoint highlights the following weaknesses in the Israeli legislation that need to be addressed. The Legal Definition of Family Member and Parent One drawback of both Israeli laws is the restrictive definition of the terms family member and parent. The definition of the term parent as found in the Paid Sick

Work vs. Eldercare Dilemma & the Law

117

Leave Act is limited and pertains only to the elderly parent of either the employee or the employee’s spouse. In contrast, in the Severance Compensation Act, the definition of a family member is broader, as it also includes the employee’s spouse and grandparents. However, it is more restrictive in that it excludes parents-in-law who live independently and who do not rely entirely on the employee for their financial support. When the diverse characteristics of those who provide informal care are taken into account, it is obvious that these definitions are too limited and do not fully correspond to the actual needs that arise. First, there is no apparent reason to create legislative incongruence and deprive an adult grandchild of the right to use days of paid sick leave to care for an ill and elderly grandparent. Second, both laws ignore the conditions of reality as revealed in empirical studies. These studies show that there is a broad spectrum of family members and nonfamily members, other than those included in the legislative definitions, who bear the burden of providing long-term care for older persons. Therefore, an appropriate legal policy must adopt as broad a definition as possible of the relationship between the caring employees and the older persons being cared for, in order to contend rationally and realistically with the phenomenon of informal long-term care for older persons (Lenhoff & Becker, 1989).

The Legal Definition of Ill Parent The Paid Sick Leave Act defines an ill parent as one who has become “totally dependent” on the help of others for performing daily living activities due to illness. This means that many employees who care for disabled older persons who are not in the most severe disability category are not entitled to benefit from this law. This means, for example, that an employee with a 77–year-old mother who cannot dress or wash herself, but who can cook, walk, or maintain continence without help, cannot take a paid leave to care for her mother. The reasoning behind this is that the mother’s condition is not an exact match to the description “entirely dependent on others,” because she is capable of eating on her own and ambulating independently within her residence with the use of a walker (Vinograd v. NII, 1999). Adopting such a restrictive definition of the term ill parent goes against the needs demonstrated in empirical studies. Long-term informal eldercare not only involves older individuals who are entirely disabled (i.e., who cannot perform five or six activities of daily living), but also those who are partially disabled (i.e., who cannot perform one to four activities of daily living). As a result of this restrictive legislative policy, significant numbers of employees who are informal caregivers of their older parents are not eligible for this legal benefit. A rational policy that corresponds to the diversity of ongoing informal care requires that the definition of sick parent be expanded to include those who are partially dependent on others for their activities of daily living activities (Lenhoff & Becker, 1989).

118

Independent Articles

The Content and Scope of Eligibility An analysis of the actual benefits granted family members under the two Israeli laws reveals that, in both cases, the benefits do not correspond realistically to the actual needs of those it aims to serve. In regard to the severance compensation benefit, the law clearly improves on the condition of workers who might otherwise have been forced to quit without receiving severance pay. However, the granting of severance compensation cannot be considered a “solution” to the significant financial loss suffered by employees who are forced to quit their jobs in order to care for an older parent. At best, the granting of severance compensation can help reduce the financial damage incurred by devoting all of one’s time providing continuous care to parents, and therefore eases the resulting burden. The Paid Sick Leave Act also fails to correspond with the actual needs. In the first place, the sick leave allowed is deducted from the employee’s personal allotment of sick days. Hence, the law does not bestow an “added” benefit, but rather allows the use of an existing one for a distinct purpose. Furthermore, it is clear that 6 days of paid sick leave per year are not representative of how much time and energy actually is involved in caring for the needs of disabled older persons. Finally, this law allows only one spouse to utilize the right to paid sick leave, because the law specifies that spouses cannot be absent from their respective places of work at the same time in order to care for a disabled older person. This legal restriction is unrealistic, because in order to provide sufficient care, many situations often require the involvement of several caregivers. In order to deal seriously with these issues, the government’s aim should be to provide additional sick days that are earmarked specifically for this purpose. These should be in addition to the normal number of sick days allotted to the employee.

Initiating New and Alternative Legislative Avenues The existing legal framework in Israel does not leave many options open to the employee who is the primary caregiver of an older relative. After using up their 6 allotted days of paid sick leave, employees have few options. They either can resign, rely on the good graces of their employer and attempt to negotiate a more flexible working environment, or move to a part-time position. However, there are other alternative and creative legal solutions that could resolve or alleviate conflicts that arise between a person’s workplace and informal care commitments. A Legal Right to a Family-Friendly Work Environment There are many preferred methods used by employees to adapt their schedules in order to fit in their family or socially related commitments, including holding the legal right to shift from a full- to a part-time position, from formal to flexible work hours, or to work from home. Research on this issue reveals that the availability of flexible working conditions is the strategy preferred for use in resolving the con-

Work vs. Eldercare Dilemma & the Law

119

flict between work commitments and the duty to care for others in various familial situations, including caring for older relatives (Ontario Women’s Directorate, 1991). One advantage of such a broad, flexible employment policy is that it can be specifically designed to affect all employees under the general policy of a “family friendly work environment.” Such legal policies cover a broad range of situations involving filial responsibility and eliminate the stigma associated with asking for special dispensation due to the particular circumstances surrounding the provision of continuous care for older relatives (Phillips, 1999). Family Leave or Family Care Leave The legal concept of family leave can be defined in many broader and more flexible ways than the one adopted under Israeli law. For example, it could be adopted as part of a policy that allows employees to take an unpaid or partially paid leave for a substantial period of time per year, with a commitment to resume their employment after the completion of their responsibility to care for an older relative (Reichert & Naegele, 1999). Another possibility is to give employees the ability to choose between severance compensation and unpaid leave for a period of 1 or 2 years or more, while in the interim period they could continue to accumulate seniority and pension rights. At the end of the leave period, they would hold the legal right to choose between re-employment or severance compensation. These innovative types of family leave legislation are being tried in several locations worldwide (Evers & Leichsenring, 1994; Ishii-Kuntz, 1999; Reichert & Naegele, 1999). Day Care Centers for Older Persons Established by Employers An initiative by private employers to establish day care centers for the elderly in close proximity to the physical workplace also constitutes a creative solution to this problem. Making this service available to employees’ parents who require ongoing care could be made part of an employee’s overall benefit package. This arrangement could solve the conflict between work and informal caregiving commitments experienced by employees, and therefore reduce both the individual’s and the state’s financial burden. So far, this policy is not commonly used or accepted, but it has been acknowledged in academic literature (Phillips, 1999). Encouragement, Support, and Empowerment of Caregivers A general problem related to informal care for older persons is a lack of knowledge and the need for empowerment of the caregivers. Research shows that many informal caregivers encounter practical problems due to their lack of both knowledge and awareness regarding their legal rights and available social support services (Green & Monahan, 1989; Toseland & Rossiter, 1989). Many programs intended to deal with these questions exist. These programs may provide relevant information, offer support groups and consultations on a regular basis, or provide support services that can reduce the actual burden (Mittelman, 1995; Sorensen, Pinquart, Duberstein, & Duberstein, 2002). Moreover, there are initiatives established by

