TAKING

CARE

TAKING CARE 

Ethical Caregiving 

in Our Aging Society

The President’s Council on Bioethics 

Washington, D.C. 

www.bioethics.gov 

September 2005 

v

Contents 

LETTER OF TRANSMITTAL TO THE PRESIDENT ix 

MEMBERS OF THE PRESIDENT’S COUNCIL ON BIOETHICS xiii 

COUNCIL STAFF AND CONSULTANTS xv 

PREFACE xvii 

1. DILEMMAS OF AN AGING SOCIETY 1

I. Aging and Contemporary Society 4 

 A. The Aging Society 5

 B. The Trajectory of Chronic Illness and Death 11 

 C. The Availability of Caregivers 15

1. The Present Realities of Caregiving 16

 2. The Future Availability of Caregivers 17 

 3. A Caregiving Crisis? 19

II. Individual Aging and the Lifecycle 21 

 A. Biological Nature and Environment 24 

 B. The Presence or Absence of Loved Ones 25

 C. Wealth and Poverty 26

 D. Vocation and Avocation 27

 E. Male or Female 28 

 F. Mind and Body 29

 G. A Person’s View of Death 31

 H. Conclusion: Modernity and the Lifecycle 32

III. Dementia and the Human Person 34 

 A. The Phases of Alzheimer’s Disease 36

 B. Cause and Remedy 38

 C. Alzheimer’s Disease and Human Experience 41

IV. Aging and the Common Good 46 

 Endnotes 49
vi │ TAKING CARE

2. THE LIMITED WISDOM OF ADVANCE DIRECTIVES 53

I. Defining Key Terms 56

 II. The Emergence of Advance Directives in Policy and Law 58

 III. The Principles and Aims of Advance Instruction Directives 67

 IV. Living Wills in Practice: Evaluating Success and Failure 70

 V. Conceptual and Moral Limits of Choosing in Advance 80 

 A. The Problem of “Informed Consent” 81 

 B. Prior Wishes and Present Welfare 82

 C. Personal Identity and the Obligations of Care 85

 VI. Beyond Living Wills: The Wisdom and Limits of Proxy 

 Directives and Advance Care Planning 89

 Endnotes 91

3. THE ETHICS OF CAREGIVING: GENERAL PRINCIPLES 95

I. Defining the Subject 100 

 II. Human Contexts of Caregiving: Life, Death, and 

 Modern Medicine 102

 A. The Worth of Human Lives 103 

 B. The Meaning of Human Deaths 108 

 C. Modern Medicine 113 

III. The Ethics of Caregiving 118 

 A. The Goals of Caregiving 120

 1. Respect for the Person’s Prior Wishes and Ideals 120

 2. The Well-Being of the Family 123

 3. The Good of Society 125

 4. Best Care for the Person Now Here 128

 B. Moral Guidelines 130

 1. Ordinary and Extraordinary Care 131

 2. Acts of Commission and Acts of Omission 133

a. Never beginning treatment versus 

ceasing/removing a treatment-in- 

 process 135

 b. Active killing versus letting die 136

 3. Doing and Accomplishing: 

 Motives, Intended Deeds, and Goals 140

 4. Burdens of Treatment and Burdens of Disease 144

 C. Moral Boundaries 147

 Endnotes 150
C ONTENTS │ vii

4. ETHICAL CAREGIVING: 

 PRINCIPLE AND PRUDENCE IN HARD CASES 151 

I. Deciding for Oneself and Deciding for Others 154

 II. The Significance of Age-Related Dementia and Its Stages 164

 III. The Well-Being of the Patient 171

 A. Dementia and Well-Being 172

B. The Nature of Treatment and the Trajectory of Illness 174

C. Three Complex Cases 177

 1. The Relevance of Subjective Well-Being 178

 2. Burdensome Treatment and Patient Resistance 182

 3. The Trajectory of Death 187

 IV. The Significance of Living Wills 193

 V. The Well-Being of Caregivers 197

Endnotes 202

5. CONCLUSIONS AND RECOMMENDATIONS 203 

I. Life, Health, and Death in Our Aging Society 205 

 A. Our Unprecedented Situation 205

1. The New Demography 205

2. Healthy Old Age 205

3. Debility and Dementia, Death and Dying 206

4. The Availability of Caregivers 207

 B. Our Uncertain Future 207

 C. Ethical Commitments and Wise Public Policy 208

II. Conclusions and Recommendations 210

 A. Individual Caregiving 210

B. Procedures and Policies: Ethics Committees, 

 Professional Societies, Judges, and Legislators 213

C. Presidential Commission on Aging, Dementia, and 

 Long-Term Care 218

Appendix: Personal Statements 225 

 Rebecca Dresser 226

 Alfonso Gómez-Lobo 228

 Janet D. Rowley 229 
viii │ TAKING CARE

Glossary of Terms 231 

THEMATIC BIBLIOGRAPHY 235 

Resources for professionals, the elderly, and caregivers. 

 Table of Contents 235 

 Thematic Bibliography 237 

Advance Directives 237

Alzheimer’s Disease 242

Caregiving 249

Death & Dying 260 

Dementias other than Alzheimer’s 268

Demographics 269

Economic Matters 275

Ethical Reflections 275

Intergenerational Readings 281

Longevity 281

Literary Sources 282

Miscellaneous 283

Public Policy 284

Sources of Information & Support 286
ix

LETTER OF TRANSMITTAL TO

THE PRESIDENT OF THE UNITED STATES

The President’s Council on Bioethics 

1801 Pennsylvania Avenue, N.W., Suite 700 

Washington, D.C. 20006 

September 28, 2005 

The President 

The White House 

Washington, D.C. 

Dear Mr. President: 

I am pleased to present to you Taking Care: Ethical Caregiving in 

Our Aging Society, a report of the President’s Council on Bioethics. It 

seeks to gain attention for a burgeoning social problem and to offer 

ethical guidance regarding the care of our elders who can no longer 

care for themselves. 

American society is aging—dramatically, rapidly, and largely 

well. More and more people are living healthily into their seventies 

and eighties, many well into their nineties. With birth rates down, 

with the baby boomers approaching retirement, we are on the 

threshold of the first-ever “mass geriatric society.” The fastest 

growing segment of our population is already the group over 85. 

Historically speaking, it is the best of times to be old. 

Yet the blessings of greater longevity are bringing new social 

challenges. Although people are living healthier longer, many are 

also living long enough to suffer serious age-related chronic 

illnesses, including dementia. Alzheimer’s disease now afflicts more 

than four million Americans, and the number is expected to triple 

before mid-century. Already by far the most common trajectory 

toward death is a lengthy period of debility, frailty, and dementia 

lasting not months but years. Already millions of American families 

are struggling nobly to provide steady and demanding long-term 

care for their incapacitated loved ones, often with little respite or 

communal support, usually for many years. Yet precisely as the 

need for caregiving rises greatly, the number of available 
x │ TAKING CARE

caregivers—both professional and volunteer—is dwindling. We 

appear to be on the threshold of a crisis in long-term care. 

As a society, we have not yet faced up to this difficulty, 

especially in its human dimensions. And the popular legal 

instruments that we are being encouraged to employ to avoid the 

problem will fall short of what we need as individuals. As this 

report points out in great detail, living wills, drafted years in 

advance, are not the answer. They simply cannot substitute for 

reliable and responsible caregivers on the spot, devoted to the 

welfare of the incapacitated person here and now. Even worse is 

the deadly “solution” of legalizing assisted suicide and euthanasia, 

advocates for which are again active in several state legislatures. 

Caring wholeheartedly for a frail patient or a disabled loved one is 

incompatible with thinking that engineering their death is an 

acceptable “therapeutic option.” Betrayal and abandonment of the 

elderly can never be part of a decent and compassionate society, 

one devoted to the equal worth and dignity of every human life, 

from start to finish, regardless of personal strengths, weaknesses, or 

disabilities. 

In addition to calling attention to the larger social issues of 

long-term care, this report therefore also tries to articulate the goals 

and principles of ethical caregiving for persons no longer able to 

care for themselves. We emphasize both the singular importance of 

seeking to serve the life the patient still has and the moral necessity 

of never seeking a person’s death as a means of relieving his 

suffering. At the same time, we emphasize also that serving the life 

the patient still has does not oblige us always to elect life-sustaining 

treatments, when those interventions impose undue additional 

burdens on that life or interfere with the comfortable death of a 

person irretrievably dying. Even when the doctor’s black bag of 

remedies is empty, comfort and care remain inviolable duties. 

If our elderly are to be well cared for and if family caregivers 

are to be able to care well, caregiving needs to be supported by our 

civic and faith-based communities but also with the help and 

encouragement of government. Yet as we bend our efforts in 

support of the elderly, we can ill afford to neglect the needs of the 

young, who, unlike the old, have no organized voice to speak up for 

their needs. We must at all costs avoid a conflict between the 

generations over scarce resources. 
C ONTENTS │ xi

To help us think through these very complex issues, we need 

sustained research, hard thinking, and a creative search for modest 

reforms that could make a big difference. And we need leadership 

at the highest level. Therefore, among our recommendations, we 

call for a Presidential Commission on Aging, Dementia, and LongTerm Care, to focus the nation’s attention and to carry forward this 

work. Any approach our society takes must attend to the ethical and 

humanistic dimensions of our situation, not only the economic and 

institutional ones. For we will be judged as a people by our 

willingness to stand by one another, even as the flame of life flickers 

and fades in those who have brought us here and to whom we owe 

so much. 

Mr. President, allow me once again to thank you, on behalf of 

my Council colleagues and our fine staff, for this opportunity to 

offer you and the American people our assistance in promoting a 

future in which human well-being will be served by science and 

medicine, human beings will be respected at every stage of life, and 

human dignity will always be upheld and preserved. 

 Sincerely, 

 

 Leon R. Kass, M.D. 

Chairman

xiii

MEMBERS OF

THE PRESIDENT’S COUNCIL ON BIOETHICS

LEON R. KASS, M.D., PH.D., Chairman. 

Addie Clark Harding Professor, The College and the Committee on 

Social Thought, University of Chicago. Hertog Fellow, American 

Enterprise Institute. 

BENJAMIN S. CARSON, SR., M.D.

Professor and Director of Pediatric Neurosurgery, Johns Hopkins 

Medical Institutions. 

REBECCA S. DRESSER, J.D., M.S. 

Daniel Noyes Kirby Professor of Law and Professor of Ethics in 

Medicine, Washington University, St. Louis. 

DANIEL W. FOSTER, M.D. 

Professor of Internal Medicine, John Denis McGarry, Ph.D. 

Distinguished Chair in Diabetes and Metabolic Research, University of 

Texas Southwestern Medical School. 

FRANCIS FUKUYAMA, PH.D. 

Bernard L. Schwartz Professor of International Political Economy, Paul 

H. Nitze School of Advanced International Studies, Johns Hopkins 

University. 

MICHAEL S. GAZZANIGA, PH.D. 

David T. McLaughlin Distinguished University Professor, Professor of 

Psychological and Brain Sciences, Director of the Center for Cognitive 

Neuroscience, Dartmouth College. 

ROBERT P. GEORGE, J.D., D.PHIL. McCormick Professor of Jurisprudence, Director of the James Madison 

Program in American Ideals and Institutions, Princeton University. 

MARY ANN GLENDON, J.D., M. COMP. L. 

Learned Hand Professor of Law, Harvard University. 

ALFONSO GÓMEZ-LOBO, DR. PHIL. Ryan Family Professor of Metaphysics and Moral Philosophy, 

Georgetown University. 
xiv │ TAKING CARE

WILLIAM B. HURLBUT, M.D. 

Consulting Professor in Human Biology, Stanford University. 

CHARLES KRAUTHAMMER, M.D. 

Syndicated Columnist. 

PETER A. LAWLER, PH.D.

Chairman of the Department of Government and International Studies, 

Dana Professor of Government, Berry College. 

PAUL MCHUGH, M.D. 

University Distinguished Service Professor of Psychiatry, Johns 

Hopkins School of Medicine. Professor, Department of Mental Health, 

Bloomberg School of Public Health, Johns Hopkins University. 

GILBERT C. MEILAENDER, PH.D. 

Phyllis & Richard Duesenberg Chair in Christian Ethics, Valparaiso 

University. 

JANET D. ROWLEY, M.D. 

Blum-Riese Distinguished Service Professor of Medicine, Molecular 

Genetics and Cell Biology, and Human Genetics, Pritzker School of 

Medicine, University of Chicago. 

MICHAEL J. SANDEL, D.PHIL. Anne T. and Robert M. Bass Professor of Government, 

Harvard University.

DIANA J. SCHAUB, PH.D. 

Professor and Chairman of the Department of Political Science, Loyola 

College in Maryland. 
xv

COUNCIL STAFF AND CONSULTANTS

Richard Roblin, Ph.D. 

Acting Executive Director 

Tonia Busse Rita Koganzon

Staff Assistant Intern 

Eric Cohen Yuval Levin

Senior Research Consultant former 

 Acting Executive Director

Judith E. Crawford Michael Murray

Administrative Director Intern 

Michael Fragoso Adam Schulman, Ph.D.

Intern Senior Research Consultant 

Diane M. Gianelli O. Carter Snead, Esq.

Director of Communications Consultant and former 

 General Counsel 

Ginger Gruters Audrea R. Vann

Staff Assistant Information Technology 

 Specialist

Laura Harmon, Esq. Bethany Warner

Senior Aide to the Chairman Receptionist/Staff Assistant 

Emily Jones Lee L. Zwanziger, Ph.D. 

Executive Administrator Senior Research Analyst 

xvii 

Preface 

Taking Care: Ethical Caregiving in Our Aging Society is a report of 

the President’s Council on Bioethics, which was created by 

President George W. Bush on November 28, 2001 by means of 

Executive Order 13237 and renewed on September 23, 2003 by 

means of Executive Order 13316. 

The Council’s purpose is to advise the President on bioethical 

issues related to advances in biomedical science and technology. In 

connection with its advisory role, the mission of the Council 

includes the following functions: 

• To undertake fundamental inquiry into the human and 

moral significance of developments in biomedical and 

behavioral science and technology. 

• To explore specific ethical and policy questions related to 

these developments. 

• To provide a forum for a national discussion of bioethical 

issues. 

• To facilitate a greater understanding of bioethical issues. 

Among the several topics mentioned in the executive order as 

deserving of possible Council attention are ethical issues 

surrounding the end of life. Several of those issues are the subject 

of this report. 

Taking Care addresses the ethical challenges of caregiving in our 

rapidly aging society, with special attention to the care of people 

with dementia. Our purpose is to provide a humanly rich account 

of the caregiving dilemmas—social, familial, and personal—and to 

offer some important ethical guidelines for the care of persons who 

can no longer care for themselves. 

There is no question that we are on the threshold of a “mass 

geriatric society,” a society of more long-lived individuals than ever 

before in human history. For this great gift of longer and healthier 
xviii │ TAKING CARE

life for ourselves and our loved ones we are, and should be, 

enormously grateful. No sensible person would wish to return us to 

a time—not that long ago—in which the diagnosis of uncontrolled 

diabetes meant certain death within a month or two, in which 

women commonly died giving birth, children often died of 

smallpox and polio, and nothing could be done for tuberculosis, 

syphilis, and other deadly infectious diseases. Old age today is—for 

the most part and for most people—much better than it used to be: 

millions of Americans are staying healthy and active well into their 

seventies and eighties, and some deep into their nineties. By 

historical standards, it is a wonderful time to be old. 

At the same time, however, there are good reasons to be 

concerned about the human and moral shape that a mass geriatric 

society will take, especially if the “price” many people pay for the 

gift of added years of healthier life is a period of protracted debility, 

dementia, and dependence stacked up at the end before they 

eventually die. Such a reshaping of the lifecycle will create 

enormous challenges for nearly every family and for the entire 

society. The economic challenges facing Social Security, Medicare, 

and Medicaid are more or less well known. A looming crisis of 

long-term care for the incapacitated has received less attention, 

partly because we prefer to avert our gaze, largely because we lack 

an adequate human and ethical understanding of this issue. 

Socially, we have preferred to place our hopes in programs that 

promote healthy aging and in scientific research seeking remedies 

for incapacitating diseases like Alzheimer’s. Insofar as we do 

approach the topic of long-term care, we worry mainly about 

numbers and logistics: How many will need it? Who will provide it? 

How will we pay for it? The ethical questions of what the young 

owe the old, what the old owe the young, and what we all owe each 

other do not get mentioned. Neither do the questions of social 

support for the caregivers or a good end of life for us all. 

In the meantime, millions of American families, more each 

decade, already face the difficult task of caring for frail and 

incapacitated elders, often entirely on their own with very little 

social support. And millions more, “the worried well,” live 

anxiously, dreading the prospect that the curse of untreatable 

dementia and disability will descend on them before a cure arrives, 

to ruin their final years, deplete their savings, and burden their 

loved ones with the obligation to care for them. Their generalized 
 P REFACE │xix 

anxiety often focuses on end-of-life decision-making, commonly 

expressed in a fear that others will impose life-sustaining treatments 

on them when they are too demented to choose for themselves or 

too diminished to benefit from the intervention. 

Largely in response to these anxieties of the worried well, our 

society has embraced the idea of advance directives, especially living 

wills, in which individuals try to determine in advance how they 

wish to be treated should they become incapacitated. This approach 

to the dilemmas of caregiving gives major ethical weight to personal 

autonomy and choice and personal pride in self-sufficiency. But in 

so doing, it deliberately ignores the truth of human interdependence 

and of our unavoidable need for human presence and care, especially 

when we can no longer take care of ourselves. The moral emphasis on 

choosing in advance needs to be replaced with a moral emphasis on 

caring in the present. The moral emphasis on independence needs 

to be supplemented with a moral commitment to serve the lives of 

those we love, regardless of their disabilities. A culture of caregiving 

requires moral support from an ethics of care. 

In the first chapter of this report (“Dilemmas of an Aging 

Society”), we offer a sociological overview of aging in America and 

inquire into the special challenges of aging well in modern times. 

We pay special attention to the growing prevalence of Alzheimer’s 

disease and other forms of dementia, and the implications this has 

for caregivers and the larger society. Although this chapter offers 

no proposed ethical guidelines, it presents a human picture that 

should inform policymakers in their efforts to encourage, support, 

and sustain dignified long-term care for the American people, and 

in settings that preserve the humanity of those who receive care and 

those who give it. 

In the second chapter (“The Limited Wisdom of Advance 

Directives”), moving from the social picture to the personal one, we 

offer a practical and ethical critique of relying on living wills as the 

best and most human approach to dealing with the problems of 

incapacitated persons. At the same time, we endorse both the 

appointment of surrogate decisionmakers and the practice of 

advance care planning that encourages families to discuss and plan 

together how best to care for their loved ones. 

In the third and fourth chapters, moving from critique to 

positive analysis and guidelines, we offer a constructive inquiry into 

ethical caregiving. In the former (“The Ethics of Caregiving: 
xx │ TAKING CARE

General Principles”), we explore the general ethical principles and 

moral boundaries involved, emphasizing the importance of seeking 

the present welfare of the patient and of serving the life that the 

person still has, regardless of disability and frailty. In the latter 

(“Ethical Caregiving: Principle and Prudence in Hard Cases”), we 

show—through analyses of a series of very difficult clinical cases—

how principle and prudence can collaborate in finding the best care 

possible for persons entrusted to our care. In both chapters we 

acknowledge how hard it can be to provide constant care for those 

who can no longer speak for or stand by themselves; and we 

recognize how painful it can be to see loved ones lose their most 

treasured human capacities, including the capacity to recognize the 

people with whom they have long shared a life. Yet before such loss 

and in the face of such difficulty, loving care and principled 

prudence are all the more required, if we are to answer the call 

never to betray or abandon, always to serve as best we can. 

Our conclusions and recommendations are presented in a final 

chapter. 

Taken as a whole, our report aims to enrich public discussions 

about aging, dementia, and caregiving, to encourage policymakers to 

take up these complicated yet urgent issues, and to offer ethical 

guidance for caregivers—professional and familial—who struggle to 

provide for those entrusted to their care. We also hope to 

encourage policymakers in this area to take into account the 

humanistic and ethical aspects of aging and caregiving, not only the 

economic and institutional ones. Staying human in our aging society 

depends on it. 

* * * * * 

The Council has been at work on this report since April 2004. 

All told, twenty-one sessions, of ninety minutes each, were devoted 

to this topic at public meetings. Transcripts are available online at 

www.bioethics.gov. The present report draws directly on those 

transcripts, as well as on writings of Council members, staff, and 

invited consultants. It is also informed by much previously 

published literature on this topic (see Thematic Bibliography, in the 

Appendix). The Council has benefited greatly from presentations by 

Robert Binstock, Robert Burt, Daniel Callahan, Thomas Cole, 

Charles Fahey, Robert Friedland, Geri Hall, Herbert Hendin, 
 P REFACE │xxi 

Joanne Lynn, Peter Rabins, Greg Sachs, Carl Schneider, Dennis 

Selkoe, David Shenk, and John Wennberg, and from the wise 

advice of our former colleague, William F. May. We are grateful also 

to Drs. Callahan, Cole, Lynn, and May for their critical reviews of 

earlier drafts of the report, to Adam Wolfson for his careful 

editorial review of the penultimate draft, and to Laura Harmon for 

her outstanding work in preparing the report for publication. The 

Council also expresses its special gratitude to our senior consultant, 

Eric Cohen, for his extraordinary vision, thoughtful analysis, and 

literate drafting. 

 LEON R. KASS, M.D. 

 Chairman 

1 

Dilemmas of an Aging Society 

Modern medical science has been an unrivaled benefactor of 

humankind—providing cures for terrible diseases, palliative care 

for the sick and suffering, and longer and healthier lives for the 

vast majority of us. Most citizens in developed countries can now 

expect to live into their seventies and eighties, with many living 

into their nineties and beyond. Not only are people living longer, 

but they are staying healthier longer, with a real chance to enjoy 

their “golden years.” Even some of the chronic disabilities of old 

age are in decline,1 as medical science and improved risk management continue to succeed in extending the disability-free 

stage of the natural life span. An ever-growing cohort of people 

enjoys today a period of true retirement, when the obligations of 

work and raising children are past, when body and mind remain 

in health, and when there’s still time to pursue or renew the avocations of life. 

Yet these great accomplishments have also brought new 

challenges. No one, of course, would want to “turn the clock 

back,” but the problems accompanying medical progress are real 

as well as perplexing. Consider that around the world—and especially in the United States and other advanced industrial democracies—there is increasing concern about the “graying of the 

population,” the “aging of society,” and the “retirement of the 

baby boomers.” This concern takes many forms—economic, 

ethical, social, and civic—and it promises to loom large in our 

private lives and public debates. Many of the questions center 

around caregiving: Who will need it? Who will do it? Who will 

pay for it? And perhaps most importantly, what kind of care is 

owed to those at the end of life? 

When thinking about caregiving, we have concerns about 

pension insecurity, rising costs of health care, shortages of available caregivers, and the insufficient number of good nursing 
2 │ TAKING CARE

homes. We have concerns about the potential neglect or abandonment of the elderly, and the possibility of welcoming euthanasia or assisted suicide as ways to “solve the problem” of lingering old age. Many of us face decisions about forgoing careers in 

order to act as caregivers, or spending less time with young children in order to care for aged parents, or using funds set aside 

for a daughter’s college tuition in order to pay for a father’s nursing home. In short, we worry about whether we can afford to 

care, whether we will be willing and able to care, and what we 

must sacrifice in order to care for the elderly. And many of us in 

the middle of life, thinking about growing older ourselves, fear 

the loss of our powers, the deprivations and loneliness that often 

accompany old age, and the prospect of being a burden on those 

we love most. 

Thus, while people are living healthier into old age and doing 

so on a mass scale, there remain many difficulties, both psychic 

and physical, that eventually come with growing old. Precisely 

because people are living longer, many are living long enough to 

suffer age-related degenerative diseases like Alzheimer’s and 

Parkinson’s—diseases that involve long-term decline and thus the 

need for long-term care. And precisely because many individuals 

have taken advantage of modern freedom’s opportunities for 

education, careers, and geographic mobility, many elderly persons 

will live in greater isolation from loved ones, separated from children and grandchildren who have settled elsewhere or whose 

lives are defined primarily by work and school. Smaller and less 

stable families will likely compound these problems, as the burdens of caregiving fall on one or two adult children, who, in 

many cases, are called upon to care for parents who did not always care well for them. And many among the growing population of childless elderly will have no relatives at all to look after 

them. Taken together, the need for family caregivers will almost 

certainly increase while the availability of family caregivers may 

only decline. And the same difficult choices and trade-offs faced 

by individuals and families will confront society as a whole: the 

needs and plight of the elderly will only seem more urgent; the 

costs of medical and long-term care will only increase; and the 

need to balance the obligations of caregiving with other civic and 
DILEMMAS OF AN A GING S OCIETY │ 3

human goods will only seem more difficult, even as America becomes wealthier. 

Before these difficulties we are hardly resourceless. With our 

science and medicine, we are working to combat the ailments and 

limitations that aging brings, seeking to reduce or remove the 

disabilities that longevity has until now brought with it. We also 

look to insurance plans and public policies to make aging affordable and secure, whether by increasing Medicare benefits or creating retirement savings accounts or providing private long-term 

care insurance. And we use civil rights law to battle against “age 

discrimination,” to ensure that old people are not treated as second-class citizens in employment. All of these approaches and 

efforts are necessary and welcome. 

But they are also limited, and limited in principle. For senescence is best understood not as a problem but as an inescapable 

condition—as part of what it means to be human and to live in a 

human society. Absent awareness of this fact, we will be tempted 

to believe that medicine, social policy, economics, or law can 

solve the problems of aging, or that technological and social 

progress can make the dilemmas of growing old and approaching death less serious than they always were and always will be. 

Or else, preferring denial, we will be tempted to live as if we will 

be young forever, or as if the elderly among us will take care of 

themselves, or as if the seeming “pointlessness” of the end of 

life means that neglecting the elderly is nothing to worry about. 

In the end, however, aging and dying—even with the progress we can still reasonably expect from medicine and social 

change—will not yield to either the genius of the manager or the 

utopian hopes of those who pretend that, by change of attitude, 

old age is somehow avoidable. Good public policy matters profoundly in this area, but even the best policies will never make 

aging, caregiving, and dying easy. As individuals and as a society, 

we will need deeper wisdom and resources of character if we are 

going to age well in the years ahead. We will need greater ethical 

reflection on what the young owe the old, what the old owe the 

young, and what we all owe one another. And we will need prudence in designing effective public policies and in making loving 

decisions at the bedside, so that we accept the limits of modern 
4 │ TAKING CARE

medicine and economic resources while never abandoning conscientious and compassionate human care. 

The aim of this chapter is to contribute, in a concrete if 

necessarily limited way, to our understanding of the social question of what the “graying of the population” means for our society and the human question of what aging and dementia tell us 

about ourselves, as finite creatures in need of care. 

The chapter has three major parts: Starting from a social 

perspective, we first present an overview of our aging society, 

looking at certain demographic, medical, and sociological trends; 

we try to understand what is novel about our current situation, 

and why we might be facing a “crisis” in long-term care. Second, 

we look at individual aging, to understand what it means to age 

well, what it means today to grow up and grow old within the 

cycle of the generations. Finally, we look at the special challenges 

and lived experiences of age-related dementia, a debility that in 

the coming decades will only become more common as people 

live regularly into their eighties and beyond. Our purpose here is 

to diagnose the dilemmas now before us, so that policymakers 

and civic leaders can seek to ameliorate some of the problems 

ahead and avoid the worst kinds of miseries and abuses. But by 

reflecting on the character of aging itself, including those aspects 

that cannot be “solved” but simply confronted and endured, we 

also want to insist that there is an inescapable need for care and 

caregiving, to be offered with as much equanimity, virtue, and 

mutual support as individuals, families, and communities can 

muster. 

I. AGING AND CONTEMPORARY SOCIETY 

How we care for the dependent elderly will test whether modern 

life has not only made things better for us but also made us better human beings, more willing to accept the obligations to care 

and more able to cope with the burdens of caregiving. Put simply: Can a society that values self-reliance, personal freedom, and 

careerism reconcile itself to the realities of dependence, diminished autonomy, and responsibility for others? To consider this 
DILEMMAS OF AN A GING S OCIETY │ 5

broad question, we must first examine some sociological and 

demographic facts. 

A. The Aging Society 

In the years ahead, the age structure of most advanced industrial 

societies will be unlike anything previously seen in human history, with both the average age of the population and the absolute number of old people increasing dramatically. To think responsibly about the social and ethical challenges of aging and 

caregiving, we need some sense of this new demographic picture 

and what it will mean for crucial social institutions and ordinary 

families. Although our focus is on the United States, these same 

trends are visible—and often even more dramatic—in Europe 

and Japan. 

Because demography employs a series of classifications, we 

need first to examine how we tend to classify people as “old.” In 

America, we still look to age 65 as the cut-off between middle 

age and old age, between work and retirement, between income 

and pensions, between private health insurance and public health 

care. The place of 65 in the public imagination and in public policy is, however, largely a social construct. The designation of 65 

as the age of retirement deserving of social support traces back 

to a decision by the 19th-century Prussian statesman Otto von 

Bismarck, who thought it unlikely that many people would live 

beyond this age to become burdens on the state. Our own national system of social security, put in place in 1935, adopted the 

same age, also with little expectation of many people living much 

beyond this point. 

Today, as we are all well aware, the situation is quite different, and our understanding of what it means to be “old” has become more nuanced. There are the “young old,” who despite 

having reached the official retirement age of 65 continue to live 

vigorous and productive lives. Then there are the “old old,” who 

have perhaps begun to slow down but still lead lives of relative 

health and activity. And, finally, we now speak also of the “oldest 

old,” or those who are 85 years and over, a group that tends to 

be mainly or wholly dependent for their care on others. These 

new labels and terms are, moreover, less about chronological age 
6 │ TAKING CARE

per se than about a person’s bodily and psychological condition. 

A 65-year-old might be either among the “young old” in his well 

being and activity levels or, because of the afflictions of disease, 

already in experiential terms among the “oldest old.” 

Whatever its limitations, however, the magic number of 65 

still provides a window of understanding into what’s new about 

our condition. Life at 65 today is often different from what it was 

a century or half-century ago. For one thing, living to 65 and beyond is now commonplace, when in the past it was a rare occurrence. During the last century, the average American life expectancy at birth rose from 47 years in 1900 to 77 years and climbing in 2000.2 According to a study published in 2000, 78 percent 

of Americans live past their 65th birthday;3 and this figure is rising, from 69 percent for those born in 1925 to an estimated 80 

percent for those born in 1955.4 Moreover, living at 65 and beyond is usually a much different experience than it used to be. 

There is a much greater likelihood of being relatively healthy, 

with major and potentially deadly diseases (like heart disease or 

kidney disease) under better control and chronic ailments (like 

arthritis or orthopedic problems) better managed through painrelieving medication or joint-replacement surgery. We know 

much more about what it takes to stay healthier longer, and many 

people have the good fortune and good sense to take advantage 

of this knowledge. 

But if the “young-old” are younger than their predecessors, 

the “old-old” and the “oldest old” often pay the delayed price of 

healthier longevity. A very significant and growing number of 

people suffer (or will suffer) years of enfeeblement, disability, 

and dementia, eventually incapable of caring for their own elementary needs. As we take stock of the changing demography of 

American society, therefore, we need to keep both these dimensions of aging in mind: the unchanging and unavoidable decline 

that comes with old age and the fact that being old today usually 

does not mean utter debility. The defining characteristic of our time 

seems to be that we are both younger longer and older longer; we are more 

vigorous at ages that once seemed very old and we are far more 

likely to suffer protracted periods of age-related disability and 
DILEMMAS OF AN A GING S OCIETY │ 7

dependence because we live to ages that few people reached in 

the past.*

However one defines “old age,” there is no question that the 

age structure of American society is changing, the result of increasing longevity, lower birthrates, and the special anomaly 

known as the “baby boom”—the great increase in the birth rate 

between 1946 and 1964 that has produced an unusually large cohort of Americans now between the ages of 40 and 60. These 

factors guarantee that the dramatic shifts in age structure seen in 

the twentieth century will continue through at least the middle of 

the twenty-first century. In the year 1900, there were 3.1 million 

Americans over the age of 65 (or 4.1 percent of the population). 

By mid-century, there were 12.3 million people over 65 (or 8.1 

percent of the population). In 2000, 35.0 million people were 

over 65 (or 12.4 percent of the population), a number that is projected to rise to 71.5 million by 2030 (or 19.6 percent of the 

population) when the youngest baby-boomers have passed age 

65.5 The rising average and median ages in the population are 

due also to fewer births. Not only are the baby boomers aging, 

but they had fewer children than their parents, and at present the 

American birthrate remains low by historic standards (though it 

is significantly higher than most of Europe and Japan and modestly higher than it was in America in the 1970s and 1980s.) 

Moreover, and perhaps more significant for the subject of 

long-term caregiving, the oldest of the old (people age 85 or 

older) are currently the fastest growing segment of the population. In 2004, according to estimates by the U.S. Census Bureau, 

an estimated 4.9 million Americans were age 85 or older.6 That 

number is expected to increase to 6.1 million by 2010 and to 9.6 

million by 2030.7 Over a somewhat longer term, the trends are 

even more startling: Between 2000 and 2050, the U. S. Census 

Bureau expects the population of Americans age 45 to 54 to 

grow moderately from 37 million to 43 million; but, in the same 

period, the population age 55 to 64 will grow from 24 million to 

 

* It is, of course, a leading goal of current medical research to identify risk factors 

for our remaining chronic illnesses and to reduce the disability that afflicts the 

“old-old,” with the ultimate objective of producing a pattern of life that is healthy 

almost to the end. 
8 │ TAKING CARE

42 million; the population age 65 to 74 will nearly double, from 18 

million to 35 million; the population age 75 to 84 will more than 

double, from 12 million to 26 million; and the population age 85 

and above will more than quadruple, from 4 million to 18 million.8 

 (Graphic used by permission of AARP Public Policy Institute. ©) 

At present, roughly one third of Americans will live to age 

85 and beyond, and that fraction is likely only to increase. Yet 

this greater longevity comes with many greater burdens. After 

age 85, only one person in twenty is still fully mobile; and 

roughly half the people over 85 will suffer major cognitive impairment or dementia as part of their final phase of life. At present, according to the Alzheimer’s Association, an estimated 4.5 

million Americans have Alzheimer’s disease; by 2050, the number 

of Americans with Alzheimer’s disease is estimated to range between 11 million and 16 million9—unless a cure or prevention 

Projected Population Age 45+, by Age: 2000-2050
DILEMMAS OF AN A GING S OCIETY │ 9

can be found soon enough to change this grim forecast. (We will 

be discussing such medical efforts, which are not without hope 

of success, below.)*

This changing age structure will obviously have significant 

economic, social, and political effects—though what they are 

cannot be fully predicted in advance. The mass geriatric society 

will test the adequacy of our caregiving institutions (such as nursing homes) and the solvency of our caregiving programs (such as 

Medicare). We can hardly do justice to this complicated set of 

social and policy questions here, but a few salient facts seem 

worth noting, just to paint a picture of some of the changes and 

developments that we can expect in the years ahead: 

• In 2000, only one state (Florida) had a population with at 

least 17 percent of the population aged 65 and older. By 

2030, 44 states will have populations with at least 17 percent of the population aged 65 or older.10

 

• According to a recent estimate, 35 percent of the annual 

federal budget goes to programs benefiting older persons. 

If these programs continue unchanged, this percentage 

will only increase.11

• By the year 2020, it is estimated that nearly 157 million 

Americans will have some form of chronic illness, up 

from 125 million in 2000.12 

• The estimated cost of Alzheimer’s disease to Medicare 

and Medicaid totaled $50 billion in 2000 and is projected 

to be $72 billion in 2010.13 

 

* It bears emphasizing that much could happen to alter these trends. For example, 

increasing obesity and its consequences, widespread industrial pollution, or 

greater vulnerability to global epidemics (avian flu or antibiotic-resistant bacteria) 

might markedly alter all the predictions, giving rise to a different set of medical 

and social challenges than those anticipated in this report. Still, it makes great 

sense to take our bearings from what we know and what seems likely to occur if 

present trends continue. 
10 │ TAKING CARE

In a society with more elderly citizens and fewer younger 

workers, these changes will put ever-greater strain on programs 

like Medicare, Medicaid, and Social Security. When Medicare was 

introduced in the 1960s, only 9 percent (seventeen million) of 

the population was 65 or older, and only 0.5 percent (one million) was older than age 85. By the time the baby-boom generation starts turning 85 in about 2030, Medicare—as it is now constituted—would be paying for the care of an estimated 80 million Americans (22 percent of the population), including 9 million people who are 85 and older, nearly all of them with expensive health care needs. According to projections assuming a 

“middle costs” scenario, Medicare will grow from 2.4 percent of 

GDP today to 8.3 percent in 2050; and Medicare, Medicaid, and 

Social Security will nearly double as a share of the nation’s economy by 2035. Moreover, the desire to expand these programs 

and to add new benefits will only become more powerful just as 

the capacity to pay for them is tested. 

One of the greatest economic and social challenges will be 

funding long-term care—the provision of daily medical and personal assistance to individuals incapable of looking after themselves, ranging from in-home nurses to adult day-care services to 

full-time nursing homes. These services will grow more necessary 

in the years ahead and probably more costly, but they are not at 

present covered under Medicare. Medicaid pays a large percentage of the costs of long-term care for the poor; arguably, it has 

become in large measure a de facto long-term care program, as 

many middle-class people spend down their assets or shift them 

to relatives in order to become eligible for Medicaid. As a result, 

the strains on the system are already great, and getting worse. As 

physician and long-term care specialist Joanne Lynn points out: 

“The services needed during the last few years of life are expensive. In fiscal year 2000, Medicaid paid for 45 percent of the 

$137 billion annual cost of institutional long-term care. The 

Congressional Budget Office forecasts that the cost of long-term 

care, roughly $123 billion in 2000, will reach $207 billion in 2020 

and $346 billion in 2040. These extraordinary costs risk bankrupting state budgets, which currently devote 20 percent of expenditures to Medicaid.”14 One likely response to these rising 

Medicaid costs will be demands to include long-term care cover-
DILEMMAS OF AN A GING S OCIETY │ 11

age as part of Medicare, especially as middle-class persons are 

squeezed between providing for their parents and their children 

and forced either to forgo work to care for their elders at home 

or to pay the rising costs of professional or institutional care. 

This creation of a long-term care benefit would likely make 

Medicare’s existing solvency problems far worse. 

The effects of America’s changing age structure are not limited to the pension or health care systems, important as these are. 

The coming of the mass geriatric society will affect every dimension of human and social life: the culture of the workplace, the 

consumer market, the housing market, and, most deeply, the 

rhythm and character of family life. We will live differently, work 

differently, and perhaps even think differently in a society in 

which the needs of the old become ever more dominant. Our 

politics might change as well, especially if older people increasingly vote their class interests as elderly; in the extreme, there is 

the unwholesome possibility of a “war between the generations,” 

as people insist on securing their own advantage with little regard 

for the intergenerational common good and with no organized 

voice to speak up for the rising generations. 

These broad social changes in how we live will be accompanied by radically new patterns in the end of life. New trajectories 

of illness and death will likely predominate in the coming decades, and new questions will arise about who will care for those 

suffering from chronic disabilities. If we are to understand what 

it means to live in an aging society, we must take up these two 

crucial issues—namely, how we die and who will care. 

B. The Trajectory of Chronic Illness and Death 

In addition to radical changes in the overall age structure of society, a growing percentage of the elderly are living through 

longer periods of dependence and disability, including, and especially, long periods of dementia. This rise in long-term disability 

and dependence is, as already noted, the unintended consequence 

of our success in preventing, curing, or managing the earlier and 

more acute causes of death that once predominated. But there is 

more. These advances have also changed the trajectory of 

chronic illness and—most important—altered the leading causes 
12 │ TAKING CARE

of death. Because we live longer, we die differently; and because 

medicine can better confront the illnesses that would kill us 

quickly, we are far more likely to die after a period of protracted 

physical disability and cognitive impairment. 

In 1900, the usual place of death was at home; in 2000, it 

was the hospital. In 1900, most people died from accidents or 

infections without suffering a long period of disability. In 2000, 

people suffered, on average, two years of severe disability on the 

way to death. Acute causes of death (such as pneumonia, influenza, and septicemia) are in decline; prolonged causes of death 

from age-related degenerative diseases (such as Alzheimer’s, 

Parkinson’s, and emphysema) are on the rise. Already today, as 

Joanne Lynn points out, “Most Americans die with failure of a 

major organ (heart, lungs, kidneys, or liver), dementia, stroke, or 

general frailty of old age. . . . [T]hese conditions lead to long periods of diminished function and involve multiple unpredictable 

and serious exacerbations of symptoms.”15 Living longer also 

means suffering numerous chronic but not deadly conditions—

such as arthritis, hearing and vision loss, dental decay, bowel 

problems, and urinary difficulties. Frailty becomes both more 

extended and more commonplace, which means that “the body’s 

systems have little reserve and small upsets cause cascading 

health problems.”16

A 2003 study by researchers at the Rand Corporation sought 

to explain, organize, and quantify the various “trajectories of 

chronic illness,” in an effort to describe how the character of aging and dying has changed dramatically over the last many decades and to show how unequipped we are for the caregiving challenges ahead. To envision the caregiving needs of elderly people 

who are sick enough to die, the study classified them into the 

three most common groups, using the trajectory of decline over 

time that is characteristic of the major type of disease or disability. 

The first group dies after a short period of evident decline; this is 

the typical course of death from cancer. Many malignancies are, 

of course, curable by surgery, radiation, and chemotherapy. And 

even many people who will die of cancer may be comfortable 

and function well for a substantial period, until the illness becomes overwhelming. Thereafter, the patient’s status deteriorates 
DILEMMAS OF AN A GING S OCIETY │ 13

rapidly, especially in the final weeks and days before death. Death 

usually occurs within a year. Roughly 20 percent of all deaths are now 

of this type. 

The second group dies following several years of increasing 

physical limitations, punctuated by intermittent acute lifethreatening episodes requiring hospitalization and vigorous intervention; this is the typical course of death from chronic cardiac or respiratory failure (for example, coronary artery disease 

or emphysema). Many of these patients are at first little handicapped in daily life. But as the disease progresses, “from time to 

time, some physiological stress overwhelms the body’s reserves 

and leads to a worsening of serious symptoms. Patients survive a 

few such episodes but then die from a complication or exacerbation, often rather suddenly.”17 Roughly 20 percent of all deaths are 

now of this type. 

The third—and already the largest—group dies only after 

prolonged dwindling, usually lasting many years; this is the typical 

course of death from dementia (including Alzheimer’s disease or 

disabling stroke) or generalized frailty of multiple body systems. 

This trajectory toward death is gradual but unrelenting, with 

steady decline, enfeeblement, and growing dependency, often 

lasting a decade or longer. In the end, an overwhelming infection, 

a stroke, or some other insult that a severely weakened body cannot handle becomes the proximate cause of death. Roughly 40 

percent of all deaths are now of this type.

*

 

* The study also points out how the different trajectories toward death require 

different strategies and instruments of care: hospice for the first; ongoing disease 

management, advance-care planning, and mobilizing service to the home for the 

second; Meals on Wheels and home health aides, then institutional long-term care 

facilities for the third. According to the study, the remaining 20 percent of all 

deaths “are split between those who die suddenly and others we have not yet 

learned how to classify.” 
14 │ TAKING CARE

Typical Chronic Illness Trajectories 

Copyright RAND Corporation, from Living Well at the End of Life, 2003. Reprinted with permission. 

The Rand study highlights the single most dramatic and socially significant change in how we Americans die: four in ten of 

us die only after an extended period of worsening debility, dementia, and dependence. To be sure, most people over 65 at any 

given time are still healthy. But as the cohort ages further, hundreds of thousands slip into protracted dotage and feebleness, 

needing protracted long-term care. And virtually every American 

family will be affected—indeed, is already affected. 
DILEMMAS OF AN A GING S OCIETY │ 15

Consider this implication. Every married couple, each with 

two still living parents, may expect to be involved with or even 

fully responsible for the care of at least one and, more likely, two 

of these four parents who will live out their last five to ten years 

in an increasingly enfeebled or demented condition, incapable of 

looking after themselves.* And, because there is no reversing the 

disability, the better they are cared for, the longer they will be in 

need of yet more expansive (and often expensive) care. Later in 

life, close to half of these caregiving children will themselves be 

in need of similar long-term care. 