120

Independent Articles

private employers that provide information and support services to employees engaged in informal caregiving as part of the company’s employment benefit package (Phillips, 1999). The Role of Labor Unions and Employer Organizations A review of nonstatutory Israeli employment support for informal child care in collective agreements reveals that, especially in the field of child care, some labor unions negotiated special family benefits for their members that went beyond the support provided by statutory law. For example, the collective agreement of the academic workers in the social sciences field provides that a working mother with at least two children under the age of 12 is allowed to finish her workday earlier. However, regarding long-term care for older persons, there is no collective agreement that reflects any attempt to go beyond the statutory law. It appears that neither the labor unions nor the employers’ organizations in the private sector in Israel are sufficiently aware of the need to develop programs or initiatives to help resolve the difficulties experienced by employees who act as caregivers of their older parents. Unfortunately, this situation is not unique to Israel. According to a study conducted in the early 1990s, less that 10% of private employers in the United States had begun to recognize the difficulties encountered by employees involved in ongoing informal care of elderly relatives, and fewer yet had developed a specific employment policy to address this issue (Seccombe, 1992; Stone, 1994). The range of possible initiatives and actions in this regard is extensive. Employers have the ability to create a support network providing information and education for employees regarding their role as informal caregivers. Employers (mostly in large corporations) could offer a flexible benefits package allowing employees to choose among various options that would include specific benefits related to informal care of older relatives. Employers also could offer flexible work hours, flexible leave periods, and family-friendly policies to employees with care giving commitments to family members. Therefore, Israel is in a position similar to other countries that must respond to the calls of scholars imploring employers to create and initiate new policies in this field (Starrels, Inersoll-Dayton, Neal, & Yamada, 1995).

Questioning the Rationale and the Motives There are some fundamental concerns over the justification for legally supporting workers who take it on themselves to care for their older relatives. These concerns extend beyond the specific limitations of Israeli law and the spectrum of possible alternatives to expand and develop support policies. The first concern is the fundamental relationship between the legal support given and the actual informal care that is provided. The assumption underlying the policies discussed above is that the state, through legislation, can influence or encourage people to assume the ongoing burden of care for their older relatives. However, some scholars have sug-

Work vs. Eldercare Dilemma & the Law

121

gested that, although financial incentives can provide some support for informal caregivers who would handle the role under any conditions, they are not sufficient to change the behavior patterns of those who do not feel morally committed to provide such care (Arling & McAuley, 1983; Horowitz & Shindelman, 1983; Merril, 1997). The question is not only whether this legal support actually makes a difference in informal long-term care for older persons, but also whether or not it should make a difference. In Judaism, as in other religions, the moral obligation to care for older parents is ancient and well rooted. Even without a religious moral framework, there are many moral factors obligating children to care for their older parents. These include reasons such as gratitude, reciprocity and acceptance, return of favor, and the conceptual values of family and community (Nelson & Nelson, 1992). These moral obligations are not dependent on remuneration, incentives, or benefits. Some argue that adherence to these moral values could lead some to claim that, ethically, the state should not support those providing informal care for older relatives because they are only fulfilling their customary social and moral duties. Another important issue that should not be overlooked is the economic concern. Is the cost of supporting individuals who provide informal care for older relatives and friends lower than the cost of formal care? In terms of social welfare policy, would an expansion of the framework of formal community welfare services be less expensive than the loss incurred to employers and the market by funding family members who provide a similar service? Is it correct to obligate private employers to share the financial burden of informal care for the older population rather than place the burden on the public? From an economic perspective, these and other related issues are particularly controversial and complex, and several studies have produced different findings (Naon, Factor, Brodsky, Cohen, & Dolev, 1992). Finally, there is a valid concern that the employment support policy for informal eldercare conceals a hidden political agenda. Under this political agenda, the state is not obliged to care for its older population. By adopting an employment support policy, the state frees itself from any direct responsibility toward its older and disabled citizens. Society places the responsibility for caring for the elderly on family members, leaving employers and employees to shoulder the financial burden. However, such a privatization policy is also subject to criticism from those who claim that it would hurt precisely the most vulnerable and poor among the disabled elderly. Employment support would have no practical significance for the elderly whose family members are unemployed or employed in jobs with poor conditions or low salaries, or for those who have no family or other sources of support.

CONCLUSIONS Employment support for informal long-term care for older persons is only a small portion of the broad social policy regarding long-term care for older persons. Israeli

122

Independent Articles

legislation in the sphere of employment support indicates that, although it deals with a very small and specific issue, the two limited pieces of legislation discussed here encompass a broad spectrum of considerations and issues. The question, then, is what the future holds for employment support legislation in Israel and other countries. Through its analysis of the existing legal situation, social background, and different critiques, this chapter reveals the difficulties in predicting the answer to this question. However, any future Israeli legal developments must be based on their ability to address the different concerns discussed in this chapter. As a result, the current Israeli challenge is to engage in empirical research in order to reveal the actual influence that legislation has on eldercare. One challenge is to provide an accurate and reliable cost-benefit analysis of employment support legislation. Another challenge is to open up the moral and political considerations to public debate in the context of a broader political discussion concerning the state’s role in providing long-term care services for its older population. These challenges have not yet been met in Israel, and rather than making a genuine attempt to address the work versus eldercare dilemma, current legislation just pays lip service to informal caregivers. The only way to decide the future of legal support of informal eldercare, both in Israel and elsewhere, is to tackle the challenges in this field head-on.

REFERENCES Arling G., &. McAuley, W. J , (1983). The feasibility of public payments for family caregiving. Gerontologist, 23(3), 300–306. Asadi v. Kit LTD., 1966, Regional Decisions, 166/66. Bentzilovits v. Ata LTD, 1978, Labor Decisions, 30/3–18. Be’er, S. 1996. Needs of the elderly in Israel by geographical region: 1994–2005. Jerusalem: Brookdale [in Hebrew]. Bentur, N., Y. King, J. Brodsky, A. Mualem, & Gindin, J. (1998). Home-care under the Israel health-care system. Jerusalem: Brookdale [in Hebrew]. Braithwaite, V. (1992). Caregiving burden. Research on Aging, 14(1), 3–27. Brodsky, J., Sobol, E., Noon, D., King, Y., & Lipshitz, C., (1991). Needs of elderly living in the community in the fields of health and welfare. Jerusalem: Joint [in Hebrew]. Brodsky, J, & Morginstin, B., (1999). Balance of familial and state responsibility for the elderly and their caregivers in Israel. In V.M. Lechner and M.B. Neal (Eds.), Work and caring for the elderly, Philadelphia: Brunner/Mazel. Brodsky, J., Naon, D., & King, I., (1993). The impact of broadening home care on the situation of disabled elderly after the enactment of Israel’s community based long term care insurance. Jerusalem: Brookdale [in Hebrew]. Brodsky, J., Shnoor, Y., & Be’er, S., eds. 2001. The elderly in Israel: Annual statistics. Jerusalem: Brookdale [in Hebrew]. Brody, E.M. 1995. Prospects of Family Caregiving. In R. A. Kane & J. D. Penrod (Eds.), Family caregiving in an aging society—policy perspectives (pp.15–28). Thousand Oaks, CA: Sage Publications. Cantor, M. H. (1983). Strain among caregivers: A study of experience in the United States. Gerontologist, 23(6), 597–604.

Work vs. Eldercare Dilemma & the Law

123

Chappell, N. L. (1992). Social support and aging. Toronto: Butterworths. Evers, A., & Leichsenring, K., (1994). Paying for informal care: An issue of growing importance. Ageing International, 21(1), 29–40. Factor, H., & Primak, H. (1990). Disabilities in older persons in Israel. Jerusalem: Joint. Factor, H., Be’er, S., & Primak, H. (1992). Projections of the demographic characteristics of the elderly disability and service needs to the year 2000. In T. Barnea & J. Habib (Eds.), Ageing in Israel in the 1990s (pp. 15–90). Jerusalem: Eshel. Gignac, M. A. M., Kelloway, E. K. , & Gottlieb, B. H. (1996). The impact of caregiving on employment: A mediational model of work-family conflict. Canadian Journal on Aging, 15, 525–542. Gisin v. NII, 1998, Labor Decisions, 98/48–0. Green, V. L., & Monahan, D. J. (1989). The effect of support and education programs on stress and burden among family caregivers to frail elderly persons. Gerontologist, 29(4), 472–477. Greenhaus, J. H., & Beutell, N. J., (1985). Sources of conflict between work and family roles. Academy of Management Review, 10, 76–88. Habib, J., & Windmiller, K., (1993). Family support for elderly in Israel. Jerusalem: Brookdale. Haley, W. E., Levine, E. G., Brown, S. L., Berry, J. W., & Hughes, G. H. (1987). Psychological, social and health consequences of caring for a relative with senile dementia. Journal of the American Geriatrics Society, 35(5), 405–411. Horowitz A., & Shindelman, L. W. (1983). Social and economic incentives for family caregivers. Health Care Financing Review, 5(2), 25–33. Ishii-Kuntz, M. (1999). Japan and its planning toward family caregiving. In V. M. Lechner & M. B. Neal (Eds.), Work and caring for the elderly (p.85). Philadelphia: Brunner/ Mazel. Kane, R.A., & Penrod, J. D. (Eds.). (1995). Family caregiving in an aging society: Policy perspectives. Thousand Oaks, CA: Sage Publications. Kinsella, K., & Velkoff, V. A. (2001). An aging world, (2001). Washington, DC: U.S.: Bureau of the Census. Knesset Minutes, (1992), vol. 125 p. 5329. Lenhoff, D. R., & Becker, S.M. (1989). Family and medical leave legislation in the states: Toward a comprehensive approach. Harvard Journal on Legislation, 26(1), 403– 464. Merril, D.M. (1997). Caring for elderly parents: Juggling work, family and caregiving in middle and working class families. London: Auburn House. MetLife. (1999). The MetLife Juggling Act Study. Balancing caregiving with work and the cost involved. New York: Author. Mittelman, M.S., Ferris, S. H., Shulman, S. H., Steinberg, G., Ambinder, A., Mackell, J., & Cohen, J., (1995). A comprehensive support program: effect on depression in spousecaregivers of AD patients. Gerontologist, 35(6), 792–802. Morgan, P., & Lawton, C. (Eds.). (1996). Ethical issues in six religious traditions. Edinburgh: Edinburgh University Press. Naon, D., Factor, H., Brodsky, J., Cohen, M., & Dolev, T. (1992). Preventing institutionalization of disabled elderly through providing community based long term care services. Jerusalem: Joint. Neal, M., Chapman, N. J., Ingersoll-Dayton, B., & Emlen, A.C., (1993). Balancing work and caregiving for children, adults and elders. Thousand Oaks, CA: Sage Publications.