C. The Availability of Caregivers 

Dependence means being dependent on others—on family 

members, professional caregivers, and caregiving institutions. 

One’s level of debility shapes one’s level of dependence: Some 

people require assistance with only the most physically or mentally demanding tasks—like cleaning the house or managing investments. Others require help with daily activities—like preparing meals and paying bills. But those with advanced dementia and 

grave physical illness require assistance with the most basic activities of daily life—bathing, toileting, dressing, and staying safe. 

Of course, those who suffer “prolonged dwindling” progress 

through these stages of increasing dependence. And this raises a 

major social question: As the incidence of dementia and debility 

increase in the years ahead, who will provide such caregiving for 

those who need it? And what burdens—economic and personal—will such caregiving impose on caregiving individuals and 

on society as a whole? 

 

* Based on the RAND finding that 40 percent of people will die only after a prolonged period of frailty and dwindling, elementary statistics suggest that a married 

couple with four living parents should have the following rough expectations: an 

87 percent chance that one or more of their parents will die in this way; a 52 percent chance that two or more will; an 18 percent chance that three or more will, 

and a 2.5 percent chance that all four parents will. 

 
16 │ TAKING CARE

1. The Present Realities of Caregiving.* 

Until now, unpaid family caregivers have supplied the bulk of 

long-term care. In a national survey conducted in 2000, more 

than a quarter of adult Americans reported that they had provided care for disabled family members during the past year; that 

translates into more than 50 million volunteer caregivers.18 The 

federal Administration on Aging estimated that over 22 million 

Americans are providing such care at any one time.19 

Within families, the practice of caregiving varies, but the responsibility falls mainly on women: 

For married elders, the first one to develop an eventually fatal 

chronic illness can usually rely on the spouse for most of the 

direct care needed. In a study of all caregivers assisting people age sixty-five and older, spouses accounted for 24 percent, daughters for 20 percent, and sons for 6 percent, meaning that immediate family members are 50 percent of all 

caregivers. The onset of illness in the caregiving spouse or in 

a widowed or unmarried elder often precipitates a crisis for 

the rest of the family, especially for daughters and daughtersin-law, who most often assume the role of caregiver.20

According to a 1999 study, the average length of time spent 

on family caregiving was eight years, with a third of respondents 

providing care for ten years or more.21 Most family caregivers 

serve out of love and loyalty, and most of them find caregiving 

meaningful and rewarding. 

But the challenges for family caregiving are increasingly 

weighty, and the availability of unpaid family caregivers is diminishing, in part because greater opportunities for women in the 

work force leave fewer people free for volunteer caregiving, and 

in part because of smaller family size and higher divorce rates. 

Single elderly individuals often have to rely on paid care, and 

 

* In this section and the next we rely heavily on the work of Dr. Joanne Lynn, a 

practicing physician long active in hospice care, long-term care, and end of life 

issues, whose recent book, Sick to Death and Not Going to Take it Anymore! (University of California Press, 2004) offers a succinct summary and portrait of caregiving today and an analysis of what may be a looming caregiving crisis. Much of the 

following account of the present and future realities of caregiving is based on the 

first chapter of her book.
DILEMMAS OF AN A GING S OCIETY │ 17

even when children can provide some care, they often find they 

need additional paid help. The average caregiving load is eighteen 

hours of direct services per week; for those who care for persons 

needing assistance with two or more activities of daily living 

(moving around, toileting, feeding and dressing), the average rises 

to forty hours per week. Yet most family caregivers also hold 

paying jobs, and the demands of caregiving compel most of 

them to rearrange their schedules, work fewer hours, or take unpaid leaves of absence. In addition, caregiving work can and does 

cause health problems for the caregivers.22 The average unpaid 

family caregiver is 60 years old, and many already have chronic 

illnesses of their own. 

2. The Future Availability of Caregivers. 

In her recent book, Lynn cites a number of reasons why caregiving for the elderly is so much more challenging today than it was 

in the past, and why those challenges are likely to grow even 

more daunting in the future. 

First, medical advances have enabled elderly and frail patients to survive much longer with serious chronic illness and 

disability than they could in the past. The patient’s frailty, and the 

presence of multiple illnesses and disabilities, may necessitate 

many different kinds of care, including medication, cleaning, 

feeding, doctor’s visits, trips to the hospital, physical therapy, etc. 

The caregiver’s responsibility to provide some of these services 

and to supervise others may last for years. Future medical advances are likely to enable elderly patients to live even longer 

with an even greater variety of chronic illnesses and disabilities. 

Second, families are smaller now, so that elderly patients on 

average have fewer descendants to rely on for care. In the past, 

there were few surviving grandparents, and they lived in large 

extended families with many potential caregivers. Now the ratios 

are changing, and an increasing percentage of the disabled elderly find themselves without any living relatives: it is estimated 

that, by 2020, 1.2 million people aged 65 or older will have no 

living children, siblings, or spouse.23 The Institute for Health and 

Aging reports that, in 1990, for each person over 85 years old, 

there were 21 people between the ages of 50 and 64, the prime 
18 │ TAKING CARE

years for family caregiving; in 2030, for each person over 85 years 

old, there will only be 6 people between 50 and 64.24

Third, in the past, the typical family caregiver was a woman 

who did not work outside the home, young enough to be able to 

care for a sick parent alongside her own children; and the typical 

elderly patient did not live very long with serious disability. Today’s—and tomorrow’s—caregivers will typically have jobs outside the home, unless they are ill or disabled themselves. Such 

working family caregivers often have to give up years of income, 

or accept less pay or advancement, in order to care for their elderly family members for extended periods. Caring for elderly relatives will often come into competition with raising a family of 

one’s own; already, women spend as long in caregiving for adult 

family members as in caring for children.25 In addition, because 

the elderly infirm are living longer, the potential caregivers 

among their next of kin (especially spouses and children) are 

likely to be older themselves, and hence more prone to illness 

and less capable of the hard work required by care of the elderly. 

All these factors make family care of the elderly more costly, 

more challenging, and more burdensome to those providing the 

care. 

Fourth, it does not seem likely that an increase in paid caregiving will be able to alleviate the growing strains on family caregivers. To begin with, there is an ever-shrinking pool of workers 

available for paid home health care. Home-care nursing used to 

be an important opportunity for steady employment among 

women who lacked advanced education and other skills, and especially among immigrants. But several factors have combined to 

reduce the availability of home-care aides and nurses, including 

the strenuousness of the work involved, compensation barely 

above minimum wage, difficult relationships with patients, language barriers, the lack of health insurance and other benefits, 

and hindrances to immigration. To reverse this trend, concerted 

efforts will be required to improve the working conditions, 

wages, and advancement opportunities of paid home-care providers. Without such costly improvements, we are likely to see a 

serious shortage of paid care workers even as the supply of unpaid family care-providers shrinks (for the reasons we have 

cited). Penny Hollander Feldman estimates that by 2010, when 
DILEMMAS OF AN A GING S OCIETY │ 19

the baby boomers begin to reach old age, the pool of middleaged women able and willing to provide basic elder care services, 

whether in nursing homes or at home, will be substantially 

smaller than it is now.26 In addition, an ongoing shortage of 

trained nurses is likely to be exacerbated in the future; the number of U.S.-educated nursing school graduates who took the licensing examination for registered nurses fell by 25 percent between 1995 and 2002,27 and 75 percent of all hospitals already 

have vacancies for nurses.28 It would be a tragic irony if our 

greater opportunities for individualistic success have produced a 

world more in need of caregivers than ever, but one that has lost 

its way of generating them. 

3. A Caregiving Crisis?

There is always a danger of declaring a social crisis prematurely, 

especially in the face of many unknowns. Indeed, as we think 

about the socio-economic dimensions of the challenge of caregiving, we cannot ignore the fact that we are, as a society, much 

wealthier than previous generations, with some reason to believe 

that the generations that follow will be wealthier still. It may be 

that changed patterns of saving and investment, new instruments 

such as long-term care insurance, higher birthrates, increased 

immigration of younger workers, and medical advances to prevent or treat these chronic illnesses will make some of our current worries overwrought. Just as it is foolish to ignore foreseeable problems, it is foolish to assume that we can foresee everything. Free societies are also creative societies, with a capacity to 

adapt to, as well as overcome, hard and novel circumstances. 

But all that said, there is reason to think that a genuine caregiving crisis may be looming, not only for the least well off 

members of society but for those in the middle and upper classes 

as well. Three unprecedented trends are about to converge, potentially creating great stress on our systems of care. First, the 

age structure in America is shifting, such that both in absolute 

and percentage terms we are becoming a population of senior 

citizens. Second, although many of us stay healthier longer, and 

this is a great blessing, it is also the case that many of us will experience a lengthening twilight of disability and dwindling. To-
20 │ TAKING CARE

day, as never seen before, a vast majority of us will suffer a long 

period, as much as a decade, of chronic illness and dependency 

before death comes. And finally, just as these two trends create 

an increasing demand for good health care providers, the actual 

supply of available caregivers appears to be shrinking rapidly. 

Taken together these trends suggest an impending public policy 

or socio-economic crisis in providing long-term care for an expanding population of increasingly incapacitated seniors.*

Confronting this grave social challenge will test us not only 

as citizens and policymakers, but as individuals and families. It 

will challenge us not only economically, but humanly and morally. 

It will test our character and self-understanding, requiring us to 

set aside self-interest in order to care for those who can no 

longer provide for themselves. 

But if we are to confront well the challenges of long-term 

care, we need also to attend to the human and ethical significance 

of aging itself. To begin with, we should resist all notions of 

“solving” the “problem of aging” and avoid acting as if aging is 

simply a problem to be solved. Aging is part of human life, and 

aging well requires the search for wisdom about what it means to 

ripen and die. It requires the cultivation of the character necessary to endure one’s own decline. It requires a richer understanding of the lifecycle—seeing oneself, as one ages, in relation to the 

young, and seeing death in relation to the renewal of human possibility from generation to generation. 

To think about the aging society, therefore, we must also 

think about what it means to be an aging person: What shapes the 

individual experience of growing old, and how does this experience change from person to person, culture to culture, society to 

society? For only by having some idea of what it means to age 

well and to stay human in time do we have a compass to guide us 

as we face our own potential crisis, as well as some way to measure whether we have indeed averted the worst possible outcomes 

of aging badly. 

 

* Making matters worse is a concurrent ethical crisis: we are unclear about the 

moral significance of our new situation and especially about what is owed, humanly speaking, to those unable to care for themselves. We treat this subject in 

Chapters 2, 3, and 4. 
DILEMMAS OF AN A GING S OCIETY │ 21

II. INDIVIDUAL AGING AND THE LIFECYCLE 

Aging is at once a biological, psychological, and social phenomenon. It is a universal feature of human life. We grow, we grow up, 

we grow older, and—if we are lucky—we grow old. In the 

broadest sense, we are aging from the moment of birth until the 

moment of death. In the beginning of life, to age means to develop—our bodies grow larger, our mental capacities expand, our 

physical powers develop. We learn to crawl, walk, run, speak, and 

write. In the long middle of life, aging means developing and declining all at once—developing new faculties and new perspectives but also gradually losing some abilities that once came easily. 

For many, growth amid decline is possible until the very end; the 

aging individual is still gaining in wisdom and experience even as 

the body enters its final senescence. But for others, at the end of 

life, biological aging eventually means almost entirely loss and 

decline; it means the gradual or swift eradication of one’s physical and mental powers. In some cases, the body declines in advance of the mind; in other cases, the mind deteriorates in advance of the body. But in the end, for everyone, aging leads to 

death and, with it, the loss of the whole person as body-andmind. This fact of being human and thus mortal is unavoidable 

for everyone. 

Biological aging is not unique to human beings. All animals 

grow and die, and the capacity for growth seems intertwined 

with the reality of death. But for human beings, aging is not only 

a biological experience but a psychological, existential, social, and 

religious one: it involves seeing oneself in a new light as one’s life 

progresses and one’s body changes; it involves looking back on 

one’s past experiences and looking ahead to one’s shortening future; it involves treasuring life and independence as long as possible and accepting dependence and death when they can no 

longer be resisted. It involves changes of familial and social roles, 

changes of responsibility at work and at home, and differing 

forms of participation in civic and communal life. 

Today, we have many images of being old—some perennial 

and some unique to our time. There is the revered matriarch who 

commands the respect of her entire family; the immobile and 
22 │ TAKING CARE

lonely resident of a nursing home; the old man who gives youngsters a run for their money on the tennis court; the doting 

grandmother who gives her grandchildren sweets when their parents aren’t looking; the senior executive given “early retirement” 

by his younger and more ambitious colleagues; the elder statesman who advises those who now stand where she once stood; 

the demented elder statesman who no longer knows his own 

name. Old age comes with many faces, and our image of old age 

varies almost as much as the elderly persons we know most intimately. Sometimes we revere the old and sometimes we pity 

them. Sometimes we admire the timeless lessons they have to 

teach us and sometimes we belittle them for not adapting to the 

times. 

The two most prominent images of aging today stand in 

deep opposition to one another: there is the idealized image of 

healthy old age, with vigor and vitality until the end, and there is the 

sorrowful image of extended decline and dependence, with the ravages 

of long-term dementia and physical deterioration. Ours is the 

age of both extended youth and extended degeneration—and 

often, for many individuals, a life trajectory that is marked by one 

after the other. We are younger longer and we are aged longer. Living well 

with this paradox of modern aging is perhaps the special challenge of our 

time. 

Aging well is thus a deeply ethical activity. It does not simply 

mean having the good fortune of staying healthy and vigorous 

until the end, but requires exhibiting certain virtues for as long as 

one has the capacity to do so. As William F. May reflects in his 

seminal essay on the ethical life of the elderly: 

Such virtues do not come automatically with growing old. 

Even limited dealings with the elderly disabuse us of that 

sentimentality. Rather, the virtues grow only through resolution, struggle, perhaps prayer, and perseverance. Further, 

these virtues hardly appear only in the elderly. Some common human virtues—which men and women of all ages 

might do well to cultivate—simply take special form in the 

later years. When they do appear in the elderly, however, they 

can instruct and sometimes even inspire. Their example can 

encourage particularly the fainthearted among the young 

who believe that full human existence is possible only under 
DILEMMAS OF AN A GING S OCIETY │ 23

the accidental circumstances of their own temporary flourishing.29

May reminds us that the virtues required to age well are the universal virtues needed by human beings of every age; the old are 

not a separate species but human beings living human lives who 

should be held to human standards. These virtues do not develop 

and manifest themselves simply by living a long time; they require active cultivation throughout life, culminating but rarely 

beginning in old age. 

Yet these virtues do take a special form among the elderly; 

old age is a particular time of life with particular ethical and existential demands, a time when vigor and ambition begin to wane 

and when the very meaning of one’s existence presents itself 

with looming finality. May also reminds us that the old live (or 

should live) among the generations, not separate from them. He 

reminds us that the young often benefit from the moral example 

of the old, and that the old are more likely to age well when the 

rising generations stand with them—as caregivers, to be sure, but 

also as recipients of the gifts that the old alone are equipped to 

give. Even in their days of total dependence, the old can still be a 

gift to the young. 

There is great human variation in how people age—variation 

dictated by the particularities of each person’s circumstances and 

by the culture in which the aging person lives. But certain traits 

of character, as May suggests, are always necessary to age well: 

courage, including the capacity to keep one’s fears in check even as 

one’s prospects worsen; simplicity, including the capacity to “travel 

light” on one’s final journey; wisdom, including the avoidance of 

excessive nostalgia and excessive remorse; and humor, including 

the wit that sometimes flourishes when the carefulness of middle 

age is no longer required.30 These virtues of the elderly—to 

which could be added gratitude and acceptance, among others—

draw strength from a society that honors the old even when they 

can no longer produce at the high levels they once did, and these 

virtues give strength to a society where the old always seek to benefit those who must replace them in the cycle of generations. The 

need to face aging and death—our own and that of our loved 

ones—with clear minds, caring hearts, and human solidarity re-
24 │ TAKING CARE

minds us that virtue has not become obsolete in our high-tech 

world. 

The personal experience of aging is, of course, more than a 

matter of virtue. The particularities of that experience are 

shaped by many factors—biological, psychological, and sociological—that we might review in turn. 

A. Biological Nature and Environment 

Gerontologists define “normal aging” as follows: “A timedependent series of cumulative, progressive, intrinsic, and harmful changes that begin to manifest themselves at reproductive 

maturity and eventually end in death. Primary aging would describe those changes that occur over time independent of any 

specific disease or trauma to the body, whereas secondary aging 

would describe disabilities resulting from forces such as disease.”31 While aging is a shared biological fact for human beings 

as a species, the trajectory of biological aging differs dramatically 

from person to person, due both to one’s unique genetic inheritance and to variable environmental influences that shape each 

person differently throughout life. For some, nature tragically 

prevents even the possibility of old age, death arriving before the 

person can grow old or grow up; for others, genetic predilections 

toward longevity are inherited from long-lived ancestors. For 

those fortunate enough to live a long life, the process of aging 

and decline takes many different shapes: some live vigorously 

until the end, then die a swift or sudden death; some suffer a 

gradual period of bodily decline, with sufficient time and selfawareness to see aging as the final chapter of a complete life; 

some suffer dementia and live through long years of diminished 

awareness and total dependence. 

This biological trajectory is influenced significantly in our 

time by the possibilities and limits of modern medicine. Medicine can prevent, reverse, or slow down some ailments; before 

other diseases and disabilities, medicine stands—at least for 

now—relatively helpless. Sudden and premature deaths are far 

less common than in the past; extended decline and disability are 

far more common. But the process of growing old always moves 

toward decline and death, even if the route is very different from 
DILEMMAS OF AN A GING S OCIETY │ 25

person to person. The vital trajectory varies; the post-vital outcome does not. 

B. The Presence or Absence of Loved Ones 

In crucial respects, everyone ages alone: for it is the self ’s body 

alone that changes, the self ’s faculties alone that decline, and the 

self ’s death alone that looms; these personal realities cannot be 

shared fully by others. But at best, individuals do not age and die 

by themselves (even if they must age and die as themselves 

alone), but with family, friends, and caregivers who stand with 

them. The rhythm and happiness of old age are shaped greatly 

by the presence or absence of loved ones: by living with or outliving one’s longtime spouse; by having one’s adult children and 

grandchildren live nearby or far away; by living at home with 

family or in a nursing home; by having or not having family altogether. It is precisely because we must age and die alone that we 

need the presence of others to help us age purposefully; to remind us that life does not end with us but carries forward beyond us; and to show us that we are valued for what we have to 

offer and even when we can offer little in return. 

Perhaps no friendship in life is deeper than that between 

husband and wife. As spouses think together about aging and 

dying, the meaning of being alone presents itself sharply: what 

loving spouse would not give his or her life to save a husband or 

a wife, and yet what spouse wants to leave his or her beloved to 

age and die alone. As with spouses, so it is with lifelong friends: 

It is a great blessing to live a long life, but also a burden to outlive all one’s closest friends, and to face death without the camaraderie that they alone might offer. The weight of loneliness is 

also felt in the relation between an aging father or mother and his 

or her adult children and grandchildren: the noble desire not to 

disrupt the children’s lives with one’s own neediness co-exists 

with the desire to be needed by them even in one’s days of dependence, and cherished by them when one’s usefulness has 

passed. In the face of aging, our devotion to others is both most 

tested and most required. There is sometimes a powerful temptation to believe that elderly persons’ lives are so limited that fellowship is insignificant, a temptation to regard being with them 
26 │ TAKING CARE

as little more than sitting awkwardly in a small room in a smelly 

nursing home. If, because they remind us of our own inevitable 

decline, we shun their company, we isolate them even more. But 

often, it is precisely because the elderly have nothing else that 

they need our fellowship most of all. 

C. Wealth and Poverty 

As the body ages, health problems proliferate and worsen. The 

capacity to face these problems—not only medically, but existentially—is affected significantly, often decisively, by one’s economic condition. Money alone hardly ensures that wealthy individuals can age well; the absence of money alone hardly means 

that poor individuals will age poorly. Many wealthy persons suffer terribly in old age despite the best medicine that money can 

buy, and many lack the character to live well as their powers diminish. At the same time, many poor persons demonstrate heroic virtue despite the lack of economic means, and they still savor the gift of life despite its many hardships. But it is quite obvious that having reliable health care, good nursing, and the 

wherewithal to make life decisions free from severe economic 

pressures often makes it significantly easier to age well. Being 

wealthy ensures that one’s bodily needs are attended to as well as 

possible, and it allows the elderly person (for as long as nature 

cooperates) to enjoy his or her final phase of life without living 

in a constant state of economic anxiety. 

Of course, there will always be large disparities in the economic condition of the elderly; this fact is unavoidable in any 

free society (not to mention un-free societies, where the disparities between the wealthy and the poor are usually much starker). 

But as a society, we should aspire to provide every aging person 

some basic level of economic security and medical care—

including long-term care—while always recognizing that providing support for the elderly is but one great civic good among 

many, and while always remembering that wealth alone is never a 
DILEMMAS OF AN A GING S OCIETY │ 27

sufficient answer to the human dilemmas of aging.* Economic 

security does not translate simply into existential security. Money 

does not give life meaning in the face of death. But as one faces 

great physical trials and ultimate human questions in one’s final 

days, it is surely a great blessing to do so without the constant 

fear or present reality of economic disaster, or the constant 

worry that good care for oneself means years of hardship for 

one’s spouse, children, or grandchildren. 

D. Vocation and Avocation 

Since old age is a distinguishable phase of human life, it makes 

sense to consider the distinct purposes and obligations that define it and the connection of these purposes and obligations to 

the other phases of one’s life. The answer is hardly the same for 

everyone, and it obviously shifts from one period of old age to 

the next. For some, old age is a time for novel pursuits—a time 

to explore interests that have been put off year after year in order to meet the demands of full-time parenting and full-time 

work. For others, it is a time to return to old passions or to renew the existing bonds of family and friendship. For some, aging 

is a time to continue one’s life work. For others—and eventually 

for everyone—aging means learning to “let go” of the things 

one has done throughout life; it means “retirement” in the true 

sense—no more fixing cars, taking hikes, sailing boats, or attending concerts. To age is to experience intermittent finitudes on the 

way to the ultimate finitude that is death. And for some, the central work of growing old is learning how to die—how to let go, 

how to say goodbye, how to ask forgiveness, and how to put 

one’s existence and one’s memory in the hands of others. 

At best, the vocations and avocations of old age are not 

mere distractions to pass the time, or simple amusements that 

temporarily blur the realities of finitude. Amusement is not to be 

disparaged; it is as essential to old age as to other phases of life, 

and being amused is sometimes an achievement of character in 

 

* Of course, to the extent that this economic security is provided through public 

funds, it will come at the expense of other public goods and other segments of 

society, for example, politically powerless needy young children. 
28 │ TAKING CARE

circumstances where there are many reasons to be miserable. But 

constant amusement—cruises, bingo, television, and so on—may 

not be the best way to confront the seriousness of being old. Aging rightly forces reflection on the character of one’s life as a 

whole. It often involves living with opposites: cultivating new 

interests, new sensibilities, or new understandings of the world, 

while letting go of old loves, old jobs, and old pursuits that once 

loomed large in one’s identity. Pursuing the ideal of aging well is 

never work for the weak-spirited. It invites us to see our final 

years as the culmination of a human whole, with a deepening 

sense that one’s life is not simply an arbitrary sequence of events 

but a coherent narrative with a beginning, a middle, and a meaningful end. Not everyone, alas, is so fortunate as to be able to do 

so. 

E. Male or Female 

While aging is a common human experience, it would be a mistake to ignore some differences between men and women during 

this time of life. As a sociological and demographic fact, women 

tend to outlive men, and thus more often face the burdens of 

living as widows than do men the burdens of living as widowers. 

This means that women are more likely than men to sleep in 

beds that now feel empty, having spent months or years caring 

for the person who once slept alongside them. This comparatively longer life also means that women are more likely than men 

to become impoverished in their golden years, spending down 

their final assets on long-term care, including the kind of care 

they may once have provided to their husbands free of charge. 

There may also be certain inherent differences between men 

and women when it comes to aging, both biological and psychological. As William May suggests: 

[W]omen receive an earlier and clearer biological preview of 

aging—if not of mortality; menopause gives them a clear 

signal that the wheel of existence turns downward toward 

the ground, while men find ways to obscure in themselves 

whatever signals they receive. Women tend more often than 

men to associate aging and death with the corruption of 

bodily form; men, with a flagging vitality. The corruption of 
DILEMMAS OF AN A GING S OCIETY │ 29

the body shows up relentlessly in the morning mirror; the 

failure of vitality overtakes in more elusive ways and is suppressed more easily in men.32*

Other existential realities—such as the transition from work 

to retirement or from a full nest to an empty nest—once affected 

men and women in profoundly different ways. But as the familial 

and social roles of men and women have become less clearly 

demarcated, the differential effect of these experiences on men 

and women is perhaps less significant, even as the experiences 

themselves are no less profound. Yet despite the fluidity of male 

and female roles, it still remains the case that women serve much 

more extensively than men as caregivers for the dependent, including and especially for the dependent elderly. And it may be 

that this experience of caregiving makes women more attuned to 

the realities of aging, and thus more prepared existentially and 

ethically when they age and decline themselves. 

F. Mind and Body 

Although aging proceeds in one direction—toward the gradual 

breakdown of the whole body, ending in natural death—

senescence is not a unified process that affects equally all systems 

of the body and mind. Different people age in different ways, in 

part because they lose different capacities at different times, and 

in part because they lose some capacities and not others before 

they die. Some individuals suffer long-term physical disability 

with their mental capacities and self-awareness firmly intact until 

the very end of their lives. For others, cognitive disability or dementia sets in and grows severe even as the body remains relatively healthy, with the total breakdown of the body’s systems 

coming only much later, often years later. The experience of aging is thus shaped profoundly by the health of the body in relation to the health of the mind, and the health of the mind in relation to the health of the body. It is also shaped by the specific 

manner in which the body fails or the mind deteriorates—as well 

 

* How much of any such differences between men and women is natural and how 

much is cultural is, of course, a long and (for now, at least) unanswerable question. 
30 │ TAKING CARE

as by how well the individual is able to adapt to and compensate 

for any diminution of function. 

The combination of physical debility and cognitive health 

can bring a host of personal frustrations: the powerful desire to 

do something for oneself or another, even the simplest thing, but 

not being able to do it; the inability to control one’s bowels, with 

enough awareness to be embarrassed by it; the heartache of 

watching loved ones sacrifice so much on one’s behalf, when all 

one wants is for them to flourish themselves. Yet the gift of selfawareness until the end is also great. The aging individual with a 

healthy mind and sick body can still savor some of life’s greatest 

joys—experiential, interpersonal, and intellectual. He might still 

be able to read his favorite books, listen to his favorite music, see 

a grandchild off to the prom, and thank a devoted family caregiver. But the grave imbalance of physical and mental powers 

also often brings its own special misery—including the feeling of 

being trapped inside a body that does not respond to one’s desires, needs, and efforts at control. 

The gradual and extended loss of one’s mental powers 

brings different dilemmas, frustrations, and miseries, both for the 

suffering person and for his or her caregivers. With a disease like 

Alzheimer’s, as we will explore more fully below, some people 

suffer at first by knowing what is coming—by seeing one’s mental powers decline, one’s memory erode, one’s grasp of one’s surroundings becoming hazy. Eventually, this self-awareness of decline fades into the loss of self-awareness entirely—including the 

inability to understand how to behave appropriately, the incapacity to recognize loved ones, and the confusion that comes with 

not remembering life from one minute to the next or the paranoia that comes from not understanding what others are doing 

and why. Eventually, with Alzheimer’s and other senile dementias, 

this cognitive disability becomes so severe that it leads to physical 

disability—the inability to speak, to control one’s bowels, to eat 

and drink. Eventually, as the mind shuts down completely, so too 

does the body. 

As we contemplate the imbalances of physical and mental 

health that often shape how we age, we confront the puzzling 

unity and disunity that is the human person. We come to see that 

we are an indivisible unity of the mind-and-body, but that often 
DILEMMAS OF AN A GING S OCIETY │ 31

our will wants what our bodies cannot do and cannot be. The 

individual both has a body and is a body, even when he resents 

all the things the body cannot do or all the pain the body causes, 

experiences, and endures. And eventually, in death, this experience of imbalance leads to a unified ending: the death of the 

whole self, mind-and-body together. 

G. A Person’s View of Death 

Our views on death obviously shape how we age, though these 

views often take firmer shape only as we age. Aging leads to 

death—the final limit on earthly life and a fact of our humanity 

that cannot be disputed or avoided. But there is deep disagreement about what the end of embodied life means for the human 

person who once lived. Many of us live with great uncertainty 

about the meaning of death. We live between faith and doubt, 

fear and serenity, obsession and blindness. Many others have 

firmer ideas about what death is—whether a supreme faith in 

redemption and resurrection after death, or a firm belief that life 

here-and-now provides no evidence for life hereafter, or a belief 

that an obsession with personal death only blurs the perfect 

nothingness (or nirvana) that is being itself. 

Moreover, there is no simple formula for judging how one’s 

views on death will shape one’s approach to aging. Some of 

those who believe that the self disappears entirely after death will 

resist death at all costs, struggling to preserve bodily life against 

the prospect of total oblivion. Others with the same belief conclude that the self is the final judge of its own existence, including the arbiter of its own exit. In this view, the ravages of aging 

might be justifiably preempted by choosing or embracing death, 

on the grounds that happiness here-and-now is the only measure 

of life’s worth and that some kinds of old age are too miserable 

or undignified to endure. For still others, a belief in the utter finality of personal death might lead to a kind of stoic virtue, enduring aging and death as an example of uprightness for those 

who will one day die themselves. 

The widespread belief that life does not end here—that salvation, resurrection, or reincarnation is possible after death—can 

also influence how one views one’s own aging. For some, this 
32 │ TAKING CARE

means that aging is both a burden that must be endured and a 

sacred passageway to divine salvation. Such an emphasis on the 

hereafter might make death seem less horrible because it is less 

final; or it might make death seem more frightening because one 

fears eternal judgment. To believe in heaven often means believing in hell; the comforts of faith often coexist with terrible anxiety about the fate of one’s immortal soul. 

In the modern age, as suggested above, many people live 

somewhere between certainty and doubt about the meaning of 

death: they hope for salvation, but cannot be sure; they see little 

reason to believe in life hereafter, but know that the origin and 

destiny of life is a mystery they cannot finally solve. But whatever one’s views on these ultimate questions, death is both an evil

and a necessity for all bodily beings: Death is an evil, because it can 

strike at any moment, because it robs us of those we love, and 

because the overwhelming fear of death can deform how we live. 

And death is a necessity, because as biological beings we are not 

made to live forever, and because much that is good in human 

life depends on accepting and living out our roles as selfconscious mortals. In death, one generation stands aside for the 

next. The ripeness of age gives way to the freshness of youth. In 

some ways, aging appears as a series of small dyings on the way 

to death, but also the drama of taking one’s place in the ongoing 

chain of generations, ideally with more gratitude than bitterness 

for the life one has lived. 

H. Conclusion: Modernity and the Lifecycle

This drama of growing old, passing down, and passing on is 

hardly new. It has always been at the heart of the human lifecycle, recognized by the wise men and women of every age (even 

before old age as we know it today became so commonplace). In 

De Senectute, Cicero gave voice to this human reality of ascent and 

decline: “The course of life is fixed, and nature admits of its being run but in one way, and only once; and to each part of our 

life there is something specially seasonable.”33 The question we 

now face, however, is whether the idea of a “cycle of life,” with 

its several and differently meaningful stages, still makes sense to 

us—both as a lived experience and as a guiding belief. Do we still 
DILEMMAS OF AN A GING S OCIETY │ 33

regard each phase of life as possessing its own “seasonable” 

quality, where the trajectory of one’s own life interlocks with the 

trajectory of the generations? Or do we live, in some sense, “after the lifecycle,” with the expectation of extended youth or extended decline, and with a confused sense of how life’s many 

phases fit together or how the self’s demise relates to the ascent 

of those who will stand in our place?* 

Already, we seem to be extending youthful vitality into what 

once seemed like old age, and at the very least, we now expect

healthy living and medical progress to keep us “feeling young” at 

ages that were once considered old. In the future, we may not see 

70 or 80 as part of old age but rather as part of the long middle 

of life. At the same time, however, we may be entering an age in 

which extended decline and dependence also become widespread, and when a long period of being unable to care for oneself becomes the normal pathway to death. These changes in 

how we age are taking shape alongside myriad changes in the 

rhythm of the earlier phases of life—including when people 

marry, when they have children, how many children they have, 

and the kind of work they perform. The old increasingly care for 

the very old, and the young increasingly see the old at a distance—both geographically and pedagogically, shaped by a culture that often prizes mobility and novelty over stability and tradition. 

To say that we live “after the lifecycle” is surely an exaggeration: the outlines of growth and decline still hold in our lives, as 

does the sense that life has a shape, with different phases, each 

with different qualities. But we also seem to be living in a new 

moment, both sociologically and psychologically: The age structure of society has changed and is changing; the decades of life 

are starting to hold new meaning; and the expectations we impose on old age are evolving both positively and negatively, with 

high hopes and great fears. These changes have been brought 

about in part by modern medicine’s transformation of the trajectory of life, illness, and death and by modern culture’s emphasis 

 

* Prof. Thomas Cole presented an extremely illuminating discussion of these 

questions at the June 24, 2004 meeting of the Council. For the transcript, see 

http://www.bioethics.gov. 
34 │ TAKING CARE

on independence, individual self-rule, and career as the major 

sources of self-esteem. 

The rising prevalence of Alzheimer’s disease and other dementias in old age only makes these questions about the trajectory of life more acute. Besides the normal fear of senescence 

and death, many people are horrified at the thought of ending 

their lives only after a long period not just of physical frailty and 

disability but also of mental incapacitation, impaired memory, 

diminished awareness, loss of modesty and self-control, distortion of personality and temperament, inability to recognize 

friends and loved ones, and general dullness and enfeeblement of 

inner life. It seems a cruel irony that the very medical advances 

that have kept many of us reasonably healthy into a ripe old age 

have, by the same token, exposed us to the ravages of incurable 

and progressive dementia, and to the prospect that our life’s 

drama may well end with an extended final act marked by a gradual descent into mindlessness. In the next section we set the 

stage for a deeper discussion of this dilemma by giving an overview of the clinical and experiential facts about dementia and 

specifically Alzheimer’s disease—an illness that terrifies many 

and requires years of constant care. 

III. DEMENTIA AND THE HUMAN PERSON 

Dementia is not a specific disease but a condition of disordered 

and diminished intellectual functioning, usually involving disorientation, impaired memory, confused thinking, disturbed speech, 

defective judgment, emotional instability and (later) apathy, and 

erosion of self-awareness. These deficiencies, most often progressive, can result from a wide variety of underlying diseases 

and disorders of the brain, having a wide variety of causes—

traumatic, toxic, metabolic, vascular, degenerative. The dementias 

of old age are largely of two types, though with possible overlap: 

the dementia caused by vascular disease (so-called multi-infarct 

dementia, the result of multiple small strokes) and the dementia 

caused by Alzheimer’s disease. Because its incidence is rising rapidly as our society ages, and because it generates the most personal anxiety and public disquiet, we shall concentrate on Alz-
DILEMMAS OF AN A GING S OCIETY │ 35

heimer’s disease. But many of the implications for caregiving apply equally well for persons suffering from the other dementias 

and, indeed, from other forms of frailty that afflict the elderly. 

The assault on a person’s mental faculties brought on by 

Alzheimer’s disease is insidious in onset and slowly but implacably progressive in character. It usually runs a course from onset 

to death of about 6 to 10 years, though it may last up to twice as 

long. In its early phase, the symptoms are mild and only modestly 

impairing. But as it advances, slowly and with no particularly defined signposts of its progress, essentially all aspects of human 

mental capacity are first disordered and then destroyed, with the 

patient at the end bedfast, helpless, and mute. It is a distressing 

condition to witness and a frightening one in prospect.* 

Alzheimer’s disease is one of the most common mental disorders, making up some 20 percent of patients in psychiatric 

hospitals and a far higher percentage of patients in nursing 

homes and assisted living facilities. Because the diagnosis cannot 

be definitively established save by autopsy, it is difficult to get 

accurate numbers for incidence (rate of new cases per year) and 

prevalence (total number of cases at a given time) of the disease. 

Still, almost all estimates indicate that both incidence and prevalence are increasing, and rapidly, in parallel with the rapid growth 

in the numbers of people living into their seventies, eighties, and 

nineties. Although the personal risk of developing Alzheimer’s 

disease in the United States has not changed since Alois Alzheimer first described the illness in 1907, clinicians are seeing 

more new cases each year because Americans are living long 

enough to develop the disease. 

 

* Very few other dementia illnesses are exactly like Alzheimer’s disease. There is 

as yet no “biologic marker” identifiable during life, and only evidence from brain 

tissue can confirm a clinical diagnosis. However, in the 1980s a working group 

from the National Institutes of Health developed clinical criteria with which the 

diagnosis can be made with 85 to 90 percent accuracy (McKhann, G., et al., 

“Clinical Diagnosis of Alzheimer’s Disease,” Neurology 34(7): 939-944, 1984 and 

Tierney, M. C., et al., “The NINCDS-ADRDA Work Group Criteria for the Clincial Diagnosis of Probable Alzheimer’s Disease,” Neurology 38(3): 359-364, 1988). 

This achievement has been invaluable for epidemiologic studies (documenting 

the prevalence of Alzheimer’s disease in the population) and for research purposes (identifying with confidence patients with Alzheimer’s disease for closer 

analysis and clinical research). 
36 │ TAKING CARE

Estimates vary as to the number of individuals affected by 

Alzheimer’s disease, but all studies concur that risk increases with 

age. Estimates of the prevalence of Alzheimer’s disease in the 

United States for the year 2000 range from 2.17 to 4.78 million 

cases;34 35 4.5 million is the figure cited by the Alzheimer’s Association.36 Among persons 85 and over (4.86 million in 200437), 

almost 40 percent (1.8 million) may be affected.38 Assuming no 

major breakthroughs in treatment that would delay incidence or 

retard disease progression, estimates of future prevalence (in 

2050) are about fourfold the 2000 rate. And even with new 

treatment modalities that might slow the onset of the disease, 

none of the projections expects less than a three-fold rise in 

prevalence in 2050.39

A. The Phases of Alzheimer’s Disease 

The typical course of Alzheimer’s disease can be roughly divided 

into three phases of increasing severity and disability. Patients 

begin with barely noticeable lapses in “recent memory” (the 

memory of immediate events). This memory deficit—first recognized perhaps only by a tendency to repeat comments or questions—increases over time to disorientation and confusion. This 

confusion may provoke occasional but very distressing emotional 

reactions of bewilderment and anger, dubbed “catastrophic reactions,” that frighten both patient and family. Many mental capacities, however, are retained in this first phase, which usually lasts 

two to four years. The basic personalities of the individuals remain intact and they can enjoy many of life’s experiences. Even 

as their friends and family look with fear for the future, they also 

notice how engaged the afflicted individuals can often be in daily 

events. 

As the cognitive decline worsens, the disorder enters a second phase of another two or three years, marked by a progressive collapse of language functions (word finding, reading, and 

writing) and difficulties in manual skills (dressing, eating, and 

personal care). The patients now tend to wander, becoming lost 

even in familiar neighborhoods as their disorientation and confusion worsens. They often become preoccupied with suspicions 

aroused usually by mistakes of comprehension and attribution, 
DILEMMAS OF AN A GING S OCIETY │ 37

but also by hallucinations and delusions. These suspicions lead to 

more severe emotional outbursts and, sometimes, physical aggression. A depression can emerge and become a crippling and 

persisting state of mind. And as the disruptions of affect, 

thought, language, and manual skills alter all their relationships 

with others, patients begin to fail at recognizing friends and family and seem to be fading out of contact with others. 

In the third and final stage, the disorder takes the form of 

loss of control of bodily functions and motor powers. Walking 

becomes impossible, soon followed by generalized paralysis, confinement to bed, and incontinence of bladder and bowel function. Within a year or two, the patients sink into a state of relative mutism and unresponsiveness, neglecting all external stimuli 

or inner needs and their continuing existence depends entirely on 

nursing care. They eventually die from inanition or some intercurrent infection such as aspiration pneumonia.* 

This basic description of the clinical course emphasizes the 

growing losses of mental capacity that lead inexorably to the fading away of the self—a phenomenon distressing to witness and, 

for many patients early in their disease, distressing to experience. 

But the sense of “curse” now evoked by the very name, “Alzheimer’s,” overlooks the fact that patients—especially in the first 

phase—often have much to enjoy in life, even as much is lost. 

And these pleasures (“smelling the roses” is a useful shorthand)—perhaps becoming more momentary and transient over 

time—extend even into later stages, as patients wander in and 

 

* Several clinical features help differentiate the Alzheimer’s course from other 

forms of dementia and cognitive disablement. First, there are no abrupt neurological events such as occur with cerebrovascular strokes that can produce multiinfarct dementia. Alzheimer’s disease advances slowly and smoothly, problems 

with memory and other psychological capacities dominate much of its course, 

and motor and sensory symptoms such as paralysis do not appear until the terminal phase. Second, the psychological impairments are global rather than specific 

to memory or language alone. Detailed psychological testing will often show this 

global feature even in the early stage when only the memory seems disturbed. 

Third, consciousness in the sense of awareness and wakefulness is also unaffected 

for most of the course. Indeed, many observers of a patient note how he or she 

retains much of their usual personality and interpersonal “style” even as the analytic reasoning power is lost. This feature is quite different from the states of 

mind associated with the intoxications from kidney or liver failure. 
38 │ TAKING CARE

out of relative lucidity. Many doctors and nurses find great reward in caring for these patients and their families. Clinical efforts to treat symptoms of depression and delusion, to offer 

friendly social and occupational therapy, and to simplify and 

regularize daily routines produce much comfort and reassuring 

support for patients while they are still able to appreciate many 

of life’s simple pleasures. Yet the truth remains that Alzheimer’s 

disease is a most distressing human affliction in which almost all 

that is vital to human character and dignity is gradually lost, but 

for which certain forms of care, discussed below, can bring great 

benefits to both patient and families. 

B. Cause and Remedy 

The symptoms of Alzheimer’s are caused by a generalized disease of the brain, characterized by loss of neurons and resulting 

atrophy of the cerebral hemispheres, especially in the frontal, 

temporal, and parietal lobes. Extreme atrophy of the hippocampus is uniformly characteristic, accounting for the early and severe memory loss typical of all patients. Eventually, though, the 

atrophy becomes generalized; at time of death, the brain has 

shrunken by more than 20 percent of its original volume. On 

microscopic examination, three identifiable pathologic changes 

are characteristic: (1) “amyloid plaques,” extra-cellular deposits 

of accumulated beta-amyloid, an amorphous, insoluble, protein 

substance, surrounded by bits of degenerated nerve fibers; (2) 

“neurofibrillary tangles,” diffusely distributed, shrunken neurons 

that are filled with thickened tangled fibers; and (3) “granulovacuolar” degeneration, which affects other neurons, particularly within the hippocampus. These pathologic changes in the 

brain advance steadily and correlate with the progressing severity 

of the patient’s dementia. 

The underlying causes of Alzheimer’s disease are complex, 

with both genetic and environmental factors playing a role. But 

recent biochemical studies on the plaques and neurofibrillary 

tangles have led to a reasonably detailed hypothesis regarding the 

sequence of pathogenetic steps that lead ultimately to neuronal 
DILEMMAS OF AN A GING S OCIETY │ 39

death, atrophy, and clinical dementia.* And this hypothesis is now 

directing intense scientific investigation in search of measures 

that could prevent, interrupt, or retard the pathological process 

that produces the plaques and tangles. For the first time, scientists are hopeful of finding interventions that could interfere 

with the pathogenic processes in ways that might make radical 

correction and even prevention possible. 

At this time, therapeutic approaches are of three types: 

treatment of symptoms, replacement therapies, and experimental 

efforts aimed at interrupting the pathogenic process. Symptomatic treatments seek to help patients and families with the 

growing disability brought by the disease. They begin with aids to 

memory and orientation that regularly remind the patient of the 

present time and place and ultimately extend to protective services to help patients who wander or get lost, to nursing services 

for dilapidating self-care, and to the management (with medications) of some of the symptomatic depressions, hallucinations, 

seizures and the like that come with the progress of the condition.†

 

* Here is the hypothesis and its biochemical foundation. The plaques consist 

largely of beta-amyloid protein (containing 40 or 42 amino acids), produced by 

the normal turnover of a structural transmembrane protein in brain cells (APP, 

for “beta-amyloid precursor protein”) that may have receptor functions. The 

neurofibrillary tangles are masses of helically wound filaments, which are tangled 

and thickened because they represent the aggregation of an insoluble pathologic 

form of a normally highly soluble, cytoskeletal protein called “tau.” The “cascade” hypothesis for the pathogenesis of Alzheimer’s disease draws these biochemical observations into a powerful explanatory idea. This hypothesis holds 

that the very gradual extra-cellular accumulation (either through over-production 

or slower clearance) of the beta-amyloid protein—particularly the 42-amino acid 

form—is in theory toxic to cerebral neurons and their synaptic connections. Accordingly, the beta-amyloid protein could generate (by several mechanisms still 

under study) a response in the neurons that leads (among other things) to the 

intra-cellular (intra-neuronal) appearance of the pathologic form of “tau” and 

gradual development of the destructive neurofibrillary tangles that disrupt neuronal functioning and lead to neuronal death. (See Dr. Dennis Selkoe’s presentation to the Council, June 24, 2004, available online at http://www.bioethics.gov. 

See also Selkoe, D. J., “Alzheimer Disease: Mechanistic Understanding Predicts 

Novel Therapies,” Annals of Internal Medicine, 140(8): 627-638, 2004.) 

† Five particular psychic deficits call for symptomatic attention. Amnesia, particularly difficulty retaining immediate happenings, requires repetition and mnemonic 
40 │ TAKING CARE

Replacement therapies seek to supply chemical deficiencies 

caused by the degeneration of neurons, for example, acetyl choline, a stimulating neurotransmitter whose reduced activity in the 

cerebral cortex correlates roughly with the degree of cognitive 

impairment in Alzheimer’s patients. Medications that slow the 

breakdown of acetyl choline (by inhibiting acetyl-cholinesterase, 

the enzyme responsible for its turnover) and thus leave higher 

levels of this neurotransmitter in synapses have been demonstrated to slow the progress of the disease in some patients in 

the early first phase often by as much as a year or more. 

Still unproven but extremely exciting are experimental trials 

aimed directly at the pathological process itself, and particularly 

at the presumptively toxic role of the accumulating beta-amyloid 

protein. These include measures that could decrease the production of the protein, block its agglutination, or protect the neurons from the toxic effects of its accumulation. Perhaps the most 

exciting experimental approach is the use of immunization to 

yield antibodies to beta-amyloid protein, so as to reduce its 

amount in the brain or to clear it after it has accumulated.* 

 

aids. Aphasia or dysphasia, with breakdown in word choice, requires patience and 

acceptance of circumlocutions. Apraxia, particularly in managing simple manual 

tasks such as dressing and toileting, requires close management and assistance. 

Visual and spatial disorientation, including getting lost in familiar places, requires 

regular support and guidance. And affective disruptions, including episodic outbursts of anger and fright produced by the sense of loss of control or change of 

routine, are avoided more than treated by maintaining a daily routine and by the 

reassuring presence of regular caregivers. In addition, depression in the form of 

demoralized anxiety over the implications of learning the diagnosis afflicts many 

patients in the earliest phase; here, the reassurance of a committed physician 

promising continuing care and assistance for the duration of the disease is invaluable and essential. This “demoralization” must be differentiated from a depressive disorder resting on the brain pathology itself, quite frequent in Alzheimer’s 

patients, which typically responds to anti-depressant medications. 

* Such “vaccination” against beta-amyloid protein led to an antibody response 

and the clearing of the beta-amyloid in mutant mice that otherwise accumulated 

beta-amyloid in their brains. But the early trials in humans ran into difficulties. 

“Active” immunization of the antigen-antibody variety produced complications 

of an allergic kind in some patients, so investigators have turned to “passive” 

immunization by delivering exogenous anti-beta-amyloid antibodies to patients 

with the disease. This “passive” immunization effort is now undergoing clinical 

trial in human patients and the results are eagerly awaited. 
DILEMMAS OF AN A GING S OCIETY │ 41

All of these experimental approaches offer the promise of 

becoming disease-modifying treatments that could prevent the 

onset or greatly slow the progress of Alzheimer’s disease. If it 

were possible by one of these means to postpone the onset of 

the disease beyond the normal lifespan or even for five to ten 

years, there would be a great reduction in the incidence of the 

disease and many of those who would get it later than they now 

do would die first of other causes. This might be especially true 

if subjects genetically vulnerable to Alzheimer’s disease could be 

recognized before symptoms appear and could be treated with 

measures to forestall the pathogenetic “cascade.” Optimism—

long at a premium—is now growing in the research community, 

where the view is held that within the coming decades apt preventative and rational therapeutics will be found for Alzheimer’s 

disease. Yet at least for the present elderly and the baby boomer 

generation, there is every reason to believe that Alzheimer’s will 

remain a major public health problem that will persist for decades. Hope for a remedy is fitting; planning ahead based on its 

rapid arrival is not. 

C. Alzheimer’s Disease and Human Experience 

Humanly speaking, Alzheimer’s disease is not just a medical condition, with a biological cause and sociological implications. It is 

also a lived experience, for the ones who suffer it, for their family 

and friends, and even for thousands of people who live in fear of 

getting it. Not long ago, when dementia was less common and its 

causes were unknown, a case of senile dementia was regarded by 

family members as part of natural old age (“Dear grandpa has 

grown old and forgetful”) and of no direct concern to their own 

future. Today, everyone is aware of this now-common disease 

that sometimes runs in families, lacks effective treatment, and 

carries a dreaded name; as a consequence, a case of Alzheimer’s 

in the family is often experienced as a terrifying or stigmatizing 

curse. People feel themselves at risk of following the dreadful 

path they witnessed in parents or grandparents, and many of 

them notice fearfully every clumsy mental process they display 

after age 50, thinking it a harbinger of their fate. The differentiation of Alzheimer’s disease by name has successfully launched 
42 │ TAKING CARE

effective and focused research enterprises, but it has done so at 

the price of human disquiet and even terror, often inducing depression in the “worried well,” and sometimes even leading them 

to suicide. 

The actual human experience of the disease itself varies 

greatly, depending in part on the person’s character and temperament, in part on the progress of the disease. Many patients 

develop symptoms so imperceptibly and gradually that, by the 

time someone brings them for evaluation and the diagnosis is 

made, they are already sufficiently impaired that they worry little 

about their future. They are bothered rather by their present 

handicaps and especially by the restrictions imposed on them, 

such as loss of independence or revoking of driving privileges. 

But many people who come to doctors seeking an explanation of 

their new mental impairments are already worried about the import of their symptoms and are quite able to appreciate the 

prognostically grim diagnosis. Individuals typically respond according to their habitual ways of confronting bad situations. 

Those with broad horizons and calm demeanors might look 

similarly at this problem and seek to reassure their loved ones 

and themselves that they are equipped to manage what comes. 

Those fortunate enough to have a trusted physician who promises to stay with them all the way through the illness might gain 

some comfort and reassurance. Such support is, alas, unavailable 

to very many people, who lack either a caring family or a trusted 

physician, or both. 

But for many, the uncertainty of their future is the most distressing feature. Those who have habitually fought uncertainty by 

seeking always to be in control will likely attempt a similar mastering stance against this situation. But as they confront their loss 

of control and their impotence to correct it, they can become the 

most distressed of patients. They are particularly susceptible to 

the urgings of those who advocate euthanasia and assisted suicide. Many do in fact become despondent and dangerous to 

themselves, and some contemplate suicide and occasionally succeed in the effort. Men are more likely than women to take desperate action. Women are more likely to become apathetically 

depressed. A kind, thoughtful, and experienced physician can 

often bring a more detached sort of support to this kind of pa-
DILEMMAS OF AN A GING S OCIETY │ 43

tient than worried family members can. Indeed, many of these 

desperate patients respond well to anti-depressant medications 

and throw off their depression and their suicidal thoughts; with 

the anti-depressant treatment their cognition can for a time improve considerably.* 

With the advance of the disease, the patients’ long-term 

worries about prognosis are replaced by distress associated with 

their confusion and occasional suspicions. They have trouble 

making themselves understood; they cannot communicate what 

is bothering them. Here, as mentioned, considerable comfort is 

brought when their daily schedule or rounds of activity are 

routinized to minimize surprises, and they are frequently reminded of the daily plan. Medications can help calm patients, but 

if not used sparingly they can also undermine efforts to engage 

patients in occupational therapy, daily exercise, or other stimulating activities. With new nursing practices that emphasize cheerful 

and responsive environments, patients often do better in skilled 

nursing facilities than they do at home, and certainly better than 

they once did under the restrain-and-restrict-them approach of 

the old nursing homes. Ultimately, with the loss of all mental 

functions, however, patients fall further away from human interaction, becoming quite apathetic and absolutely dependent on 

nursing care. Yet even in their largely apathetic state, they can 

often recognize and appreciate the kindness shown to them and 

the affection represented in the visits and responses of family. 

While the fear of Alzheimer’s disease afflicts mainly the 

worried well and some of those in the early stages of the disease, 

the psychic distress caused by the disease often falls more heavily 

on loving family members than on the patients themselves, especially as the disease progresses. Paradoxically but mercifully, a patient’s subjective suffering frequently diminishes as his mental 

diminishment worsens. The reverse is generally the case with the 

 

* A crucial matter of differential diagnosis with middle-aged and elderly patients is 

that severe depressive illness can slow cognition severely all by itself. All neuropsychiatrists have seen patients believed to have Alzheimer’s disease turn out to 

be afflicted by a recurrence of a depressive illness that, in attacks, had been seen 

earlier in their life but that on this occasion was misidentified (and thus long untreated) as Alzheimer’s. Suicide in these depressed and misdiagnosed patients is 

also not rare. 
44 │ TAKING CARE

family. As the patient fades from meaningful contact, the family’s 

sorrow over what is being lost increases; such distress is often 

held at bay only because time and effort needed for the increased 

demands of care do not allow for such reflective “indulgences.” 

Alzheimer’s disease is not the worst human affliction, nor is 

it the only condition that oppresses the frail and feeble elderly. 

But its special character—attacking not only the capacities that 

are central to a flourishing human life but also the existence of a 

self-knowing consciousness—creates its own special difficulties, 

first for the patients, eventually for the onlookers. True, in the 

early stages of the disease, reflective patients will suffer from 

looking ahead to a future that is at once utterly uncertain and utterly determined, a future before which those who like to be in 

control will feel enormously discomfited. They will feel the frustrations of failing to find the right words, of misremembering, 

of getting lost. But the more the disease progresses, the more the 

sadness resides with the family. The depression, the outbursts, 

the loss of self-command, the disappearance of civilizing inhibitions, the incontinence, and the inability to recognize or interact 

with loved ones tear at the heart of spouses, children, and 

friends. It is not easy to love in the same way a person who both 

is and is not really there. 

Even those who believe in the redemptive power of suffering have a hard time saying anything good about a condition that 

renders the sufferer impervious to gaining any insight or improvement from his troubles and burdens. And at the end, there 

is no possibility for farewells, for reconciliations, for anything 

more than the harsh reality of death modified by a relief that the 

ordeal is finally over. Despite these hardships, many loving families continue to care for those who have been given to them to 

love—loyally, steadfastly, often heroically and without much outside support—continuing to benefit as best they can the life that 

the person they love still has. It is no wonder that this activity 

takes its toll, both mental and physical, on the family caregivers, 

many of whom are often quite elderly and infirm themselves and 

many of whom become depressed or sick in other ways during 

what can be up to a decade of giving care. 

Generalizations, of course, are always risky. As with the patients, so different families will cope differently with their calling 
DILEMMAS OF AN A GING S OCIETY │ 45

to care, depending on temperaments and character, previous patterns of family closeness and mutual assistance, and available 

economic resources and social support. Families that have ever 

felt close and supportive will be ready to do their utmost to care. 

Not only devoted spouses, but also adult children of an affected 

parent often take on the task of long-term care. Here the sense 

of loss can be partially offset by a sense of satisfaction derived 

from the giving of needed care, as well as from honoring the 

commitment to maintain the dignity and modesty of the patient 

as much as possible through the illness and its depredations. 

Occasionally, however, this sense of commitment can develop into a guilt-ridden urge to do and give more than is reasonable or to protect the patient against all change. Guilt and stress 

afflict even the most devoted, strong, and resourceful families, 

who today frequently find themselves in a bind, especially when 

adult women try to care for their enfeebled parents or in-laws 

while holding down jobs and caring for their own small children. 

The decision to move Mom from her home into an assisted living facility, or Dad from the spare room in our house to the nursing home is, for such families, a wrenching decision, and the 

sense of betrayal that devoted spouses and offspring feel on such 

occasions is often much to their credit. But when home caregiving threatens the basic well-being of the rest of the family, institutional care often becomes the wisest choice under bad circumstances. Attentive physicians and social service providers can 

help the family weather all stages of the decline by advice, encouragement, medical interventions, and the recruitment of support services for the patient and respite-care for the caregivers. 

Finally, there are the decisions that must be made, ranging 

from simple matters such as the use of ancillary medications to 

weighty choices such as the use of “heroic measures” or lifesustaining remedies. Choices that were simple and obvious early 

in the course become more problematic as the disease worsens, 

and ultimately heart-wrenching in their implications in the terminal phase. Close contacts between a devoted physician, other 

professional caregivers, and the caregiving family can help family 

members make their decisions conscientiously and thoughtfully, 

with due regard for the life reaching the end of this grim illness. 
46 │ TAKING CARE

But no one should pretend that this is anything but anguishing 

for almost everyone involved.

IV. AGING AND THE COMMON GOOD 

Looking broadly, we seem to be on the cusp of an historically 

unprecedented situation, both in the degree of care that elderly 

individuals will need and in the proportion of society’s resources 

that will have to be devoted to such care. Medicine’s success in 

combating many acute illnesses has enabled us to live long 

enough to suffer from various age-related chronic illnesses. For 

many, longer, healthier life is enjoyed at the price of longer, later 

periods of enfeeblement and disability. At the same time, our 

preoccupation with individual self-fulfillment has weakened 

many intergenerational attachments, and the privileged place of 

gainful employment and career advancement in our notions of 

self-worth has diminished the time available for and the value we 

place on caregiving. 

It was one thing to say that families should be responsible 

for care of their aged relatives in an historical period when life 

expectancy was 60 or 70 years of age and the period of dependency was limited. But it is quite another when a period of dementia could stretch out ten years, the last five of which require 

nonstop nursing care. Moreover, the old social system that took 

care of aged family members was dependent largely on the uncompensated labor of women; there are extremely few families 

today that could provide this level of support (by modern standards) without help from other social institutions or social programs. And, as we have seen, many families are struggling, especially women, who continue to bear the greatest burden of care 

for the elderly, while also in many cases providing for growing 

children and working outside the home in order to help make 

ends meet. 

We cannot pretend that either families or society as a whole 

will have unlimited resources, particularly as the age structure of 

our population continues to change, with more elderly persons 

and fewer young workers. We will have to make hard choices between competing goods, both as families and as a nation. For ex-
DILEMMAS OF AN A GING S OCIETY │ 47

ample: Should Medicare continue to cover every expensive new 

medical technology, and if not, on what basis should the public 

set limits? Should families accept inferior professional care for 

treasured elders to ensure adequate resources to buy a home or 

send children to college? Should we mandate that individuals 

with an annual income above a certain threshold purchase longterm care insurance in order to socialize the risk of dependence? 

These are not questions that we can address in substantive detail 

in this inquiry. But they are the kinds of questions that we must 

keep in mind as we think about the ethics of caregiving for those 

elders who need it, including the ethical dilemmas of deciding 

when to continue and when to forgo medical treatment for persons with dementia (the main subject of the analysis that follows). As we think about the meaning of aging and the moral 

dilemmas that arise at the bedside, we cannot ignore the practical 

realities that arise for society as a whole or the need to articulate 

and pursue some shared vision of the common good. 

Of course, it is always best to state one’s aspirations in the 

positive, in terms of what we hope to achieve—such as a society 

where aging has meaning, where death seems like the fitting conclusion to a life well-lived, and where we help one another from 

generation to generation. But there is also a wisdom in seeing 

clearly what we hope to avoid, especially in situations where perfection is impossible and where some hardship is inevitable. And 

here three points seem worth stressing in relation to aging and 

the common good. 

First, we must avoid two errors or extremes: On the one 

hand, we must erect firm and permanent safeguards against certain inhuman “solutions” to the challenges of caring for the dependent elderly—such as active euthanasia or the promotion of 

assisted suicide, solutions that define a category of persons as 

“life unworthy of life” or as persons deserving of abandonment 

and beyond the scope of our care. On the other hand, we must 

avoid allowing long-term care for the elderly and medical care in 

general to crowd out every other civic good—such as educating 

the young, promoting human excellence in the arts and beyond, 

and providing for our common defense. We must never betray 

our elders, but we must also recognize that we cannot (and 

should not) always do everything conceivable on their behalf. 
48 │ TAKING CARE

Second, we must avoid two crises of caregiving: The first is 

the danger that some old people will be abandoned or impoverished, with no one to care for them, no advocate to stand with 

them, and inadequate resources to provide for themselves. The 

second danger is the complete transformation of caregiving into 

labor, creating a situation where people’s basic physical needs are 

efficiently provided for by “workers,” but their deeper human 

and spiritual needs are largely ignored, because those with the 

closest ties are unable or unwilling to be with them. 

Finally, we must avoid (or to some degree reverse) the fullscale medicalization of old age, both in our outlook and in our 

institutions. We increasingly see old age as both a bundle of 

needs and problems demanding solution and as a time of life 

whose meaning is largely given in terms of being and staying 

healthy and fit. This outlook has created discontent with the lifecycle itself, produced an insatiable desire for more and more 

medical miracles, created the illusion that we can transcend our 

limitations and that death itself may be pushed back indefinitely. 

More deeply, this outlook has engendered, at least in some individuals, the illusion that independence is in fact the whole truth 

about our lives, without giving full regard to those attachments 

and obligations that bind and complete us. We do not beget or 

rear ourselves, and neither do our children. At every stage of life, 

we belong together, in sickness as in health. Forgetfulness of 

these truths quickly converts independence into loneliness, especially for the old. 

In the end, there is no “solution” to the problem of aging, at 

least no solution that a civilized society could ever tolerate. 

Rather, our task is to do the best we can with the world as it is, 

improving what we can but especially avoiding as much as possible the greatest evils and miseries of living with old age: namely, 

the temptation of betrayal, the illusion of perpetual youth, the 

despair of frailty, and the loneliness of aging and dying alone. In 

the chapters that follow we will attempt to begin this task, first, 

by outlining shortcomings in the current approach and then by 

sketching an ethics of best care for the patient now here. 
DILEMMAS OF AN A GING S OCIETY │ 49

 

ENDNOTES 

1 Manton, K. G. and Gu, X. L., “Changes in the Prevalence of Chronic Disability 

in the United States Black and Nonblack Population Above Age 65 from 1982 to 

1999,” Proceedings of the National Academy of Sciences of the United States of America 98: 

6354-6359, 2001. 

2 Health, United States, 2004, Center for Disease Control/National Center for 

Health Statistics, table 27. 

3

 Hogan, C., et al., A Statistical Profile of Decedents in the Medicare Program, Washington, DC: Medicare Payment Advisory Commission, 2000. Available online at 

http://www.cdc.gov/nchs/hus.html. 

4 “Getting Older, Staying Healthier: The Demographics of Health Care,” Testimony of James Lubitz, Acting Chief, Aging and Chronic Diseases, Statistics 

Branch, National Center for Health Statistics, Centers for Disease Control and 

Prevention, before the Joint Economic Committee, U.S. Senate, July 22, 2004. 

Available online at http://jec.senate.gov/_files/Lubitztestimony.pdf. 5 Older Americans 2004: Key Indicators of Well-Being, Federal Interagency Forum on 

Aging-Related Statistics. Available online at http://www.agingstats.gov. 6 U. S. Census Bureau, 2005, Estimates of the Resident Population by Selected Age Groups 

for the United States and States and for Puerto Rico: July 1, 2004. Available online at 

http://www.census.gov/popest/states/asrh/SC-est2004-01.html. 7 U.S. Census Bureau, 2004, U.S. Interim Projections by Age, Sex, Race, and Hispanic 

Origin, Table 2a, “Projected Population of the United States, by Age and Sex: 

2000 to 2050.” Available online at http://www.census.gov/ipc/www/usinterimproj.

8 U.S. Bureau of the Census, Census Population Reports, P25-1130 (Middle Series of 

Projections), as quoted in Enid Kassner and Robert W. Bectel, Midlife and Older 

Americans with Disabilities: Who Gets Help? A Chartbook, AARP Public Policy Institute, 1998, p. 7. 

9 Alzheimer’s Association, “Statistics about Alzheimer’s Disease,” http://www. 

alz.org/AboutAD/statistics.asp (accessed August 24, 2005). 10 U.S. Census Bureau, 2005, State Interim Population Projections by Age and Sex: 

2004–2030, Table 3, “Ranking of States by Projected Percent of Population Age 

65 and Over: 2000, 2010, and 2030.” Available online at http://www.census.gov/ 

population/www/projections/projectionsagesex.html. 11 Steuerle, C. E., and Van de Water, P., “Long-Run Budget Projections and Their 

Implications for Funding Elderly Entitlements,” in Altman, S., and Shactman, D., 

eds., Policies for an Aging Society, Baltimore, MD: Johns Hopkins University Press, 

2002, p. 82. 

12 “Chronic Conditions: Making the Case for Ongoing Care,” September 2004 

update, Johns Hopkins University Partnership for Solutions, 

http://www.rwjf.org/files/research/ChronicConditionsChartbook 9-2004.ppt 

(accessed August 24, 2005). 
50 │ TAKING CARE

 

13 Binstock, R., Case Western Reserve University, presentation to the President’s 

Council on Bioethics, Washington, D.C., June 24, 2004, available online at 

http://www.bioethics.gov. 

14 Lynn, J., Sick to Death And Not Going to Take It Anymore! Berkeley, CA: University of California Press, 2004, p. 13.

15 Ibid., p. 21. 

16 Lynn, J. and Adamson, D. M., “Living Well at the End of Life: Adapting 

Health Care to Chronic Illness in Old Age,” Rand Corporation White Paper, 

2003, p. 5. 

17 Ibid., p. 9.

18 National Family Caregivers Association. 2000 “How Many Caregivers Are in 

the U.S.?” Available online at http://www.thefamilycaregiver.org/who/ 

comp_survey.cfm (accessed August 24, 2005). 

19 Administration On Aging. 2003. “Family Caregiving.” Available online at 

http://www.aoa.gov (accessed August 24, 2005). 

20 Lynn, Sick to Death, p. 15, citing Kassner and Bectel, Midlife and Older Americans 

with Disabilities. (For the latter, see endnote 8.) 21 National Family Caregivers Association, “Caregiving Statistics,” 

http://www.thefamilycaregiver.org/who/stats.cfm (accessed August 24, 2005). 22 Schulz, R., and Beach, S. R., “Caregiving as a Risk Factor for Mortality: The 

Caregiver Health Effects Study,” Journal of the American Medical Association 282: 

2215-2219 (1999); Kiecolt-Glaser, J. K., et al., “Chronic Stress Alters the Immune 

Response to Influenza Virus Vaccine in Older Adults,” Proceedings of the National 

Academy of Sciences of the United States of America 93: 3043-3047 (1996). 23 National Aging Information Center, Aging In The Twenty-first Century, U.S. Administration on Aging. Washington, DC: Government Printing Office, 1996. 24 Institute for Health and Aging, University of California, San Francisco, Chronic 

Care in America: A Twenty-First Century Challenge. Princeton, NJ: Robert Wood 

Johnson Foundation, 1996. 

25 Hooyman, N. R. and Kiyak, H. A., Social Gerontology, Boston, MA: Allyn and 

Bacon, 1996. 

26 Feldman, P. H., “Labor Market Issues in Home Care” in Fox, D. M. and 

Raphael, C. eds., Home-Based Care for a New Century, Malden, MA: Blackwell Publishers, 1997. 

27 National Council of State Boards of Nursing (2002) National Council Licensure Examination-Registered Nurse/Practical Nurse (NCLEX-RN and NCLEXPN) examination statistics. Statistics from years 1995-2002. 28 American Hospital Association. June 2001. “TrendWatch.” Available online at 

http://www.hospitalconnect.com/ahapolicyforum/trendwatch/twjune2001.html 

(accessed August 22, 2005). 

29 May, W. F., “The Virtues and Vices of the Elderly” in Cole, T.R. and Gadow, 

S., eds, What Does It Mean To Grow Old?: Reflections from the Humanities, Durham, 

N.C.: Duke University Press, 1950, p. 50. 30 Ibid., pp. 51-61. 

31 Moody, H. R., Aging: Concepts and Controversies, Thousand Oaks, CA: Pine Forge 

Press, 2002, p. 4.

32 May, “The Virtues and Vices of the Elderly,” pp. 56-57.
DILEMMAS OF AN A GING S OCIETY │ 51

 

33 Cicero, De Senectute [On Old Age], Harvard Classics, Paragraph 8. 

http://www.bartleby.com/9/2/1.html (accessed August 24, 2005). 34 Grant, W. B. “Year 2000 Prevalence of Alzheimer Disease in the United 

States” Archives of Neurology, 61: 802-803, 2004; author reply 803. 35 Hebert, L. E., et al., “Alzheimer Disease in the US Population: Prevalence Estimates Using the 2000 Census” Archives of Neurology 60: 1119-1122, 2003. 36 Alzheimer’s Association website. 

37 US Census Bureau, July 1, 2004 estimates. 

38 See Hebert et al., 2003, op. cit. 39 Sloane, P. D., et al., “The Public Health Impact of Alzheimer’s Disease, 2000-

2050: Potential Implication of Treatment Advances,” Annual Reviews of Public 

Health 23: 213-231, 2002.

2 

The Limited Wisdom of Advance Directives 

As the American population ages, the dilemmas and obligations 

of making caregiving decisions for incapacitated patients—

including decisions about when to initiate, forgo, or cease potentially life-sustaining treatments—will only become more widespread and more acute. As we described in the previous chapter, 

more people will experience longer periods of dependence, including years of mental incapacitation. Deciding the best course 

of medical care during this extended period of debility will typically fall to surrogates—including family members and friends, 

health care professionals and social workers, and sometimes state 

guardians called upon to speak for those without proxies or 

courts called upon to adjudicate cases in which surrogates disagree. If we fail to think ahead about what we want done and 

what we owe to those who can no longer speak for themselves, 

we are more likely to make the necessary decisions in a state of 

excessive confusion and crisis. But if we plan ahead thoughtlessly 

or unwisely, we may in fact hamper efforts, when the time arrives, to provide the kind of care that we will then need and deserve. 

In the United States, our effort to think ahead about caregiving for incapacitated persons has taken shape mainly around the 

legal instrument of advance directives—both “instruction directives” that aim to dictate how one should be cared for and 

“proxy directives” that appoint others to make or execute caregiving decisions.* Advance directives came into existence at a 

particular time in our recent history, when people began to worry 

that the healer’s art on which we all rely to make life better could 

also be used in ways that seemed ambiguous or even harmful. 

 

* “Living wills,” about which we will speak at length, are a formal kind of advance 

instruction directive in which treatment preferences and instructions are put in 

writing. 
54 │ TAKING CARE

People worried especially that life-sustaining medical technologies might keep them alive for too long in what they perceived to 

be an undignified state, unrewarding to themselves and excessively burdensome to their loved ones. More generally, people 

worried that decisions might be made without sufficient regard 

to their own wishes and welfare. Advance directives were created 

as a way to alleviate these concerns. 

A series of high-profile court cases, from the Quinlan case of 

1976 to the Cruzan case of 1990, gave further credence to the 

value of leaving explicit instructions in advance about future 

treatment preferences, to be followed should one become incapacitated, and of formally designating a trusted surrogate to make 

medical decisions on one’s behalf should one no longer be able 

to decide for oneself. A consensus seemed to emerge, formally 

ratified in the federal Patient Self-Determination Act of 1990, 

that widespread completion of advance directives is the best way 

to ensure that medical care of the incapacitated near the end of 

life will conform to the wishes and protect the interests of the 

patient. More recently, the Schiavo case has led to renewed calls 

for living wills: If only she had made her treatment preferences 

clear in advance, some argued, everyone might have been spared 

the wrenching decisions, bitter court battles, and national drama 

that ensued. 

Of course, the Schiavo case—involving sudden injury to a 

young person, leading to a persistent vegetative state—is hardly 

paradigmatic of the social and ethical challenge facing our society. Vastly more typical is the patient suffering the gradual, degenerative decline toward incompetence and physical vulnerability associated with Alzheimer’s disease and other dementias. It is 

primarily for such persons that the value of advance directives 

has been especially urged. And yet, studies indicate that only a 

small percentage of Americans actually have formal advance directives, and those that exist are often vague or limited. Thus, in 

most cases, the burden of decision-making for incapacitated elderly patients still falls on caregivers making contemporaneous 

decisions. This should not be surprising. Indeed, as we will indicate, in most cases, it will be inevitable. 
THE LIMITED WISDOM OF ADVANCE DIRECTIVES │ 55 

Our goal in this chapter is to evaluate the wisdom and limits 

of advance directives—both instruction directives and proxy directives—building on the extensive work of numerous social scientists, legal scholars, medical experts, and bioethicists who have 

studied the subject in recent years.* We seek not only to gauge 

the effectiveness of advance directives in practice, but also to reflect on the broader significance of this approach to aging and 

caregiving. 

We state the conclusion in advance: The need to make decisions on behalf of others will only become more complicated as 

the American population ages; and it is misleading to think that, 

through wider use of living wills, competent persons will be able 

to direct their own care simply by leaving detailed instructions in 

advance. In fact, the evidence suggests that this “solution” to the 

problem of caregiving in an aging society is not only unrealistic 

but in several respects undesirable. Despite years of urging, most 

Americans do not have living wills, either because they would 

rather not think about their own dependence and death, or because they are wise enough to know that aging and dying sometimes mean placing oneself in the care of others. Not only are 

living wills unlikely to achieve their own stated goals, but those 

goals themselves are open to question. Living wills make autonomy and self-determination the primary values at a time of life 

when one is no longer autonomous or self-determining, and 

when what one needs is loyal and loving care. This paradox is at 

the heart of the trouble with this approach to caregiving. 

This does not mean that advance directives or advance care 

planning are useless or unnecessary. Proxy directives serve the 

wise and helpful purpose of putting one’s trust explicitly in the 

hands of loved ones who rightly bear the burden of providing 

care and making decisions. And advance care planning—not only 

 

* A list of these works appears in the Thematic Bibliography in the Appendix. We 

rely especially on two essays: one by Angela Fagerlin and Carl Schneider, 

“Enough: The Failure of the Living Will,” Hastings Center Report 34(2), MarchApril 2004, pp. 30-42, the other by Council Member Rebecca Dresser, “Precommitment: A Misguided Strategy for Securing Death with Dignity,” 81 Texas Law 

Review 1823, June 2003. We rely also on Prof. Schneider’s presentation to the 

Council on this topic, December 2, 2004 (transcript available online at 

http://www.bioethics.gov). 
56 │ TAKING CARE

about treatment preferences but also about housing arrangements and long-term care options—is a wise way to come to 

terms with the possibility of one’s own future dependence, at a 

stage of life when one can still participate in such planning. But 

in the end, no legal instrument can substitute for wise and loving 

choices, made on the spot, when the precise treatment dilemma 

is clear and care decisions are needed. Proxy directives can appoint decisionmakers, but only ethical reflection and prudent 

judgment can guide them at the bedside. And advance care planning can help prevent future decisions from being made in ignorance or in crisis. But such planning should always aim at providing the best care possible for the patient as he or she might be in 

the future, which means providing care for a person whose precise needs can never fully be known at the time such advance 

planning occurs. 

We acknowledge at the outset that even the most passionate 

advocates for living wills, the major focus of the analysis that follows, do not see these legal instruments as sufficient in themselves to address the needs of long-term care for those who suffer from age-related debility and dementia. But living wills serve 

as an example—perhaps a defining example—of how our society 

tends to approach the question of caregiving for the incapacitated, including and especially those with dementia. Seeing the 

limits of this legal approach clarifies the need for the kind of 

ethical approach that we offer in Chapters 3 and 4. Our critical 

analysis of advance directives is thus a prelude to the positive 

ethical guidelines that follow, focused not simply on discerning 

or executing an incompetent person’s prior wishes but on providing the best care possible for the person now placed in our 

care. 

I. DEFINING KEY TERMS 

In order to understand and evaluate advance directives more 

fully, we first need to define some key terms more precisely: 
THE LIMITED WISDOM OF ADVANCE DIRECTIVES │ 57 

Advance treatment directives are written or oral declarations 

by individuals capable of making informed and voluntary medical 

decisions. These declarations aim at shaping future care decisions 

if and when the individual loses the capacity for independent 

choice. Advance treatment directive (or just “advance directive”) 

is an umbrella term that encompasses both “instruction directives” and “proxy directives.” 

Instruction directives are written or oral statements expressing 

a person’s actual treatment preferences. Instruction directives can 

be quite specific, offering detailed descriptions of the medical 

interventions a person would want administered or withheld in 

different health situations. More often, they contain general 

statements, reflecting the person’s basic values, about the considerations that should guide those at the bedside. 

Living wills are written instruction directives. The earliest living 

wills typically expressed the person’s wish not to receive “heroic” 

or “extraordinary” measures if death was “imminent.” Later versions moved away from these vague terms and gave people the 

opportunity to refuse specific medical interventions, such as resuscitation, respirator care, antibiotics, or medical nutrition and 

hydration. Later versions were also designed to allow individuals 

to request, as well as refuse, particular types of treatment. Many 

living wills use standard legal forms that individuals can easily fill 

out at the direction of an attorney; others involve extensive narrative statements about one’s personal values and treatment preferences. 

Because relatively few people go through the formalities of 

completing a written advance directive, oral statements are the 

most common instruction directives available to caregivers. Relatives and clinicians sometimes consider a person’s past remarks 

about the kind of treatments or quality of life that would be acceptable as relevant information in making medical decisions on 

that person’s behalf. Like written instruction directives, oral directives vary in specificity and precision. They can also be more 

difficult to evaluate because the seriousness of the speaker’s intent is not always obvious. For example, statements made in re-
58 │ TAKING CARE

sponse to watching a film or visiting an ailing relative may or may 

not be well considered, and their significance for future caregiving decisions is often hard to judge. 

Proxy directives, frequently called “health care powers of attorney,” may also be written or oral. People making a proxy directive designate someone they trust to make medical decisions on 

their behalf and to act as their representative if they become incapacitated. People who would prefer one relative over another 

or a friend over a family member as their representative can use 

proxy directives to give effect to their preferences. Appointing a 

formal proxy can be especially valuable if a patient has no close 

family members, if the patient’s relatives are dispersed, or if relatives disagree among themselves. 

The two types of directives may be combined in a form that 

both sets forth the individual’s instructions about future care and 

designates a proxy to cope with the actual treatment situations 

that later arise.* 

II. THE EMERGENCE OF ADVANCE DIRECTIVES 

IN POLICY AND LAW 

Advance directives cannot be understood in the abstract, separate from the specific context in which they emerged or the legal 

and public policy environment in which they now operate. 

Viewed historically, advance directives originated largely as a response to novel clinical circumstances, in which more and more 

people whose basic mental and physical capacities had been 

permanently lost due to illness or injury could be kept alive for 

extended periods by medical intervention. Many people feared 

living indefinitely on machines in a profoundly diminished condition. They worried about burdening loved ones, existing as mere 

 

* Other terms that have been used in court cases regarding end-of-life decisions 

for incompetent persons, “substituted judgment” and “best interests” standards, 

will be defined and discussed in the next section. 
THE LIMITED WISDOM OF ADVANCE DIRECTIVES │ 59 

shells of their former selves, or bankrupting their family with the 

costs of long-term care. In response, people sought means to restrict the kinds of medical interventions they would accept 

should they become incapacitated, or to appoint trusted surrogates to make medical decisions armed with the necessary legal 

authority to forgo or stop unwanted interventions. 

Legal thinkers had a major role in promoting advance directives. A lawyer, Luis Kutner, described an early version of the 

living will in 1969. Expressing concern about medicine’s increasing ability to prolong life in what he called “a state of indefinite 

vegetated animation,” he suggested a written document for people seeking to avoid this fate.1 By preparing such a document, 

individuals could register in advance their consent to or refusal of 

proposed future treatments if and when they were unable to engage in independent decision-making. Kutner offered the living 

will as a device that would allow people to express religious or 

other beliefs relevant to medical care and would protect clinicians 

from potential liability for withholding or withdrawing lifesustaining interventions. 

During the 1970s, state legislatures and courts began to extend formal legal recognition to advance treatment decisionmaking. In 1976, California became the first of many states to 

enact a law designed to allow “natural death” or “death with dignity.” The California Natural Death Act declared that adult patients had the right to decide about life-sustaining medical procedures, including the right “to make a written directive instructing 

[their] physician to withhold or withdraw life-sustaining procedures in the event of a terminal condition.” 2 The directive would 

take effect if patients became unable to communicate their contemporaneous views on life-sustaining interventions. 

The first judicial support for basing such clinical decisions 

on a patient’s past wishes also came in 1976. Like Theresa Marie 

Schiavo, Karen Ann Quinlan was a young woman who had suffered severe brain damage and been diagnosed in a persistent 

vegetative state. Her family sought removal of the respirator that 

was believed to be sustaining her life. Worried about possible 

legal implications, physicians and hospital officials asked for a 

court ruling on the matter. 
60 │ TAKING CARE

In its opinion resolving the case, the New Jersey Supreme 

Court first noted that a competent patient would be free to refuse the respirator. It then engaged in the following thought experiment: 

We have no doubt, in these unhappy circumstances, that if 

Karen were herself miraculously lucid for an interval (not altering the existing prognosis of the condition to which she 

would soon return) and perceptive of her irreversible condition, she could effectively decide upon discontinuance of the 

life-support apparatus, even if it meant the prospect of natural death.3 

The court then determined that the onset of incapacity failed to 

eliminate the patient’s right to refuse treatment. Although she 

could then no longer assert the right for herself, her fatherguardian could do so on her behalf. And though there was no 

clear evidence indicating how Quinlan would choose, the court 

said physicians could forgo treatment if this was her family’s 

“best judgment” as to how she would exercise her right to decide.*

Legal authorities in other states soon joined California and 

New Jersey in recognizing the competent individual’s right to 

control future treatment. Today, all states have laws authorizing 

some form of advance directive.4 These laws vary in scope and 

coverage. For example, some state laws authorize directives for 

patients with any irreversible, incurable condition expected to 

cause death in the near future if treatment is forgone; other state 

laws adopt a narrower definition of eligible patients. Some state 

laws require an explicit statement from individuals seeking to refuse medical nutrition and hydration, while others include these 

measures in the general category of life-sustaining interventions 

that may be refused. Despite these differences, all of the existing 

statutes endorse the concept of advance treatment decisionmaking and protect from liability clinicians who act according to 

the terms of a properly made directive. The laws do not require 

 

* As it turned out and as some experts predicted in advance, Karen Ann Quinlan 

lived another 10 years after the “life-sustaining” respirator was removed, breathing on her own. 
THE LIMITED WISDOM OF ADVANCE DIRECTIVES │ 61 

individuals to make directives, however; nor do they represent 

the sole legally acceptable basis for forgoing life-sustaining 

treatment. 

Federal officials, too, have offered support for advance directives. In 1990, Congress enacted the Patient Self Determination Act (PSDA).5 The law requires hospitals, nursing facilities, 

and other health care organizations receiving Medicare and 

Medicaid funds to give adults under their care information about 

their rights under state law to make advance directives. If someone has an advance directive, the information must be noted in 

that person’s medical record. 

Finally, the United States Supreme Court has indicated that 

decisions about future care may be part of the individual’s constitutionally protected liberty interest. In Cruzan v. Director, Missouri 

Department of Health,

6 the Court considered the case of another 

young woman diagnosed in a persistent vegetative state. Nancy 

Cruzan had no living will or other advance directive, and Missouri state officials, as well as the state courts, blocked her family’s request to remove the feeding tube that was sustaining her 

life. The U.S. Supreme Court held that Missouri could prohibit 

cessation of treatment in the absence of Cruzan’s explicit and 

precise wish to refuse nutrition and hydration in her current circumstances. 

Writing for the majority, Chief Justice Rehnquist said that 

the Constitution permits (but does not require) states to demand 

clear and convincing evidence of an incapacitated patient’s wish 

to refuse life-sustaining treatment. This evidentiary demand was 

justified, he asserted, as “a procedural safeguard to assure that 

the action of the surrogate [decision-maker] conforms as best it 

may to the wishes expressed by the patient when competent.”7

The Court’s decision thus affirmed state policies that granted a 

privileged place to a patient’s prior wishes in making current 

treatment decisions, but also affirmed the right of individual 

states to establish their own criteria for deciding if and when 

those prior wishes are clear and thus operative in particular 

cases.* Many commentators believe that Cruzan imposes an obliga-

 

* At a later probate court hearing, witnesses offered more evidence on Cruzan’s 

previous statements and the judge ordered the feeding tube removed. 
62 │ TAKING CARE

tion on states to respect patients’ explicit advance treatment decisions, but since the case did not involve or address this question 

directly, the specific contours of any putative constitutional right 

are as yet unclear. 

The widespread embrace of advance treatment decisionmaking by many legal officials is traceable to the law governing 

medical decisions by competent patients. When courts began to 

encounter cases involving adult patients refusing life-sustaining 

interventions, they proceeded to examine the strength of the individual’s interest in controlling medical care and to balance that 

interest against competing considerations, such as the state’s interests in protecting life and the ethical integrity of the health 

professionals caring for the patient. Courts assigned significant 

weight to the patient’s interest in controlling care, on grounds 

that the patient must bear the physical and other burdens associated with life-prolonging measures. They also observed that in a 

pluralistic nation such as the United States, individuals have different views on the relative importance of survival and quality of 

life. Accordingly, very strong justification would be required to 

impose treatment against the competent individual’s wishes.8 

When patients could no longer choose their preferred treatment alternative, judges thought that the next best option would 

be to consult any previous instructions offered by the patient 

about life-sustaining measures. By giving priority to the individual’s former wishes, legal authorities could seemingly continue to 

respect the individual’s interest in controlling medical care. The 

courts also maintained that this approach would protect vulnerable patients from the risks of having their care determined by 

relatives and clinicians with their own concerns and agendas.9 

Nearly three decades after Quinlan and the first Natural 

Death Act, advance decision-making remains popular among legal officials, at least in the abstract. Courts regard the patient’s 

prior instructions as the preferred basis for treatment decisions, 

and both state and federal lawmakers have promoted this approach in legislation. Nevertheless, courts and legislatures also 

recognize the limits of advance treatment decision-making. The 

dearth of explicit directives, as well as the implementation problems discussed below, have compelled officials to develop and 
THE LIMITED WISDOM OF ADVANCE DIRECTIVES │ 63 

use other approaches to resolving questions about treatment for 

incapacitated patients. 

Besides legislation authorizing health care proxies to make 

decisions at the bedside, many states now have statutes recognizing family members as appropriate surrogates for incompetent 

patients lacking formal directives. Moreover, when advance directives are absent or fail to offer clear guidance to surrogates, 

two other approaches to clinical decision-making may come into 

play. These two approaches are based on traditional legal standards governing financial and personal decisions for legally incompetent persons (that is, minors and adults judicially determined to lack decisional capacity). Courts, policymakers, and 

medical ethicists sometimes apply these approaches in the medical setting as well. 

The “substituted judgment” standard combines information 

about a patient’s past with an evaluation of that patient’s current 

situation. As with advance directives, the goal is to determine the 

treatment alternative most consistent with the patient’s earlier 

values and preferences. But the substituted judgment standard is 

applied when the patient failed to issue a formal advance directive. The aim is to guess, here and now, what kind of treatment 

the patient would choose, were he (miraculously) to become 

competent just long enough to say what he would want done. To 

reach the substituted judgment in practice, caregivers must rely 

on more general information, such as the patient’s religious affiliation, cultural background, or attitudes toward medical care. 