124

Independent Articles

Nelson, L., & Nelson, J. L., (1992). Frail parents, robust duties. Utah Law Review, 747– 764. Ontario Women’s Directorate. (1991). Work and family: The crucial balance. Toronto: Author. Pandya, S. M., & Coleman, B., (2000). Caregiving and long-term care. Retrieved from http://research.aarp.org/health/fs82_caregiving.html . Phillips, J. (1999). Developing a caregivers’ strategy in Britain. In V. A. Lechner & M. B. Neal (Eds.), Work and caring for the elderly (p.47). Philadelphia: Brunner/Mazel. Proposed Acts, 1993, No. 2195. Reichert, M., & Naegele, G. (1999). Elder care and the workplace in Germany: An issue for the future? In V. M. Lechner & M. B. Neal (Eds.), Work and caring for the elderly (p. 29). Philadelphia: Brunner/Mazel. Rosin, A. (1979). Aging and old age according to Jewish sources. Gerontology, 3, 33–37 [in Hebrew]. Seccombe, K. (1992). Employment, the family, and employer-based policies. In J.W. Dwyer & R. T. Coward (Eds.), Gender, families and elder care (p. 74). Thousand Oaks, CA: Sage Publications. Sheehan, N.W., & Nuttall, P., (1988). Conflict, emotion and personal strain among family caregivers. Family Relations, 37, 98–92. Sholomon v. Cohen, 1998, Labor Decisions, 98/2–927. Snonit v. Peretz, 1997, Labor Decisions, 97/3–91. Sorensen, S., Pinquart, M., Duberstein, P., & Duberstein, P. (2002). How effective are interventions with caregivers? An updated meta-analysis. Gerontologist, 42(3), 356–372. Starrels, M. E., Ingersoll-Dayton, B., Neal, M. B., & Yamada, H. (1995). Intergenerational solidarity and the workplace: Employees caring for their parents. Journal of Marriage and the Family, 57, 751–762. Stone, L. O. (1994). Dimensions of job-family tension. Ottawa: Statistics Canada. Tennstedt, S. (2001). Family caregiving in an aging society. Retrieved May 23, 2002, from http://www.aoa.gov/caregivers/famcare.html. Toseland, R. W., & Rossiter, C. W. (1989). Group interventions to support family caregivers: A review and analysis. Gerontologist, 29(4), 438–448. Tsofnat v. State of Israel, 1983, Labor Decisions, 35/24–3. Vinograd v. NII, 1999, Labor Decisions, 99/2.

Ethics, Law, and Aging Review, Vol. 10, 2004 © 2004 Springer Publishing Company

Book Reviews Regulating Healthcare: A Prescription for Improvement?, by Kieran Walshe. Berkshire, England: Open University Press (distributed by Routledge, New York). 2003, 262 pages, $34.95 (paper).

W

hen I was employed by a government regulatory agency a number of years ago, I was dismayed one day to receive a request from my superiors asking me to supply evidence (as opposed to the usual automatic assumption or bald conjecture) demonstrating the likelihood of a positive tangible impact on real human lives to justify the regulations regarding nursing home residents’ rights that I had been busily working on drafting. At the time, I (and my fellow regulators whom I told about this assignment) were offended at the audacity of those who were questioning the obvious rightness of our regulatory zeal. In the intervening span, however, I have come to appreciate the wisdom of my thenresented questioners. Health care regulation should not be an end in and of itself. This should not be a radical proposition, but in today’s hyperregulated health care environment, characterized by external overseers of various stripes virtually perched full-time on the shoulders of those trying to actually provide health services both in the United States and in author Kieran Walshe’s homeland, it is a message that probably outrages many. It is precisely those public policy makers, regulators, and consumer advocates (both official and self-anointed) who are likely to take issue with this book’s premise that, “ultimately, the purpose of regulation is not regulation itself, and the performance of regulators should not be judged in terms of how well they regulate, but by assessing how well they achieve the objectives of regulation,” (p. 173) who need to carefully study Regulating Healthcare and can benefit the most from its lessons. Walshe, a reader in public management and director of research at the Manchester center for Healthcare Management at the University of Manchester (England), acknowledges some degree and sort of health care regulation as a given in modern societies. In light of health care regulation’s inevitability, Walshe methodically and

125

126

Book Reviews

articulately unpacks, compares, and contrasts its logic in the United States and the United Kingdom, focusing on the four regulatory components of standards, process, detection, and enforcement. He seeks to remedy what he insightfully diagnoses as the absence of any meaningful “evaluative culture” (p. 237) in the world of health care regulation until very recently. He describes well the failure, indeed the aggressive unwillingness, of conventional thinkers to take a hard look at the tradeoffs involved in the regulatory process as follows: In both the USA and the UK, regulation seems to have an inherent momentum, all of its own, which means that once government or the healthcare industry takes steps to regulate, those actions are very difficult to slow or stop, let alone to roll back or undo. Once a regulatory agency has been established and regulatory powers have been put in place, it is very difficult for anyone to say that it doesn’t work and we’d all be better off without it. . . . So, when regulation does not appear to work, the solution turned to by politicians and policymakers is often more regulation, not less. (p. 222)

Walshe begins his challenge to the regulatory “party line” with a concise introduction, first defining regulation as “sustained and focused control exercised by a public agency over activities which are valued by a community” (p. 9), then outlining the goals of regulation and its chief stakeholders and history in the United States and United Kingdom over the past three decades in the health care context. This sets the stage for a chapter that outlines key concepts and theories in health care regulation. Chapter 3 describes how health care is regulated in the United States, concentrating particularly on hospitals, health plans (e.g. managed care organizations), and nursing facilities to dissect how American health care regulation functions. This chapter deals with regulation emanating from both the federal government and various voluntary (nongovernmental) organizations such as the Joint Commission on the Accreditation of Healthcare Organizations (JCAHO) and the National Committee for Quality Assurance. When state law is applicable, Walshe cites California for illustrative purposes; these references stem not only from that state’s importance in terms of size and precedent-setting history, but from the time that the author spent in 2000-01 at the University of California School of Public Health as a Commonwealth Fund Harkness Fellow. Chapter 4 provides a broadly parallel account of how health care is regulated in the United Kingdom under the National Health Service. Chapter 5 then evaluates, side by side, each component of health care regulatory practice in the two analyzed jurisdictions. Although he refers to it in other places as well, it is in this chapter that Walshe specifically focuses on the important distinctions found among three competing models of regulation: deterrence (characterized by a basic distrust by regulators and consumer advocates of the motives and integrity of the regulated health care provider or payer and illustrated by the contemporary governmental animosity toward the nursing home industry in the United States); compliance (characterized by a supportive, collaborative, consultative relationship between regulator and regulated entity in the mutual quest for