Several difficulties can arise in applying the substituted 

judgment standard. Relatives and friends may report remarks and 

behavior that point in different directions or that support a range 

of treatment options. Questions may arise about whether a patient’s statement or action was meant as a deliberate and thoughtful indication of personal beliefs and values. Clinicians may wonder whether evidence about the patient’s past is being accurately 

reported. For these reasons, many believe that the substituted 

judgment standard should also include a close examination of the 

incapacitated patient’s existing condition and an evaluation of the 

benefits and burdens that would accompany a decision to administer or forgo treatment.10 
64 │ TAKING CARE

The “best interests” standard applies when information 

about the patient’s previous views fails to point to a particular 

treatment choice. Instead of focusing on evidence about the patient’s personal, subjective views, the standard adopts “the perspective of a ‘reasonable person,’ choosing as most people would 

choose for themselves.”11 

Relatives and clinicians applying the best interests standard 

focus on the patient’s present circumstances and consider the 

positive and negative effects of different treatment decisions. 

They examine matters such as pain, distress, and probability of 

treatment success. The best interests standard requires others to 

weigh and balance different dimensions of the patient’s situation, 

such as the burdens that administering or forgoing treatment 

would impose and the benefits of the extended life that treatment could provide. Because people value quality of life and survival differently, they may reach different conclusions about appropriate treatment under this standard.*

Nine years after its Quinlan decision, the New Jersey Supreme Court offered an extensive analysis of the dementia treatment situation, developing both the substituted judgment and 

best interests standards in its own specific directions. In re Conroy12 involved an elderly nursing home resident with severe dementia and other health problems. She was conscious but significantly impaired and had a life expectancy of about a year. Her 

nephew, her only biological relative, asked the court to authorize 

removal of her feeding tube. There was no advance directive in 

this case, but the nephew maintained that she had rejected medical interventions throughout her life and would never have permitted the tube to be inserted. 

 

* Different courts and experts have introduced their own variations and refinements on these terms—such as the “limited-objective standard” and the “pureobjective standard,” used in the Conroy case discussed below. In the end, however, 

the crucial distinction is between trying to discern what the person would want if 

the competent self of the past could speak and trying to do what is best for the 

incapacitated patient here-and-now. In some cases, these two standards of care 

lead to similar conclusions; in other cases, there is tension and ambiguity, resulting from different interpretations of a patient’s real wishes in the past and different judgments about a patient’s real interests in the present. 
THE LIMITED WISDOM OF ADVANCE DIRECTIVES │ 65 

In its ruling, the court set forth three standards to apply in 

cases like Conroy’s. First is the “subjective standard,” which applies when there is “clear evidence” that the patient would have 

made a particular treatment choice in her current circumstances. 

This evidence could be in the form of a living will; it might also 

be testimony about the patient’s verbal comments, conduct, or 

religious beliefs. The court found that the available information 

on Conroy’s prior preferences was insufficient to satisfy the clear 

evidence required under the subjective standard. 

Acknowledging that it will sometimes be impossible to know 

for certain what the patient would choose, the court described 

two standards (its own versions of substituted judgment and best 

interests) that would permit non-treatment when clear evidence 

of a patient’s prior wishes and intent is lacking. One is the “limited-objective standard,” which applies when, as in Conroy’s 

case, there is “some trustworthy evidence that the patient would 

have refused the treatment.” Under this standard, treatment may 

be forgone if “it is clear that the burdens of the patient’s continued life with the treatment outweigh the benefits of that life for 

him.” 

Conroy’s third alternative is called the “pure-objective standard.” This standard applies when there is no trustworthy evidence that the patient would have opposed treatment. This standard allows treatment to be forgone if two conditions are met: 

first, if “the net burdens of the patient’s life clearly and markedly 

outweigh the benefits that the patient derives from life,” and 

second, if “the recurring, unavoidable and severe pain of the patient’s life with the treatment [are] such that the effect of administering life-sustaining treatment would be inhumane.” 

In making its decision, the court recognized that the evidence of prior preferences might be more or less probative, depending on the specificity of the individual’s statements and the 

“remoteness, consistency, and thoughtfulness of the prior statements or actions.” Its version of substituted judgment, the limited-objective standard, restricts the effect that general evidence 

of the patient’s previous preferences may have on later care. 

When the evidence is less than clear, the court required decisionmakers to focus on the patient’s contemporaneous interests. 
66 │ TAKING CARE

By now, several other state supreme courts have joined the 

New Jersey court in limiting the impact of general evidence 

about a patient’s previous beliefs and values. When asked to resolve cases involving conscious dementia or brain-injured patients, these courts refused to authorize cessation of treatment 

based on evidence of a patient’s informal statements about medical care and quality of life.13 In the absence of a formal advance 

directive or relatively explicit verbal instructions, the courts based 

their decisions on the patient’s current welfare. 

Yet discerning a person’s true welfare is a complicated and 

often controversial legal and ethical question. For some, a person’s welfare is best served by always following the advance instructions given by the once-competent self, if such directions 

exist, even if doing so seems to harm the incapacitated person 

now here. For others, patient welfare hinges entirely on whether 

“the net burdens of the patient’s life clearly and markedly outweigh the benefits that the patient derives from life,” as the Conroy decision put it, suggesting that life with certain burdens is 

sometimes better not extended even if the life-sustaining treatment itself is not very burdensome. And for still others, serving a 

patient’s welfare means always benefiting the life the person still 

has, however diminished or burdened by debility and disease. 

So far, neither the courts nor policymakers have adequately 

investigated what patient welfare really means—a task that properly begins in ethical reflection, not legal decision-making. And 

indeed, the vast majority of cases regarding medical treatment of 

incompetent patients never come to court (or even to hospitalbased ethics committees). Those that do reach the courts do so 

only because of serious disagreements among the caregivers, because no family member or proxy is available to make decisions, 

or because hospitals and medical professionals are worried about 

liability. But these cases remain the minority. Most difficult cases 

will be resolved not in courts by judges but at the bedside by 

family, friends, and clinicians struggling with the question: What 

do we owe the person now in our care? Thus, reflection on what 

it means to benefit (or burden) incompetent and incapacitated 

patients will remain a grave necessity. Our legal procedures and 

arrangements surely influence these ethical deliberations, but they 
THE LIMITED WISDOM OF ADVANCE DIRECTIVES │ 67 

can never replace them and in some cases they might even limit 

or deform them. We shall explore the ethical dimensions of caregiving in the chapters that follow. But first we must evaluate advance directives on their own terms—by looking at the ethical 

principles that guide this approach to caregiving and the evidence 

of this legal instrument’s success or failure in practice. We focus 

first and primarily on advance instruction directives and living 

wills, the instrument that often gains the greatest enthusiasm but 

also presents the greatest problems. 

III. THE PRINCIPLES AND AIMS OF 

ADVANCE INSTRUCTION DIRECTIVES 

To its advocates, the instruction directive (or living will) seems to 

offer an effective way of resolving the dilemmas of end-of-life 

care by keeping the patient firmly in charge of his or her own 

medical treatment. Since decisions about continuing or 

withdrawing medical care near the end of life are always weighty, 

often agonizing, and sometimes highly contentious, the living will 

appeals to many people as a convenient procedural solution that 

can bypass the endless substantive debates about what would constitute “best care” for a particular incompetent patient. The living 

will is seen as a vehicle by which the patient, freely exercising his 

or her right to informed consent, can authorize the preferred 

course of treatment or non-treatment, thereby relieving other 

persons and institutions of the burden of deciding what to do in 

the hardest cases, where medical intervention or nonintervention is often the difference between living longer or dying sooner. 

Here, in greater detail, are the various purposes that living 

wills are thought to serve, both ethical and practical, and the 

various arguments offered in their favor. 

First, living wills serve and preserve self-determination. Since 

it is the patient who primarily receives the benefits and bears the 

burdens of any medical treatment (or non-treatment), most individuals wish if possible to remain active participants in important 

decisions regarding their own medical care. Facing the prospect 

of diminished mental competence in old age, many of us are un-
68 │ TAKING CARE

derstandably concerned that such medical decisions will increasingly be made for us by others without our participation. A proxy 

directive can help ensure that those decisions will always be made 

with input from or at the direction of those who care about us. 

But filling out a living will seems to provide a way whereby we

can direct what happens to us. We can make choices now, while 

still in possession of our faculties, that would determine the 

kinds of medical care we receive later in life, when those faculties 

may have diminished. In this way, the benefits and burdens of 

end-of-life medical care will be, in some measure, freely chosen 

by us rather than simply imposed from without. Each individual 

would remain—by this “remote control”—a self-determining 

agent, even when he can no longer directly or contemporaneously determine his own fate. 

Second, and continuing the theme of personal freedom, living wills provide an opportunity for people to express and give 

effect to their personal ideas about how they would like their 

lives to end. In his book Life’s Dominion, Ronald Dworkin argues 

that all of us have certain “critical interests,” that is, hopes and 

aims that lend coherence, integrity, and meaning to our lives. According to Dworkin, these critical interests rightly shape how we 

see the final chapter of our lives and the specific actions we take 

to ensure the personal ending we want. In particular, many of us 

hope to avoid dying in circumstances that are out of character 

with the rest of our lives or in ways we find unworthy or undignified. As Dworkin puts it, most people “want their deaths, if possible, to express and in that way vividly confirm the values they 

believe most important to their lives.”14 The choices inscribed in 

a living will can later safeguard these critical interests at a time 

when the patient is losing or has lost reflective control of his or 

her own life. 

Third, and more practically, living wills offer protection 

against maltreatment. Many people are concerned about the possibility of over-treatment or under-treatment at the end of life, 

when they are no longer in a position personally to accept or decline such care. We may be worried that life-sustaining measures 

will be pursued too aggressively, or we may be worried that too 

little will be done on our behalf, once we are unable to speak up 
THE LIMITED WISDOM OF ADVANCE DIRECTIVES │ 69 

for ourselves. The living will would seem to be a way to protect 

ourselves prospectively against the imposition of unwanted interventions or the premature cessation of all interventions. 

Fourth, living wills can relieve anxiety and facilitate choice. 

Decision-making about medical care near the end of life sometimes involves a painful dilemma: should the patient’s ailments 

be treated aggressively, with a view to maximizing longevity, or 

should the main focus be on insuring physical comfort, personal 

dignity, or the possibility of dying peacefully at home with loved 

ones? Rather than letting such decisions be made haphazardly or 

under duress, when the patient is no longer able to make his 

wishes known, the living will offers a way to adjudicate such tensions calmly and rationally, well in advance of the extreme circumstances in which they are likely to become manifest. 

Fifth, living wills can help our loved ones. Patients are often 

concerned that the painful burden of end-of-life medical decision-making will fall too heavily on the shoulders of their family 

members, friends, or other devoted caregivers. The living will 

recommends itself as a way for us, in advance, to give permission 

to our loved ones to continue treatment in some circumstances 

or to surrender in others, and thereby to ease their distress in the 

face of our decline and death. The concern addressed here is not 

that they might decide badly, but that the very responsibility to 

decide without explicit guidance would unnecessarily add to their 

anguish. Even if the course of treatment chosen is ultimately the 

same as what the family would have chosen uninstructed, the 

guidance provided by a living will can help the patient’s family (as 

well as the physician) make the painful decisions with a degree of 

confidence and closure. 

Sixth, living wills can protect financial resources. Many people approaching the end of life worry that, in the absence of written directives explicitly limiting medical treatments, a disproportionate share of their family’s resources could be squandered on 

costly medical interventions of limited value. They hope to avoid 

such a gross misallocation of resources, in which nearly all of 

their assets are spent down in the final months of life, when they 

would rather see that wealth used on behalf of their spouse, children, or grandchildren. The living will offers a way to prevent (or 

at least limit) excessive spending in the patient’s final phase of 
70 │ TAKING CARE

life, by instructing surrogates not to undertake certain costly 

treatments in circumstances where the benefits seem limited or 

where life itself has become so diminished, painful, or unrewarding that extending it seems undesirable. 

Seventh, living wills can decrease the risk of litigation. Physicians tend to welcome them not only as a guide to treatment but 

as a hedge against legal liability, should things turn out badly or 

relatives later regret what was decided. And prospective patients 

sometimes also want to forfend possible legal battles among family members who, when the time for treatment decision arrives, 

might disagree strongly about the preferred course of action. 

Finally—an indirect benefit—living wills can foster necessary communication. The process of preparing and executing a 

living will can be seen as a way to promote conversation among 

loved ones and with doctors about one’s values and preferences 

regarding illness, medicine, and dying. Regardless of whether the 

explicit directives contained in the document eventually guide the 

patient’s medical treatment, the mere exercise of preparing a living will can encourage greater thoughtfulness and communication between the patient, his family, and his doctor as to how he 

would like to be cared for. Preparing a living will might be, for 

many people, the first occasion to articulate for themselves and 

for those who might care for them just how they would like their 

lives to end or how they would like to be cared for until the end. 

These aims and purposes invite two different kinds of questions: First, how successful are instruction directives and living 

wills in meeting their own goals? Second, are those goals and 

purposes adequate to the task of caring well for those who cannot care for themselves? In the two sections that follow, we address these questions in some detail—first empirically, then ethically and philosophically. 

IV. LIVING WILLS IN PRACTICE: 

EVALUATING SUCCESS AND FAILURE 

Enthusiasm for instruction directives and living wills, as we have 

noted, has been widespread in many professional quarters. The 
THE LIMITED WISDOM OF ADVANCE DIRECTIVES │ 71 

idea of the living will has been enthusiastically endorsed not only 

by Congress and the courts, but also by state legislatures, the 

Veteran’s Administration, medical and legal associations, doctors, 

lawyers, ethicists, and patient advocacy organizations. A much 

cited 1991 article in the New England Journal of Medicine, for example, concluded that advance directives are desired by the great 

majority of patients and by the public in general, and that they 

can be easily completed in a 15 minute office visit with a physician.15 

Advance instruction directives and living wills have been 

available now for some decades, and enough evidence has begun 

to emerge to permit a preliminary assessment of the success or 

failure of this particular form of advance decision-making. A 

number of serious problems have been documented that call into 

question whether living wills or other instruction directives will 

ever achieve the goals set out by their advocates, at least for the 

vast majority of patients. 

1. Few people actually complete living wills. 

Despite the widespread acclaim for the idea of living wills, and 

despite more than thirty years of encouragement, studies show 

that most Americans do not have one. While the rate of completion of living wills did rise in the years right after the Cruzan decision and the Patient Self-Determination Act (PSDA), there remains a large gap between the number of Americans who claim 

to believe that living wills are a good idea and the number of 

Americans who actually have them. By 2001, despite more than a 

decade of efforts under the PSDA to increase the number of 

people filling out advance directives, the completion rate nationwide remained under 25 percent.16 Even the chronically or terminally ill do not seem to prepare living wills in substantially 

higher numbers; one recent study suggested that only about a 

third of dialysis patients had a living will, even though most of 

them thought living wills “a good idea.”17 

In their review of the literature, Angela Fagerlin and Carl 

Schneider point to a number of reasons why people fail to complete living wills: Some people say they don’t know enough about 

them; others find them too difficult to execute; others simply 
72 │ TAKING CARE

procrastinate or hesitate to discuss living wills with their doctors. 

Some people doubt they need a living will; others think that living wills are appropriate only for the elderly or infirm; many suspect that living wills do not affect how patients are treated. Some 

people are content to delegate decisions to family members, and 

some see living wills as incompatible with their cultural traditions 

or ethical beliefs, by putting too much emphasis on selfdetermination rather than solidarity or by implying that disabled 

persons are better off untreated.18

The problem does not seem to be lack of information. Many 

studies suggest that programs designed to increase people’s 

awareness of living wills do not appreciably increase the likelihood of their completing them.19 Instead, people—including 

many who claim to believe that living wills are a good idea—

seem to have substantial reasons for not completing a living will, 

and by and large they cannot be easily persuaded to change their 

minds. One recent study suggests, in particular, that most patients prefer not to put specific treatment preferences in writing; 

and even when individuals complete instruction directives, they 

typically prefer “to allow surrogate decision makers leeway in decision making.”20

It should be acknowledged that, under certain favorable 

conditions, relatively close-knit communities have succeeded in 

considerably raising the rate of completion of advance directives. 

The “Respecting Your Choices” initiative established in La 

Crosse, Wisconsin in 1993 was a large-scale education and implementation effort throughout the community that featured 

training and education sessions, standardized materials, and coordination between local hospitals and clinics to ensure that directives would be available when needed and would play a role in 

treatment decisions.21 A subsequent study reported that up to 85 

percent of the targeted patients had completed advance directives 

at the time of their deaths, and of these, most were recent (the 

average date of completion was a little more than a year before 

death), and 95 percent were available to doctors when needed. 

Nearly all the patients involved felt they had benefited from the 

process. Several other small, locally based initiatives have shown 

similar success, but the possibility of generalizing these efforts 
THE LIMITED WISDOM OF ADVANCE DIRECTIVES │ 73 

remains unknown.22 In 2004, Joan Teno and her colleagues reported on a 22-state survey of bereaved family members which 

estimated that 71 percent of the patients dying in these states had 

completed either a living will or durable power of attorney, many 

of them doing so soon before death. But the preponderance of 

evidence suggests that despite outreach and education efforts to 

increase the writing of living wills, the majority of Americans at 

present do not have them.23

2. People who complete living wills may not have clear treatment preferences 

and may not fully comprehend the clinical conditions they might face in the 

future. 

Even when people are prepared to execute living wills, it is 

doubtful whether they have clear and definite ideas about the 

treatment they would want if and when they become incapacitated. There are, to begin with, simply too many possible future 

situations that the patient must try to imagine, each with its 

unique combination of burdens, benefits, and risks, making the 

notion of “informed consent” long in advance of treatment a 

highly questionable one. And those patients who are tempted to 

reject certain kinds of future medical intervention (on the ground 

that they “wouldn’t want to live like that”) may not understand 

how short-term use of some of the same interventions could restore them to basic or even normal function. In many cases, 

people end up contradicting themselves in the instructions they 

leave, or contradicting their instructions when asked concurrently 

or subsequently what their real preferences are. As Fagerlin and 

Schneider suggest, most people find it difficult to accurately predict their preferences “for an unspecifiable future confronted 

with unidentifiable maladies with unpredictable treatments.”24 

Indeed, most people contemplating filling out a living will 

know very little about the various illnesses and treatments that 

might one day affect them, and they often rely for that information on severely limited discussion with doctors. Moreover, studies suggest that the specific preferences recorded in living wills 

depend a great deal on how the questions are asked; people often 

change their minds about what treatment they would want in any 

given scenario when the illnesses and interventions are described 
74 │ TAKING CARE

differently. Studies also suggest that patients’ individual preferences are often not very stable over time, meaning that a snapshot of those preferences frozen in a living will may not accurately reflect a person’s real past preferences when a future decision needs to be made on his behalf. A meta-analysis of several 

studies suggested that, over periods as short as two years, almost 

a third of preferences for life-sustaining treatment changed.25

Data from the Robert Wood Johnson SUPPORT study suggests that many patients filling out living wills are confused about 

what they are being asked to decide, and vague or misinformed 

about the purpose and effectiveness of the medical interventions 

they are being asked to choose among.26 More deeply, on such 

difficult life-and-death questions, patients may simply not have 

clear and delineable preferences that they can state authoritatively 

in advance. The healthy may incautiously prefer death to disability, but then change their minds when they are actually sick and 

find themselves on the precipice between life and death. There is 

in fact an extensive body of research showing how poor we are 

at predicting our own preferences and desires, especially in regard to choices far off in the future.27 This inability is likely to be 

acutely present here, since we have no experience deciding how 

and when to die. 

3. The living wills people complete often fail to convey treatment preferences 

clearly. 

Living wills range from short questionnaires that give room for 

only the most general answers, to elaborate charts that allow the 

individual to check off which particular interventions he would 

or would not want in a variety of possible circumstances, to 

lengthy “values histories” designed to elicit the patient’s overarching beliefs and core values, from which others are supposed 

to infer what medical treatment the patient would want if he ever 

becomes incapacitated. The shorter living wills offer families and 

clinicians very little specific guidance as to how to resolve actual 

treatment dilemmas. It is not very helpful, for example, to be 

told merely that the patient would prefer to forgo medical treatment “if the burdens of treatment outweigh the expected bene-
THE LIMITED WISDOM OF ADVANCE DIRECTIVES │ 75 

fits.” The more elaborate documents contain considerably more 

information about how the patient would like to be treated in 

specific scenarios. But unless the patient actually finds himself in 

one of the covered scenarios, that information may not offer 

adequate guidance as to how he should be treated. And given the 

complexity and particularity of every real-life clinical case—often 

involving co-morbidities, chronic conditions, novel treatment 

options, and complicated personal narratives—it is unlikely that 

the imagined scenario fits perfectly with the real-life one.28

There is a further complication. Studies show that patients, 

having completed relatively precise living wills, are often ambivalent about whether their written instructions should be followed.29 It is therefore questionable whether even the detailed 

living wills people fill out can be considered reliable or decisive 

guides to their actual treatment preferences. 

Fagerlin and Schneider argue that the short questionnaires 

convey too little specific information to be very useful, the elaborate scenario-based charts overwhelm the patient with specifics 

that he cannot comprehend, and the values histories, even if a 

patient could be induced to complete one, would not provide 

much clear guidance for health care decisions in concrete situations. As they conclude: “The failure to devise workable forms is 

not a failure of effort or intelligence. It is a consequence of attempting the impossible.”30

4. The living wills people complete often do not get transmitted to those making medical decisions. 

Even if a person were to have his clear preferences inscribed in a 

living will, in many cases the document itself or the information 

contained therein will not actually reach the people responsible 

for the incapacitated patient’s medical care. A living will signed 

years in advance may be misplaced or forgotten by the time it is 

needed. Most patients do not give their living will to their physician; and, even if they do, that physician may not be the one 

treating the patient by the time he has become incapacitated. 

One study found that, even when patients had completed living 

wills before being hospitalized, their medical charts contained 

accurate information about their directives only 26 percent of the 
76 │ TAKING CARE

time, and only 16 percent of the charts contained the actual 

form.31

One novel form of instruction directive has shown high 

rates of compliance and effectiveness: Physician Orders for LifeSustaining Treatment (POLST). First developed a decade ago in 

Oregon and now in use in fifteen other states as well,32 a POLST 

document (unlike a standard living will) takes the form of a 

signed doctor’s order; it is not completed by the patient, but by a 

doctor or nurse-practitioner after consulting with the patient or 

his surrogate. The POLST is a concise form containing specific 

medical instructions that can be acted on immediately by nurses, 

doctors, or emergency personnel; it may include “do not resuscitate” and “comfort measures only” orders, and it may indicate 

whether to administer CPR (cardio-pulmonary resuscitation), antibiotics, intravenous fluids, feeding tubes, artificial respiration, 

and other medical interventions. Unlike the living will, the 

POLST governs medical issues that are considered very likely to 

arise in the near term. According to its developers, it is really only 

suitable for those expecting to die within the year.33*

 

* Inasmuch as the POLST form is focused on decisionmaking in the short term, 

it cannot be regarded (and is not presented by its sponsors) as a living will in the 

full sense, viz., a set of instructions that a competent patient can fill out well before the time when he might suffer mental incapacitation. Moreover, the animating idea of the POLST program does not seem an appropriate principle for the 

prudent use of living wills: the POLST document was designed in the belief that, 

to be most effective, an instruction directive should be conveyed with the patient 

everywhere he goes in a simple, standardized form, already signed by a doctor, 

and capable of being implemented at once by any clinician who encounters it. Yet 

a living will that is so “effective” in this sense might well be too effective, too easy to 

act on quickly, when the family might wish to make care decisions more deliberately, in light of changing circumstances and new information. See the exchange 

of letters between Susan E. Hickman, et al., and Angela Fagerlin and Carl Schneider, “A Viable Alternative to Traditional Living Wills: A Response to ‘Enough: 

The Failure of the Living Will,’” Hastings Center Report (Letters to the Editor) 

34(5): 4-6, 2004.
THE LIMITED WISDOM OF ADVANCE DIRECTIVES │ 77 

5. Even when they are transmitted to the medical decisionmakers, living wills 

often have little effect on surrogate decisionmaking and little impact on the 

care incompetent patients actually receive. 

A recent study by Peter Ditto and colleagues set out to assess 

whether instruction directives or living wills are effective in improving the accuracy of surrogate decision-making.34 An experiment was performed involving competent outpatients aged 65 or 

older and their preferred surrogate decisionmakers (mostly 

spouses or children). All the patients completed a questionnaire 

asking whether they would want any of four life-sustaining medical treatments in nine different illness scenarios. Subjects in two 

experimental groups filled out scenario-based instruction directives and subjects in two other experimental groups filled out 

values-based instruction directives. Subjects in the control group 

filled out no advance directive at all. The surrogates were then 

divided into five corresponding groups: In the control group, the 

surrogates were asked to predict the patient’s preferences for the 

life-sustaining medical treatments in each of the illness scenarios 

without the benefit of an advance instruction directive. In the 

four experimental groups, surrogates made such predictions after 

reviewing the patient’s scenario-based or value-based written directive. Surrogates in two of the experimental groups also discussed the contents of the directive with the patient. The researchers then measured the accuracy of surrogate judgment in 

the various groups, by comparing the predicted preference with 

the preference actually expressed by the patient. 

Strikingly, what the researchers found in this study was that, 

compared to the control group, none of the interventions produced significant improvement in the accuracy of the surrogates’ 

judgment in any illness scenario or for any medical treatment. 

When spouses or children of elderly patients made surrogate 

“decisions” about medical treatment based only on their familiarity with the patient, their judgments were just as accurate as that 

of spouses and children who had read or read and discussed a 

detailed living will drawn up by the patient. In all five groups, the 

accuracy of surrogate decision-making was found to be about 70 

percent. 
78 │ TAKING CARE

In a companion study, some of the same researchers examined the effectiveness of instruction directives in improving the 

accuracy with which physicians could predict the treatment preferences of their older patients.35 What they found was that (a) family members generally predict patient preferences more accurately 

than physicians; (b) the accuracy of predictions by the patient’s 

primary care physician (that is, a doctor who knows the patient) 

was not significantly improved by reading either a values-based 

or scenario-based living will; but (c) hospital-based physicians 

(that is, doctors unfamiliar with the patient) could make more 

accurate predictions in certain scenarios if they had read the patient’s scenario-based living will. 

These studies call into question whether living wills are likely 

to have a significant impact on the medical care received by an 

incompetent patient, at least in cases where surrogate decisions 

are made either by relatives of the patient or by physicians who 

know the patient. This conclusion is borne out by several studies 

cited by Fagerlin and Schneider, such as one completed in 1998 

by Martin Goodman and colleagues,36 which concluded both that 

“few critically ill seniors have advance directives” and that “the 

level of care delivered to elderly ICU [intensive care unit] patients 

is not affected by the presence or absence of advance directive 

statements.” Another study suggests that, in roughly three out of 

four cases, “previously executed advance directives are not accessible when patients are admitted to hospitals for acute illness”;37

and yet another study gives evidence that incompetent patients 

frequently receive care that is inconsistent with their living will.38

In a recent study, Howard Degenholtz and colleagues found 

that completing a living will was in fact associated with a lower 

rate of in-hospital deaths, perhaps suggesting that living wills are 

effective at communicating patients’ preferences regarding lifesustaining medical treatments.39 But, as Joan Teno has pointed 

out, the mere correlation between having a living will and dying 

outside the hospital setting does not suffice to prove that the use 

of living wills causes a lower rate of hospitalization. It could simply mean that those who complete living wills have, on average, a 

stronger preference for dying at home than those who do not. 

Teno’s own research suggests that, the increased prevalence of 
THE LIMITED WISDOM OF ADVANCE DIRECTIVES │ 79 

advance directives notwithstanding, bereaved family members 

report many problems with the end-of-life institutional care received by their loved ones.40

6. The side-benefits of preparing living wills are uncertain. 

Over the years, responses to these general criticisms of living 

wills have yielded some alternative arguments in their defense. 

Supporters of living wills, conceding some of the limitations, argue that in particular cases, they remain appropriate and useful. For 

example, for competent people about to undergo risky medical 

procedures, living wills may serve as effective treatment guides. 

Or, for people who lack close friends or relations to whom they 

can entrust decision-making power, living wills offer an alternative to what might otherwise be impersonal and unsympathetic 

care. But advocates also argue that, even in cases in which the 

living will has no impact on treatment decisions, filling one out is 

a useful way to get people thinking and talking about end-of-life 

treatment preferences. Such conversations, they contend, may 

help doctors and proxy decisionmakers later on when they are 

asked to make decisions on the patient’s behalf. 

Living wills are also said to provide a measure of comfort to 

patients and their surrogates, whether or not their instructions 

are followed. Their existence can bolster the patient’s confidence 

that his wishes will be followed and relieve some of the stress 

and misery that beset family members compelled to make decisions about withdrawing life-support from a loved one. Even if 

the living will does not actually ensure that the patient’s preferences are accurately carried out, so advocates claim, its mere existence can help make the burdens of end-of-life care more bearable for all concerned. 

Needless to say, some of these alleged benefits are hard to 

measure. We know of little empirical research that either supports or undermines those claims regarding dementia patients.41

Besides, living wills might give much less comfort if people understood how ineffective they generally are in accomplishing 

their other stated purposes. 
80 │ TAKING CARE

V. CONCEPTUAL AND MORAL LIMITS 

OF CHOOSING IN ADVANCE 

In the previous section we considered a growing body of empirical evidence suggesting that living wills are encumbered with a 

host of practical problems that severely limit their capacity to realize the goals they were designed to achieve. Some of the practical problems could perhaps be mitigated by improved procedures: for example, longer doctor-patient consultations could be 

mandated, living wills could be updated more frequently, and so 

forth. But, in light of the many obstacles, there is little evidence 

that improved procedures of this sort would measurably enhance 

the effectiveness of the living will program. The practical value 

of living wills for the general population would seem to remain 

highly doubtful, even if we accepted the general principle behind 

them: the notion that individuals can decide long in advance (as 

able-bodied and competent persons) what is best for them if and 

when they become disabled and incompetent. But that principle 

is itself open to question, even apart from the practical problems. 

There are more fundamental difficulties with living wills—

conceptual and ethical—that cannot be overcome by merely procedural changes. 

As we have seen, one of the central goals of the living will is 

to preserve for the incapacitated patient the same measure of 

autonomy, self-determination, and freedom of choice that he or 

she enjoyed while still competent. The living will is based on an 

attractive idea: that the right of privacy in one’s own body—a 

right from which it follows that no patient should be subjected to 

medical treatment without his consent—ought to be respected 

even when the patient is no longer in a position to articulate his 

preferences. The living will aims to extend “informed consent” 

into the future by allowing the individual to articulate his values 

and wishes in the present. But there are serious reasons to doubt 

the wisdom of treating patient autonomy as the crucial guide for 

making end-of-life care decisions for patients who are, in fact, no 

longer autonomous but absolutely dependent on others for their 

care. 
THE LIMITED WISDOM OF ADVANCE DIRECTIVES │ 81 

A. The Problem of “Informed Consent” 

The living will, as distinguished from the durable power of attorney, binds a currently incompetent patient to limitations he imposed on himself in the past, when he was not able to take into 

account all the particular circumstances of his present situation. 

In the most detailed instruction directives, the person presumes 

to understand the personal and clinical details of an unforeseeable future, and in some cases the healthy self aims rather explicitly to decide whether life in a future diminished state is worth 

sustaining. But it is hard to see how prudent judgment and informed consent can operate so far removed from the real-life 

case in all its fine human detail and medical complexity. 

This problem is especially clear in those cases in which a living will written long ago requests that particular treatments be 

withheld that could benefit the patient here-and-now. In such 

cases, to honor the patient’s “autonomy” by carrying out his 

wishes as stated in his living will may actually be harmful rather 

than beneficial to the present patient. And since the incapacitated 

patient is unable to revise his preferences in light of vital new information, it is questionable whether carrying out his written instructions is really an exercise of informed consent at all. Informed 

consent usually means an agreement made in particular cases in 

light of current knowledge and well-understood facts. But for incompetent persons, informed consent is always impossible: the patient 

cannot understand the choices available or the knowledge needed 

to make them. To claim that the living will extends the right of 

free choice and self-determination to those who can no longer 

make informed choices seems like an illusory quest, since the 

written “choices” are imposed on individuals who are no longer 

free to change their minds. 

It would seem reasonable, in such cases, that those making 

treatment decisions on behalf of the incapacitated patient should 

be able to revise or supersede the instructions recorded in the 

living will, in light of new information unavailable at the time the 

living will was executed. But then the question becomes: By what 

standard should the surrogate’s judgment be governed when he 

departs from the patient’s explicit instructions? Should the surrogate attempt to conjecture what the incapacitated patient would 
82 │ TAKING CARE

have wanted, had he known what new circumstances would 

arise? Or should the surrogate give up on such speculations and 

simply be guided by a sense of what would constitute the best 

possible care for the patient here-and-now? 

These are surely hard questions, requiring substantive ethical 

judgments about what being a “benefit” to those entrusted in our 

care really means. The doctrine of “informed consent” is not a 

sufficient guide to the perplexities and obligations of ethical 

caregiving, and a person’s prior wishes, even when clearly expressed, should not be the only relevant factor in making caregiving decisions. We need to think foremost about the patient’s present welfare, and about our own role as moral agents making lifeand-death decisions for others. 

B. Prior Wishes and Present Welfare 

A challenging illustration of the dilemmas involved in caring for 

incapacitated patients can be found in an account by Andrew Firlik of an Alzheimer’s patient he called Margo, whom he described as “pleasantly demented.”42 Firlik, a medical student, visited Margo regularly, and she was cheerful and pleased to see him 

but never knew his name. Margo enjoyed reading but “her place 

in the book jumped randomly from day to day.” She enjoyed music, seemingly unaware that she was listening to the same song 

over and over. She enjoyed painting, but always painted the same 

simple pastel shapes day after day. Firlik eventually concluded 

that, “despite her illness, or maybe somehow because of it, 

Margo is undeniably one of the happiest people I have ever 

known”: 

There is something graceful about the degeneration her mind 

is undergoing, leaving her carefree, always cheerful. Do her 

problems, whatever she may perceive them to be, simply fail 

to make it to the worry centers of her brain? How does 

Margo maintain her sense of self? When a person can no 

longer accumulate new memories as the old rapidly fade, 

what remains? Who is Margo?43
THE LIMITED WISDOM OF ADVANCE DIRECTIVES │ 83 

Using this account of life with dementia, both Ronald 

Dworkin44 and Rebecca Dresser45 ask us to imagine the following 

scenario: Suppose that Margo executed a living will when she was 

first diagnosed with Alzheimer’s, asking that no treatment be 

given to her if she contracted another serious life-threatening illness. Now Margo contracts pneumonia, which could probably be 

ameliorated with antibiotic treatment. Should her living will be 

honored and the antibiotics withheld? Or does her present contentment make her continued life worthwhile and override her 

past misgivings about living with dementia? 

Cases like this raise the most profound questions about how 

much it is given to us to control or orchestrate the shape of our 

lives in advance, and whether we always possess the wisdom or 

authority to dictate what is best for a future self. Defenders of 

the principle of autonomy will argue that we have a right, if we 

wish, to escape dying under circumstances that are inconsistent 

with the character of the lives we chose to live. They argue, with 

Dworkin, that people “want their deaths, if possible, to express 

and in that way vividly to confirm the values most important to 

their lives.” This means allowing individuals to decide, by means 

of living wills, whether life-sustaining medical interventions 

should be abandoned when one becomes mentally incapacitated. 

Dworkin suggests that it would be an “unacceptable form of 

moral paternalism” to disregard a patient’s written instructions 

on the ground that he or she still derives some benefit from life 

in a diminished state. In Dworkin’s terms, the patient’s “critical 

interests” (her long-term desire to lead a life of “integrity” and 

“coherent narrative structure”) outweigh her “experiential interests” (her apparent enjoyment of life with dementia). 

Certainly many of us, contemplating the prospect of disability or dementia from the perspective of vigorous physical and 

mental health, are tempted to reject with horror the possibility of 

a lengthy period of mental and physical incapacity at the end of 

our lives. Yet, as we have seen, patients who complete living wills 

sometimes do so without full awareness of what life would be 

like in all the various circumstances that might arise. They do not 

and cannot know in advance whether the experience of old age 

with dementia will still seem valuable to a future self, even 

though it is not the life they would freely choose. Can individuals 
84 │ TAKING CARE

really know in advance that such a life would be worse than 

death? And, more fundamentally, do we possess a present right 

to discriminate against the very life of a future self, or—even 

more problematic—to order others to do so on our behalf? 

Giving absolute priority to a patient’s earlier choices in such 

cases may seem injurious to the patient in his or her current state; 

and the significant possibility that a living will was executed 

without full and necessary knowledge means it lacks the moral 

weight of an autonomous and contemporaneous choice. Moreover, as Rebecca Dresser has put it, “A policy of absolute adherence to advance directives means that we deny people like Margo 

the freedom we enjoy as competent people to change our decisions that conflict with our subsequent experiential interests.”46

A person’s prior wishes and instructions surely count in any 

judgment about providing care. Simply ignoring the patient’s 

written instructions would give too little regard to the person’s 

former beliefs about the shape and character of a good life. But 

giving those wishes trumping power may force caregivers to 

forgo doing what is best for the person who is now entrusted to 

their care; as moral agents themselves, caregivers cannot simply 

do what they were told but must also try to do what is best. 

Margo’s apparent happiness would seem to make the argument 

for overriding the living will morally compelling in this particular 

case. 

But we also need to think about what to do for those patients with dementia who are not quite so happy, whose lives 

seem filled with difficulty and distress. Does a person’s claim on 

us for treatment, even if she has a living will requesting that 

treatment be forgone, depend entirely or primarily on the person’s experiential well-being? Or are there also “interests” that 

are not critical or experiential but ontological—the interest of a 

living person in being alive, in being cared for as an equal member of the community, even in a profoundly diminished and often unhappy condition? These larger considerations take us beyond autonomy to consider the meaning of human dependence 

and, in our case, the meaning of being a caregiver (and carereceiver) for persons with grave disabilities and advanced dementia. It forces us to ask: Who is this person with dementia now 
THE LIMITED WISDOM OF ADVANCE DIRECTIVES │ 85 

before us, and what do we owe her even or especially when her 

life seems so diminished? 

C. Personal Identity and the Obligations of Care 

How we care for Margo—or any person with dementia, with or 

without a living will—will depend in great measure on how we 

see her identity: Is she the same person she was when competent, 

with the same rights and interests? Or is she a quite different person, with possibly different rights and interests? Philosophically 

puzzling as it is, we are probably inclined in different moments 

to answer “yes” to each of these questions. 

One way to think of Margo as still the same person is to focus on the rational will—on the person as one who deliberates 

and chooses. If Margo is the same person she was, and if twenty 

years ago she chose to enact certain directives about her future 

care, then one might argue that those directives should now be 

honored, even if they no longer seem to further the care she 

most needs. Yet this way of picturing her as the same person 

over time seems, actually, to ignore the significance of time. Instead, it focuses on a single moment in Margo’s existence—the 

moment her living will was enacted—and gives it governance 

over all future moments. As her capacity to choose diminishes, 

she can no longer change her instructions; she is stuck forever in 

that timeless point that is her earlier choice. 

If we find this puzzling, as well we might, and if we doubt 

that Margo’s instructions from twenty years ago are really the 

best guide to the care she now needs, we may be tempted to say 

that she is no longer the same person. It may seem that the only 

way to get out from under the tyranny of that timeless moment 

of choice is to say, however paradoxically, that she is now someone different—a new person with different needs, ways, and satisfactions. We can understand the attractiveness of such a position; for it does, at least, free us to care for Margo in a way that 

genuinely serves what are now her best interests. It takes seriously both the person she now is and the obligations we have to 

her. 

Understandable as this perspective may be, perhaps it is possible to affirm her continuity of identity over time, yet to do so in 
86 │ TAKING CARE

a way that allows us to take seriously her previously expressed 

wishes without giving them trumping power. Margo is still the 

same person she once was because the body—the fact that human beings have and are bodies—is so important to our understanding of personal identity. Throughout life—both in times 

when our reason and will are fully developed and active, and in 

times when they are undeveloped or quiescent—we are physically present in embodied form as the unity of body and psyche. 

This is true even (as in the case of dementia) when our reason 

and will have been compromised by disease. It is this continuing 

bodily presence that is fundamental to being human and that is 

the locus of all personal presence. Those who embraced or held 

her hand years ago and who do so again today are sure that they 

are embracing Margo. 

From this perspective, therefore, we want to affirm that 

Margo remains one and the same person, even as she slides ever 

deeper into dementia. That helps us understand why, of course, 

we would not want to ignore preferences she had expressed earlier in life*—or, more important, the character she had developed 

over time and the things she had cared about. We should respect 

these central aspects of her person and her story, even if they are 

not always decisive for the care we think best for her when she is 

afflicted with dementia. 

But although she is still the same person, she is also greatly 

changed; for one of the truths about embodied beings is that 

they change over time. The body may reach an optimal moment 

when reason and will are at their height, but it is also characterized by beginnings and decline—by change, development, and 

decay. What Dworkin terms our “critical” interests, important as 

they are to all of us, are themselves only part of that story of the 

person’s development. We would do less than justice to the person Margo is—an embodied person who grows, flourishes, and 

declines in time—were we to designate one moment as the deci-

 

* If, as some people speaking loosely allege, Margo is an altogether different person, then Margo’s earlier living will should be regarded as irrelevant to the care of 

her “replacement.” Worse, on this theory of altered identity, to refuse treatment 

for the “new person” solely because Margo so instructed us years ago would be 

culpable negligence. 
THE LIMITED WISDOM OF ADVANCE DIRECTIVES │ 87 

sive moment for all decisions about her care, as if an instruction 

directive enacted twenty years earlier could be an adequate expression of her needs and desires here and now. 

There is, of course, another way out of this identity conundrum. We could say that Margo was once a person but is no 

longer. This would not so much solve as dissolve the problem; 

for it would suggest that no “person” is present any longer in the 

bodies of those stricken by dementia, that Margo’s living body is 

simply the corpse in which the real Margo once lived. To take 

this course, as some have done in recent years, would involve a 

radical transformation in our civilization’s understanding of what 

it means to be human. It would sanctify reason and will (and 

qualities such as consciousness and self-awareness) as the qualities which, alone, give one membership in the community of care. 

It is far better, we think, to take seriously the truth that, whatever 

else they may be, human beings are embodied beings in time. 

Each person’s life is a story marked at first largely by potential of 

what is yet to come, then by flourishing of the organism’s most 

characteristic capacities, and finally by decline. But none of these 

moments in the story is the person. On the contrary, the person 

is simply the one whose story it is. 

What began in this chapter as an attempt to trace our society’s search for a largely procedural solution to the problem of 

caring for those who become incapacitated—a solution that respects patients’ wishes and prevents mistreatment by others—

has led us to realize that procedural solutions cannot free us 

from hard philosophical and ethical questions. Indeed, we need 

to cultivate in ourselves a deeper sense of our solidarity in body 

and in time—a richer sense of what it means to be dependent on 

others and to care for those who can no longer make choices for 

themselves. 

The depiction of identity that we have given—of personal 

identity as continuous throughout the trajectory of the body’s 

life, but of a continuity that incorporates countless changes—

does not provide concrete answers to any of the difficult treatment decisions that caregivers must make when caring for dwindling patients. A great deal will always depend on the clinical and 

personal particulars of each case, and much of this cannot be 

fully anticipated in advance. But this understanding of the human 
88 │ TAKING CARE

person does suggest two insights that should guide the ethical 

reflections that follow. First, those who have lost some 

characteristically human cognitive capacities are still human beings 

with identities and still worthy of our care. Second, however much we 

understandably cling to our autonomy and dread our decline, dependency is very often part of the normal course of human life. 

In the end, living wills can never relieve us of the responsibility we have to care for one another as best we can, even in difficult circumstances such as those dementia creates. Nor should 

we want such relief from responsibility; for our aim is not simply 

to execute instructions given us, but to develop a true ethic of 

caregiving. Writing a living will requires facing up to the possibility of decline, debility, and death, but it does so by seeking to exert more self-mastery than may be possible at a time of life when 

accepting limits and trusting others are often the virtues most 

needed. In the very effort to spare loved ones the excessive burdens of care, we may send a message that we do not trust them 

enough to put ourselves in their hands. 

Of course, trusting others requires the presence of others 

who are trustworthy—surrogates who are willing to care, able to 

make wise decisions, and willing to let go when the time comes 

to do so. The comparative virtue of proxy directives is that they 

embody such trust, even if they do not, in themselves, provide 

ethical guidance about what to do in the face of those dilemmas 

that devoted proxies ultimately face. And the comparative virtue 

of advance care planning, as distinct from the more narrowly focused living will, is that it invites individuals and families to face 

up to the dependencies of the future without necessarily dictating 

every medical decision. At its best, such planning aims instead at 

being better prepared for the unknown dilemmas ahead. In our 

final section, we look beyond living wills to examine, briefly, 

these other ways of thinking in advance, so that we might understand their genuine virtues and inherent limits. 
THE LIMITED WISDOM OF ADVANCE DIRECTIVES │ 89 

VI. BEYOND LIVING WILLS: 

THE WISDOM AND LIMITS OF PROXY DIRECTIVES 

AND ADVANCE CARE PLANNING 

The proxy directive does not ignore the significance of our desire 

to participate (in advance) in shaping treatment decisions made 

for us at a time in the future when we can no longer participate 

concurrently. Precisely by naming someone to serve as our 

proxy, we take that desire seriously. At the same time, however, 

this approach emphasizes less the importance of selfdetermination and correspondingly more the importance of solidarity and interdependence. It invites us to move toward our final days and years not in a spirit that isolates our free decisions 

from the networks of those who love and care for us but, instead, in a spirit that entrusts our dying to those who have supported us in our living. It enlists them to stay by our side, to the 

very end. 

In this way, the proxy directive is more in accord with our 

ideals of family and community life than is the instruction directive. Indeed, if we try too hard to solve all problems in advance 

by stipulating directions for our care, we may cut off the family 

discussion that is needed when difficult caregiving decisions must 

be made. It is precisely such discussion that forces us all to take 

seriously the continued presence of a loved one who is no longer 

able to participate in decision-making. The very activity of seeking the best possible care pushes us all toward deepened understanding and concern. This does mean, of course, that a proxy 

directive places greater burdens on family members than does an 

instruction directive (one of whose aims, as we have seen, is precisely to relieve family members of such stressful burdens). But 

to care about one’s family is to accept such burdens, and we may 

well wonder whether families would really be better off without 

the trials of fidelity that aging and dying often present, or 

whether we would want to live in families if families did not need 

to care. 

To be sure, there are some, especially the very elderly, who 

may have no family or who may outlive all their obvious proxy 

choices. And there may be others who, because their family has 
90 │ TAKING CARE

been a source of pain rather than support, may feel unable to entrust themselves to the care of a family member. In some of 

these cases a living will may seem the better course to take. But 

such cases should also spur us all to consider more seriously how 

to expand the boundaries of communal solidarity—recapturing, 

for instance, the deep significance of friendship, or finding in 

community or religious institutions others to whom we can entrust decisions about our care. We should not too readily acquiesce in a vision that isolates us in the time of our dependency, or 

a vision that rests on the false notion that individuals can precisely determine and manage every fact of their lives until the 

very end. 

The limits of controlling one’s own future does not mean 

that individuals and families should not plan for the future together. The shortcomings of living wills should not obscure the 

real advantages, both to the patient and to his family, of thinking 

ahead about some of the dilemmas that might arise as one’s capacities diminish, through conversation and prudent planning 

before an illness like dementia takes its course. Such conversation might focus not so much on the specific medical treatments 

a patient would or would not want as on other aspects of aging 

and dying that might matter even more to the person: for example, being steadily cared for during the long period of illness, 

having the company of one’s family and friends at the end, making peace with God, having a chance to say good-bye to a particular person, dying in a quiet and dignified setting, sparing one’s 

family additional anguish, and other considerations not strictly 

medical. Is the patient concerned more about pain at the end of 

life or about loneliness? About mental deterioration or about 

physical dependency? What are his deepest fears, what are her 

fondest hopes? Knowing how the person feels about these matters, at a stage of life when true collaboration is still possible, can 

give both guidance and comfort to family members who must 

eventually make wrenching decisions for the patient, including in 

many cases the decision to stop treatment and accept death. 

Such conversations do not make the decisions, of course, 

but enrich the perspective of the decisionmakers. For in the end, 

the best laid plans always require devoted and prudent caregivers, 
THE LIMITED WISDOM OF ADVANCE DIRECTIVES │ 91 

who know what it means to benefit the lives of those in their 

care, and who possess the character to care well even in the 

darkest times. Ethical caregiving, in all its aspects, is the order of 

the day. It is therefore also the subject of the remainder of this 

report. 

 

ENDNOTES 

1 Kutner, L., “Due Process of Euthanasia: The Living Will, a Proposal,” 44 Indiana Law Journal 539, 1969. 2 California Health & Safety Code sec. 7186 (West 1976) (repealed 2000). 3 In re Quinlan, 355 A. 2d 647 (N.J. 1976). 4 For detailed information on state laws, see Meisel, A. and Cerminara, K., The 

Right to Die: The Law of End-of-Life Decisionmaking. (3d ed.) New York: Aspen Publishers, 2004 (Supp. 2005). 

5 42 U.S. Code Service sections 1395i-3, 1395l, 1395cc, 1395bbb (2005). 

6 497 U.S. 261 (1990). 

7 Ibid., p. 280. 

8 See, for example, McKay v. Bergstedt, 801 P.2d 617 (1990). 9 Dresser, R. and Robertson, J., “Quality of Life and Nontreatment Decisions: A 

Critique of the Orthodox Approach,” 17 Law, Medicine and Health Care 234, 1989. 10 Buchanan, A., and Brock, D., Deciding for Others: The Ethics of Surrogate Decision 

Making, New York: Cambridge University Press, 1989. 11 New York State Task Force on Life and the Law, When Others Must Choose, New 

York: New York State Task Force on Life and the Law, 1992, p. 33. 

12 486 A. 2d 1209 (N.J. 1985). 

13 Dresser, R., “ Schiavo’s Legacy: The Need for an Objective Standard,” Hastings 

Center Report 35(3): 20-22, 2005. 14 Dworkin, R., Life’s Dominion: An Argument About Abortion, Euthanasia, and Individual Freedom, New York: Knopf, 1993, p. 211. 15 Emanuel, L. L., et al., “Advance Directives for Medical Care—A Case for 

Greater Use,” New England Journal of Medicine 324: 889-895, 1991. 16 Eiser, A. R., and Weiss, M. D., “The Underachieving Advance Directive: Recommendations for Increasing Advance Directive Completion,” American Journal of 

Bioethics 1: W10, 2001. 17 Holley, J. L., et al., “Factors Influencing Dialysis Patients’ Completion of Advance Directives,” American Journal of Kidney Disease 30: 356-360, 1997. 18 Fagerlin, A., and Schneider, C. E., “Enough: The Failure of the Living Will,” 

Hastings Center Report 34(2): 30-42, 2004. 19 Eiser, A. R., and Weiss M. D., op. cit. 20 Hawkins, N. A., et al., “Micromanaging Death: Process Preferences, Values, 

and Goals in End-of-Life Medical Decision Making,” Gerontologist 45: 107-117, 

2005. 
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21 Hammes, B. J. and Rooney, B. L., “Death and End-of-Life Planning in One 

Midwestern Community,” Archives of Internal Medicine 158: 383-390, 1998. 22 Garas, N., et al., AHRQ Evidence Reports. Chapter 49. Health Services Technology/Assessment Texts. Available online at http://www.ncbi.nlm.nih.gov/ 

books/bv.fcgi?rid=hstat1.section.62397 (accessed September 5, 2005). 23 See Teno, J. “Advance Directives: Time to Move On,” Annals of Internal Medicine 141: 159-160, 2004; Teno J. et al., “Family Perspectives on End of Life Care,” 

Journal of the American Medical Association 291: 88-93, 2004. 24 Fagerlin, A., and Schneider, C. E., “Enough,” p. 33. 25 Ibid., p. 34.

26 Teno, J., et al., “Do Advance Directives Provide Instructions That Direct 

Care?” Journal of the American Geriatric Society 45: 508-512, 1997. These researchers 

found directives from 569 patients out of 4804; few of those contained any instructions and some of the ones with instructions showed clear lack of understanding. 

27 Fagerlin, A., and Schneider, C. E., “Enough,” p. 34. 28 Brett, A. S., “Limitations of Listing Specific Medical Interventions in Advance 

Directives,” Journal of the American Medical Association 266: 825-828, 1991. 29 Sehgal, A., “How Strictly Do Dialysis Patients Want Their Advance Directives 

Followed?” Journal of the American Medical Association 267(1): 59-63, 1992. 30 Fagerlin, A., and Schneider, C. E., “Enough,” p. 35. 31 Morrison, R. S., et al., “The Inaccessibility of Advance Directives on Transfer 

from Ambulatory to Acute Care Settings,” Journal of the American Medical Association 274: 501-503, 1995. 32 For information about POLST, see http://www.polst.org, a website sponsored 

by the Oregon Health Sciences University’s Center for Ethics in Healthcare. 

33 “Dr. Tolle helped design the POLST form. ‘A POLST form is not for every 

adult. A POLST form is for someone who their doctor wouldn’t be surprised if 

they died in the coming year.’” Quoted in “A Different Kind of Living Will,” 

Ivanhoe Broadcast News, June 27, 2005. Available online at http:// 

www.ivanhoe.com/channels/p_channelstory.cfm?storyid=11510 (accessed September 5, 2005). 

34 Ditto, P. H., et al., “Advance Directives as Acts of Communication: A Randomized Controlled Trial,” Archives of Internal Medicine 161: 421-430, 2001. 35 Coppola, K. M., et al., “Accuracy of Primary Care and Hospital-Based Physicians’ Predictions of Elderly Outpatients’ Treatment Preferences With and Without Advance Directives,” Archives of Internal Medicine 161: 431-440, 2001. 36 Goodman, M. D., et al., “Effect of Advance Directives on the Management of 

Elderly Critically Ill Patients,” Critical Care Medicine 26: 701-704, 1998. 37 Morrison, R. S., et al., op. cit. 38 Danis, M., et al., “A Prospective Study of Advance Directives for LifeSustaining Care,” New England Journal of Medicine 324(13): 882-888, 1991. 39 Degenholtz, H. B., et al., “Brief Communication: The Relationship Between 

Having a Living Will and Dying in Place,” Annals of Internal Medicine 141: 113-117, 

2004. 
THE LIMITED WISDOM OF ADVANCE DIRECTIVES │ 93 

 

40 Teno, J. et al., “Family Perspectives on End-of-Life-Care at the Last Place of 

Care” Journal of the American Medical Association 291: 88-93, 2004. The authors conclude that “many people dying in institutions have unmet needs for symptom 

amelioration, physician communication, emotional support, and being treated 

with respect.” 

41 But see Martin, D. K., et al., “A New Model of Advance Care Planning: Observations from People with HIV,” Archives of Internal Medicine 159: 86-92, 1999. 

This study presents some evidence that advance care planning helped people 

prepare for death. 

42 Firlik, A.D., “Margo’s Logo” (letter), Journal of the American Medical Association

265: 201, 1991. 

43 Ibid.

44 Dworkin, R., Life’s Dominion, pp. 221-222. 45 Dresser, R. “Dworkin on Dementia: Elegant Theory, Questionable Policy,” 

Hastings Center Report 25(6): 32-38, 1995. 46 Ibid., p. 35. 

3 

The Ethics of Caregiving: General Principles 

In the years ahead, the challenges of caring well for elderly persons—including and especially those suffering from debility and 

dementia—will become more apparent and more urgent. As 

Chapter 1 suggested, we may face a genuine caregiving crisis—

with more needy individuals and fewer available caregivers, with 

growing costs of long-term care and fewer workers to support 

social programs, with longer periods of diminished function and 

the ever-present temptation to neglect or abandon those in need 

of constant attention. Looking ahead, it is thus incumbent upon 

us to ask: What constitutes good care, what makes it possible, 

and how can we become or support good caregivers? 

In a certain sense, the answer is obvious: good care is possible when there are people willing to care, able to care, and having 

resources to care. Good care is possible when family members 

and friends make the sacrifices necessary to be caregivers, when 

health care professionals and social workers tend to the real 

needs of their patients, and when society does not leave families 

to fend entirely for themselves. But the obligations of caregiving 

often confront us with some hard human questions: What does 

good care require in the face of worsening physical and mental 

deterioration? What is the relationship between good care and a 

good death? What should we do when the duties of caring for 

our father or mother with dementia make it much harder to care 

for our young children? What moral aims and ethical principles 

should guide caregivers-in-action? 

The following analysis attempts to address these questions in 

some detail, in an effort to offer guidance to families, doctors, 

and policymakers striving to care well for vulnerable persons as 

they approach the end of life. In this chapter we take up general 

ethical considerations, looking for principles and guidelines; in 

the next chapter we consider concrete cases, looking to display 
96 │ TAKING CARE

ethical caregiving in action. We will pay primary attention to the 

ethical dilemmas of caring for persons with dementia, and especially to the wrenching decisions about life-sustaining treatment 

that arise at the bedside when persons with dementia get sick in 

other ways. 

Before turning to the ethics of caregiving, we need to make 

sure that we understand who the caregivers are and that we recognize the many social, economic, and institutional factors that dictate 

whether good care is truly possible. Although the Council’s special responsibility requires us to develop sound ethical analysis 

and evaluation, we recognize the limited value of such ethical reflection in the absence of adequate caregiving institutions and 

devoted caregivers with the character and resources to stay the 

course. 

For many aging persons, and notwithstanding the many 

changes in the American family over the past few decades, family 

is still the primary home of care and caregiving. Most men and 

women who marry still take an oath of fidelity to care for one 

another “in sickness and in health, for better and for worse.” 

Such fidelity—not only between spouses, but between parents 

and children—has surely been tested in the modern world: by 

divorce, geographical separation, smaller families, and a culture 

that often does not value caregiving as much as other pursuits 

and occupations. Often, in families, no one is willing, able, or 

available to care; and many people, by the time they reach old 

age, have no family at all. Moreover, even within the most devoted families, there are often disagreements about what best 

care requires for a person in need, or about who should shoulder 

which caregiving responsibilities. But despite all the challenges 

faced by and within families, the family remains the anchor of 

caregiving for most elderly persons, who age and die as members 

of families. 

Family caregivers cannot care well in isolation, however. 

Without the support of community institutions and social programs, even the most devoted family caregivers often face burdens too great to be shouldered alone; they want to stand with 

their dependent loved ones, but they often cannot stand by 

themselves. Such community and social support can take many 

forms: government funded or faith-based “respite care” pro-
T HE ETHICS OF CAREGIVING │ 97 

grams that give caregivers a needed rest; federal laws that protect 

caregivers who leave work temporarily to care for a dependent 

family member; state programs that support a flexible menu of 

long-term care options, including intermediate options like elder 

day-care and in-home nursing. Without the support of community and society, even the most devoted caregivers can break under the weight of their task, with all its physical, psychological, 

and economic demands. And even the most ethical caregivers 

can contemplate less-than-ethical actions, often out of understandable desperation. 

Of course, every society is both imperfect and limited: it 

never treats everyone as well or as fairly as it should, and it must 

balance many civic goods and obligations. But in no small measure, the kind of society we are will be measured in the years 

ahead by how well (or how poorly) we care for those elderly persons who cannot care for themselves; by whether we support the 

caregivers who devote themselves to this noble task; and by 

whether we sustain a social world in which people age and die in 

humanly fitting ways—always cared for until the end, never 

abandoned in their days of greatest need. 

This will require the creation and preservation of good caregiving institutions. We will need reliable and decent professional 

caregivers; humane design of long-term care institutions, preserving as much as possible some of the warmth and comfort of 

home; effective coordination of long-term care with hospitals, 

rehabilitation centers, and faith-based or spirit-sustaining communities. Building and preserving good institutions requires valuing those who make them good—not only the doctors who treat 

dementia patients, but also the nurses who provide daily care, the 

social workers who explain and coordinate services, and the 

nurse’s aides who clean up after incontinent residents. Much 

caregiving involves hard physical work; it involves being sensitive 

to the needs of people who often cannot make themselves understood; it involves many tasks that individuals would not likely 

choose for themselves, even if they perform them with great 

equanimity. If we want good caregivers, we need to honor and 

reward caregiving, rather than seeing it as unskilled or undignified labor. This is a moral challenge as well as a social and economic one. 
98 │ TAKING CARE

Good will and good character alone do not make willing 

caregivers into good caregivers, however. Competence also matters a great deal—not only for doctors, nurses, and other caregiving professionals, but also for volunteer family caregivers who 

must learn how to care well in matters small and large. It requires 

learning how to prevent bedsores; how to bathe frail and often 

resistant individuals without causing accidents; how to navigate 

the complicated and sometimes unsupportive health care bureaucracy; how to maintain important yet difficult daily routines. 

Even in the best circumstances—with loving family members and competent doctors ready to care, with neighbors and 

community institutions ready to support caregivers, with ample 

resources in place to pay for needed care—we still face difficult 

decisions case-by-case, from individual to individual. And precisely because real-life situations often fall short of the ideal—

with no intimates willing or able to care, with no money available 

to pay for care, and with overburdened professional caregivers 

incapable of attending to every patient’s every need—we need 

ethical guidelines to protect those without advocates from being 

mistreated or forgotten. 

Without question, the challenge of long-term care is social, 

economic, and medical: good caregiving is not possible without 

good social policies, adequate economic resources, and competent doctors and nurses who see caregiving as a vocation. But 

good care also—and perhaps first of all—requires seeing what 

the good for vulnerable patients really is, especially in the most 

difficult circumstances. Without some ethical compass to guide 

us, the effort to provide social and economic supports for caregiving will lack a clear foundation and guiding purpose. And 

unless we can learn to discern the humanly good or best possible 

in individual cases, we may lack the wisdom to develop the largescale social programs and small-scale community supports that 

are surely necessary to sustain caregivers in their important work. 

Of course, the best caregivers, both professionals and volunteers, do not “practice care” by engaging in the kind of searching 

ethical analysis that follows. They act largely on tacit moral beliefs and in light of experience, guided by love, or standards of 

professional practice, or great reservoirs of compassion and skill. 

Good caregivers often “muddle through” wisely, guided by the 
T HE ETHICS OF CAREGIVING │ 99 

moral intuitions and moral compass that help them do the best 

they can for those entrusted to their care, often in circumstances 

of great difficulty. But it is also the case that such moral intuitions do not develop out of nowhere; they are shaped by the 

ethos of the society in which we live, by the general culture and 

specific guidelines that govern the practice of medicine, and by 

the role models who serve as our teachers and our guides. 

It is precisely the novelty of our aging society and the gravity 

of the challenges it raises that may tempt us or force us to reexamine what we have long taken for granted about what we owe 

vulnerable patients—such as the fundamental belief that every 

person is “worthy of care.” And although unearthing our foundational ethical principles for discussion is perhaps unnecessary 

and even dangerous in normal times, doing so becomes necessary when the norms themselves are called into question. It is 

precisely because caregivers are not saints that we need to ensure 

that certain moral boundaries are firmly in place and that the 

necessary freedom to act exists within a social world where certain kinds of actions are unthinkable because they are ethically 

out of bounds. And it is precisely because of the heartache that 

accompanies seeing those we love suffer the ravages of dementia 

that we need to guide compassion with ethical reason, so that our 

compassion does not unwittingly lead us astray. 

One final, introductory note: In the discussion that follows, 

it is important to keep in mind the complicated relationship between the legal and the ethical. In many areas of life, we are legally free to do what we should not do, and we are not legally 

obligated to do what we should do. In a liberal society like ours, 

we tend to prohibit only the gravest evils and only those evils 

that directly compromise the rights of others; we aim to give individuals maximum possible freedom, under law, to make moral 

choices for themselves. This is as it should be, given the complexity and particularity of most moral choices and the grave 

evils that usually accompany excessive efforts by the state to dictate the personal lives of its citizens. But the wisdom of limited 

government does not mean that free choice is the only or highest 

moral aim of our society, or that public bodies, like this council, 

should remain silent or neutral on the most profound moral 

questions. As a society, our aim should be justice as well as free-
100 │ TAKING CARE

dom, and the pursuit of justice begins by trying to see clearly 

what we owe one another, including what we owe our most vulnerable members at the end of their lives. This is, to begin with, 

an ethical question—one seen most vividly as we contemplate 

what best care means in particular cases. 

In seeing the limits of advance instruction directives, as we 

did in Chapter 2, we do not turn our backs on the partial usefulness of legal instruments or propose a legal revolution, though 

we can imagine small-scale changes in the law that might improve caregiving. But we do need to recognize that our existing 

procedures affect our moral sensibilities, by teaching us that selfdetermination is the primary value in need of defense, rather than 

instructing us in the solidarity necessary to make good decisions 

on behalf of those entrusted to our care. For this task, we need 

an ethics of caregiving, one that guides how we think about the 

law without offering any easy answers about what the best legal 

procedures might be or should be. Our focus in the next two 

chapters, therefore, is squarely on the ethical, and when we speak 

of aims, limits, and obligations, we do not speak directly to the 

issue of what should be promoted, limited, or required by law. 

I. DEFINING THE SUBJECT 

What in the broadest sense do we mean by “the ethics of caregiving”? 

To think about ethics is to think about the goals we pursue 

for ourselves and others (the good); about the kind of actions we 

do (the right); and about the sort of people we hope to be (our 

character). Each of these aspects of ethics is important, and each 

makes its claim upon us. 

In whatever we do, we should strive for worthy and estimable goods, evaluating our actions as better or worse means to 

achieve those goals. At the same time, we should assess our actions not only as means to desired ends, but also in terms of the 

character of the actions considered in themselves: their conformity to our moral duties that prescribe certain actions as obligatory, and their adherence to our moral norms that proscribe certain actions as wrong (even if performed in pursuit of true 
T HE ETHICS OF CAREGIVING │ 101 

goods). In addition, we cannot discern rightly the goods we 

should seek or actions that are obligatory or forbidden unless we 

strive to become the sort of people who can see well and truly. 

To think about growing old draws us into all three aspects of 

ethical thinking, especially when we consider the moral significance of dementia. We need to ponder the shape of a good life, 

and especially the relation between flourishing and decline within 

a good life. We need to think about right and wrong (or better 

and worse) ways to age, and especially our duties toward those 

who, even if they once cared for us, must now be almost entirely 

the recipients of our care. And we need to cultivate within ourselves and our society virtues such as courage, justice, and fidelity—courage as patients in facing the progressive loss of our 

powers, justice as caregivers in meeting the needs of those who 

can no longer reciprocate, fidelity in preserving the ties that bind 

us to one another, resisting the temptations of despair and abandonment. 

To think about care is to think of how we care about others 

and care for others. We learn to care about others usually because 

others have cared about us—first in the family and then with 

friends and others among whom we live. We are marked by 

those near attachments and, therefore, we inevitably and properly 

care about some people more than others. Those special attachments are always limited, however, by our duty not to harm or 

do injustice even to strangers. Caring for others takes many 

forms, some quite simple and others very demanding. It surely 

includes medical care, but it is much broader than that. In particular, caring for those who suffer from dementia may mean 

helping in the activities of daily living, making treatment decisions on their behalf, or simply being humanly present in order 

to honor the dignity and meaning of the demented person’s past 

and present life. 

All caring for others, and certainly its most demanding 

forms, requires acts of giving. Most often in human life we both 

give and receive care—in ways too complicated ever to be perfectly reciprocal. Parents give care to their children in ways that 

can never be fully repaid; yet in most cases, they are happy to do 

so. Children “repay” the care they received only when they later 

give care to their own children. Yet increasingly in our world, 
102 │ TAKING CARE

adult children also are summoned to care for their aging parents. 

The cycle of giving and receiving from generation to generation 

comes full circle—not as the realization of a contract (which 

could never capture the complex reciprocities of family life) but 

in the mutuality and fidelity that are both goods we seek and virtues we hope to develop. 

In certain respects the task of those who care for persons 

suffering from dementia is more demanding than that of parents 

raising children. For parental sacrifice is oriented toward developing and increasing the capacity of the child, a goal that brings 

meaning and fulfillment to the nurturing parents. But caring for 

those with dementia means selfless and uninterrupted giving in 

the face of irreversible decline. For many, this kind of sacrifice 

on behalf of needy persons at the end of their lives, however difficult, is also a source of great fulfillment. Providing long-term 

care sometimes yields concerted engagement among family 

members, improved recognition of priorities, genuine expressions of love, and in some cases a certain “completion” of the 

cycle of relationship and reconciliation. Such care is often, simply, good in itself, an expression of human beings at their best, 

standing with one another. But it is also true that in days of 

struggle, some caregivers may wonder whether sacrificing so 

much on behalf of such a diminished life is really “worth it,” or 

even whether helping to sustain life in such a diminished state is 

really a benefit to the diminished person. 

To think about this task is the ethical challenge facing our 

society, a responsibility which the Council hopes to help meet in 

offering this report. A first step, to which we now turn, is to 

think about the threefold human context of caregiving—about 

the worth of human lives, about the meaning of human deaths, 

and about the capacities and limits of modern medicine. 

II. HUMAN CONTEXTS OF CAREGIVING: 

LIFE, DEATH, AND MODERN MEDICINE 

Caregiving is an activity that invites reflection about who we are 

as human beings—about how we live, how we die, and how we 

use medical knowledge and technique to sustain life and resist 
T HE ETHICS OF CAREGIVING │ 103 

death. We can hardly do justice to such momentous subjects in 

the present report. But without some attention to these deeper 

human matters, it will be difficult—for both policymakers and 

actual or prospective caregivers—to think clearly and well about 

both the nature and the limits of caregiving in the coming decades. 

A. The Worth of Human Lives 

The increasing incidence of dementia is forcing—or inviting—us 

to think in particular about the meaning of human worth. What 

makes a diminished life worthy of our care, or worthy of life at 

all, or worth the resources society expends to sustain it? 

These are not congenial questions, especially for a society 

rooted in ideas of the equal dignity and incalculable value of 

every human individual. Such questions are also foreign to the 

ethical outlooks of physicians and health care professionals, who 

are taught to devote themselves to the well-being of their patients regardless of their infirmities and disabilities. Indeed, they 

regard each patient as worthy of their ministrations simply and 

precisely by virtue of being in need of them. Patients have 

“worth” in the eyes of the doctor because they are human beings 

who have presented themselves as patients. Ethical medicine 

serves health and life, it does not judge life’s quality—and certainly not as a criterion for treatment eligibility. 

Nevertheless, public discussions today of end-of-life issues 

frequently speak of “quality of life,” implying that certain “poor” 

qualities of life might disqualify one from a claim to treatment or 

from further prolongation of life. Questions about the worthiness of expending time and resources treating the severely disabled or demented patient seem increasingly tied to tacit—or 

sometimes explicit—judgments about the worth of the life being 

cared for. Like it or not, alien or not, we must take up this topic, 

if only to be better equipped to deal with public arguments that 

traffic casually in these grave matters. 

In common parlance, we speak of the worth or worthiness 

of a human life in many different ways and with many different 

meanings. One way invites assessments of comparative worth. In 

the economic sense (“How much is he worth?”), different people 
104 │ TAKING CARE

are worth very different amounts, and the same person is worth 

different amounts at different stages of life. In organizations, 

some people are worth significantly more than others: for example, the League MVP (most valuable player) is worth more to a 

baseball team than a backup infielder, and so protecting the 

health of the MVP is a much higher priority. At the same time, 

the promising rookie with many good years ahead may be worth 

more than the all-star nearing retirement. Beyond economic and 

utilitarian considerations, many of us believe that some people 

live lives that are more admirable than others: the hero or statesman who defends his country (a Washington or Lincoln), the 

great poet, painter, composer, thinker, scientist, or inventor (a 

Shakespeare, Raphael, Mozart, Plato, Newton, or Edison), the 

devoted humanitarian (a Jane Addams or Mother Teresa), and, 

on a less grand scale, people we know in everyday life whom we 

admire for their character, accomplishments, or contributions to 

the community. 

In these respects, human worth can be both variable among 

persons and changeable over time. In happy times, one’s life 

seems to be worth more. In terrible times, we might wonder 

whether being alive is really worth it. 

And yet, even as we make such comparative judgments, we 

also affirm another, non-comparative, way of speaking about the 

worth of human lives, based on the recognition of what all human beings have in common. For if we make human worth depend entirely on those roles or capacities or accomplishments 

that some people find worthy, or on the changing feelings and 

perceptions of the moment, we risk ignoring or denying a more 

basic human worthiness to which we are committed. If we value 

only the great ones, we do an injustice to the dignity of ordinary 

human beings, ourselves included. If we value only those whose 

potential is still open to be fulfilled, we risk dishonoring those 

whose potential has largely already been fulfilled. If we value 

someone solely because of the powers he now has, we risk abandoning him when those powers are gone. In some areas of life—

like professional sports—it makes perfect sense to put individuals “on waivers” when their talents dry up. But in other contexts—like basic human rights or decent medical care—valuing 

only the healthy, wealthy, or competent seems to deny the worth 
T HE ETHICS OF CAREGIVING │ 105 

that all individuals possess equally, simply by virtue of our shared 

humanity. 

When thinking about human worth in the caregiving context, we have at least four fundamental principles that might 

guide us: autonomy, where one’s worth is manifested in one’s 

power to choose and determined entirely by one’s own judgment; utility, where one’s worth depends entirely on one’s usefulness to oneself or others; quality, where one’s worth depends on 

possessing or exercising certain humanly fitting, admirable, or 

enjoyable traits and capacities; and equality, where every human 

being possesses an equal and intrinsic worth simply by being part 

of the human community. 

Each of these perspectives may be useful for certain purposes and in certain circumstances. But in matters regarding life, 

death, and basic rights, the most basic commitment of our society is and has been to human equality. In a society “dedicated to 

the proposition that all men are created equal,” we must ensure 

that we do not allow the genuine inequalities of human capacities 

and human character to blind us to the equal humanity of all 

human beings. In part, our equality arises out of our shared vulnerability. We are all vulnerable to the deprivations of illness or 

injury and to the limitation of mortality, and thus we all have a 

personal interest in ensuring that needy persons are treated 

equally and adequately. 

But our commitment to equality is more than simply calculating; it is more than a future’s contract in human care, purchased by the healthy to insure against the contingency of biological misfortune or the inevitability of decline. Rather, the 

commitment to equal human worth stands as the basis of a welcoming community—one that assures all living human beings, 

even those in a disabled or diminished state, that their lives still 

have meaning, worth, and value for all of us. It assures them that 

we would not prefer them dead even if we would like to see an 

end to the suffering that marks their present condition. 

Those with advanced dementia test our commitment to human equality. They force us to ponder whether treating people 

equally is always the best way to treat them well or the most fitting way to give them their due. We wonder about those who 

cannot enjoy even the most basic physical pleasures; or those 
106 │ TAKING CARE

who lack even minimal consciousness; or those whose lives are 

marked by the permanent loss of self-control and the constant 

need of sedation, with death looming and no hope of recovery. 

Surely, no one, given alternatives, would choose such a life for 

himself. We may sometimes wonder whether such a life is “useful” to oneself or to others. We may be unable to find in such 

lives the “qualities” we most value. And we may suppose that any 

“autonomous” person should be able to decide ahead of time 

whether to continue living in such a state. Even if equality 

grounds our ultimate obligations to such persons, it does not always seem to accord with our experience of being with and caring for them, or replace the lived sense that human beings in 

such a diminished state have lost much that is humanly worthy. 

In crucial respects, therefore, the “ethic of equality” (valuing 

all human beings in light of their common humanity) exists in 

deep tension with the “ethic of utility” (measuring lives by what 

they are worth to oneself or others), with the “ethic of quality” 

(valuing life when it embodies certain humanly fitting characteristics or enables certain humanly satisfying experiences), and with 

the “ethic of autonomy” (valuing each person’s freedom to decide what sort of life has worth for us as individuals). If the 

worth of a human life depends entirely on a person’s utility, then 

some lives are clearly more valuable than others: we need workers, soldiers, leaders, and doers, and we rightly admire people 

who achieve great things or produce the means of their own subsistence. If the worth of a human life depends upon the presence 

of certain uniquely human qualities (such as, for example, memory, understanding, and self-command), then we may judge that 

some lives never had such worth and others (such as those with 

advanced dementia) no longer do. If the worth of a human life 

depends on one’s “autonomous” assessment of self-worth, then 

clearly some lives will be judged to have little worth, and other 

lives (such as those incapable of autonomous choice) may seem 

to lack human worth altogether. 

Against these dangerous and erroneous temptations, the 

“ethic of equality” defends the floor of human dignity, ensuring 

that even the most diminished among us is not denied the respect and care 

that all human beings are owed. The Council embraces this teaching 

as the first principle of ethical caregiving. Yet, in some respects, 
T HE ETHICS OF CAREGIVING │ 107 

equality will always stand in tension with what may seem to mark 

the height of human dignity: the qualities that distinguish our humanity, that make us useful to others, and that we freely choose 

and affirm for ourselves. That tension will always mark our 

thinking about the process of aging and the ravages of dementia. 

In the face of these tensions, it may often be difficult to 

know how to honor properly the several strands and claims of 

human dignity and human worth. Consider, for example, a virtuoso violinist whose mother gets Alzheimer’s disease, whose musical calling must now compete with long days of caregiving, her 

pursuit of human excellence in conflict with the demands of human neediness. How does she strike the right balance between 

her two callings? And how do we honor the virtuoso herself 

when she gets dementia and her treasured capacities disappear? 

We do not doubt for a moment that the virtuoso with dementia 

remains a full member of the human community, equally worthy 

of human care. But this hardly settles what it means to care for 

her well, or what it means to defend her dignity when her special 

qualities are fading or gone. For all people—and perhaps most 

vividly for those who once stood high above the ordinary—the 

regression to dementia and incompetence, with all its accompanying indignities and loss of self-command, may seem dehumanizing and humiliating; and extending life in such a condition may 

seem like a cruel mockery of the person’s former stature. 

In every human being, dementia erodes many estimable and 

beloved human qualities, gradually eliminating the things that 

make one’s life truly lovable. It makes each human being less 

than what he or she once was, even if we rightly see that the diminished person still retains his fundamental and equal human 

worth and is still equally worthy of human care—and perhaps 

more worthy of care because his or her dependence is so complete. 

Yet even as we cling proudly to those powers that once defined 

us, we must also humbly remember that we possess those powers not simply because we merited them, and never in perpetuity. 

Although the desire to die with as much dignity as one has displayed while living is understandable and even admirable, it fails 

to appreciate the human surrender that death unavoidably brings 

to us all. 
108 │ TAKING CARE

B. The Meaning of Human Deaths 

In modern societies—and perhaps in every age—we are prone to 

two kinds of extremes in thinking about the meaning of death: 

The first is believing that death is the worst thing possible and 

the greatest evil, to be opposed by any means and at all costs. 

The second is holding that death is “no big deal,” that it is simply

a natural part of life.* To think of death as the greatest evil 

tempts us to do great harm in the cause of overcoming it and 

seduces us with the belief that human beings ought to conquer 

death by human will and oppose it always by human effort. But 

to think of human death as simply natural ignores the dreadful 

reality: the earthly extinction of a human soul, the erasure of a 

unique person with a never-to-be-repeated life. And it ignores 

how consciousness of mortality distinguishes human beings from 

the other animals for whom death cannot be more than “merely 

natural,” and how this self-consciousness contributes to our being persons with interests, aspirations, and longings. 

Perhaps the first thing we realize about death is its inevitability: everyone dies, and knows it. Death is the event that announces our ultimate limitations, our lack of mastery over embodied life, our final need to learn how to surrender ourselves or 

surrender with-and-for those entrusted to our care. To be sure, 

we can and do exert some control over the circumstances of our 

death: by the healthy or unhealthy choices we make throughout 

life; by our chosen vocations and avocations; by how we act in 

moments of danger or crisis; and by the choices we make about 

the use (or non-use) of medical interventions. But such decisions 

and actions rarely ensure a particular moment of death, even if they 

make a certain type of death more likely or more imminent. The 

only way to assert perfect control over the time and manner of 

one’s death is by suicide—which embraces oblivion in the quest 

to assert one’s mastery, often in the face of misery and anguish 

we cannot escape or control. 

 

* Death is, of course, a natural part of life, or, more precisely, the natural termination of life, giving life its finite character. But humanly speaking, it is not simply or 

merely a “natural part of life.” 
T HE ETHICS OF CAREGIVING │ 109 

Although death is never a “good” in itself—even if good 

things, such as the end of terrible suffering or (in the belief of 

many) a passage to heaven, may accompany its arrival—it is 

surely possible to speak of “better” and “worse” ways to die. 

Many types of death are undesirable; they are ways and times of 

dying we would all avoid for ourselves and never wish for our 

loved ones: The young child killed in a car crash or dying of leukemia (an untimely death); the person captured, tortured, and 

beheaded (a lonely, brutal, and humiliating death); death after a 

long period of excruciating physical suffering (a prolonged and 

painful death). Yet, there may be times when the only way to 

avoid such an undesirable death—say, by betraying one’s comrades or taking one’s own life—seems equally or even more horrible. 

There are also ways of dying that are humanly ambiguous. 

Consider, for example, a very old man who dies swiftly and suddenly of a heart attack. We do not call his death untimely, even if 

it was unexpected. Perhaps he was ready to die, and perhaps he 

always hoped to avoid a long, painful decline into debility and 

dementia. Yet such a death might also deny a dying person the 

chance to say his final goodbyes, to reconcile himself to his own 

demise, to put his affairs in order, and to die in the company of 

those who love him and will remember him. And it might deny 

those loved ones the same last chances—to say goodbye, to reconcile, to be there at the very end. Such a death, while swift, is 

denied one final twilight. 

Consider, as a second example, a young fireman who dies 

rescuing a child from a burning building. Such a death is surely 

untimely, in that the person may leave behind a young wife or 

young children, or perhaps never lived long enough to have children who will follow him. In every sense, to die so young is to be 

a life cut short. Yet such a death—and more importantly, such a 

life—is marked by nobility; it spurs the moral imagination of 

those who remember the person who died; it is, in every sense, 

an admirable and noble death, if not a death most people want 

for themselves. 

Death at the end of long-term debility and dementia is an 

especially complicated case. Most people who die of Alzheimer’s 

disease, for example, have been blessed with a full life; they have 
110 │ TAKING CARE

avoided untimely or sudden death; they have lived to see children 

and grandchildren born, or careers pursued, or wealth accumulated. But such a death also entails certain special burdens for the 

dying person—at first, the burdens of looking ahead to a period of 

lost self-awareness; throughout, the burdens of living in a condition of growing, and ultimately total, dependence. Looking 

ahead, one might foresee one’s own children or spouse changing 

soiled garments; or fear hurting the grandchildren’s feelings by 

not remembering shared experiences; or making inappropriate 

comments at inappropriate times; or causing long days of struggle for the people one loves most, without the privilege or possibility of sacrificing one’s own good on their behalf. And one 

must eventually live through the burdens of dementia itself—

from the terror of treatments one does not understand to the 

disorientation of being moved from one’s home to the nursing 

home to the hospital. When death finally comes for those with 

advanced dementia, they are no longer fully aware of the self 

whose life is being surrendered. Perhaps they can no longer fear 

or hate death in the way a self-conscious person often does, and 

so they can die more peacefully. But this absence of awareness 

might also be seen as a deprivation, for it denies individuals the 

chance to face death frontally, with the dignity that requires an 

awareness of death’s coming. 

Appalled or terrified by such prospects, and refusing while 

still in self-command to submit themselves to what nature has in 

store for them, some people may be tempted to orchestrate the 

time and manner of their dying, by rejecting all medical care or 

even electing suicide here and now. In a discussion of the ethics 

of caregiving, ethical arguments about suicide—as opposed to 

ethical arguments about euthanasia—are largely beside the 

point,* and a full discussion here is neither necessary nor possi-

 

* Self-destruction is not an issue for caregivers dealing with dementia patients 

who have lost self-awareness and who can no longer care for themselves. True, as 

we pointed out in Chapter 1, suicidal thoughts do occur to some patients with 

early Alzheimer’s disease, despairing of their future. But as we also pointed out, 

this is generally the result of an overlaid depression, and with the aid of a discerning physician and anti-depressant medications these desperate patients commonly 

throw off their depression and their suicidal thoughts. The failure to diagnose and 

treat depression—often the result of despair that afflicts the patient’s family even 
T HE ETHICS OF CAREGIVING │ 111 

ble. But because both of these subjects—taking one’s own life 

and caring for others—relate in some measure to judgments 

about human worth and our understanding of human mortality, 

we offer a few observations about the meaning of suicide that are 

especially germane to thinking about caregiving in relation to 

death. 

In some cases, suicide is a deliberate choice against the need 

to be cared for by others; it is a self-conscious choice against becoming dependent. In other cases, suicide is a desperate act of 

loneliness or isolation, taken by those who fear that no one will 

be present to care for them; it is a self-conscious choice against 

being abandoned. Suicide can be motivated by the desire to live 

only if one can stand alone, or by the desire to die because one 

fears standing alone. 

Yet to be human is, inevitably, to exist in community with 

others. None of us becomes a self on our own, and our lives are 

connected in countless rich and complicated ways with the lives 

of others; from birth to burial, we depend on and are attended to 

by others, and we touch others’ lives in deep and often mysterious ways, even in our days of decline and dependence. Hence, to 

take one’s life is to take part of others’ as well—sometimes deliberately, sometimes knowingly, sometimes (paradoxically) out of 

fear that others will want no part of us. Yet there is no reason for 

loving caregivers to tolerate or embrace such a desperate act of 

rejection, only a greater reason to affirm the bonds of fidelity and 

care that give individuals the needed strength to face whatever 

life has in store for them. 

However understandable the motive, to seek death by human self-destruction seems to misunderstand the limits of human 

will. Orchestrating the precise manner of our dying seems like 

one last attempt at control and mastery—at the very time when, 

paradoxically, aging and dying are announcing to us the limits of 

our control and mastery. It invites us to pretend that we can entirely transcend the uncertainties of nature and the limits of our 

finitude. It blinds us to the sad truth—but a truth with which a 

life humanly lived must come to terms—that aging announces 

 

more than it afflicts the patient—is a common and grave error in caring for patients with dementia. 
112 │ TAKING CARE

what death means: the limits of the autonomous self, limits visible both in the corpse we become and in the pain of those who 

must bury it. 

These humbling reminders notwithstanding, caregivers for 

persons with dementia will unavoidably exert some measure of 

control over the time, manner, and circumstances of the person’s 

death, whether by action or inaction. With numerous life-anddeath decisions now foisted upon us as caregivers, it is less and 

less possible just to live and care well, letting death “take care of 

itself.” This grave responsibility for others is often wrenching, 

leaving caregivers to wonder what truly loving care requires: Do 

we benefit or harm the person by extending a life that is terribly 

painful? Do we benefit or harm a person by extending a life that 

the person himself might have found undignified? Do we benefit 

or harm a person by extending a life that burdens the very people 

the person loved most? On the one hand, we might believe that 

there is a better way for a person entrusted to our care to die, and 

fear that extending his life is only making a worse death more 

likely in the future. On the other hand, we should recognize that 

caring for another entails certain obligations, including (as we 

discuss more fully below) the obligation not to seize an occasion 

for the person’s death, and the obligation never to allow our own 

desire for relief from caregiving to corrupt our sense of what it 

means to benefit the (even minimal) life the person still has. 

In the age of modern medicine, how we die also depends on 

how we use medical interventions—both for ourselves and for 

others. The advance of medicine allows us to hold off death in 

more ways than ever before, and, in doing so, it makes certain 

kinds of death or patterns of dying more common. Of course, 

chance still has a large say in the manner of our “going hence”—

both for better and for worse. Nature (or fate or chance) robs 

human beings of life with no rhyme or reason; it sometimes robs 

the young of a ripe old age or robs the old of the final chance to 

say goodbye. But human life also seems to have a natural shape: 

the ascent of the child, the maturity into adulthood, the raising of 

one’s own young, and the coming of death in the cycle of the 

generations. One question we face is whether the technological 

powers that enable us to resist the inhospitalities of nature have 
T HE ETHICS OF CAREGIVING │ 113 

also introduced new dilemmas or even deformations into the 

natural course of human life, especially regarding how we die. 