127

Book Reviews

quality improvement and illustrated by the JCAHO’s approach to hospital accreditation), and responsive or “smart” regulation. The latter approach is characterized by contingency (making the nature of the regulatory regime dependent on the behavior of individual regulated organizations), providing the regulator with a range or hierarchy of potential interventions instead of just one draconian sanction to apply (or not apply, as is more frequently the case), flexibility for regulators to exercise discretion and professional judgment in the regulatory process, a tripartism that co-opts other stakeholders to the purposes of regulation so as to extend or amplify regulatory oversight and align regulatory requirements with other influences on regulated organizations, a parsimony that employs the least intrusive and simplest regulatory interventions that will achieve a chosen objective, and the use of regulation designed to empower the regulated organization to accomplish wider performance improvement. Throughout this exposition of the comparative regulatory landscape, Walshe is scrupulously honest and evenhanded in his identification and analysis of the salient issues and evidence. In the final chapter, he arrives at proposed principles for effective health care regulation: focus on performance improvement, responsiveness, proportionality and targeting, rigor and robustness, flexibility and consistency, cost-consciousness, openness and transparency, enforceability, accountability and independence, and evaluation and review. These dimensions of regulation, which I commend to the consideration of the thoughtful reader of this fine volume, are encapsulated in the sage practical advice: First, we should regulate cautiously and carefully, and be hesitant and sceptical about proposals to extend the remit or scope of regulation unless we are really sure that it is necessary and will work. Secondly, we should be much more willing to consider alternative or complementary strategies to regulation, and to compare and test the likely effectiveness of regulatory and non-regulatory approaches to securing the same objectives. (p. 222)

Reviewer Marshall B. Kapp, JD, MPH, FCLM

What Price Better Health? Hazards of the Research Imperative, by Daniel Callahan. University of California Press. 2003, 341 pages, $29.95 (cloth). No politician would ever have the courage, let alone the insight, to raise serious questions about the social, medical, and economic value of doing and supporting scientific research, particularly research relevant to human health and health care. For readers interested in thoughtful analysis of important societal issues, it is fortunate that independently minded philosopher Daniel Callahan, a cofounder of the Hastings Center bioethics think tank, is not running for office. Although largely praising the enterprise of research and the high motives and integrity of most

128

Book Reviews

investigators who pursue it, Callahan uses this book to point out the ethical and social “shadows” that sometimes cloud research’s (especially “successful” research’s) bright light: the temptation to invest too much hope in research as a means of relieving the human condition, overcommercialization of research and its products, the cutting of moral corners in the pursuit of therapies and cures, paying insufficient heed to the rights and welfare of human research subjects, and diverting attention from the social and economic origins of sickness, among others. In trying to separate these shadows of research from the obvious beams of positive light, Callahan raises questions about the “research imperative” as a cultural concern (this book deals exclusively with the United States) rather than as a problem created by particular unscrupulous individuals. What Price Better Health? strongly echoes and naturally extends the author’s earlier cautions, particularly articulated in his controversial Setting Limits and What Kind of Life?, about the realistic and proper limits of medicine in ultimately defeating illness, aging, and death. Here, he examines both the ethical propriety of conducting specific types of research and the related but distinct question of whether government or the private sector, or both or neither, ought to fund particular projects. The book moves ambitiously through three phases: the goals or ends of medical research, the means used to pursue those goals, and the crafting of public policy on research. One underlying question drives each of the ten chapters. These questions (in order of their discussion) are: How and why did a research imperative arise? What are the animating values of scientific research, and what are the norms of social responsibility that should guide researchers? What are appropriate research goals, and how best should we deal with two traditional goals of research, forestalling death and relieving the burdens of aging? (Callahan’s reflections about the dubious wisdom of the research community’s war on aging in Chapter 3 probably will be the most interesting part for gerontologists.) Should medical research focus solely on the prevention of disease and the restoration of health, or should it move on to the enhancement of human physical and psychological traits? What stance, and with what values, should the research community and the public take toward research that has both risks and benefits? Why has human subject research been such a significant issue in the medical sphere, and what are the history and values that have given it such practical and symbolic importance? How should pluralistic societies deal with, and resolve, research debates that reveal great religious, philosophical, and ideological differences? Because of its importance for health, can we hold the pharmaceutical industry to different, indeed higher, moral standards than other industries, and can the need to do research justify the industry’s traditionally high profits? Can we develop and justify a well-organized system to set national research priorities? How can we find a better fit between national research priorities and national health care distribution practices? As always, Callahan’s writing is thoughtful and provocative, making sophisticated philosophical discourse tolerable, even comprehensible and intriguing, for the nonphilosopher. Each chapter is extensively referenced. Most significantly,

Book Reviews

129

Callahan remains scrupulously candid in taking on the sacred cows of science and politics. (This reviewer’s favorite example of Callahan’s candor appears on page 41, where Callahan, in the context of discussing the David Baltimore case of the early 1990s involving false accusations of scientific misconduct, absolutely correctly calls Congressman John Dingell “a grandstander and often unfair to researchers.”) Medical research is a heavily regulated enterprise in the United States today. The extensive legal labyrinth surely reflects the importance that society places on the conduct and continuation of this activity. Although Callahan makes no pretense of any real detailed legal analysis, readers concerned with the role of regulation in shaping and determining the ethical and social issues accompanying and arising from the research imperative will find this book an important addition to their libraries. So, too, will biomedical, behavioral, and social science researchers, research sponsors, professionals who work with potential subjects and beneficiaries of research, and citizens who care about the wise and fair distribution of precious social and economic resources. Reviewer Marshall B. Kapp, JD, MPH, FCLM

Incapacitated and Alone: Health Care Decision-Making for the Unbefriended and Elderly, by Naomi Karp and Erica Wood. Washington, DC: American Bar Association Commission on Law and Aging. 2003, 62 pages, $25.00 (paper). The legal and ethical complications of providing medical services to older people who lack sufficient cognitive and/or emotional capacity to make their own voluntary, informed, autonomous choices beguile clinicians, administrators, and the attorneys and ethicists who attempt to advise them. The number of persons with seriously impaired decisional abilities grows, as the population ages and the prevalence of impairment-inducing ailments, including dementia and depression, increases. Ordinarily, health care providers turn to the patient’s advance directive, if one has been created; otherwise, they seek out available surrogates, most frequently close family members, whether or not those persons have any formal legal authority, for authorization to treat or abate treatment of a decisionally incapacitated patient. However, a further, deeply exacerbating wrinkle to the decisional incapacity scenario is presented when—as is increasingly the situation today—there exists neither an advance directive nor any identifiable, willing and available surrogate, with or without formal legal authorization, to speak on behalf of or in place of the incapacitated patient. It is this problem, the plight of the “unbefriended” and the legal and ethical challenges that they pose for those responsible for their medical care, that Incapacitated and Alone skillfully addresses.

130

Book Reviews

This publication reports the results of a 2002–003 study by the American Bar Association Commission on Law and Aging, with support from the Fan Fox and Leslie R. Samuels Foundation, and in collaboration with the Samuel Sadin Institute on Law, Brookdale Center on Aging of Hunter College. The investigators found that, in most states, the legal framework for making treatment decisions on behalf of isolated, unbefriended individuals (of any age) is insufficient to protect the values and well-being of these highly vulnerable persons. As a result, they may be subject to inappropriate overtreatment or undertreatment. This concise report outlines the present state of law and practice in health care decision-making for the unbefriended elderly and suggests several workable solutions and policy suggestions that aim, foremost, to ensure that solitary patients with no advocate and no track record of values and life history are the focus of a deliberative process of both medical and ethical scrutiny. The ABA and colleagues have performed an admirable service by beginning to tackle clearly and cogently an important, difficult, and largely (the authors include a review of the sparse relevant literature) neglected area of concern. Those who regulate, oversee, plan, or otherwise influence the provision of medical care to older patients at risk will benefit from the authors’ toil. Reviewer Marshall B. Kapp, JD, MPH, FCLM

A Golden Opportunity: Managing the Risk of Service to Seniors, published jointly by the Nonprofit Risk Management Center (Washington, DC) and the Housing Authority Insurance Group (Cheshire, CT). 2003, 92 pages, $20.00 (paper). Nonprofit, community-based service organizations perform a variety of good deeds by supplementing the work of families in caring for older persons who are no longer able to be fully independent. Nonetheless, in the United States today those organizations increasingly are exposed to the possibility of lawsuits and legal and financial liability for their failure to recognize and/or respond adequately to the special vulnerabilities to harm that characterize many of their older clients. The continued viability of any organization, that is, its capacity to stay in business and keep on providing needed services, demands that it control the extent of its legal and financial exposure by effectively managing its risks. Thus, this manual was prepared to assist service organizations (especially adult day care centers, sponsors of home-delivered meals, and agencies that make available individuals to visit older persons periodically in their homes) to adjust to their new, unavoidable risk management roles. This concise publication usefully and accessibly lays out the fundamentals of organizational risk management in the context of senior services. It contains solid, practical guidance regarding a variety of tasks that carry important risk manage-

Book Reviews

131

ment ramifications, such as the screening and supervision of applicants for staff and volunteer positions. The short primer on the myriad forms of insurance coverage relevant to service agencies presents particularly valuable information. Administrators, boards, staff, and volunteers who study this manual will emerge better equipped to deal proactively with their responsibilities concerning the safety and well-being of the at-risk older clients whom they are privileged to serve. Reviewer Marshall B. Kapp, JD, MPH, FCLM

The National Bioethics Commission: Contributing to Public Policy, by Elisa Eisman. Santa Monica, CA: RAND. 2003, 172 pages, $24.00 (paper). The National Bioethics Advisory Commission (NBAC) was established by president Bill Clinton through Executive Order 12975 in October 1995 and met for the first time in 1996. On October 2, 2001, the NBAC’s commission expired and its tenure ended. During its lifespan, NBAC produced six major reports on subjects ranging from cloning human beings and stem cell research to research with human biological materials and the protection of human participants in research. (These reports are available at www.georgetown.edu/research/nrcbl/nbac/pubs.) This publication describes these documents and provides a detailed account of the response to each of them, from March 2000 until NBAC went out of business, by the White House, Congress, federal and state governments, professional societies, philanthropic foundations, organizations representing private industry, patient advocacy groups, foreign governments, and international organizations. The underlying supposition is that the response of these groups to NBAC’s reports and recommendations represents a good indication of the extent to which NBAC’s work has been reflected in social policy and public discourse, keeping in mind that the reports no doubt have inspired discussion and potential actions that continue today. I agree with the author of this volume that “[t]his report should be of value to anyone interested in the role of commissions such as NBAC in the policymaking process” (p. iv). Additionally, despite NBAC’s consistent bias in making policy recommendations in line with a particular political orientation and expectations, I concur with the author that “[t]his report should also be of value to anyone interested in bioethical issues, especially the ethical use of new scientific discoveries and technological innovations and the protection of human participants in research. Policy makers, the research community, and the public should be interested in what NBAC recommended and the response to its work” (p. iv). Reviewer Marshall B. Kapp, JD, MPH, FCLM

This page intentionally left blank

Ethics, Law, and Aging Review, Vol. 10, 2004 © 2004 Springer Publishing Company

Books Received Aday, Ronald H. Aging Prisoners: Crisis in American Corrections. Westport, CT: Praeger Publishers, 2003, 240 pp., $24.95 softcover. Address, Richard F., & Person, Hara E. (eds.). That You May Live Long: Caring for Our Aging Parents, Caring for Ourselves. New York, UAHC Press, 2003, 198 pp., $12.95 softcover. Aldwin, Carolyn M., & Gilmer, Diane F. Health, Illness, and Optimal Aging: Biological and Psychosocial Perspectives. Thousand Oaks, CA: Sage Publications, 2004, 418 pp., $54.95 softcover. Baird, Robert M., & Rosenbaum, Stuart E. (eds.). Caring for the Dying: Critical Issues at the Edge of Life. Amherst, NY: Prometheus Books, 2003, 316 pp., $20.00 softcover. Biggs, Simon, Lowenstein, Ariela, & Hendricks, Jon (eds.). The Need for Theory: Critical Approaches to Social Gerontology. Amityville, NY: Baywood Publishing Company, Inc., 2003, 268 pp., $45.00 hardcover. Boumil, Marcia M., Elias, Clifford E., & Moes, Diane Bissonnette. Medical Liability in a Nutshell (2nd ed.). St. Paul, MN: West Publishing Company, 2003, 316 pp., $24.50 softcover. Burke, Thomas F. Lawyers, Lawsuits, and Legal Rights: The Battle over Litigation in American Society. Berkeley and Los Angeles: University of California Press, 2002, 267 pp., $29.95 hardcover. Carnot, Edward J. Is Your Parent in Good Hands? Protecting Your Aging Parent From Financial Abuse and Neglect. Sterling, VA: Capital Books, Inc., 2004, 262 pp., $18.95 softcover. Colker, Ruth, Milani, Adam A., & Tucker, Bonnie Poitras. The Law of Disability Discrimination (4th ed.). Cincinnati, OH: Anderson Publishing Company, 2003, 866 pp., $68.95 hardcover. 133