A peaceful death in a ripe old age is widely regarded as the 

human ideal. “Gathered to his kin, old and sated with years,” is 

the biblical description of the death of the patriarch Isaac. And 

Xenophon described the good death as follows: 

It may be . . . that God out of his great kindness is intervening in my behalf to suffer me to close my life in the ripeness 

of age, and by the gentlest of deaths. For if at this time sentence of death be passed upon me, it is plain I shall be allowed to meet an end which . . . is not only the easiest in itself, but one which will cause the least trouble to one’s 

friends, while engendering the deepest longing for the departed. For of necessity he will only be thought of with regret 

and longing who leaves nothing behind unseemly or discomfortable to haunt the imagination of those beside him, but, 

sound of body, and his soul still capable of friendly repose, 

fades tranquilly away.1* 

The question we face is whether modern medicine, by coming so 

readily and heroically to our aid, has made such a tranquil and 

timely death less likely, and, by intervening against the “gentlest 

of deaths,” has increased the likelihood of an “unseemly or discomfortable” decline. 

C. Modern Medicine 

The benefits of modern medicine are obviously too varied and 

too significant to delineate fully here: the dramatic reduction of 

infant mortality; the near-eradication of infectious diseases such 

as polio and tuberculosis; new strategies for preventing early and 

 

* Appealing as it might sound, Xenophon’s description of the good death also 

raises many questions: If we are still sound of body and mind, can we ever really 

accept death with tranquility? And if we are still a source of happiness to our 

friends, would they let us “fade away” if they had the power to keep us going? Do 

human beings deserve the most tranquil death? Or is death, in some ways, the 

very opposite of tranquility—a nasty robbery of life, to which we can surrender 

gracefully but never happily? And what is the meaning of the fact that the peaceful death here described (the death of Socrates) is brought about by deliberate—

or deliberately imposed—human action (that is, by the drinking of hemlock)? 

Nevertheless, Xenophon is clearly on to something: a peaceful death, in the right 

season, is for most of us the best we can humanly hope for. 
114 │ TAKING CARE

sudden causes of death such as heart disease; vast improvements 

in the management of pain; and, in general, a longer and better 

quality of life for many people into their sixties, seventies, eighties, and beyond. Thanks to modern medicine, old age has become the social norm, rather than the rare exception—and for 

this gift, among others, we should surely be grateful. Those of us 

fortunate enough to live in the age of modern medicine probably 

cannot fully imagine the miseries of life without it, and what it 

meant to be so fully at the mercy of errant nature, or what it 

meant to become sick without understanding the biological cause 

of one’s symptoms. 

But as we discussed in Chapter 1, new technologies also create new dilemmas, and some of the effects of modern medicine 

on the trajectory of life and death are more ambiguous in their 

human significance. Because earlier, swifter causes of death are 

more frequently held at bay—a great good in itself—more individuals live long enough to suffer long-term debility, decline, and 

dementia. Death from sudden illness is now the exception; death 

following lengthy chronic illness is now the rule. A vast menu of 

medical machines and novel therapies can keep individuals alive 

for longer stretches in old age, but not necessarily make them 

well again, either in body or in mind. In addition, because of our 

reliance on modern medicine—and the constant hope that nature’s final blow can be averted—the vast majority of individuals 

now die not at home but in hospitals or other professionalized 

health care settings, institutions whose animating spirit is to resist 

death and delay its arrival rather than to teach people how to face 

death with as much serenity and courage as the dying individual 

and his loved ones can muster. 

Looking ahead to an age in which dementia will likely become more prevalent, some wonder whether modern medicine 

has deformed the natural shape of life by preventing death in the 

proper season. Those causes of death that once might have been 

seen as merciful and timely endings to a life “ripe with age” can 

now commonly be defeated by medical intervention, often prolonging lives marked by great physical suffering, emotional despair, and utter debility. In 1898, for example, Dr. William Osler 

wrote that, “Pneumonia may well be called the friend of the 

aged. Taken off by it in an acute, short, not often painful illness, 
T HE ETHICS OF CAREGIVING │ 115 

the old man escapes these cold gradations of decay so distressing 

to himself and to his friends.”2

But today, we can often defeat pneumonia and other ailments that afflict the afflicted, and we can prevent the “acute, 

short, not often painful” death that these ailments once delivered. As the possessors of this medical power, we face a number 

of questions with no easy answers: Does curing pneumonia or 

other ailments for an elderly, debilitated, suffering person really 

benefit the person? Are there cases when pneumonia is in fact 

“the friend of the aged,” such that curing pneumonia is not a 

form of care but an acquiescence in or imposition of future degradation? Does the power to cure pneumonia—without imposing new burdens in the act of treatment—create a moral obligation to do so? 

The doctors and scientists who have brought us such welcome medical benefits did not, of course, intend to cause us 

these dilemmas; their goal remains a full life for all, lived to the 

natural end free of disability. But although medical progress is 

always made by human beings, the human makers themselves do 

not fully control its exact direction, or the ways new medical 

powers can affect the shape of human life. For example, it may 

be that our capacity to prevent or correct various types of organ 

failure will one day allow us to sustain the human body for much 

longer than we do now, without reversing severe cognitive decline from age-related dementia. For a disease like Alzheimer’s, 

we may discover ways to radically extend the middle-stage, where 

the disabling cognitive and affective aspects of dementia have 

already arrived but the total breakdown of the body has not yet 

begun. Many of these interventions may work without burdening 

the patient in the act of treatment. But are these interventions 

necessarily good for the person entrusted to our care, and do we 

have a moral obligation to use them? 

As devoted caregivers, we do not want to refuse or cease 

treatment so that the person will die, and we do not want to 

abandon care by excluding our patients or loved ones with dementia from the medical benefits enjoyed by the wider community. Yet we must also wonder whether repeated interventions to 

rescue the patient, yielding him years or decades of incontinence, 

minimal consciousness, and constant neediness, is really a human 
116 │ TAKING CARE

benefit and therefore a human obligation. At some point, we 

might be tempted to ask whether continued treatment seems 

more cruel than caring, not love but betrayal, a way of perpetuating degradation at the hands of merciless nature rather than 

benefiting a diminished but still worthy human life. 

How we think about such questions depends largely on how 

we think about the character and limits of human agency, both in 

general and especially at the end of life. Although death surely 

announces the ultimate limits of human mastery, human beings 

will often exert considerable control over the shape of dying, 

both for themselves and for others. Intervention and nonintervention are both acts of orchestration, whether the aim is to 

extend life, to hasten death, or to relieve or prevent suffering. Of 

course, this power of orchestration is always limited by the inevitability of death and the unpredictability of even a well-studied 

and well-understood human biology. But in the end, we cannot 

avoid the responsibility to shape the life-course of those entrusted to our care, which is why we need some reliable moral 

guidelines for deciding when, how, and why to intervene or not 

intervene with the medical art. (We will consider these moral 

guidelines below.) 

As providers of medical care for those who are aging, suffering, and nearing death, we must aim to cure when we can, but 

also recognize that in many cases cure in any strong sense is no 

longer possible. Medicine, which is ethically committed to cure 

when possible, is also committed always to comfort and always to 

care. Our duty is never to abandon those who are aging and dying—even and especially when, diminished by dementia, they are 

dependent on commitments they can no longer ask or demand 

of us. It is this obligation—not to betray or abandon those in our 

care—that is the most fundamental commitment of physicians, 

nurses, and all of us who participate with them in deciding how 

best to serve the well-being of those with diminished capacities. 

We betray them if, even with the best of intentions, we subject them to treatments that cannot benefit them or that burden them. We abandon them if, 

even with the best of intentions, we do not do what we can to benefit the life 

they still have. 

Of course, this fundamental commitment not to abandon 

those who are ours to care for does not answer all the difficult 
T HE ETHICS OF CAREGIVING │ 117 

questions we face. If it did, we would have no need to speak of 

the art of medicine and, thus, the need for discernment and prudent judgment. For example, medical ethics has generally held 

that withholding or withdrawing medical treatment is permissible 

only when that treatment yields no benefit or when it burdens a 

patient excessively; yet this restriction may seem less than fully 

satisfactory in the face of hard cases. 

Imagine the case of an elderly person in constant terrible 

pain who contracts an ailment that is easily treated but deadly if 

ignored. As caregivers, we face a choice between prolonging the 

painful life, sedating the person constantly, or letting a patient die 

who may not otherwise have to die soon. None of these choices 

seems obviously best or especially satisfying. This hardly means 

that our choices were better when our medical powers were 

more limited: surely we can control pain much better now, and 

surely some might argue that life in pain or under heavy sedation 

is still better than death. But it suggests that sometimes lifesustaining interventions are morally ambivalent, even in situations where denying their use seems morally questionable. (We 

will examine this dilemma more fully in the next chapter, when 

we consider some cases in detail.) 

Modern medical advance also raises a challenge to the traditional ethical principle regarding forgoing life-sustaining treatment. If the only morally permissible criteria for forgoing lifesustaining medical treatment is that the treatment itself is burdensome or ineffectual, then every affordable treatment that 

meets these criteria becomes a moral obligation. Every medical 

invention of such a sort creates a new moral duty—regardless of 

how the invention seems to affect the trajectory of life and death, 

and regardless of whether it seems to serve or undermine our 

considered understanding of what would be a more or less humanly fitting way to live and die. By such criteria, we seem, to 

some degree, bound by technological inventions that may not 

always serve what seems like the human good. And we often 

leave ourselves with a range of morally and humanly unsatisfying 

choices. 

What we face here is a particularly poignant instance of the 

dilemmas modern technological advance brings to many areas of 

life. The combination of new medical powers (such as curing 
118 │ TAKING CARE

pneumonia with ease) and lasting moral duties (such as never 

withholding effective and non-burdensome treatments from patients who are not already irretrievably dying) may create a situation in which progress constrains human choice as much as it expands it. As caregivers, we are surely not responsible for the burdens of disease or the pain of ailments that we cannot ameliorate. 

We are not responsible for the burdens of nature that we cannot 

fully control. But we are responsible for the use of man-made 

medical powers, and it is this responsibility that creates the most 

puzzling ethical dilemmas—especially when sustaining another 

person’s life means extending a life marked by great pain and 

worsening deprivation. 

Modern medicine, although greatly blessing and enhancing 

our lives, has also sometimes made it harder to know how best 

and truly to care for those with diminished capacities and for 

those living with serious and eventually fatal illness. Often, we 

have the medical capacity to extend life or delay death but without the moral capacity to know that doing so is really a benefit to 

the person who needs us to speak and act on his behalf. This is, 

in a profound sense, the caregiver’s dilemma: a successful but 

always limited medical art, a progressive disease that erodes the 

mind on the way to disintegrating the whole person, moral uncertainty about how best to care. The rest of this chapter addresses the caregiver’s dilemma: it offers ethical analysis and 

guidance regarding the ends and means of caregiving, with special attention to decisions regarding medical treatments for patients with dementia who get sick in other ways. 

III. THE ETHICS OF CAREGIVING 

For a variety of reasons, national discussions about aging, dying, 

and caregiving have focused largely on “end-of-life issues,” on 

those dilemmas that bring life, quite literally, to a point: Should 

we treat this deadly ailment? Should we discontinue this lifesustaining intervention? Is it ever permissible to take active 

measures to end a life, either with or without the person’s consent? These questions are crucially important, and we shall address them in the discussion that follows. But we must also re-
T HE ETHICS OF CAREGIVING │ 119 

member that caregiving involves not only those moments when 

life comes to a point, or only those decisions regarding the use of 

medical interventions to sustain or end life. Caregiving, especially 

for persons with debilitating illnesses like dementia, involves 

much more the daily activities of being there for the person in 

need: protecting them from harm, managing their affairs, comforting them in dark times, feeding and bathing them and changing their soiled garments, and deciding when best care requires 

placing them in a long-term care institution to be cared for constantly by others. 

The decisions we make when a person’s life does come to a 

point will be shaped by the manner of caregiving that brought us 

to that point. For even though most caregiving decisions are not 

immediately matters of life and death, caregiving always embodies tacit judgments about the worth of the person entrusted to 

our care and always displays the character of the caregivers. 

Caregiving always involves thinking about what we owe to those 

who need us to speak for them and stand with them, precisely 

when they can no longer speak for themselves or stand alone. 

Our ability to fulfill these obligations—not just heroically in 

times of crisis, but mundanely and regularly on a daily basis—will 

make the decisive difference in the everyday life of those for 

whom we care. 

We will keep these broader considerations in mind as we 

now focus on the ethics of caregiving in the clinical context. Our 

exploration proceeds in three basic parts. First, we consider the 

positive goals that caregivers might serve—moving from respect 

for the person’s prior wishes, to the well-being of the family, to 

the good of the larger society, and finally—and most importantly—to the “best care” of the person now present. Second, we 

consider some moral principles and moral boundaries that should 

guide and constrain caregivers, as they try to serve that goal. As 

we shall indicate, the ability to pursue the “best care possible” 

depends on erecting such boundaries, both against unethical options and (even more) against our weaknesses as caregivers, especially as we care for persons who try our patience and test our 

ability to serve them wholeheartedly. Third, in the next chapter, 

we consider how loving prudence might function in a series of 

concrete and difficult cases. In other words: ethical caregiving 
120 │ TAKING CARE

involves the pursuit and promotion of good; the protection against ill; 

and prudence in judgment, here and now. 

A further word is needed about prudence, a central notion in 

our account. In everyday speech we sometimes call “prudent” 

those decisions or actions that compromise to some extent what 

is good or just. Prudence is sometimes seen as mere compromise 

or cleverness, or as settling for something less than the truly 

good or morally required. In our moral tradition, however, prudence is a high virtue, in no way opposed to justice or goodness. 

On the contrary, prudence is that excellence of heart and mind 

that enables us to see deeply and wisely into the truth of things—

deeply enough to discern the goods that are present, wisely 

enough to identify the best means available for pursuing those 

goods, without violating the norms of right and justice. Thus, 

prudent human caretakers seek to discern concretely the patients’ 

good, here and now, and in doing so, they also observe the 

boundaries that justice imposes on us. 

As we will see, the obligation to seek the best care possible 

hardly means that there is an easy answer in every case, or that 

there is a single best decision in every situation. In circumstances 

that admit of no happy options, morally conscientious caregivers 

may disagree as to which course of action is least harmful to the 

patient. But a commitment to seek the best care possible under 

the circumstances will help ensure that some kinds of decisions 

or approaches to decision-making will remain morally off-limits, 

because they are antithetical to care itself. The pursuit of best 

care both guides and constrains us as we seek the good (or best 

possible) in hard, often tragic circumstances. 

A. The Goals of Caregiving 

1. Respect for the Person’s Prior Wishes and Ideals.

As we noted in the last chapter, the guiding principle of the current legal arrangements governing caregiving for persons with 

dementia is the obligation to respect the wishes of the competent 

person the patient once was—what some scholars have called 

“precedent autonomy.”3 At the extreme, this idea seems to imply 

that only competent individuals command respect as persons, 
T HE ETHICS OF CAREGIVING │ 121 

and, more subtly, that all individuals with dementia are objectively less worthy of care than they were when they were cognitively healthy; or it suggests, at the very least, that there is no obligation to consider their best interests as they are, here and now. 

But mainly, “precedent autonomy” means that all individuals 

should have the freedom to decide for themselves, while they are 

still competent, whether (later) life with dementia would have any 

meaning or dignity for them, and what kinds of treatment should 

be pursued or rejected on their behalf. 

There is, as we have seen in Chapter 2, a partial wisdom in 

this approach: It aims to honor the distinctness of each individual as a person with a unique and continuous life-history, and it 

seeks to maintain a connection between the person one was 

when fully self-aware and the person one might become (or now 

is) with dementia. It acknowledges each person’s claim to selfdetermination, sets some limits on the types of decisions caregivers can make on behalf of voiceless persons, and protects them 

against the dangers of unwanted under-treatment or overtreatment. It also offers some direction and protection to future 

caregivers, who might tremble at the prospect of deciding the 

fate of a loved one without any guidance, or fear ever “letting 

go” without some formal permission to do so. For all these reasons, it makes sense to suggest that one of the goals of caregiving 

is to honor the prior wishes of persons who are no longer able to 

make their wishes known. 

But as we have also seen, respect for the wishes and values 

of the competent person once present is often an insufficient or 

poor guide for caregivers in the clinical setting. In many cases, 

the person’s prior wishes are simply not clear or not known. 

Many people cannot fully envision what they would want in a 

situation they have never experienced or imagined; they cannot 

speak for a self that does not yet exist; or they do not wish to 

confront the prospect of dementia and debility while still in their 

prime. The moral scope of past wishes is also limited, because a 

person’s interests can change over time and change dramatically 

with dementia. 

More broadly, as discussed above, self-determination has intrinsic limits in a civilized and decent society. Even if the law allows it, there are strong moral reasons not to aim at our own 
122 │ TAKING CARE

death or to ask others to help end our lives by willful acts. Even 

a competent person’s wishes should be limited by such moral 

boundaries and considerations, because sometimes one’s own 

wishes do an injustice to the value of one’s own life, or to the 

concerns of one’s loved ones, or to the norms of the broader society. Our lives are intertwined with others, who are affected 

powerfully by our choices, and who are themselves consciencebound moral agents. Our caregivers are not obligated to execute 

our wishes if those wishes seem morally misguided, nor obligated 

to enter into contracts that require them to violate important 

moral precepts that are binding on everyone. 

In life as actually lived, the burdens of decision always happen here and now, in circumstances that past directives, written 

then and there, cannot always imagine. These decisions fall on 

caregivers and surrogate decisionmakers, who experience the 

loved one with dementia as they are now. These caregivers are no 

doubt saddened by the capacities that are gone, but they are also 

bound to the person still present, who is more to them than a 

breathing corpse and an inherited set of instructions. Caregivers 

need to consider the incapacitated person’s present needs and 

satisfactions, not only the once-competent person’s past wishes; 

and they are summoned to make decisions not only for the self 

that exists in memory, but also (and especially) for the self that 

exists now in embodied reality. 

This does not mean that the character or wishes of the individual before the onset of dementia should be treated as irrelevant in deciding how to care for the person she now is: to treat 

the personal past as irrelevant would deny the continuous life 

trajectory of the individual; it would deny, in a different way, the 

reality of the embodied self. The caregiver should always strive to 

honor the ideals a person with dementia once self-consciously 

held even though self-awareness is now largely or entirely gone, 

and to honor her past wishes and past character without transgressing certain firm moral boundaries.* This requires, in the end, 

that we look also to aims and obligations beyond respecting 

precedent autonomy in making decisions for the incapacitated 

person now entrusted to our care. 

 

* We will discuss some of these boundaries later in this chapter. 
T HE ETHICS OF CAREGIVING │ 123 

2. The Well-Being of the Family. 

Primary (non-professional) caregivers and recipients of care are 

most often members of families, linked by bonds of affection 

and obligation (and sometimes affected, too, by the frustrations 

and resentments that often develop in family life).* In giving care 

to an especially needy family member, caregivers understandably 

and rightly worry also about the well-being of the family as a 

whole. A caregiving spouse, for example, might think about how 

continued care for a husband or wife with dementia affects the 

well-being of children and grandchildren. And a caregiving adult 

child might think about the good of her own family, and how the 

obligations of caring for an aging parent in her home will affect 

her ability to care for a growing child. 

One approach to aiming at the good of the family might be 

strictly utilitarian, weighing the costs and benefits of sustaining a 

dependent person’s life for everyone in the family: Does the living presence of a parent or grandparent, in his or her current 

condition of dementia, give more joy than heartache? Is the cost 

of care to the family compensated by the continued life that this 

expense makes possible? And when does this cost-benefit calculus change? 

But such narrow utilitarianism seems out of step with our 

society’s moral understanding of family life. Central to our ideals 

of family life are the bonds of fidelity it entails, both for better 

and for worse. We do not (or should not) enter into and out of 

families like contracts, where the only purpose is our maximum 

pleasure or advantage. Rather, we aspire to live in and through 

families—as parents, children, siblings, spouses, grandparents—

in a spirit of unconditional mutuality, recognizing that just as 

others care for us, we may one day care for them, and recognizing that mutuality is not always the same as reciprocity: in families, we must sometimes give more than we seem to get. By reducing an individual family member simply to a source of benefit 

 

* We are well aware that many people in need of home or institutional care have 

no family members—or no dependable family members—who are able to care for 

them. In these cases, family well-being is, of course, not a relevant goal of 

caregiving. 
124 │ TAKING CARE

or pleasure for other family members, we risk undermining the 

very idea of the family that such a utilitarian calculus supposedly 

aims to promote. In the name of family happiness, we risk undercutting family fidelity and loyalty altogether.

Without question, family life is often hard and imperfect 

and, for some, a source of pain more than strength, heartache 

more than joy. But the suffering many people endure within 

families—especially the experience of feeling abandoned or betrayed—does not justify denying what family can be at its best or 

what people might reasonably aspire to in family life. And it does 

not require giving up the hope that some families in trouble can 

reconcile and renew the ties that bind, and with it the willingness 

to stand with those fellow family members in need. 

But even within affirmed bonds of fidelity and mutuality, 

matters are rarely simple. A caregiver might ask how her father, 

always a good provider, would now seek—if he could—to benefit the family, even in his dependent and cognitively disabled 

state. A caregiving husband might be troubled by seeing his afflicted wife become so utterly reduced before the aging couple’s 

children and grandchildren, and wonder what such long-term 

changes mean for the reverence and respect at the heart of family 

life. A caregiver might struggle with finding the proper balance 

between caring for her parents and rearing her children, and ask 

whether a particular ailment at a late stage of dementia is nature’s 

way of restoring the balance, to be accepted rather than opposed. 

Or a caregiver might recognize the moral gift to her children of 

seeing firsthand what it means to care for an elderly person, what 

it means to love another in the gravest need, and what it means 

to appreciate the blessings of health in the face of disease and 

death. 

There is no doubt that caring for a person with dementia 

imposes real burdens on the caregiving family—on the old, the 

middle-aged, and the young alike. But it is not always so easy to 

discern the meaning of those burdens, or to envision what would 

happen to the family bond if the old were left to die in the name 

of the young and promising, or the weak left to die in the name 

of the strong and flourishing. 
T HE ETHICS OF CAREGIVING │ 125 

3. The Good of Society. 

Most individuals, when making decisions at the bedside about 

how to care for loved ones, do not decide what is best here-andnow by thinking about what is best for the whole society in general. But as we have noted, family members are rarely the only 

actors in this drama: there are the doctors, hospitals, and nursing 

homes who make recommendations about best care; there are 

insurance companies and governments that pay a large fraction 

of health care and long-term care costs for the elderly and that 

decide what they will pay for; there is the larger polity that must 

weigh these goods against other civic goods; and there are the 

fundamental values of society, such as nurturing the young, securing the equal rights of all, and protecting the vulnerable from 

harm. Thus, although individuals may not aim at the good of society in making decisions, society as a whole establishes conditions that powerfully influence and constrain those decisions—

including the influence of law and culture on the ethical intuitions of the individuals who bear the responsibility of care. 

Just as families face hard economic decisions and trade-offs, 

so too does the larger community. Wealthy societies may be able 

to build both nursing homes and nursery schools, but even the 

wealthiest societies cannot do everything imaginable for everyone; they cannot maximize the well-being of all individuals all of 

the time. Yet how our society deals with these hard choices will 

both reflect and shape our character, both for better and for 

worse. What kind of society would we be if we left the elderly 

with dementia (and their families) to fend wholly for themselves? 

But what kind of society would we be if public subsidies for 

long-term care or heroic medical interventions for the elderly 

were financed by drastic cuts in educating the young or securing 

the peace? 

To the broad question of society’s “contract” with the elderly, one can envision a broad range of answers regarding their 

medical care. Some might argue that society should enact certain 

mandatory standards for non-treatment or public rationing, on 

the grounds that we should not divert valuable health care resources to care for those with a “low quality of life” and little 

time left. Others might argue that, because respect for the equal 
126 │ TAKING CARE

dignity and worth of all persons is a central value of our democratic society, we must ensure that this value is publicly affirmed 

rather than undermined by age-based or capacity-based rationing 

of health care. Still others might argue that we should change our 

priorities for the elderly, shifting resources from heroic measures 

of emergency rescue to support daily programs such as Meals on 

Wheels and in-home care.4 Finally, some might argue that the 

best way for society to deal with such ethically fraught matters is 

through a procedural solution—allowing individuals and families 

maximum possible freedom to decide what is best for themselves, while preserving tolerance for different worldviews and 

civic peace within society as a whole. 

There is surely a partial wisdom in seeking to set social limits 

on treatment, say by deciding as a society what medical procedures we will not publicly fund for those nearing death. This policy faces up to the reality of mortality, the passing of the generations, the limits on our resources, and the interconnectedness of 

all social goods. It acknowledges the potential danger of neglecting the young in caring for elderly persons entering upon a long 

“second childhood.” But rationing resources for debilitated or 

demented persons risks dehumanizing them—by treating them 

as public burdens, as non-members of society, whose claim on us 

is limited by their very weakness and dependence. Such a policy 

might directly or indirectly impose death as “the best treatment” 

even in cases where a simple medical intervention would benefit 

the life a person with dementia still has. It might unjustly burden 

the poor, by excluding certain treatments from Medicare or 

Medicaid coverage that the wealthy could purchase with private 

funds. Or it might perversely alter the role of the state, by making certain therapies illegal across the board for certain classes of 

patients, rich and poor alike. 

Of course, as a society we need to reflect on how to set limits, lest we allow the urgency of life-and-death medicine for the 

elderly to always trump the seemingly less urgent but no less important obligations and aspirations of society as a whole. In the 

face of limited resources, growing needs for ever-more-expensive 

long-term care, and the dwindling ranks of voluntary caregivers, 

we will be unable to escape difficult choices in setting priorities. 

But the effort to set limits can also lead to some socially perni-
T HE ETHICS OF CAREGIVING │ 127 

cious results, separating citizens, by state mandate, into the eligible and the ineligible, the “still worthy” and the “no longer worth 

it.” 

There is also a partial wisdom in seeking a procedural solution, one that leaves caregiving decisions as much as possible to 

individual families. And yet, as discussed above, a policy of 

autonomy without limits offers little guidance to patients and 

caregivers about how to exercise their freedom. And it fails to confront the potentially dehumanizing excesses of autonomy itself—

including the possibility of seeing one’s own life as less valuable 

than it truly is. Moreover, a policy built on self-determination 

alone offers little guidance about what society owes its dependent 

members, and what its dependent members owe society. 

What we discern, in the end, is that setting social policy in 

this area is no easy task, especially as it bears on individual cases 

at the bedside, where prudent judgment about the particulars is 

always needed. The principle that persons with dementia possess 

human dignity equal to non-demented persons provides an essential moral foundation for a caring and caregiving society. It 

means that individual caregivers and public policymakers should 

not see the disability of dementia by itself as a reason for discrimination or as legitimate grounds for the denial of equal treatment. 

It means that certain kinds of actions—like active euthanasia or a 

system of rationing that discriminated explicitly against dementia 

patients—should be morally off limits. 

But this principle of equality does not in itself settle the 

hardest practical dilemmas faced by individuals, families, and citizens. Equal human dignity does not mean identical treatment; it 

simply means treating every human being as equally worthy of 

care, and then discerning what this human being, under these 

circumstances, requires and deserves. For family caregivers and 

medical professionals in the clinical setting, the task of loving 

prudence is to sort out, within certain moral boundaries, what 

the best course of action or non-action is for the person now 

here. And for society as a whole, the challenge is defending the 

dignity of persons with dementia in a human world where resources are always limited and where caring for the needy is not 

the only human good. In addition, the principle of equal human 

dignity, in itself, says nothing about what obligations persons 
128 │ TAKING CARE

with dementia (in its early stages) may still have to the society of 

which they are part, including generosity toward and concern for 

generations yet to come. 

Perhaps our greatest social obligation is toward the large 

number of people who do not have family caregivers and thus 

rely on the community to stand with them and speak for them. 

This obligation is all the more reason why a strictly legalistic solution, like advance directives or even durable power of attorney, 

will not be adequate. And this is why there is good reason to lay 

out, for strangers taking care of strangers, what “best care” for 

the patient here-and-now might require. 

4. Best Care for the Person Now Here. 

If the goal of caregiving is to provide the best care possible for 

the person with dementia now here, then it is important to try to 

see the world as the person with dementia sees it, and to ensure 

that we do not allow our own discomfort with his or her diminished capacity to become the scale we use to measure his or her 

worth. Surely, we need to improve our understanding of life-aslived by persons with dementia; we need to probe the meaning of 

experiences that might make little sense to us—such as reading 

books without paying attention to the order of the pages—but 

often give persons with dementia experiential pleasure. More 

deeply, we need to see the person with dementia as more than 

simply an individual with interests for himself, but as someone 

whose life has meaning for others. Sometimes this means seeing 

the value of a disabled person’s life even when being alive may 

no longer seem like a benefit to the disabled person himself. 

People who contend that caregiving ought to serve the “best 

interests” of the patient rightfully seek to put the present patient 

at the center of caregiving decisions. But to speak of “interests” 

alone also seems somewhat impoverished: human beings are not 

simply collections of interests, but whole persons whose lives are 

intertwined with others, lives that have meaning even when their 

interests seem limited and even when their life options have 

shrunk significantly. In this, the proper aim is not simply “best 

interests” but “best care” for the well-being of this patient, under 

these circumstances, at this time. 
T HE ETHICS OF CAREGIVING │ 129 

Yet even as we try to empathize with persons who suffer 

dementia and see them as human beings with equal dignity and 

worth, we also cannot lose sight of the deprivations that dementia often or eventually brings: the loss of modesty and selfcontrol; the outbursts of anger; the descent into mindlessness; 

the physical discomfort; the need for diapers or physical restraints. Seeing the good of a life with moderate or severe dementia often means seeing the worth of a life that has been 

stripped of many worthwhile and dignified things. We need to 

see both the dignity of the person and the indignity of the disease. 

Approaching caregiving decisions in this way brings us to 

the core question: How do we benefit the life this person now 

has—even if it is not the life the person would have chosen for 

himself? This straightforward question does not always have a 

straightforward answer. Surely physical well-being is central to 

the obligation of best care, and so finding ways to ease suffering 

and treat physical ailments as they arise—broken hips, pneumonia, urinary tract infections—would have a strong moral claim. 

But there are other claims that must also be considered, going 

beyond the present good of the body. Does one benefit the life a 

person now has by trying to prevent an excessively painful or 

degrading death, even if it means accepting an earlier death? 

Does one benefit the life a person now has by extending an existence marked mostly by physical and emotional misery? Does 

one benefit the life the Alzheimer’s patient now has by forgoing 

life-extending treatment, so that he might finish life with some 

remnant of past nobility and self-awareness intact and while his 

presence still awakens reverence rather than repugnance in his 

grandchildren? 

Surely, different people will see the good of the person with 

dementia in different terms; they will value different factors differently. To repeat, best care does not always mean that there is 

only a single right choice in every case. But doing our “best” for 

each patient should always be our guiding aspiration, and thus a 

check on the tendency to lower our standards and seek only what 

is “good enough” rather than what is “best under the circumstances.” Caregivers must resist the temptation to do what is best 

or most comfortable for themselves in the false name of doing what 
130 │ TAKING CARE

is best for the patient, and they must avoid projecting their own 

wishes, prejudices, or burdens onto the patient.* 

Spirit and motivation matter in these decisions, and two decisions that look very similar may have a profoundly different 

meaning when seen in their totality. But in the end, all decisions 

should operate within a shared moral framework—one that recognizes the deprivations of dementia, the limitations on family 

and social resources, and the significance of a person’s prior 

wishes, but which never defines life with dementia as “life unworthy of life” and never sees causing death as a morally choiceworthy means to the end of easing suffering. After all, it is selfcontradictory to propose to “care” for any patient by making him 

dead; and it is hard to think wholeheartedly about best care if one 

morally eligible option is to ease the suffering person out of existence. 

To sum up: Caregivers should be guided primarily by a 

moral obligation and an ethical disposition to care always, and by 

an appreciation of the particular current needs and circumstances 

of each person now in their care. We should seek to provide the 

best care possible, case by case, situation by situation, but always 

within certain universal moral boundaries. In what follows, we 

expand our consideration of the moral guidelines and moral 

boundaries that should guide caregivers, before taking up some 

difficult yet paradigmatic clinical cases. 

B. Moral Guidelines

As we have already indicated, the discernment of best care for 

any particular patient, here and now, is the work of prudent deliberation and judgment. Because the variables are so numerous, 

person by person and circumstance by circumstance, it is impossible to reduce prudence to precise rules or to write programs for 

wise decision-making. Nevertheless, our tradition of medical ethics, reflecting on the character of human action and on the care-

 

* At the same time, potential patients should not seek a guarantee, long in advance, that they will “never be a burden” to their loved ones and thus look for 

ways to orchestrate an early exit, especially when those loved ones would rather 

bear the burdens of care than the burden of not being permitted to care. 
T HE ETHICS OF CAREGIVING │ 131 

giving dilemmas of interest to this report, has articulated certain 

crucial concepts and distinctions to guide prudent thinking: negatively, to set some moral boundaries beyond which prudence cannot rightly go; positively, to clarify the target at which prudence 

should rightly aim. Such ethical concepts and distinctions are 

both necessary and perilous. They are necessary, because we 

need to see ethical decisions in their proper light, and we need to 

erect certain protections against doing harm, even—or especially—with good intentions. But they are also perilous, because 

there is always a risk of turning a concrete human situation into 

an abstract case and of adhering narrowly to general principles 

without discerning the best care possible for each particular patient. 

Below, we consider four moral distinctions or concepts that 

have been used to try to distinguish between what is morally required, what is morally forbidden, and what is morally optional. 

These are: (1) ordinary and extraordinary care; (2) acts of commission and acts of omission; (3) the motives, intended deeds, 

and results of a human action; and (4) the burden of treatment 

imposed by human action and the burdens of disability and disease imposed by nature.5 Out of this analysis, we will then 

formulate the operative moral boundaries that should guide us in 

actual cases. 

1. Ordinary and Extraordinary Care. 

In formal discussions of medical ethics, the terms “ordinary” and 

“extraordinary” care have been commonly used to think about 

whether to initiate, continue, or cease particular medical treatments, ordinary care being considered mandatory, extraordinary 

care being considered optional. But defining these terms is something of a challenge. People sometimes apply these terms to the 

medical technique or intervention itself, where ordinary can 

mean reliable (“it works”), common (“part of standard medical practice”), easy (“not distressing to the patient”), simple (“unsophisticated and easy to administer”), affordable (“not unduly expensive”), or easily available (“near at hand, not requiring much travel 

to get it”). 
132 │ TAKING CARE

In the discourse of medical ethics, the terms “ordinary” 

treatment and “extraordinary” treatment acquired a more precise 

and technical meaning, referring specifically to the intervention 

as it relates to a particular ailing person.6 Thus, the operative 

meaning of these terms becomes relative to each case, often differing dramatically for different patients. For example, it seems 

relatively “ordinary” for a vigorous middle-aged man with decent 

health insurance to get coronary artery bypass surgery at the firstrate medical center near his home; for a frail old man with the 

same heart condition but lacking medical insurance and living far 

from any medical center, bypass surgery would probably be 

deemed “extraordinary.” For the first person, the surgery is readily available and affordable without upending his entire domestic 

life; for the second, the surgery would create burdens so great 

that it becomes virtually beyond reach. The surgery itself imposes 

physical burdens that are not exactly “ordinary” (“easy to take”) 

even for the first person, but also not so “extraordinary” that living with and through them is too onerous to endure. As a person 

ages, however, the burdens of surgery and post-operative recovery increase, and the once “ordinary” treatment becomes increasingly “extraordinary,” because it becomes increasingly burdensome and risky to the patient. 

To generalize: A proposed treatment could be reliable, 

common, simple, affordable, and readily available, yet be regarded as “extraordinary” for a given patient. For despite being 

ordinary in all those ways, the proposed treatment could still be 

useless for the patient—or, even if possibly useful, quite burdensome. Treatments that are either “useless” or “excessively burdensome” for a particular patient, however ordinary they might 

otherwise seem, are in the ethical sense “extraordinary”—above 

and beyond what is morally required. As such they may be accepted or declined, and in some cases they should clearly be declined for the good of the patient. 

At one time, medical ethicists relied a great deal on this distinction, and it was the staple of Roman Catholic casuistry on 

this subject.7 Today, this distinction is much less frequently used 

by doctors and ethicists. And because “extraordinary”—meaning 

“ethically optional”—treatment really translates into “excessively 

burdensome” or “useless” treatment, we might be better off 
T HE ETHICS OF CAREGIVING │ 133 

working directly with those terms, seeing as they focus our attention more precisely on the well-being of the patients and thus on 

the kinds of concerns that are always of central moral significance.* 

2. Acts of Commission and Acts of Omission. 

Another common distinction used in thinking about lifesustaining or life-ending treatments is that between acts of commission and acts of omission. Whereas “ordinary” and “extraordinary” focus on what counts morally in balancing benefits and 

burdens for the patient, this distinction focuses on the deeds of the 

moral agent who elects, provides, or forgoes the treatment. In the 

clinical context, acts of commission involve the deliberate, active 

use of some agent (like a drug, machine, or surgical technique) to 

alter the life-course of the patient. Acts of omission involve the 

deliberate decision not to intervene in the life-course of a patient. 

Clear as this basic distinction may seem, however, its meaning is often far from obvious and its moral usefulness is, at most, 

partial. Analysis of the meaning of an “act” or “action” is an extraordinarily complex matter, to which we can hardly do justice 

here. A few observations are, however, especially germane. First, 

a human action is more than a spontaneous reflex or a slice of 

behavior. The description of an act itself—what the person does—

is governed by the person’s intention (by his “plan of action”), 

both as to ends and means. In addition, the same action (or plan 

of action) may be done from many different motives and in order to accomplish many different results. All of these aspects 

count in any ethical analysis of our deeds, and their evaluation 

depends on more than the distinction between doing and not 

doing: if undertaken with wrongful intention, all deeds—whether 

of commission or omission—may be judged adversely. 

Second, if not acting is a choice made by conscious decision, 

this omission is itself a moral act with moral significance, and 

those who so choose are often as morally responsible for not doing as those who choose to act are responsible for doing. In 

cases such as the ones of interest to this report, people some-

 

* We take up the subject of “burdensomeness” below. 
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times take refuge in the distinction between omission and commission, as if it were an easy way of distinguishing between what 

is morally permissible or praiseworthy and what is not. That is 

probably more weight than the distinction by itself can bear. 

Third, the moral meaning of the same act of commission (or 

of the same act of omission) can differ, owing to the predictability 

or non-predictability of the outcome. In some cases, we can know with 

virtual certainty that intervening will sustain (or end) life or that 

not intervening means that the patient’s life will end. In other 

cases, we can only know the likely, or probable, or potential outcome of acting or not acting. Where omitting an action is certain

to produce death (for example, not providing artificial nutrition 

and hydration to a person in a coma), it will be evaluated differently than when the outcome of the omission is uncertain (for 

example, not inserting a feeding tube into a dimly conscious person who can still be spoon fed). 

Commission and omission seem to be ends of a spectrum 

rather than either/or categories of action. There are clear acts of 

commission—such as treating pneumonia with antibiotics or killing 

a patient by administering some lethal agent. There are clear acts of 

omission—such as allowing a patient to die of infection by electing 

not to treat. In between are actions that are harder to classify as 

commissions or omissions. Some actions remove treatments already 

underway—for example, turning off a respirator or removing a 

feeding tube. Others cease periodic treatments—for example, stopping blood transfusions or ceasing dialysis. 

It scarcely makes sense to label every failure or refusal to act 

as itself a form of action; our responsibility as actors depends on 

the circumstances. Clearly, some behaviors—such as failing to 

wish a stranger a happy birthday—are unlikely to be termed acts 

of omission; for in almost all circumstances they would not be 

regarded as acts of any kind. Other behaviors—like forgetting to 

wish one’s mother a happy birthday—may or may not be acts of 

omission, and may or may not be blameworthy, depending on 

the circumstances. In the medical context, a decision not to intervene—especially after clinical assessment of what intervention 

versus non-intervention likely means for the patient—is not simply an omission but a deliberately chosen omission. Physicians have 

a legally defined affirmative duty to act in medically appropriate 
T HE ETHICS OF CAREGIVING │ 135 

cases; in such cases their decision not to act when they are duty 

bound to do so becomes a culpable omission. 

Despite these ambiguities and complexities, the distinction 

between commission and omission does still possess some moral 

significance, mainly in the two common situations in which the 

difference between acting and not-acting is thought to be especially relevant: (a) the difference between stopping and not starting treatment (where the distinction may make, morally speaking, 

only a symbolic and psychological difference), and (b) the difference between active killing and letting die (where the distinction 

makes considerable—but not complete—intrinsic moral difference). 

a. Never beginning treatment versus ceasing/removing 

a treatment-in-process. Is there a moral difference between 

never beginning a treatment at all and ending a treatment already 

begun? (There may sometimes be a legal difference, but we limit 

ourselves here to the moral question.) We can imagine a case in 

which, though there might have been some initial reason never 

to begin a treatment, that reason ceases to be significant once the 

treatment has been in place for a time. For example, a patient 

might strongly resist the initial insertion of a feeding tube, but 

eventually grow physically accustomed or at least un-resistant to 

it. Conversely, there might be cases in which an intervention (believed to be temporary) is begun in the hopes of improving a patient’s condition, but where improvement never comes and the 

continuation of the intervention, now necessary to sustain life, 

has become a serious burden for the patient. 

There is surely symbolic and psychological importance to 

ceasing an ongoing treatment, especially where one knows in advance that the likely consequence of doing so is imminent death. 

If we withdraw treatment in such a case, we may more readily 

think of ourselves as having caused the patient’s death or, at 

least, as having initiated the irreversible process of the person’s 

dying. In forgoing a new treatment, one does not alter the status 

quo of the patient; in acting to end a treatment-in-process, one 

deliberately alters the status quo, and the consequence of such 

alteration may be lethal. In many cases, however, there is little or 

no intrinsic moral difference between these two kinds of acts—
136 │ TAKING CARE

never beginning treatment and ceasing treatment already begun—and in both cases, the actual cause of death is not the caregiver’s action or non-action but the underlying disease-inprocess.* Yet it is natural that we experience ourselves as causal 

agents more strongly when we withdraw a treatment already begun than when we decide never to begin a treatment at all. And it 

is surely important for all concerned that physicians not seem to 

be intending to cause a patient’s death when they rightly elect to 

discontinue treatment that, after a trial, has become futile or excessively burdensome. 

But in the end, this distinction, though relevant, is hardly decisive, neither medically nor (especially) ethically. Much will depend on the condition of the patient, the nature of the disease, 

and the particular type of treatment in question: Is it burdensome? Will it work? Can we know before we try? What matters 

most is not whether a decision forgoes treatment in advance or 

removes treatment-in-process, but the moral and human aim of 

the decision to begin, cease, or never begin a particular treatment. Whether the action is leaving a disease untreated or ending 

a treatment already begun, the question is always: Am I benefiting the life the patient now has by acting in this way? 

b. Active killing versus letting die. Medical ethics has long 

insisted on the moral difference between taking deliberate positive measures to bring about the death of a patient and letting a 

patient die of “natural causes.” To be sure, medicine generally 

seeks to oppose death by natural causes and to correct or restrain 

the biological causes of debility and mortality. But caregivers 

must also, eventually, “let die” those entrusted to their care, if 

only because every patient eventually dies, medicine or no medicine. “Letting die” is thus always part of caregiving. 

 

* A good case can be made that a deliberately limited trial of therapy is morally better 

than not starting it, because it permits a realistic assessment—and not just a 

guess—of the merits of the treatment for the particular patient. To avoid the trap 

of not being able to stop what has been started, some physicians now place a 

time (or other) limit on the treatment at the time it is begun. For example, they order 

tube feeding “for three days,” with evaluation to follow the trial. If it is then 

deemed unlikely to do good, it stops “automatically.” (We owe this information 

to Dr. Joanne Lynn.) 
T HE ETHICS OF CAREGIVING │ 137 

The question, therefore, is not whether to accept natural 

death, but how and when to do so. What matters morally is discerning when it is appropriate to “let die,” even in cases where 

the means to oppose death and extend life still exist, but where 

using such means may not benefit the life the person still has. 

Extending life is not the only way to benefit a person’s life, and 

length of life is not the only good worthy of the caregiver’s consideration. And so, in some cases, letting a patient die “earlier 

than necessary” is morally sound or even morally obligatory, if 

the available ways of extending life are themselves morally problematic. 

By contrast, taking active measures to end a patient’s life, 

even if such measures are taken with the best of motives, is always difficult (or impossible) to reconcile with the ethics of caregiving. Active killing, even when motivated by a desire to end 

bodily or psychic pain, makes caregivers the final masters and 

arbiters of life and death for the person entrusted to their care. It 

denies the patient’s right to life. It breaks the state’s monopoly 

on the legitimate use of lethal force. It makes some doctors 

sometimes executioners, calling into question their trustworthiness always to serve the patient’s good. Wielding such power is 

deeply antithetical to the practice of medicine and the vocation 

of doctors, who are called to serve the patient until the very end. 

As the Hippocratic Oath already put it: “I will neither give a 

deadly drug to anybody if asked for it, nor will I make a suggestion to this effect. . . . In purity and holiness I will guard my life 

and my art.”8

Serving the patient does not mean extending life at all costs; 

doctors are not only in the business of curing but also in the business of caring, which sometimes means accepting a shorter, more 

comfortable life. But even when doctors and caregivers surrender 

to death, this surrender honors our humanity best when it steadily affirms the life of even a dying person and when it steadfastly 

refuses to abandon the person in his dying. To end a person’s life 

is to abandon that life. Active killing—even out of mercy—is not 

the giving of care. 

Although the distinction between “letting die” and “active 

killing” is morally significant, it is not by itself morally decisive. 

For although active killing is always off limits, letting die is not 
138 │ TAKING CARE

always permissible or praiseworthy. As in all of our chosen actions, the moral quality of the action taken (or omitted) will be 

shaped by the reasons for taking it; hence, we must consider the 

moral weight of those reasons. If one deliberately omits treatment so that a patient will die, such a choice seems morally little 

different from intervening actively to end the patient’s life. True, 

by not moving from deadly intention to overt deadly deed, an act 

of omission aiming at death does not put doctors and caregivers 

in the perverse position of being the actual cause of death. And, 

by leaving the patient at the mercy of nature and his diseases, it 

does not guarantee or manage with precision a particular moment of death, a death-on-demand. To this extent, the harm to 

all of us—as a society devoted to caring for one another—is 

much greater in the case of active killing. At the same time, however, the wrong done to the dying person may be morally the 

same, if, either by omission or commission, we betray the patient 

by aiming at his death. In the one case (active killing) we use a lethal 

agent of our own devising as the means; in the other case (letting 

die where death itself is the aim) we use disease as the means of 

achieving a death we seek but do not cause. 

Nevertheless, even if the distinction between active killing 

and letting die does not solve all our difficulties (as just noted, it 

does not help us discern the difference between morally sound 

and morally problematic instances of letting die), the distinction 

remains morally important, and the condemnation of active killing that it implies is ethically crucial. For example, we might in 

good conscience remove a respirator from a patient in the final 

stages of brain cancer so that he can die a more peaceful death 

unburdened by the machinery. But we should not give a patient 

in the final stages of brain cancer a lethal injection so that he will 

die a more peaceful death. (Instead, we would rely only on improved pain management, including, if necessary, heavy sedation.) 

A death resulting from “letting die” (withdrawing the respirator) and a death resulting from “active killing” (giving a lethal 

injection) might follow a roughly similar trajectory and would 

reach the same outcome, and they might therefore seem similar, 

at least from the perspective of the dying patient (or those for 

whom, mistakenly, only the end result counts). But for us, as a 
T HE ETHICS OF CAREGIVING │ 139 

society of caregivers, the two deeds would have a morally different meaning and morally different implications. We need to trust 

that our healers will never turn into our killers; we need shared 

limits to prevent deliberate harm to the vulnerable. We need to 

cultivate a society of caregivers who will never think of eliminating a patient in order to avoid the trouble of caring for him. For 

both ethical and prudential reasons, therefore, we must preserve 

the line between active killing and letting die, knowing that this 

distinction may not always be morally sufficient or morally satisfying in real-life cases. 

Embedded in this distinction between (a forbidden) “active 

killing” and (a permitted or approved) “letting die” is a deeper 

distinction between wrongs and harms, and more precisely, between wrongs that we ourselves commit and harms that “nature” inflicts. It acknowledges that there are ills we cannot relieve as 

quickly and completely as we might wish—at least without doing 

injury in the process. There will, of course, be at least some moments—for example, when continued life of one who is suffering seems itself an unrelieved misery—in which we wonder why 

we should respect the boundary (that forbids active killing while 

approving letting die) firmly established in our medical and moral 

tradition. Exactly when we ourselves are distressed by our own 

inability to relieve suffering, we are understandably most tempted 

to set aside this distinction and end suffering by “ending” the 

patient who suffers. We might even try to persuade ourselves 

that we are in fact not aiming at the patient’s death but merely at 

his suffering. 

Such wrenching human situations often lead caregivers into 

confusion and anguish, with mixed and complicated emotions: 

we desire to keep a loved one alive yet want her suffering to end; 

we fear that not doing “everything” means that we are guilty of 

betrayal yet we worry that prolonging life in such a condition is a 

form of torture; we want what is best for those we cherish but 

we are exhausted and anguished ourselves. Under such circumstances, caregivers may find that the moral lines between love 

and betrayal, between standing with the patient until the end and 

forcing the patient to endure the worst kind of end, between 

compassion and cruelty, between leaving the patient to suffer 

and leaving the patient to die, seem profoundly unclear. 
140 │ TAKING CARE

Yet in this murky world, the distinction between “active killing” and “letting die” offers us one bright line—a line that keeps 

us from becoming killers ourselves. Fidelity to the life we care 

for requires that we not set ourselves resolutely against it, perversely trying to help it by erasing it altogether. Caregiving that 

truly cares will not annihilate its beneficiary. 

Although this moral boundary should be respected in all 

cases, its utility is, however, also limited. Even if we steadfastly 

refuse to kill our patients and loved ones, we often still find ourselves in morally difficult straits. Determining, for example, how 

and when to accept natural death or the circumstances in which 

one may ethically let a patient die requires that we attend carefully to the motives, the intended deeds, and the goals of our actions (and inactions), a set of distinctions to which we next turn. 

3. Doing and Accomplishing: Motives, Intended Deeds, and Goals. 

As already noted, every human action can be looked at and 

evaluated in several different ways. One way has to do with the 

agent’s motives. Suppose a terminally ill man, dying of cancer, lies 

in his hospital bed in considerable pain and respiratory distress. 

Suppose also that another man enters the room and, in order to 

bring about the patient’s death, gives him a fatal overdose of 

morphine. 

Now consider this scenario from two different angles, with 

two different reasons that moved the giver of morphine to target 

the patient’s life. In the first scenario, the “killer” is a close friend 

of the dying man. He fears for his friend the pain and anguish of 

the coming weeks, desires for him a relatively peaceful death, and 

gives him an overdose moved by these feelings of mercy and affection. In the second scenario, the “killer” is an ex-friend (and 

now an enemy) of the dying man. Cheated and betrayed in important matters by the man now dying, this ex-friend is not satisfied simply to see him die. He wants to have a hand in it, to be 

himself the agent who brings about the patient’s death. 

If asked to evaluate the character of the two “killers,” we 

might find much to praise in the character of the first and much 

to condemn in the character of the second. Yet, despite their 

very different motives, each does the same thing: Each targets the 
T HE ETHICS OF CAREGIVING │ 141 

life of the patient and aims at his death. Hence, whatever final 

moral evaluation we make of their actions, we should not deny 

that they do the same thing. It would be misguided to describe 

the second man’s action as “killing an ex-friend” while redescribing the first man’s action as “showing mercy to a friend.” 

To do so blurs rather than clarifies the moral situation. Instead, if 

we want to approve the first man’s action and condemn the second man’s, we will have to argue that a praiseworthy motive 

(such as mercy) is more important than the chosen deadly deed 

itself—so important that, moved by mercy, we might rightly exercise a kind of ultimate authority over the life of a fellow human 

being. But if, on the contrary, we hold that the exercise of that 

kind of authority violates the equal human worth that we prize, 

we would probably think that such a motive in such circumstances should be characterized as a temptation—understandable, 

to be sure, but not praiseworthy if it moves one to perform 

deeds that are ethically unjustified. 

We know that motives are important, and we want to give 

them weight in our moral judgment, but we quite properly are 

reluctant to let a praiseworthy motive by itself transform any deed, 

however questionable, into the right thing to do. For regardless of 

motive, what we do, and what we are willing to do, itself shapes 

our character. Over time, our deeds turn us into people of a certain sort. Judgments about what we do, therefore, carry their own 

independent moral weight and should not simply be re-described 

in terms of our motives. 

But there is a further complication in the analysis of our actions. We act not only because we are moved by (praiseworthy or 

blameworthy) motives, but also because we have goals that we 

seek to achieve. What we do is related to what we accomplish or 

hope to accomplish by acting. Thus, moved by mercy, one might 

intentionally take a friend’s life, hoping to achieve thereby the 

relief of the friend’s suffering. What one does in this case is to 

kill; what one accomplishes (if successful) is an end to suffering 

(by means of the person’s death). 

The complicated connections between what we do and what 

we accomplish, between the intended deed itself and the direct or 

indirect results of our actions, constitute one of the enduring 
142 │ TAKING CARE

problems for moral reflection.* On the one hand, we hardly want 

to say that results count for nothing, that it matters little morally 

what purposes we undertake, or what goals we try to accomplish, 

or what outcomes actually result from our pursuing them. On 

the other hand, we are also reluctant to say that desirable results, 

in and of themselves, are alone sufficient to justify any deed that 

may accomplish them. Moreover, some actions that are undertaken even with advance knowledge that bad things may result 

can be morally justified, provided that the primary intention of 

the action is good and that the bad consequences are not the intended aim or goal of the action itself. (This is the so-called principle of “double-effect”: it sanctions, for example, the giving of 

high doses of morphine to a terminally ill patient in order to relieve severe pain, even though doing so increases the risk of depressing respiration and thus hastening death.) Some of the most 

wrenching of life’s circumstances—including and especially in 

the clinical context—arise when we can find no way to accomplish

very desirable goals other than by doing what may be wrong, or 

when doing what is right seems to accomplish undesirable results. 

An act can be wrong even if it achieves good results, and an 

act can be right even if some of its effects are evil. It would be 

wrong to compel an unwilling and fully competent patient to receive treatment, even if the treatment turns out to cure him (and 

even if he thanks us afterward). Likewise, it would be right to 

give a 65-year-old man just diagnosed with early Alzheimer’s disease antibiotics for his pneumonia, even if doing so results in 

more years of worsening debility and dementia. 

There are additional reasons why we should not be seduced 

into making choices and evaluating judgments solely on the basis 

of results. Doctors, nurses, and all caregivers daily confront the 

many uncertainties that surround our attempts to accomplish 

what is good for patients in need. Often we cannot say with certainty how a given disease like dementia will progress, what the 

results of different possible interventions may be, whether the 

 

* Strictly speaking, there is a difference between the goals and the results of our 

actions: our goal (that is, our wished-for end) might be to accomplish a certain 

desired result, but the actual result might turn out to be other than what we 

wished for. 
T HE ETHICS OF CAREGIVING │ 143 

course of a (certainly deadly) disease will be swift or slow (or 

preempted by some other unforeseen cause of death). To be a 

caregiver is to live, day after day, with unexpected side effects, 

with desired results that turn out to seem undesirable, with a recalcitrant nature that resists our attempts to master it. These uncertainties argue for modesty on our part—and for a respect for 

moral limits on what we do in our endeavor to accomplish what we 

think would be good. 

In any case, as will be readily apparent in the discussion of 

cases in the next chapter, thinking about the complexities of care 

for those who are aging, suffering from dementia, or dying will 

require us to pay attention to different aspects of moral analysis: 

to the motives that shape us and may sometimes tempt us, to the 

goods and goals we hope to accomplish in our work as caregivers, and to the nature of what it is we actually do (whatever our 

motives or goals may be). All these features of moral analysis will 

play a role in our discussion of cases; for they play a role in our 

effort to live well and do well for those who rely upon us.*

 

* This moral analysis is most difficult in those cases in which the relationships 

among our motive, our chosen deed, and our desired result are most complicated. In 

some cases, these different elements of human action are clear: The doctor who 

gives a patient a lethal injection clearly aims at the person’s death in undertaking 

such an action. Death is the aim; compassion is the motive; and an end to the 

patient’s suffering is the desired goal and the accomplished result (along with a 

dead patient). By contrast, the doctor who withdraws a life-sustaining but unbearably painful or distressing treatment foresees death as a possible (indirect) 

result of his action, but in seeking to remove the suffering his own treatment has 

caused, he does not aim at death. Stopping a painful treatment is the aim of action; 

benefiting the life the patient still has is the motive; and greater peace and comfort (notwithstanding the risk of an earlier death) is the desired result. 

In other cases, however, the relationship between our motives, our chosen 

deeds, and the goals or results of our actions is far more complicated. This is 

especially the case in trying to describe and understand certain acts of omission, 

where caregivers elect not to treat a deadly or potentially deadly ailment even 

when the treatment itself is not burdensome and might be efficacious in treating 

the ailment in question. Confronted with a life marked by terrible suffering or in 

the end stages of disease, the motive for not treating may be the desire to provide 

the best care possible to the suffering patient as a whole, rather than pursuing the 

most effective strategy for acting against a particular treatable co-morbidity. But 

how, precisely, shall we characterize the aim of not giving treatment: “The death 

of the patient?” “The refusal to continue extending his miseries?” “A life with 

fewer burdens until its natural end?” (Note continues on next page.) 
144 │ TAKING CARE

4. Burdens of Treatment and Burdens of Disease. 

In our discussions so far, we have frequently mentioned but not 

yet explored in detail a crucial distinction: the distinction between 

the burdens of a medical intervention and the burdens of living 

with a disease or disability. 

The burdens of medical interventions range both in degree 

and in type: from the minimal pain (for most people) of drawing 

blood, to the nausea caused by cancer treatments, to the pain of 

recovering from major surgery, to the excruciating suffering of 

being treated for major burns. Sometimes the burdens of therapy 

involve not bodily pain but various limitations on human action 

required by treatment or side effects caused by treatment—such 

as extended immobility, restrictions on eating, or impotence as 

the side effect of taking certain medications. Sometimes the burden of treatment is less the acute burden of a single intervention, 

more the accumulated exhaustion of being a permanent patient—of needing insulin shots daily or dialysis multiple times 

each week for the rest of one’s life in order to continue living. 

Moreover, sometimes the burdens of treatment are more 

psychic than somatic—the misery of being stuck in a hospital 

bed, removed from everyday life, unable to do the things one 

loves, temporarily or even permanently. For many patients—

especially patients with dementia or other kinds of cognitive dysfunction—there is often the burden that comes with not understanding a given treatment, and therefore believing that caregivers are intervening against them rather than for them. And—

though it must be evaluated somewhat differently if our practice 

 

Do we necessarily aim at death by not treating? Is “aiming at death” really the 

best way to describe what loving physicians and family members do in such a 

case, especially those who are administering care simultaneously in many other 

ways? Or do caregivers aim at a life with fewer burdens until its natural end, a life 

where nature is allowed to take its final course, a life where excessive suffering is 

not unnecessarily extended by our own interventions? This is indeed the hardest 

kind of case. In one sense, it seems impossible to describe withholding such lifepreserving treatment as anything other than aiming at death, on the tacit premise 

that the patient is “better off dead.” And yet, the overall human description of 

such a decision to “let go” or “let die” seems different than taking active measures to 

kill. This is a dilemma we will confront in greater detail in the particular cases that 

follow in Chapter 4.
T HE ETHICS OF CAREGIVING │ 145 

of medicine is to remain patient-centered—there are also the 

burdens of treatment endured by the caregivers: the personal 

burden of arranging for medical care, the economic burden of 

paying for medical care, and the emotional burden of continuing 

medical care, especially when there is little or no hope of recovery. Of course, the same treatment will burden different patients 

very differently—depending on age, strength, tolerance for pain, 

the level of support from friends and family, and the quality and 

skill of physicians and nurses. There is no simple formula for deciding which treatments are excessively or unduly burdensome. 

We cannot make such judgments based entirely on the treatment 

itself, but only the treatment as applied or not applied to a particular patient. 

But what is crucial to remember about the burdens of treatment is that they—in contrast to the burdens of the disease or 

disability we treat—are always produced or imposed by the caregivers themselves, not by nature or chance. The treatment itself always 

aims to make things better for the patient. But sometimes the 

effort to improve a patient’s long-term condition makes the patient’s current condition notably worse; sometimes intervening to 

fight a deadly disease itself imposes such excessive suffering that 

the treatment harms the life the patient has now, even if it might 

delay the patient’s death a little longer. As caregivers, decisions 

about treatment always fall within the realm of our moral responsibility; it is the realm in which we decide what we owe the 

patient. It is the realm in which we exert greatest control and 

therefore have greatest responsibility—if never perfect control 

(treatment is limited and often unpredictable) and never perfect 

responsibility (the obligation to care for the patient does not 

make us responsible for every burden the patient confronts). 

As we think about what it means for a treatment to be “burdensome” and thus what our obligations as caregivers are, we 

need a more developed typology of different ways in which burdens may be related to treatments. Specifically, there are: (i) 

treatments that are excessively burdensome; (ii) treatments that 

are not excessively burdensome but prolong a life marked by the 

terrible burdens of current disease; (iii) treatments that are not 

excessively burdensome but prolong a life where the terrible 

burdens of a disease in-process seem likely to increase greatly in 
146 │ TAKING CARE

the near or distant future; and (iv) treatments that ease a current 

burden but prolong a life marked by other existing or likely future burdens. 

One of the most difficult situations is precisely when a relatively non-burdensome treatment can prolong a life marked by 

great hardship or looming misery. From the patient’s perspective, 

after all, suffering is suffering, and the burdens caused by nature 

and chance seem—as suffered burdens—no different from the 

burdens caused by intervention.* So why is it that medical ethics 

holds that it is morally permissible to withhold burdensome 

treatments but morally wrong to withhold useful, nonburdensome treatments so that a life marked by terrible burdens 

will more likely come to a swifter end? This difficult question 

prompts three kinds of answers or reflections. 

First, medical interventions are concrete human acts for 

which we bear clear responsibility as human agents; by contrast, 

those diseases imposed by nature are not produced by human 

action. We are fully responsible for our acts; we are not fully responsible for the burdens life itself sometimes brings (even 

though we may be deeply dismayed by such burdens in our own 

life or that of others). In training ourselves to distinguish between the burdens produced by treatment and those brought by 

life, we are searching for a way to turn against burdensome 

treatments without simultaneously turning against the life of a 

fellow human being. 

Second, although we are not responsible for the possible, 

probable, or likely future miseries that befall those whose lives 

we sustain by intervening medically to benefit the patient’s present life, we must acknowledge that we act knowing and accepting 

 

* Of course, a person’s attitude toward the fact of his having to suffer would be 

different if he thought that he was suffering at the hands of his family rather than 

at the hands of nature or fortune. But as experienced bodily suffering, the clear 

difference in the cause would not manifest itself in a clear difference in the misery 

or distress. And for persons with advanced dementia, the capacity to distinguish 

between the burdens of disease and the burdens of treatment is already long 

gone. But as we have already indicated, one can mistreat someone even if the 

person cannot know that he is being mistreated. This is why, even if the source of 

his suffering matters not to the patient with dementia, the distinction among 

causes is relevant for assessing morally the actions and agency of caregivers. 
T HE ETHICS OF CAREGIVING │ 147 

the consequences or potential consequences of our interventions, 

even if we are not fully responsible for them. 

Finally, we should acknowledge the frustration we may experience when we seem obligated to let a humanly indifferent 

nature “take its course” while prohibiting certain human acts—

like actively ending a painful life or deliberately seeking the end 

of life by an act of omission—that might relieve the burdens of 

chance. We should expect that we will continue to be troubled by 

the fact that our medical and moral tradition holds that there are 

some burdens we cannot rightly relieve entirely (if the only 

means to do so is turning against not just a treatment but a life). 

We will and should suffer at the suffering of others to whose 

care we are committed. Yet we should remember that aiming at a 

person’s death is always a kind of betrayal; standing with the suffering person, in the hardest times, is not—even if we might rage 

together with the patient at the God, or nature, or universe that 

permits such misery, and even if we pray with the patient for an 

end to a painful life that is nevertheless not ours to end. 

C. Moral Boundaries

The foregoing discussion of these various moral distinctions has 

shown, we believe, why it is difficult to state precisely how to define “best care” when patients who are suffering greatly are candidates for treatments that might extend their life, especially 

when such patients cannot choose for themselves and are entirely (or largely) in the hands of their caregivers. There are no 

simple formulae to guide us, and no algorithms for calculating 

the relative weights of benefits and harms. Seeking the best care 

possible will always require the wise and prudent judgment of the 

people on the spot: spouses and children, guardians and friends, 

doctors and nurses, social workers and hospice professionals. 

Yet prudence needs help from principle. Our ability to seek 

wholeheartedly for the best care possible under often very sad 

circumstances is immeasurably enhanced by the existence of certain moral boundaries that define the limits of possible choices 

and that prevent us from erring greatly when we are overcome 

with frustration, exhaustion, or moral confusion. These moral 

boundaries are in fact entirely in line with our medical-moral tra-
148 │ TAKING CARE

ditions, frequently renewed by reflection and adjustment through 

changing times. They are by no means the whole truth that prudence seeks to discern. Although they set boundaries to our deliberation and possible choices, they provide no formula for best 

care in particular cases. Further thought and reflection will be 

required to discern what we owe those for whom we must care. 

We recognize that we are entering on perhaps unprecedented times, the age of a mass geriatric society, with hundreds 

of thousands of people no longer able to care for themselves and 

unable to decide what kind of medical care they in fact want. We 

also recognize that there will likely be great pressure to alter these 

boundaries, as frustrated and unhappy caregivers look for easier 

ways out of the sad fate of having to expend mountains of care 

on persons who will only sink further into their prolonged and 

degrading decline. But relying partly on the strength of the moral 

exploration just completed, partly on the evident good moral 

sense of the boundaries themselves, we present the following 

moral boundaries as rules to guide prudent caregivers in action: 

• No active killing or assisted killing of another, no matter 

how painful or diminished a life has become 

• No aiming at death as a purpose of action, whether by 

acts of commission or omission 

• No imposing excessively burdensome treatments on others 

• No obligation to do what we cannot do in the role of caregiver, but the obligation to see how much we can do 

without destroying or deforming everything else in our 

lives (we will analyze this moral precept more fully below) 

We can also state the clear grounds for forgoing lifesustaining care: 

• When the treatment itself is excessively burdensome for 

the patient 

• When the treatment is useless 

• When a better death is possible in circumstances where 

death is proximate (for example, by allowing an irre-
T HE ETHICS OF CAREGIVING │ 149 

trievably dying patient to remain at home in the company 

of family rather than go to the hospital) 

As we have already noted, respecting these boundaries does 

not suffice to reach the concrete conclusion of what constitutes 

best care in individual cases. And as we shall soon demonstrate, 

we recognize that there will be hard cases that put our ability to 

abide by these rules to the test. Still, we think that these boundaries will and should guide us as we struggle to keep faith with the 

duty to care and as prudence guides us to act affirmatively in the 

service of our loved ones’ well-being. 

Before leaving the general considerations of caregiving to 

examine concrete cases, we should emphasize that ethical caregiving is not primarily about following rules of right conduct or 

observing moral boundaries, important though these are. It is 

primarily about creating the disposition to care and cultivating 

the habits of caring, often in the face of great obstacles and at the 

cost of considerable time and resources. Ethical reflection of the 

sort engaged in here cannot, by itself, produce the requisite traits 

of character, neither in individuals and families nor in the larger 

community. But it can begin to sharpen the gaze and deepen the 

understanding, without which even a good heart can sometimes 

be led astray. By pointing us to the proper target—best care—

and by showing us the limits of proper conduct, these theoretical 

discussions, admittedly far from both public policy and the daily 

practice of medicine and nursing, can improve our aim and limit 

our failings as we try to meet our obligations, case by case, 

thereby manifesting and acquiring the caring character so indispensable to the task ahead. 
150 │ TAKING CARE

 

ENDNOTES 

1 Xenophon, Apology of Socrates I.15, translated by H. G. Dakyns, Project Gutenberg, January 1988. Available online at http://www.gutenberg.org/etext/1171 

(accessed September 5, 2005).

2 Osler, W., The Principles and Practice of Medicine. 3rd ed. New York: D. Appleton, 

1898, pp. 108-137.

3 See, for example, Davis, John K., “The Concept of Precedent Autonomy,” Bioethics 16: 114-133, 2002.

4 See presentation by Dr. Joanne Lynn at the March 3, 2005 meeting of the 

Council, the transcript of which is available online at http://www.bioethics.gov.

5 These distinctions have been explored by many ethicists and some previous 

advisory commissions. We note especially Paul Ramsey’s pioneering work, The 

Patient as Person, New Haven, CT: Yale University Press, 1970, Chapter Three, 

“On (Only) Caring for the Dying,” and a report by The President’s Commission 

for the Study of Ethical Problems in Medicine and Biomedical and Behavioral 

Research, Deciding to Forgo Life-Sustaining Treatment, Washington, DC: U.S. 

Government Printing Office, 1983. An earlier treatment of some of the issues 

covered in this report resulted in The Hastings Center’s Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying, Bloomington, IN: Indiana 

University Press, 1987.

6 See, for example, Ramsey, op. cit. 7 See, for example, Kelly, D. F., Contemporary Catholic Health Care Ethics, Washington, D.C.: Georgetown University Press, 2004, pp. 128-133. See also, Kelly, G., 

Medico-Moral Problems, St. Louis, MO: The Catholic Hospital Association of the 

United States and Canada, 1958.

8 “The Hippocratic Oath,” translated by Leon R. Kass, M.D., in Being Human: 

Readings from the President’s Council on Bioethics, 2003. See also, Kass, L. R., “Neither 

for Love nor Money: Why Doctors Must Not Kill,” The Public Interest 94: 25-46, 

Winter 1989.
4 

Ethical Caregiving: 

Principle and Prudence in Hard Cases

In this chapter, we move from general considerations and basic 

principles to consider ethical caregiving as it is actually practiced: 

in concrete human situations, with real patients, concerned family members, and an array of medical professionals intimately involved in providing care. Our goal in the following case discussions is to explore how devoted caregivers should approach 

treatment decisions in a range of complex clinical situations—

always aiming at best care for the person now here, and always 

working within the ethical boundaries articulated above. 

Every clinical case is unique, with innumerable medical and 

personal factors that need to be considered—factors that are always changing. With dementia, caregivers are rarely handling a 

single medical condition or personal problem; they are usually 

juggling multiple issues at once—ranging from ongoing ailments 

to worsening risk factors to acute diseases, and ranging from 

family struggles with day-to-day care to worries about finances to 

caregiver exhaustion and depression. In specific clinical cases, 

caregivers often need to make decisions based largely on probabilities—the probability that a given disease will progress without treatment, the probability that a treatment will work to the 

desired effect, the probability of complications and side effects, 

or the probability that the person’s dementia will worsen quickly 

or slowly. 

But ethically responsible caregivers also operate within certain firm moral boundaries—central among them the obligation 

never to seek a patient’s death in making decisions about a person’s care. This complexity requires us to think through many 

larger ethical issues in the context of particular cases—where the 

aim is always to care and never to kill, always to benefit the life 

the patient still has, even as the person’s powers decline, depend-
152 │ TAKING CARE

ence becomes total, life options are limited, and death looms ever 

closer. 

In presenting these cases, we have three interrelated purposes. First, we wish to demonstrate by example what it means 

to think seriously about “best care,” served by loving prudence, 

beyond the procedural solutions of “let each family decide” or 

“consult the advance directive.” Second, we seek to show the 

great complexity and moral difficulty often involved in deciding 

how to provide best care, precisely because the best course of 

action is frequently far from obvious. And third, we aim to show 

how, even in hard cases where there is no obvious good choice, 

prudence can probe deeply how best to care for the particular 

individuals for whom we are responsible, all the while respecting 

those ethical boundaries that should be respected by everyone. 

At least as important as the “bottom line” in each case is the 

character of moral reflection and the manner of moral reasoning 

required to judge and act well. 

In discussing cases of ethical caregiving, it is important to 

remember that we are addressing not only the professionals in 

hospitals, nursing homes, and hospices. We are also addressing 

audiences both more private and more public: family members 

and friends who participate in making decisions for loved ones; 

public policymakers, directors of caregiving facilities, and others 

who form the ideas and set the practices that shape how the 

more immediate caregivers think and act when called upon to do 

so. It is also necessary to remember that the “hands-on” caregivers, the principal actors in our caregiving cases, are not professional ethicists nor generally given to long discourses about the 

whys and wherefores of their recommendations and decisions. 

As human beings and members of our society, they have moral 

ideas and intuitions that guide them at the bedside; as professional caregivers, they have certain standards of care that they 

pledge to follow; as clinicians, they wrestle concretely—not at the 

level of abstract moral principle—with hard choices when values 

they hold dear are in tension. At the same time, however, it is 

also true that patterns of practice call for justification, especially 

when they are challenged by appeals to novel principles or demands for new procedures. Challenged or not, these patterns of 

professional care come to shape and reflect broader public judg-
P RINCIPLE AND P RUDENCE IN HARD CASES │ 153 

ments about how to think and what to do when the thinking and 

doing become very difficult. We trust that practitioners reading 

these case discussions will see the merit in trying to think things 

through and to offer discussable reasons for whatever course of 

action is under consideration. In matters this weighty, we need to 

generalize our experiences, in search for wisdom in the face of 

often tragic choices. 

We offer two additional caveats: First, one central idea of 

this report is that caregivers in particular and society as a whole 

must never lose sight of the humanity of those persons with dementia entrusted to their care—which is to say, the unique histories and life stories that define the richness of the life now moving toward completion. Yet the following cases, presented in 

ways to permit exploration of moral problems that caregivers and 

patients may experience, risk losing the fine texture of the persons and lives they so minimally describe. We are aware that such 

an approach risks encouraging the very dehumanization of persons with dementia that we are in this report trying to combat, 

and we urge the reader to lean against any such apparent intimations or suggestions. 

Second, these cases leave many precise clinical details undescribed: just as every life is unique, so is every medical situation. 

In trying to be somewhat paradigmatic, we risk losing or deforming the realities of the bedside, and risk leaving unexplored the 

clinical details that are often central in deciding what the best 

possible course of action truly is. With these caveats in mind, we 

nevertheless hope these case discussions might enrich our thinking about what “best care” really means in practice and how 

principle and prudence can operate together to do right by those 

for whom we are summoned to care. 

We organize the discussion that follows thematically, by 

considering cases that highlight the following issues: (1) the distinction between deciding for oneself and deciding for others; (2) 

the significance of dementia and its stages; (3) the meaning of 

well-being for persons with dementia; (4) the significance of living wills; and (5) the well-being of caregivers themselves. 
154 │ TAKING CARE

I. DECIDING FOR ONESELF 

AND DECIDING FOR OTHERS 

We begin by exploring the moral differences (and similarities) 

between deciding for oneself in a still competent state and deciding for 

another who has become mentally incapacitated. Consider, in this 

vein, the following case: 

Whatever judgments we might make about the moral propriety of the individual’s decision to forgo all treatment for heart 

disease, it would be a different matter if his family or doctor 

sought to deny him future care because of his probable diagnosis 

of early-stage Alzheimer’s. Perhaps his reasons for declining 

treatment are sound; perhaps they are not; perhaps we can never 

know for certain. We will shortly explore the possible reasons 

why he does what he does, and consider the possible moral 

meanings of his choices. But clearly it would be morally misguided for others to deny treatment if the patient himself wanted 

A married man, in his sixties, has two adult children who live far away. 

He has cared for two parents who have suffered and eventually died from 

Alzheimer’s disease, and he begins to notice his own lapses of memory: 

forgetting to turn off the stove, losing track of the time, forgetting the 

names of colleagues, repeating himself in conversations. He suspects (and 

his doctor agrees) that he is probably in the very early stages of Alzheimer’s disease, and he surmises from personal experience where he is 

heading and what his life will likely become. He knows he would prefer 

a shorter and still lucid life to a slow decline into total dependency—with 

the accompanying erosion of self-control and loss of shame, and with the 

possibility of behaving in sexually inappropriate ways as his father did or

becoming incontinent and immobile as his mother did. For years, he has 

also been treated for high cholesterol and high blood pressure, and his 

doctors tell him that the blockage in his left-main coronary artery is severe enough that he is a candidate for bypass surgery. As his cognition 

begins to weaken, he is still aware of his overall condition. He decides to 

stop taking all his heart medication, and he makes clear to his doctor 

and family: no surgery—ever. How should his family and his doctor 

respond?
P RINCIPLE AND P RUDENCE IN HARD CASES │ 155 

it, and not only because of the coercion involved. In making such 

a decision, the individual’s family and doctors would be sending 

the clear message that they would rather see him dead than suffer 

advancing dementia; that his coming life will be an unjustified 

burden to them and to society; and that he lacks all basic claims 

on care because of his probable diagnosis and looming decline. 

Such a denial of care is not only coercive, it is dehumanizing. 

Denial of care, of course, represents an extreme. Further 

analysis would be required to show why it would be impermissible for family members or doctors to suggest to the patient, had he 

not thought of doing so himself, that he could, if he wished, stop 

taking his heart medications as a form of “Alzheimer’s prevention.” But neither denial nor discouragement of treatment is the 

issue here, but rather acquiescence: should the doctor and family 

endorse or accept the patient’s decision to stop his medications 

and to refuse all further treatment of his cardiac condition? 

In reality, of course, such a thought would not likely occur 

to them. In most such cases, the patient’s family members and 

doctors would probably resist vigorously his decision to forgo all 

future treatment. They would urge him to continue his medications and perhaps even to undergo bypass surgery. Even the loving wife who admires her husband’s nobility and self-command, 

or the family physician who knows what the individual went 

through in caring for his own parents, would likely balk at his 

seeking or inviting an avoidable and earlier death. But are there 

good reasons for the patient to resist their resistance, or for the 

individual to resist becoming a “patient” at all? What considerations determine whether his decision to forgo treatment is morally acceptable or morally sound? And should the range of morally acceptable choices be wider when the person decides to 

forgo treatment for himself, as opposed to when others decide to 

withhold treatment from and for him? 

The most obvious difference concerns the absence or presence of direct coercion: The patient’s decision is his own; it is not 

imposed on him against his will or without his full participation. 

The patient also makes what appears to be an informed decision, 

drawing upon his direct experience caring for his parents with 

Alzheimer’s and extrapolating forward to what it might be like to 

live in their condition and to need the kind of care he once pro-
156 │ TAKING CARE

vided them. Not only is he not coerced, he knows his own inner 

life in a way even those closest to him arguably cannot. He 

knows what he values, what he thinks he can endure, and what 

he hopes the final chapters of his life story will look like. 

It is, of course, possible that he has not reasoned this out, 

that he is reacting emotionally to the bad news, or that he is 

even, without knowing it, clinically depressed. But insofar as he 

has thought about his decision, any number of considerations 

might (alone or in concert) seem to him to warrant doing whatever he can to decrease the chances that he will have to endure 

the full course of Alzheimer’s disease. Perhaps he knows that he 

does not want to die incapable of recognizing his wife in his final 

months, or that he does not want to die after years in a nursing 

home. One can also imagine the range of goods that his decision 

to forgo treatment hopes to achieve: Positive goods, such as 

leaving an education fund for his grandchildren rather than 

spending down all his assets on nursing home care, and negative 

goods, such as ensuring that he never behaves in ways that erode 

the code of honor and decency by which he has always lived. 

People with Alzheimer’s sometimes do things that are normally 

considered shameful and offensive—such as making sexually inappropriate advances or undressing in public. Of course, the disease is the cause of the loss of inhibitions. Yet it is, in a crucial 

sense, still the person who acts, and seeking to avoid or preempt 

such behavior is a morally worthy goal, even if a particular means 

of doing so is morally questionable. 

But the seemingly clear differences between deciding for 

oneself and deciding for others need to be examined and questioned. To what extent, we must ask, are such momentous decisions ever fully “one’s own”? As Robert Burt explored in Taking 

Care of Strangers, people often make the choices that they believe 

others want for them.1 Perhaps the patient imagines that his wife 

and children do not want to care for him, and perhaps his decision to forgo treatment reflects his assessment of their hidden 

wishes more than his own desires. Perhaps he does not trust his 

doctor to be able to guide him through the illness. Rather than 

confirming these suspicions by acquiescing in his decision, his 

family, friends, and physician should explore these matters with 

him, explicitly and thoroughly. 
P RINCIPLE AND P RUDENCE IN HARD CASES │ 157 

In addition, they should ask him to consider how his decision might affect the web of relations he most values. Has he 

considered that his choice to forgo treatment might send the 

message that he does not really trust his family members to be 

devoted caregivers or that he does not believe they are capable of 

caring for him? And has he given adequate thought to the potential moment of crisis—the sudden heart attack—that his decision 

to forgo treatment makes more likely and perhaps deliberately 

invites? Does he expect his loved ones or neighbors simply to 

watch him die rather than call the paramedics? Has he considered 

what it will be like for his family to suffer the ordeal of rushing 

him to the hospital, hoping to save him, living through the experience of triage, fearing and perhaps losing the possibility of 

saying goodbye? If he survives the heart attack, he might end up 

in a severely debilitated condition, or else die a lingering death 

from chronic heart failure, with shortness of breath and swelling 

of the extremities, rather than dying suddenly as he might have 

wished. If he does indeed die suddenly, has he considered how 

his choice to forgo preventive treatment might affect the way his 

wife and children will remember him? 

In seeking to avoid the worsening degradations of Alzheimer’s disease, he probably worries deeply about being remembered in a distorted way, not as the person he has long been 

but as the person whose self is hollowed out by dementia. But 

what about the potential distortion of being remembered as 

someone who sought an earlier death by deliberate acts of omission, or someone whose actions helped precipitate a death in crisis? Would this be seen as a sign of his noble willingness to accept an earlier death to prevent becoming wholly dependent on 

others, or as a mark of his timidity in the face of a difficult death 

by dementia? 

In reality, individuals, though free to choose, never simply 

decide solely by and for themselves, even when they are fully 

competent. The present patient’s decisions reflect, in part, his 

image of himself in the eyes of others, and his decisions affect 

the course of their lives. More generally, our identity and values 

always take shape within a network of human relations. The individual may know himself from the inside, but his inside knowledge is shaped by his understanding of how others understand 
158 │ TAKING CARE

him. And his inside knowledge, never final or definitive, is always 

open to transformations of self-understanding in light of new 

circumstances, at least as long as he is still self-aware. A discussion with those affected by his decision or with his trusted physician could very well lead to such a transformation of outlook, 

and they should certainly attempt it. 

Beyond doubt, the competent individual should be accorded 

greater freedom of choice in making treatment decisions than 

should surrogates deciding for others. It is always possible that 

the individual knows aspects of his own life story that no one 

else can know, and with this privileged perspective his wishes 

deserve heightened respect. And surely, competent individuals 

should never be coerced to accept treatments they do not want, 

even after attempts at thoughtful persuasion have failed. 

But the competent individual’s greater freedom to decide 

does not mean that every permissible decision is morally sound, 

or that his loved ones should simply accept his choices as necessarily right or necessarily final. Moreover, this freedom of action 

operates within certain widely accepted moral limits: even if the 

law allows it, an individual is not morally justified to act deliberately to achieve his self-destruction. And although the individual 

deciding for himself rightly exercises greater freedom than surrogates deciding for others, the moral criteria for deciding for oneself and deciding for others are actually quite similar. In both 

cases, what matters most is what we actually do in service to our goals

and the reasons for seeking or forgoing particular treatments in 

particular circumstances. And in both situations, the person or 

the surrogate is making a decision about whether the life in question is worthy of continued care and about whether the life in 

question requires protracted preservation. 

Let us return to the case itself, and what the doctor might 

say to the individual in this situation: “Yes, you are probably in 

the early stages of Alzheimer’s. But the trajectory of that disease 

is long and gradual, you have much good life left to enjoy, and 

you can count on me to help you negotiate your way. I will be 

with you, through good times and bad. But that it is not now my 

most pressing concern. Your heart disease is getting worse. You 

need to continue your daily medications. You need to begin a 

stricter heart-healthy diet. You need to exercise more intensively. 
P RINCIPLE AND P RUDENCE IN HARD CASES │ 159 

And you are a candidate for immediate bypass surgery, and I recommend that you have it very soon.” 

In speaking with the patient, doctors and family members 

must take seriously the moral reasons why the individual might 

seek a course of life that, although shorter than it need be, does 

not end in dementia. Perhaps he believes that suffering a heart 

attack is a more humanly fitting way to die—facing death with 

the powers of memory and self-awareness still largely intact, 

without the deformations that long-term care can sometimes impose on families. And perhaps he concludes that he has no moral 

obligation to accept medical care that seems likely to rob him of 

this more fitting death and condemn him instead to what he sees 

as a dehumanizing death by way of dementia. Why must he cede 

control of his destiny to the medical inventions and interventions 

of others? Why must he visit or call the cardiologist in the first 

place? 

Yet there are sound moral answers to these questions. We 

are ethically free to accept a higher risk of death or expose ourselves to a foreseeable death in the course of choosing a particular kind of life—such as a soldier serving his country on the 

frontlines or a policemen working in a gang-infested neighborhood, where death by gunfire may be the likely cost of bravery, 

or a physician tending patients suffering from plague or performing surgery on patients with AIDS, where death by contagion 

may be the possible cost of compassionate care. But it is hard to 

see, in this case, how ceasing heart medication is essential for living a particular kind of life, a life in which being un-medicated is 

the necessary cost of living well in the present. It is hard to see 

the moral grounds for stopping such medication now (that is, 

upon learning the diagnosis of probable Alzheimer’s)—assuming 

the drugs have no burdensome side effects, and assuming the 

economic burden of the drugs is minor. 

The most likely reason for the patient to stop treatment now

is to increase his chances of dying earlier, or of dying this way (heart disease) rather than that way (dementia). Taking heart medication 

does not preclude living now in the way he wants to live; the 

drugs are not a barrier to present goods or a direct cause of present distress. And unless an individual has an established pattern 

of resistance to taking such drugs—for example, for religious 
160 │ TAKING CARE

reasons, akin to those who reject blood transfusions—there 

seems to be no decisive moral difference between stopping 

medications in-process and deciding not to start medications that 

are newly indicated: in both cases, one forgoes treatment with an 

earlier death as the goal, or with an earlier death as the potential 

means of achieving other goals (such as never burdening loved 

ones or never becoming incontinent). Even if the individual 

rightly possesses the freedom of action to make such choices—

that is, to reject needed medications—his loved ones are morally 

right to resist.* 

It is, of course, possible that the person sees his choice not 

as expressing a desire to die sooner but as a desire to live out the 

remainder of his life in a certain way. He might even think or say 

something like this: “I am a person coming to the end of my life 

and its projects. I trust in God and I am reconciled to my fate. 

My obligations to my body are present but limited now. It is okay 

for me to decide about medical treatments in a way that makes it 

more likely that I’ll live out my natural life in the family and 

home I love, aware of salvation and relationships. It is acceptable 

to all to make such choices. I am not a prisoner of medical advances that would condemn me to a more troubled course.”† 

This is a more difficult argument to answer. Yet even here, 

the patient’s family and his physician could rightly argue back, 

making the case for the goodness of the life still at hand, reminding him of the burdens that his choice might be inflicting on 

those who love him, and reassuring the patient that a commitment to treatment now need not mean that he will in the future 

become a prisoner of unwanted medical innovations when he 

comes closer to his death. Persuading the patient to change his 

mind about taking his medications still seems to be the course of 

loving prudence. 