134

Books Received

Dayton, A. Kimberley, Gallanis, Thomas P., & Wood, Molly M. Elder Law: Readings, Cases, and Materials (2nd ed.). Cincinnati, OH: Anderson Publishing Company, 2003, 725 pp., $58.95 hardcover. Dayton, A. Kimberley, Gallanis, Thomas P., & Wood, Molly M. Elder Law: Statutes and Regulations (2nd ed.). Cincinnati, OH: Anderson Publishing Company, 2003, 594 pp., $24.95 softcover. Eckstein, Sue (ed.). Manual for Research Ethics Committees: Centre of Medical Law and Ethics, King’s College London. New York: Cambridge University Press: 2003, 558 pp., $175.00 hardcover. Fins, Joseph J., Peres, Judith R., Schumacher, J. Donald, & Meier, Cherry, with Tougas, Jane Grant, Long, Karen Nisley, & Sherman, Hollis Birnbaum. On the Road From Theory to Practice: Progressing Toward Seamless Palliative Care Near the End of Life. A Resource Guide to Promising Practices in Palliative Care Near the End of Life. Washington, DC, Last Acts: 2003, 126 pp., free. Available from Katie Alexander, (312) 751–0147, Steward Communications, 325 West Huron, Chicago, IL 60610, softcover. Frolik, Lawrence A., & Barnes, Alison McChrystal. Elder Law: Cases and Materials (3rd ed.). Newark, NJ: Matthew Bender & Company, Inc., 2003, 694 pp., $57.00 hardcover. Frolik, Lawrence A., & Barnes, Alison McChrystal. Elder Law: Selected Statutes and Regulations. Newark, NJ: Matthew Bender & Company, Inc., 2003, 584 pp., $16.00 softcover. Frolik, Lawrence A., & Kaplan, Richard L. Elder Law in a Nutshell (3rd ed.). St. Paul, MN: West Group, 2003, 433 pp., $24.50 softcover. Goodman, Kenneth W. Ethics and Evidence-based Medicine: Fallibility and Responsibility in Clinical Science. New York: Cambridge University Press, 2003, 168 pp., $75.00 hardcover; $27.00 softcover. Gostin, Lawrence O. (ed.). Public Health Law and Ethics: A Reader. Berkeley and Los Angeles: University of California Press, 2002, 521 pp., $35.00 softcover. Horwitz, Allan V. Creating Mental Illness. Chicago: The University of Chicago Press, 2003, 304 pp., $18.00 softcover. Housing Authority Insurance Group and Nonprofit Risk Management Center. A Golden Opportunity: Managing the Risks of Service to Seniors. Washington, DC: Nonprofit Risk Management Center, 2003, 92 pp., $20.00 softcover. Humber, James M., & Almeder, Robert F. (eds.). Stem Cell Research: Biomedical Ethics Reviews. Totowa, NJ: Humana Press, 2004, 184 pp., $49.50 hardcover.

Books Received

135

Levine, Jeffrey M. (ed.). Medical-Legal Aspects of Long-Term Care. Tucson, AZ: Lawyers & Judges Publishing Company, Inc., 2003, 376 pp., $89.00 hardcover. Magee, Mike. The Book of Choices: A Treasury of Insights for Personal and Professional Growth. New York: Spencer Books, 2002, 336 pp., $23.95 hardcover. McGee, Glenn. Beyond Genetics: Putting the Power of DNA to Work in Your Life. New York: William Morrow, 2003, 231 pp., $24.95 hardcover. Mehlman, Maxwell K. Wondergenes. Bloomington: Indiana University Press, 2003, 272 pp., $24.95 hardcover. Miller, Franklin G., Fletcher, John C., & Humber, James M. (eds.). The Nature and Prospect of Bioethics: Interdisciplinary Perspectives. Totowa, NJ: Humana Press, 2003., 206 pp., $44.50 hardcover. Norris, Margaret P., Molinari, Victor, & Ogland-Hand, Suzann (eds.). Emerging Trends in Psychological Practice in Long-Term Care. (Has been copublished simultaneously as Clinical Gerontologist, 25, ¾) 2002. New York: The Haworth Press, 2002, 303 pp., $39.95 softcover; $69.95 hardcover. Oberlander, Jonathan. The Political Life of Medicare. Chicago: The University of Chicago Press, 2003, 224 pp., $16.00 softcover. Ottaway, Susannah R., Botelho, L. A., & Kittredge, Katharine (eds.). Power and Poverty: Old Age in the Pre-Industrial Past. Westport, CT: Greenwood Publishing Group, 2002, 312 pp. $64.95 hardcover. Overall, Christine. Aging, Death, and Human Longevity: A Philosophical Inquiry. Berkeley and Los Angeles: University of California Press, 2003, 276 pp., $44.95 hardcover. Powers, Bethel Ann. Nursing Home Ethics: Everyday Issues Affecting Residents With Dementia. New York: Springer Publishing Co, 2003, 240 pp., $35.95 softcover. Radetzki, Marcus, Radetzki, Marian & Juth, Niklas. Genes and Insurance: Ethical, Legal and Economic Issues. New York: Cambridge University Press, 2003, 170 pp., $60.00 hardcover. Radin, Lisa, & Radin, Gary (eds.). What If It’s Not Alzheimer’s? A Caregiver’s Guide to Dementia. Amherst, NY: Prometheus Books, 2003, 346 pp., $22.00 softcover. Vitt, Lois A. (ed.). Encyclopedia of Retirement and Finance. Westport, CT: Greenwood Publishing Group, 2003, 869 pp., $149.95 hardcover. Walter, Jennifer K., & Klein, Eran P. (eds.). The Story of Bioethics: From Seminal Works to Contemporary Explorations. Washington, DC: Georgetown University Press, 2003, 264 pp., $29.95 softcover.

Index Activities of daily living (ADLs), 42, 117, Administrative laws, 93–96, 100, 102–03 Advance directives, 18, 96–98 Agency, 9 Alzheimer’s disease, 31, 32, 34, 46, 63– 64, 66, 68, 76 American Medical Association, 100–02 Appreciation, 42, 44, 48–56, 67–78 Ashcroft, John, 101–02 Autonomy, 4, 32–33, 85 Behavioral problems, 18–19, 27 Beneficence, 26 Brief Symptom Inventory, 46 Canadian Psychiatric Association, 33 Capacimeter, 44 Capacity: elements, 27–28, 33, 64–65, 67 evaluation of, xi-xii, 28–35, 39–58, 63– 79, 85–86 financial, 26 generally, 18, 26 legal standards, xi-xii, 26–27, 42–45, 84 living arrangements, xiii, 25–35 medical, 26, 31, 39–58, 63–79 Capacity to Consent to Treatment Instrument (CCTI), 29, 47–57, 65–78 CARIE, 5–23 Choice, evidencing, 9, 28, 42, 44, 48–57, 67–78 Chronic illnesses, 7 Civil liability, 88–89, 93, 96–97, 100, 102–03

Clinical Dementia Rating Scale, 28, 31 Code of Hammurabi, 93 Community, dwelling in, xiii, 4, 25–35 Competence, xi, 26, 57, 68–75 Confidence, 19–20 Confidentiality, 16 Conflicts of interest, 40 Conservatorship, 26. See also Guardianship. Controlled Substances Act, 101 Criminal liability, 30, 93–96, 98–103 Cultural values, 4 Day care, 119 Defensive medicine. See Legal anxieties. Dementia, 7, 32, 40, 45, 63–79 Dementia Rating Scale, 69, 74–75, 77 Dependency, 6 Depression, 46, 73–74 Diogene’s syndrome, 25 Discipline, professional, 94–96, 99 Double-effect principle, 99–100 Drug Enforcement Agency, 101 Durable power of attorney. See Proxy directive. Education: role in capacity, 70 professional, 3–22, 88 Elder support ratio, 110 Eldercare, 109–22 Emergency Medical Treatment and Active Labor Act (EMTALA), 103 Empathy, 13 136

137

Index Employees, as informal caregivers, xiiixiv, 109–22 End-of-life care, xiii, 18–19, 35, 93–103 Ethics committees, 43 Evidence, xi, 31 Executive Interview (EXIT), 31–33, 74–78 Executive Function, 31–33, 35, 74–78

Legal anxieties, xiii, 87, 88–89, 94, 96–99, 102 Lewy bodies, 66, 69 Licensure, 93. See also Discipline, professional. Life story. See Narrative. Living wills, 96

Family role, xiii-xiv, 4, 27, 85, 87, 109–22 Filial responsibility. See Family role. Forensic evidence, xi Functional abilities and deficits, 42–43, 86 Furrow, Barry, 102–03

MacArthur Competence Assessment Tool (MCAT), 29–30, 47–57 Malpractice, 95, 97, 102–03. See also Civil liability. McMaster process, 30–31 Memory, 13, 28, 32, 46, 74–75, 77 Mental illness, 40 Mini-Mental Status Exam, 28–29, 31 Money management services, 89

Guardianship, xiii, 83–90 alternatives to, 89 Health Insurance Portability and Accountability Act (HIPAA), 16 Home care, 109–22 Hopemont Capacity Assessment Instrument, 47–57 Hopkins Competency Assessment Test, 28–29, 31 Hospitals, 96 Huntington’s disease, 32 IDEAS for Ethical Decision-Making in Long-Term Care, 8, 14–22 Informal caregiving, 109–22 Informed consent, 31, 39–58, 63, 93–94, 103 Institutional Review Board (IRB), 46 Instrumental activities of daily living (IADLs), 75 Instruments, capacity evaluation, xii, xiii, 29–35, 39–58, 68–79, 86, 88. See also Specific tests. Insurance, liability, 102 Intentionality, 9, 33 International, xiv Israel, xiv, 109–22 Judicial involvement. See Guardianship. Labor unions, 120 Labor law113–22

Narrative, 3, 6–13, 15 Neglect, 25–26 Negligence, 93–94, 103 Negotiated consent, 4 Neuropsychological predictors, 71–78 Nurses, 22, 99 Nursing homes, 3–22, 28 Nursing Care Act, 113 Omnibus Budget Reconciliation Act (OBRA), 103 Oregon Death With Dignity Act, 101–02 Paid Sick Leave Act, 114, 115–18 Pain control, medical, 98–102 Pain and suffering, emotional, 6–8, 19, 99 Pain Relief Promotion Act, 101 Parens patriae doctrine, 26 Parkinson’s disease, xiii, 7, 32, 46, 63–79 Patient Self-Determination Act (PSDA), 96 Personhood, 6–13 Physicians, 5–6, 8, 34–35, 34–35, 86, 93– 103 Principlism, 5, 23 Promises to Keep program, 5–22 Proxy directives, 96 Psychiatrists, 8 Psychologists, 8, 71–78, 86

Index

138 Reasoning, 42, 44, 48–57, 67–78 Religion, 121, 41 Research participation, 45–48, 69–70 Respirator, 96 Resources, limited, 18 Resuscitation, 97–98 Risk management. See Legal anxieties. Risks, 7, 34–35

Telephone Interview for Cognitive Status, 46 Testimony. See Evidence. Trail Making Test, 31, 74, 77

Safety, 6, 19, 26, 34–35 Self-awareness, 8–9 Self-identity, 11–13 Severance Compensation Act, 114–17 Socio-cultural context, 4, 40–41 Substance abuse, 46 Suicide, assisted, 98–102 Surrogate decision making, 4, 18, 41, 85, 87, 97 Supranuclear palsy, 32

Vascular dementia, 46 Voluntariness, 33

Understanding, 28, 33, 42, 44, 48–55, 67– 78 Unbefriended persons, 13

Wilson’s disease, 32 Wingspan conference, 83–84 Wingspread conference, 83 Witnesses. See Evidence. Word Recall Test, 31 Work. See employees.