The duty to exercise more frequently or to eat more restrictively is a different matter. If life’s primary goal were merely optimizing health and longevity, then good diet and regular exercise 

 

* To be sure, such resistance has its costs and, hence, its decent limits. The family 

should not resist to the point of driving themselves apart or of inflicting strife all 

around. 

† We owe this insight and example to Dr. Joanne Lynn.
P RINCIPLE AND P RUDENCE IN HARD CASES │ 161 

would be one’s primary obligations. But we seek to be healthy in 

order to live well, not the other way around, and many of the 

things we rightly enjoy in life are—to say the least—not always 

conducive to maximizing longevity. It would be entirely understandable if our patient—mindful of his impending descent into 

dementia—would like to relax and enjoy life in his last years of 

lucidity more than he could under the heart-healthy regimen. 

Perhaps he wishes to spend more time reading and less time on 

the treadmill, or wants to enjoy large pasta dinners instead of 

dressing-free salads, or wants to continue his favorite pastime of 

shoveling snow even though his doctors recommend against it. 

In choosing to forgo the ideal regimen of diet and exercise, the 

individual is choosing one kind of life over another. He is choosing some goods (the pleasures of eating) over others (the greater 

chance of longevity). He is not simply acting so that he might die 

sooner, even if his actions make it more likely that he will. 

The patient’s choice to forgo bypass surgery also seems 

morally defensible, if not the only morally permissible choice under the circumstances. Bypass surgery is an experiential and 

physical ordeal—with serious risks, grave burdens, and various 

uncertainties. It disrupts personal life and family life. It requires 

hospitalization and a considerable period of recovery, in which 

being a patient is the core of one’s existence for weeks and often 

months. It even carries a high risk of yielding a major drop in 

cognitive function. Although statistically it tends to extend 

healthy life, there are good reasons to opt against it, just as there 

are good reasons to opt for it. Another person, in the same situation, might rightly decide to have the surgery as soon as possible, 

so that he can recover and improve physically while his mental 

faculties are still relatively sound and the effects of Alzheimer’s 

are still fairly limited. But the individual in this case is on solid 

moral ground in rejecting bypass surgery even if his doctors recommend it, and even if his family encourages him to have it. 

Let us consider a slightly different case: What if, instead of 

being a person with heart disease, the individual was a (longlived) type-1 diabetic, absolutely dependent on regular insulin 

shots? And what if, upon learning of his probable Alzheimer’s, 

he decided to spend a few wonderful weeks with his family, say 

goodbye, and stop taking his shots, so that he lapses into a dia-
162 │ TAKING CARE

betic coma resulting in his imminent death. Unlike forgoing heart 

medication or rejecting heart surgery, this decision makes very 

likely a certain kind of death rather than simply altering the probable course of death. It ensures death now rather than awaiting a 

still unknowable death in the future. Although taking insulin 

shots is a marginally greater burden than taking heart medication, 

this marginal burden hardly justifies the decision to embrace 

death now by a deliberate act of omission. In this case, the individual’s moral freedom should give way to the moral limits that 

rightly constrain that freedom. And although the competent individual cannot be forced to take insulin against his will, his family and doctors are justified in exerting every decent means to 

alter or reverse his death-seeking decision. 

Consider yet another case: What if the patient with probable 

early-stage Alzheimer’s gets diagnosed with a form of cancer that 

is treatable with a reasonable probability of cure but deadly if left 

untreated. The treatment of chemotherapy followed by radiation 

would require a disruption of his current life—regular trips to the 

hospital over an hour away, considerable discomfort and nausea, 

general fatigue—but not unendurable physical suffering. Untreated, the progression of the cancer would leave the patient 

largely unaffected for a while, with things getting worse toward 

the end, with a relatively swift decline and death in an estimated 

nine to eighteen months in the future. In this case, the individual 

sees two possible paths before him: the first path involves disrupting his current routine, possibly curing his cancer, and extending a life likely marked by worsening Alzheimer’s; the second 

path involves enjoying the life he now has without disruption or 

burdensome treatments, living with a worsening cancer that will 

eventually kill him, and probably dying before his Alzheimer’s 

hollows out all recognition of himself and his loved ones. 

Unlike forgoing heart medications, a choice to forgo cancer 

treatment involves avoiding a burdensome treatment. And it involves accepting a relatively predictable progression toward 

death, rather than increasing the chances of having a deadly heart 

episode and thus inviting a future moment of crisis, for which his 

loved ones cannot really prepare. And unlike type-1 diabetes, an 

ailment that the hypothetical patient above had been treating 

throughout his life, with treatment already a part of his routine 
P RINCIPLE AND P RUDENCE IN HARD CASES │ 163 

and not an impediment to it, the cancer diagnosis is new and the 

treatment will be a major disruption. In the end, this is a case 

where each individual should rightly decide for himself what is 

the best course—doing his best to make such decisions in concert with loved ones, and resisting the temptation to see cancer 

as simply a means to avoid the later ravages of advanced dementia. The decision to forgo cancer treatment in this case, if rightly 

made, will aim at a certain kind of life until the end, not at a certain kind of death sooner rather than later. 

Finally, how would this ethical analysis change if the individual’s dementia progressed to the point where surrogates had to 

make all medical decisions on his behalf? And what weight 

should be given to the preferences he expressed while he was still 

competent? The latter question we will take up more fully in the 

case below on advance directives. But in general, surrogates 

should make decisions that aim at best care for the person now 

here: They would have no clearly compelling reasons to withhold 

his heart medication, assuming there are no intolerable side effects and assuming the cost of the medications is not excessively 

burdensome to the family. They might even be morally justified 

in resuming the medications that the once-competent patient had 

previously chosen to stop. They should encourage those foods 

and activities that seem to promote and augment their loved 

one’s happiness. They should almost certainly forgo heart bypass 

surgery, rejecting it as unduly burdensome, especially when the 

patient cannot be a full participant in his own treatment and recovery, and because by then his physical capacity to endure such 

a procedure has probably weakened along with his dementia. 

And they should surely continue insulin shots if the patient were 

to suffer from diabetes. To do otherwise is to seize an occasion 

for death, and thus to treat the life being cared for as unworthy 

of continued care. But they should not begin aggressive cancer 

treatments that the person himself knowingly chose to forgo. 
164 │ TAKING CARE

II. THE SIGNIFICANCE OF AGE-RELATED 

DEMENTIA AND ITS STAGES 

As we move now to consider the dilemmas of caring for those 

with dementia who can no longer direct their own care, we must 

first inquire more precisely about the significance of age-related 

dementia itself, and whether this particular condition differs 

from other forms of disability and dependence. That is to say: Is 

the presence of dementia a morally legitimate factor in denying 

or forgoing treatment? Is the person with dementia morally different from—and should she be treated differently than—the 

lucid elderly person with severe physical debilities, or the mentally incompetent younger person who did not lose his mental 

powers with age but never had them at all? 

There is, of course, a difference between the nevercompetent person and the once-competent person, and this agerelated transformation seems to matter, humanly speaking. The 

person who late in life develops dementia is no longer the wise 

father but the needy one; he is no longer the husband who remembers every wedding anniversary but the man who cannot 

recognize his wife; he is no longer the grandfather who takes the 

young to the zoo but the man who acts strangely in the nursing 

home. The question, however, is what these changes mean, if 

anything, for how we regard our loved ones as patients, and 

whether their psychic loss is a disability that makes their dependence morally different in kind. 

In the case of total physical dependence, the person is no 

doubt also transformed, and his or her physical neediness may 

bring about significant psychic change. But even in a state of total dependence, such a person might still direct his or her own 

care, or at least be involved in many caregiving decisions. Moreover, the dependent elderly person who is still cognitively selfaware may still acknowledge his special attachment to the loved 

ones who now care for him—perhaps with a mix of gratitude for 

being helped, sorrow at lost pastimes, and shame at being so 

needy. 

With advanced dementia, however, the situation is somewhat different. The beloved person is still present—still the same 

person in body, with a continuous life trajectory. But he is also, 
P RINCIPLE AND P RUDENCE IN HARD CASES │ 165 

in a certain sense, increasingly absent. He is both always himself 

and no longer himself. And although the same thing might be 

said regarding all forms of decline and dependence—the great 

dancer in a wheelchair is also no longer as she once was, certainly 

not in the way that once defined her—cognitive loss seems to be 

existentially different. The great dancer in a wheelchair still 

knows she was once a great dancer (though whether such knowledge makes life better or worse, easier or harder, is not a simple 

question). The great mathematician, now demented, knows nothing of his former life. 

In clinical situations, these puzzling theoretical questions of 

identity and personal continuity give way to urgent practical 

questions of how vigorously to treat the supervening or concurrent illnesses that the patient with dementia also suffers. There is 

no question but that physicians tend to be more aggressive in 

treating serious illnesses in thirty year olds than in eighty year 

olds, partly because younger patients generally tolerate treatments 

better, but also because everyone tacitly recognizes that the old 

patient is closer to the end and that, beyond good standard medical care, certain treatments that are probably regarded as obligatory in the young (“ordinary care”) will probably be regarded as 

optional in the old (“extraordinary care”). But within this general 

approach to aggressive treatment at various stages of life and 

health, the relevant question before us now is whether the special 

changes in mentation and self-awareness that come with dementia should affect decisions about medical care. Does a person 

with dementia have a lesser claim on or lesser interest in essential 

medical treatment solely by virtue of his dementia?* Is he less a “person,” and thus more ready for life to be over? And if the goal is 

providing the “best care possible” for the person with dementia, 

how does dementia itself influence or shape what best care requires? 

 

* Alzheimer’s disease is, of course, more than the dementia through which it most 

prominently manifests itself. As we indicated earlier, it is a progressive and ultimately fatal disease—unlike the multi-infarct vascular dementias that may or may 

not be part of a fatal picture. This means that differential treatment of patients 

with Alzheimer’s might be based not on the presence of dementia as such but on 

the whole disease process. This fact becomes more relevant in thinking about 

treatment decisions in the middle and late phases of the disease. 
166 │ TAKING CARE

The general answer seems to be two-fold: As argued above, 

the fundamental equality of human beings suggests that human 

worth, in the caregiving setting, does not depend on possessing 

particular capacities or particular qualities. To discriminate 

against patients because they suffer dementia is to violate this first 

principle. At the same time, as dementia advances, the systems of 

the body begin to shut down; and different choices might be 

made as the patient gets closer to death, even when death is not 

yet imminent.*

To consider these questions in concrete cases, we need to 

make three crucial distinctions: First, we need to distinguish between the different stages of dementia, and to ask whether a person’s 

level of mental decline is in itself a relevant factor for shaping 

treatment decisions. Second, we need to distinguish between 

“good days” and “bad days,” and pay close attention to the fluctuating cognitive capacities exhibited by many persons with dementia. And third, we need to distinguish between conditions 

and complications: Dementia is a condition that might be used 

(wrongfully) in itself as a moral ground to treat patients differently; but dementia is also a source of ethically relevant special 

complications that must be faced and evaluated by caregivers in the 

clinical setting, especially when dementia patients cannot understand the value or necessity of a given treatment. 

 

* Compare the situation of advanced Alzheimer’s with two other clinical cases: (a) 

the young person in a persistent vegetative state and (b) the middle-aged person 

in late-stage terminal cancer. In the case of the persistent vegetative state, the 

person lacks all cognitive capacity, but she is not suffering from a degenerative 

condition. In many cases, the patient is stable; the body is not shutting down, 

even if it requires artificial feeding to sustain it. In the cancer case, the body may 

be breaking down, but the persistence of self-awareness means that the struggle 

for life still continues in a unique sense; the personal will to fight on exists in contradistinction to the realities of bodily breakdown. With advanced Alzheimer’s 

disease, however, there is neither stability as the body begins to fail nor the presence of a self-conscious patient struggling for life. This unique combination of 

cognitive and physical breakdown, this clinical instability combined with advanced age, raises questions as to whether the dying process has already begun 

and whether death should continue to be opposed. Perhaps some treatments are 

better seen not as preservation of life but as prolongations of the dying process, 

even if such prolongations last for a while. 
P RINCIPLE AND P RUDENCE IN HARD CASES │ 167 

To see how dementia might affect the decisionmaking of 

surrogates, let us consider how we should care for the following 

person, suffering from bacterial pneumonia, at five different 

stages of her life: 

Are there any moral grounds for treating the person’s bacterial pneumonia differently at these different points in her life, and 

if so, why? Let us assume she has no living will, and that she has 

always trusted her daughters to take good care of her as she 

grows old. The decisions (in her later years) regarding medical 

treatment thus rest entirely on the daughters’ judgment about 

best care for their elderly mother, a judgment that will depend in 

part on the moral meaning they ascribe to her worsening dementia and her increasing nearness to death. 

(1) As a healthy ten-year old child. 

(2) As a healthy middle-aged woman with three children of her own. 

(3) As a woman in her late sixties. She is showing the first signs of 

memory loss—forgetting to turn off the stove, getting lost on the way 

home from the market, forgetting to pay bills—but she still knows 

who she is and who her loved ones are. 

(4) As a woman in her early seventies. She remembers little, generally 

does not seem to recognize her children when they come to visit her in 

the assisted living facility, and does not seem to recognize the caregivers 

who see her day to day. But she seems generally happy and content, 

still knows how to say hello to those who greet her, and, although ambulatory, spends most of her time just sitting before the television. 

(5) As a woman in her middle seventies. She says almost nothing, 

and what she says makes little sense. She needs to be reminded to eat 

and requires feeding by others. She is bedridden and losing control of 

her bodily functions, but she is basically a calm and compliant patient, and seems to like having her hair brushed, though it is hard to 

tell for sure.
168 │ TAKING CARE

In stage 1, the girl’s parents are clearly deciding on her behalf, 

and they have a clear moral obligation to treat her pneumonia. In 

stage 2, the woman is deciding for herself, and one can see no obvious reason to forgo treatment (if the patient is not opposed in 

principle to all medical interventions, as are adherents of Christian Science). In stage 3, the woman is still able to understand the 

need for treatment once it is explained to her, but she probably 

needs assistance getting to the doctor, following through on her 

medications, and navigating among different health care providers. She is no longer the sole director of her own care, but she is 

still a full and active participant in her own treatment. She may 

be frustrated by her fading powers and growing dependence on 

others, but she still values life, and the good of treatment seems 

clear. 

By stage 4, all her decisions need to be made for her, and 

explanations of her sickness and treatment are beyond her comprehension. She is a needy recipient of care, and the sufferings of 

her body may prompt physical expressions of dismay akin to a 

child’s cry. But she is no longer a knowing seeker of care, and 

those who actually care for her—daughters, doctors, and 

nurses—are indistinguishable to her. Yet in the case as described, 

her health is not in rapid decline. Hence, the only apparent 

grounds to deny her treatment for her pneumonia would be that 

life without memory of the past or control of the future is simply 

not life worth living or that there are even worse futures coming, 

as indeed there are. In other words, dementia as a degenerative 

and debilitating condition would be the reason to stand aside in 

the face of a disease that is easily treated but potentially deadly if 

not treated. To say no to treatment in this case is to declare that 

death is preferable to life with this degree of dementia (or worse), 

or that dementia means being a “non-person” ready to die. But 

does saying yes to treatment depend entirely on the fact that she 

still seems to get some experiential satisfactions from being alive, 

even if she does not experience the present in connection to her 

personal past? In other words: Does the worth of being alive depend decisively on the enjoyment one takes in being alive? 

This becomes an issue in stage 5, when even the limited experiential pleasures or experiential interests of her earlier dementia seem to be fading or gone. The caregivers must now distin-
P RINCIPLE AND P RUDENCE IN HARD CASES │ 169 

guish between enjoying the present with little sense of the past 

(as in stage 4), and having apparently little or no active sense of 

the present itself (as in stage 5). Does the woman in stage 5 still 

have a life that we can benefit by treatment, and do we benefit 

that life by curing the pneumonia that assaults it? Does she 

have—or, even if we cannot be sure, might she have—levels of 

awareness (even if physiological more than cognitive) that recognize and respond to changes in how her family and her doctors 

and nurses choose to treat her? 

Unless there are complications that make the very activity of 

providing treatment a burden, or unless there are other health 

problems that suggest that her systems are shutting down and 

that she is irreversibly dying, the only ground for denying treatment seems (yet again) to be the judgment that her life should 

now come to an end. Non-treatment seems to entail the view 

that the life she now has is no life at all, meaningless and degrading to her and not worth the labors required to sustain it. Such 

labors are surely great for the caregivers—emotionally, physically, 

and financially. And the patient’s life experiences and life options 

are severely limited. But it is also hard to see how deliberately 

acting with the intent or hope that her life come to an end, however well-meaning one’s motives, is actually a form of best care for 

the person as she now exists. And it seems hard to imagine how one 

could withhold treatment from the patient in stage 5 without intending that she die.*

Looking beyond this particular case, any decision to treat a 

person with dementia differently simply because of the condition itself

seems to require accepting one of the following propositions: 

 

* In order to focus only on the relevance of the degree of dementia, the case as 

presented supposes a simple case of community-acquired pneumonia, manifested 

in cough, fever, shortness of breath and general misery, but in the presence of 

adequate blood pressure and good enough cardiac and renal function. But if the 

patient were in shock or suffering kidney failure, and the pneumonia were just 

one manifestation of generalized breakdown and a harbinger of more or less imminent death, the benefits of treating the pneumonia would be highly uncertain. 

Antibiotic treatment would be less likely to succeed; and even if successful, the 

patient might be relegated to spending the rest of her life in the intensive care 

unit. Under these circumstances of vital organ system failure, treatment of the 

pneumonia would become optional, not only for the person in stage 5 but perhaps even for the person in stage 4.
170 │ TAKING CARE

(a) that human dignity resides foremost in our sustained mental 

capacities, and that a human being with severe dementia is no 

longer a person, but a body without a person; (b) that the person’s wishes before becoming mentally incapacitated should always be honored, and that if the once-competent person stipulated the cessation of medical care in the case of dementia, this 

particular act of self-definition should always be respected, no 

matter how much a demented person may still seem to have a 

life, and even a seemingly happy one; or (c) that the experience 

of becoming demented is so horrible—different in kind from being 

mentally incapacitated throughout life—that the progressive and 

irreversible loss of one’s powers justifies non-treatment. More 

specifically, to treat patients with dementia differently from other 

classes of dependent elderly persons, one must believe that dementia is in itself a special kind of disability or suffering; that 

treating intervening illnesses is a way of perpetuating the person’s 

degradation (that is, a kind of torture, not caregiving); that a person with dementia lacks dignity not because of his dependence 

on others for everyday needs but because of his changed cognitive condition; or that it is legitimate for an individual to believe 

that life with dementia lacks dignity, and thus permissible to direct his surrogates in advance to cease all care if he becomes demented. But for those who judge that being worthy of care and 

worthy of life does not depend on possessing certain cognitive 

capacities, such comparative judgments about the comparative 

worth of different lives seem morally misguided. Discrimination 

solely on the basis of dementia seems incompatible with the 

moral demands of equal respect and best care, an incompatibility 

that includes discrimination by a past self against a future self 

with dementia. 

In case situations like this one, in which the necessary medical intervention is modest, likely to be effective,* and does not 

 

* Accustomed as we are to the miracle cures of antibiotics, unimaginable by our 

grandparents, we are prone to overlook the fact that, despite the high success 

rates, even the treatment of the common pneumococcal pneumonia is not guaranteed to succeed. It can be followed by lung abscess, bacterial meningitis or 

brain abscess, septicemia with shock, empyema, endocarditis, and acute respiratory distress syndrome. Some of these complications of treatment would require 
P RINCIPLE AND P RUDENCE IN HARD CASES │ 171 

require a struggle with the patient or a dramatic disruption of the 

patient’s existence, treatment seems morally appropriate. But as 

the patient deteriorates and medical interventions become more 

complex and disruptive, that moral assessment will likely shift. 

We must ask whether aggressively treating the patient who can 

no longer be an active partner in her own recovery may turn the 

person entirely into an object, to the point where acting on the 

person no longer benefits the minimal life the person still has, 

but makes the person into a mere receptacle of technical intervention and the doctor into a mere technician. In cases like uncomplicated bacterial pneumonia, where treatment probably does 

not require a significant disruption of the patient’s routine or 

physical coercion, the ethical demands of best care clearly point 

toward treatment. But in cases in which treatment would require 

sedation, physical restraint, frequent re-locations, or other complicating factors, dementia may become a factor leaning against 

particular treatments: not because being demented lessens one’s 

moral claim on life, but because the treatment itself adds to the 

un-consenting and un-comprehending patient’s miseries, burdens, or degradations. We will consider these complicated cases 

more fully below, as we consider what it means to promote the 

patient’s well-being in the clinical context. 

III. THE WELL-BEING OF THE PATIENT 

In the collection of cases considered in this section, we explore 

in greater detail how concrete treatment decisions are related to 

the personal welfare of persons with dementia. But if caregiving 

aims to serve the well-being of the patient as person, we need 

some operative idea of what well-being means, and how the wellbeing of a person with dementia is both similar to and different 

from well-being for persons in very different physical and mental 

conditions. We also need in advance a more detailed account of 

the different types of treatment—with the various upsides, 

downsides, burdens, and uncertainties of different medical inter-

 

invasive, even heroic, measures. The simple treatment of simple pneumonia is 

not necessarily always simple. 
172 │ TAKING CARE

ventions. Therefore, as a prelude to the cases themselves, we will 

briefly consider (a) dementia and well-being and (b) the nature of 

treatment and the trajectory of illness. 

A. Dementia and Well-Being 

For most of life, we live both immediately and reflectively. We experience the physical and emotional ups and downs of the present moment—the pleasures of eating a favorite food and the 

pain of burning a finger on the stove. We smile when we see a 

newborn child and shudder when we see a stranger get hurt. But 

our well-being also depends on how we see ourselves critically 

and self-consciously—on aspirations fulfilled and unfulfilled, on 

human attachments made and broken, on values affirmed and 

compromised. 

With dementia, however, the reflective dimension of wellbeing fades and the person lives ever more immediately. The mature complexity of human relations is gradually replaced by the 

raw physical neediness more characteristic of an infant and the 

spontaneous (and not always appropriate) reactions to the presence of others and to their words and deeds. Life informed by 

thought about one’s personal past and hopes for one’s future 

gives way to life as a sequence of disconnected present experiences. As the individual’s ability to see himself critically and selfconsciously declines, the more complex psychological dimensions of well-being are eclipsed by the simpler psychophysical 

ones. 

Responsible caregivers for persons with dementia aim at a 

series of overlapping human goods: the comfort of the person; 

the pleasures of activity as long as activity is still possible; a sense 

of connection to others; a stable, safe, reliable, and nurturing environment; and the good of being itself, of being alive rather than 

dead, even in a diminished condition. This does not mean, as we 

have often noted, that keeping the person alive is the caregiver’s 

highest purpose. The probability or even certainty of an earlier 

death must often be accepted when life-extension involves painful or misery-inducing treatments. But for responsible caregivers, 

death itself will never become the means to relieving suffering, 

and life itself will never be treated as the burden to be relieved. 
P RINCIPLE AND P RUDENCE IN HARD CASES │ 173 

We cannot, after all, serve the well-being of a person’s life by 

seeking his death. 

Promoting well-being for persons with dementia often presents special challenges in the clinical context—distinct from caring for independent persons at the height of their powers or 

physically incapacitated persons who are still cognitively able. 

Consider, for example, what it is like for a cognitively healthy 

person to have blood drawn by venipuncture: He knows beforehand why this procedure is necessary—such as the medical value 

of diagnostic tests or the civic value of donating blood. His understanding of the experience gives him a reason to endure or 

reinterpret what is, in the immediate sense, unpleasant and painful—indeed, a violation of his body. This understanding does not 

make the needle hurt any less, but it makes the pain humanly 

comprehensible. 

A person with advanced dementia, however, no longer has 

the capacity for such understanding. Drawing blood may serve 

the person’s present interests—as critically assessed and understood by others—but a person with dementia cannot understand 

how or why. He experiences the needle simply as a threat, a violation, a source of pain. His immediate experience is uncorrected 

by reflective understanding. Skillful caregivers might sometimes 

find ways to have drawing blood “make sense” within the patient’s impaired cognitive reality. But in many cases, the violation 

will be experienced as senseless, because it will be experienced 

uncritically—as an act committed against rather than for the patient’s well-being. 

The point, once generalized, becomes crucial for ethical 

analysis and prudent judgment: Certain treatments that are not 

excessively burdensome for comprehending patients may be excessively burdensome for patients with dementia. Dementia itself 

does not make the person less worthy of treatment, but the complications created by the person’s lack of understanding often change the 

judgment of how best to serve his well-being. 

Finally, although concern for bodily well-being is central to 

caring for the person with dementia, caregivers take care not only 

of the body but also of the whole person who is and lives as and 

through his body. They are caretakers of his personal past as well 

as his bodily present, of the life he has lived in addition to the life 
174 │ TAKING CARE

he is now living. In this light, caregivers always need to consider 

the significance of past values and past character—such as the 

ideas of meaningful life that the person once held, or the ideals 

of family flourishing and personal honor that he lived by when 

he was still an ideal-forming and ideal-seeking being. The person 

whose needs are eventually largely bodily also possesses enduring 

moral interests, even if he is no longer aware of them. 

This insight cuts in multiple directions: It means that even 

those who might be oblivious to our care still have an interest in 

our care, because they still possess the dignity of being human; 

and it means that even those who no longer know the ideals they 

once held still have an interest in those ideals—an interest entrusted to us. This does not mean that we must always allow the 

past self to speak decisively for the present self, or that we 

should judge the worth of the present life entirely by the standards of a person’s past existence. But it does mean that caregivers, in caring for the unique person the patient now is, must 

honor the unique person the patient once was—for example, by 

being less aggressive in pursuing optional treatments for a person 

who all his life treasured self-reliance above all else, or, conversely, by being more aggressive in pursuing optional treatments 

for a person who always held that any vestige of life was incalculably precious.* What such honor means and demands in any 

concrete case is often a puzzling question, especially when persons with dementia get sick in other ways, and especially when 

caregivers must begin thinking about not only the patient’s continuing life but the patient’s approaching death. 

B. The Nature of Treatment and the Trajectory of Illness 

To think clearly about how certain treatments or non-treatments 

might affect the well-being of persons with dementia in the clinical setting, we need a clear way of thinking about the complex 

character of “treatment” itself—with all its benefits, uncertainties, tradeoffs, and imperfections. The professional caregiver always begins with a diagnosis of the current situation: What is 

 

* There are, of course, limits: Honoring the unique person the patient once was 

does not mean that we would be obliged to give hemlock to Dr. Kevorkian. 
P RINCIPLE AND P RUDENCE IN HARD CASES │ 175 

wrong with the patient, what are the options, and what will 

probably or likely happen if we leave the patient untreated? The 

diagnostician inquires about the present (“Is the patient suffering 

now?”) and imagines the future (“How will the patient’s condition 

change if we do or do not intervene?”).* Perhaps without treatment the patient would die imminently and certainly; perhaps he 

would face persistent or worsening discomfort and suffering; 

perhaps he would be at greater risk of more severe complications 

or earlier death in the near future; or perhaps these greater risks 

will amount to nothing. 

Once we have diagnosed the current problem or problems, 

we then ask what kinds of treatment are possible: Can we cure the 

given illness entirely—as we may reasonably hope to do with a 

urinary tract infection using antibiotics? Can we manage the illness 

with ongoing treatments—as with kidney failure using dialysis? 

Can we slow down the progression of the illness—as with radiation 

treatments for some forms of cancer? Can we ameliorate the symptoms without altering the course of the illness itself? Does the 

treatment involve a one-time intervention, a battery of interventions for a fixed period of time, or a permanent regimen of interventions until death? Does it involve a long and difficult recovery? Will it create temporary or permanent disabilities? What are 

the likelihood of success and the likelihood of complications? 

Answers to all these questions, whether given explicitly or tacitly, 

are germane to any decision to treat or not. 

 

* It is hard to imagine a situation in which it is ethically sound for caregivers to 

tolerate physical suffering in the present when such suffering can be ameliorated 

with treatment or palliation—unless the medical intervention itself will cause 

suffering or impairments that are worse than the underlying ailment. What to do 

in cases where the burden of treatment in the short-term is very great but the 

long-term benefits are significant is a complicated question. Indeed, caregivers 

must make very complex judgments about the relationship between present 

goods and future harms and between present harms and future goods. For competent patients directing their own care, one could imagine avoiding treatments or 

forms of palliation that compromise self-awareness, and one could imagine patients who might prefer to suffer physically, to the degree such suffering is tolerable, in order not to affect their psychic state. But in dementia cases, such selfawareness is already compromised, partially or completely, and thus the obligation to ease physical suffering seems preeminent in most imaginable circumstances. 
176 │ TAKING CARE

Different treatments obviously entail different upsides, 

downsides, and levels of uncertainty. The best treatments involve 

no pain or disruption with a high probability of cure; the worst 

involve physically invasive procedures with little chance of improvement. Some treatments involve virtually no burdens—such 

as taking pills with minimal side effects. Others involve increasing levels of burden—from minor surgery with a speedy recovery, to radiation therapy that leaves the patient weak and nauseated, to interventions that result in permanent disabilities or deformities. For persons who are elderly, the burdens of treatment 

are often more severe. And for persons with age-related dementia, there are the additional problems of confusion and disruption—because the patient cannot understand what is happening 

and why, and because altering the patient’s familiar routines is 

often especially terrifying. 

Ultimately, caregivers must compare the burdens, consequences, and potential complications of the treatment itself against 

the burdens, consequences, and potential complications of nontreatment; and they must compare the likely realities of life after 

treatment against the likely realities of life without treatment.

* This is 

where the true moral complexity of the clinical situation presents 

itself, especially because persons with dementia who get sick are 

often already sick in other ways. In many cases, the life of the 

patient is already filled with many physical burdens. The goal of 

treatment is always to reduce those burdens, never to add to 

them. But the dilemma, in many cases, is whether adding days, 

months, or years to such a burden-filled life—even if the lifeextending treatment effectively eliminates a discrete threat—is 

morally sound. Good care often means accepting that the life 

now present is a life with burdens that cannot be eliminated by 

our actions. The dilemma comes when we must decide whether to extend a 

burden-filled life in cases in which the life-extending treatment itself is not a 

burden or not a very great burden. 

 

* Though the account here focuses on the professional caregivers, especially the 

doctors, these people must also be able to explain these matters to family members or others who, as proxies for the patient, have the ultimate responsibility for 

deciding what should be done. 
P RINCIPLE AND P RUDENCE IN HARD CASES │ 177 

Especially perplexing are circumstances in which two illnesses are present simultaneously: an illness that would probably 

kill the patient relatively quickly and with minimal suffering (like 

bacterial sepsis), and an illness already under way and beyond 

cure, that will likely lead to severe physical distress on the way to 

certain death (like pancreatic cancer with metastases). In such a 

case, would the intervention against the curable disease bring suffering greater than the disease itself, by dramatically increasing 

the chance of additional suffering and a more difficult death? On 

the one hand, caregivers seek to benefit the life the patient still 

has by treating current problems; on the other hand, caregivers 

seek to avoid the prolongation of suffering and the most painful 

kinds of death. Do we benefit the life a person still has by extending life with severe burdens? Do we benefit the life a person 

still has by intervening in ways that cause new disabilities in the 

process of eliminating present dangers to life itself? Is the moral 

calculus different for elderly persons who suffer from age-related 

dementia compared with mentally incapacitated persons at earlier 

phases of life or physically incapacitated persons whose cognitive 

powers are still intact? These kinds of questions—and more 

broadly, the relationship between treatment and well-being for 

persons with dementia—can be considered only in concrete 

cases, with due regard for both the moral principles that should 

guide all caregiving decisions and the irreducible particularity of 

every clinical situation. 

C. Three Complex Cases 

To probe these issues, we will consider three types of cases in 

this section: The first explores the relevance of a patient’s subjective well-being and outward behavior toward others; the second 

considers the burden of certain treatments and the significance 

of a patient’s resistance to treatment; and the third considers the 

meaning of concurrent deadly illnesses, where a treatable supervening disease would likely bring a quicker and more peaceful 

death. 
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1. The Relevance of Subjective Well-Being. 

Medically, both these patients have a similar heart condition requiring a similar treatment. Without a pacemaker, the danger of a 

cardiac arrest in the near future increases dramatically, and with it 

the likelihood of sooner and sudden death, or of a non-deadly 

but debilitating episode that leaves the patient in a considerably 

worse condition. But the two persons are also very different in 

the condition of their lives: one appears content and one does 

not, one is agreeable and one is difficult, one brings mostly happiness to others and the other brings mostly misery. Do these 

existential differences matter in deciding how or whether to 

treat? 

For Patient #1, the moral presumption in favor of installing 

the pacemaker seems fairly strong, assuming the procedure itself 

is relatively non-burdensome and does not somehow disrupt the 

Patient #1: A seventy-five-year-old man with middle-stage Alzheimer’s 

disease who usually does not recognize his family or his caregivers but 

enjoys being visited. He likes to “read” the same book over and over 

again—jumping randomly and uncomprehendingly from page to page. 

He wanders around the assisted living center, waving and smiling to the 

other residents, and he generally seems happy. He has a Stokes-Adams 

episode (temporary loss of consciousness due to transient interruption of 

electrical impulses in the heart, and the consequent failure of the heart to 

pump blood to the brain), and doctors say he needs a pacemaker immediately to prevent a possibly fatal episode in the future. 

Patient #2: A seventy-five-year-old man with middle-stage Alzheimer’s 

disease who usually does not recognize his family or his caregivers but 

lashes out equally at his visitors. He is often angry and occasionally violent, and sometimes walks into other patient’s rooms to scream at them 

for stealing his wallet. He has had competent examinations searching for 

a treatable cause for his erratic behavior and none was found. He cries 

and yells, and is already on mild sedatives to control his behavior. On a 

few occasions, caregivers have had to use physical restraints. He has a 

Stokes-Adams episode, and doctors say he needs a pacemaker immediately to prevent a possibly fatal episode in the future. 
P RINCIPLE AND P RUDENCE IN HARD CASES │ 179 

person’s seemingly pleasant existence by permanently altering his 

everyday routine. With a pacemaker, this seems like a modest 

concern. But what about more demanding medical interventions 

that would disrupt the patient’s happy existence? 

Because the clinical possibilities are so wide-ranging, it is 

hard to generalize. If the medical condition in need of treatment 

is not painful in itself or life-threatening now, and if the treatment would likely disrupt the patient’s current happiness, there 

are sound moral reasons to forgo treatment, even if doing so increases the likelihood of an earlier death. In such a case, the caregivers choose one kind of life (present happiness, with the possibility of a shorter lifespan) instead of another kind of life (present 

ordeal, with the possibility of a longer lifespan). With the pacemaker, the medical intervention seems morally desirable because 

the burden of treatment and the likely disruption are likely to be 

fairly minimal. With more burdensome treatments—such as 

chemotherapy or coronary-bypass surgery—the moral calculus 

clearly shifts, making treatment or non-treatment equally defensible options depending on the circumstances, or making nontreatment the morally preferable option in cases (such as the examples just given) where the burdens of treatment are severe. A 

dementia patient cannot comprehend the value or nobility of enduring painful interventions in the present for the sake of future 

goods, and this lack of understanding may in some cases provide 

grounds for forgoing certain treatments, either because of the 

burdensomeness of imposing an unwanted treatment on the patient or because of the danger of turning the patient into a mere 

object. 

For Patient #2, the situation is more complex—especially if 

the individual strongly resists all efforts to undergo the procedure. We will consider the significance of a patient’s resistance to 

treatment in our next case; for now, let us focus on the meaning 

of the patient’s current discontent and bad behavior, and 

whether it deserves to be given any weight in making a treatment 

decision. The first question is whether the patient’s apparent discontent and bad behavior are being caused by the caregiving environment itself or by poorly treated psychiatric problems. It may 

be that the behavior itself can be modified by better care. But let 

us assume, in this case, that Patient #2’s situation cannot be 
180 │ TAKING CARE

dramatically improved short of constant heavy sedation. What 

then? 

If the question for caregivers is how to benefit the life the 

patient still has, is installing the pacemaker a benefit to him? Certainly it is a medical benefit: it improves his bodily condition and 

decreases the likelihood of repeat episodes. But is it a benefit to 

the patient as a person? In this case, the person seems to experience life with dementia as a special kind of misery, and he certainly causes significant misery for others. Why intervene to help 

prolong such a life, if doing so means prolonging this misery? Let 

us assume that he was, before dementia, a thoughtful and decorous gentleman. Do we benefit the life the patient still has by 

prolonging his degradation and bad behavior? Can one choose 

not to treat out of fidelity to the person we once knew—that is, 

out of the loving desire not to prolong the deformation of his 

past character that merciless nature has now imposed upon him? 

Or would we be abandoning the patient if we treat his unhappiness and bad behavior as a reason to invite an earlier death, as 

disqualifying conditions for our ongoing care? 

If the caregiver elected not to install a pacemaker, he would 

not be seizing an occasion to produce certain death (in the way, for 

example, that stopping insulin injections for a person with type-1 

diabetes would). But the caregiver would deliberately leave the 

person in a condition where an earlier death of a certain sort is 

probably more likely. We cannot know for certain how the patient will change as dementia progresses; we cannot know for 

certain whether his apparent misery will get worse, or whether 

his mood might improve by changing his environment, or 

whether dementia will advance to the stage where his bad behavior will be eclipsed by further cognitive and physical decline. And 

we must ask whether our failure to treat now will only make his 

cardiac condition worse in the days ahead—with more cardiac 

episodes, more emergency situations, more falls from dizziness 

and perhaps permanent injuries as a result. We must ask whether 

non-treatment is also a kind of endangerment. 

This case puts the dilemma of caregiving sharply before us: 

Prolonging life seems like prolonging personal misery; forgoing treatment 

seems like courting death. The strongest moral grounds for forgoing 

treatment seem to be the fear that the ordeal of even this minor 
P RINCIPLE AND P RUDENCE IN HARD CASES │ 181 

procedure would make his catastrophic reactions and uncontrollable behavior even worse upon his return. One could argue that 

the complications caused by his dementia make treatment an excessive burden for this patient. But let us ask, by comparison, 

whether we would install a pacemaker in a similarly miserable, 

delusional, and disruptive psychiatric patient in his thirties, who 

could only be controlled with the use of heavy sedatives. If the 

answer is yes for the young psychiatric patient, then the reason 

not to treat Patient #2 would seem to turn on the age-related 

dementia itself: that is, on the grounds that he has lived a full life, 

that his disease is undoubtedly irreversible and progressive, that 

the process of becoming demented is an affront to his past dignity, 

or that he is ready to die precisely because he is both old and 

demented. 

Perhaps the difference, in this case, is that the young psychiatric patient is physically strong enough to endure the ordeal of 

forced treatment, while the elderly patient is not. Or perhaps one 

would treat the younger psychiatric patient because there is a 

greater chance that medical progress will provide a future cure 

for his mental condition. These factors might make the two cases 

clinically and morally distinct. 

But in the end, those who decide not to treat Patient #2 

would need to think carefully about what they were really doing 

and why they were moved so to act. They would need to consider the unpredictable—and perhaps horrible—consequences of 

not treating: for example, a non-deadly heart episode that causes 

the patient to fall down and break his hip. Of course, they would 

also need to consider the human consequences of electing treatment—such as extending a life that appears miserable, a life that 

ends in a long dehumanizing decline. They might believe that 

they are under no moral obligation to act so as to make a person’s fate worse. In this case, caregivers might feel a powerful 

moral intuition to forgo treatment, but it is hard to articulate the 

grounds for doing so without tacitly or explicitly declaring that 

the impairments of Alzheimer’s disease are, by themselves, a legitimate moral reason to aim at death as the means of ending the 

individual’s unhappiness. 

As with Patient #1, one could surely envision many medical 

interventions for Patient #2 that would not be morally obliga-
182 │ TAKING CARE

tory, including those that might be necessary to prevent an imminent and certain death. Certainly, one could decline a battery 

of treatments that required long-term physical restraints—

treatments that necessarily treat the patient as someone trapped 

in a kind of medical servitude. But in this particular case, the 

moral analysis seems to lead in favor of installing the pacemaker 

in both patients—with sober recognition that doing so for Patient #2 may extend a life that exists with little or no present 

contentment. Often, with regret and anguish, we must opt for 

affirming what seems to be miserable or undignified life over 

death, and that choice should be at least the default position, in 

both law and prudence. In some situations, we are forced to recognize what Vergil called “the tears of things.”2 Recognizing this, 

we must aim for the choice that does not define individuals in 

distress as better off dead. And in this case, the patient’s very 

misdeeds and apparent discontent are proof that there is life left 

in him, and that death is probably not imminent. 

2. Burdensome Treatment and Patient Resistance.

A sixty-seven year old woman entering middle-stage of Alzheimer’s disease 

is being cared for at home. She is still mobile but in no way self-sufficient; 

she is still talkative but lacks any reliable memory of who her family members are; and she has no real grasp of her own clinical condition. The caregiving is hard on the family, but the family is strong and lovingly devoted to 

her, and the daily routine is at least moderately stable. Bathing has begun to 

be a struggle, and she needs increasingly to be watched to ensure that she 

does not get herself into trouble around the house. But in general, day-to-day 

life is as good as one might expect given the circumstances. The most distressing episodes occur when her daily routine is altered. For example, she 

physically resists being put into the car, and so the family doctor has agreed 

to check on her periodically at home. But then a series of tests determine 

that her kidneys are failing badly and discussion ensues about whether to 

give her renal dialysis. With treatment, her kidney disease can likely be 

managed but not cured; without treatment, the patient will likely survive for 

a few weeks and then die a fairly swift and relatively peaceful death. Although the physician was hesitant to recommend dialysis, the family members asked that it be undertaken. They go a few times to the renal dialysis 

center twenty miles away, but the struggle is making both the patient and 

the caregivers increasingly miserable. Should the treatment be continued? 
P RINCIPLE AND P RUDENCE IN HARD CASES │ 183 

This case permits us to examine the relevance, for deciding about 

best care, of the burdens of receiving treatment—both the physical burdens of the given treatment itself and the burdensome effect that administering treatment might have on the patient’s 

lived experience. It also permits us to look at the significance of 

patient resistance as a factor in deciding about treatments that 

might otherwise be medically and ethically indicated. 

Before coming to the question about continuing hemodialysis, 

we first review the decision to initiate it: Was this decision compatible with ethical caregiving, an example of best care? The answer is not obvious. 

On the one hand, it is likely that dialysis would preserve the 

patient’s life for an indefinite period of time. In the absence of 

treatment, her kidney disease is probably deadly, sooner rather 

than later. In purely physical terms, hemodialysis is less taxing 

than, say, major surgery or chemotherapy. It would almost certainly be medically recommended for a younger patient with renal failure, or for a non-frail person of similar age who was not 

suffering from Alzheimer’s disease. 

On the other hand, dialysis is not happy treatment. Studies 

show that the majority of patients do not think that their life is 

good on dialysis (even when they are glad to be alive because of 

it). Sometimes too much fluid is taken off, sometimes too little. 

The shunts clot and get infected. Although it saves lives shortterm in patients with end-stage renal disease, it often causes 

death from heart disease in a few years. Virtually no patient 

wants to stay on dialysis, and some patients, tired of waiting for a 

kidney transplant that often never comes, elect to discontinue 

their treatment rather than continue living under its burdens. 

Unlike mentally competent patients facing the prospect of 

hemodialysis, a patient with moderate dementia cannot knowingly elect to seek its benefits despite its burdens, or to forgo 

those benefits because of those burdens. In one sense, our dementia patient’s burden of treatment might in fact be less than 

usual: owing to her lack of self-awareness, she might not suffer 

the psychic distress that often accompanies living through the 

ordeal of never-ending treatment, contemplating death hovering 

over her all the time. In another sense, however, because she 

cannot choose or understand the treatment or its purpose, she 
184 │ TAKING CARE

cannot willingly understand or accept its physical discomfort or 

the alteration of her relatively comfortable and familiar daily routine at home. 

In the present case, the physician apparently regarded 

hemodialysis as optional for the patient, extraordinary rather than 

obligatory, thinking the benefits did not outweigh the burdens in 

her case. Ethically, we think that this is a defensible judgment. 

But her family members, eager not to lose her and perhaps hoping also to keep her alive for a special family occasion already 

planned for the following year, opted for treatment, and the doctor readily obliged. Ethically, we think that this too is a defensible 

judgment. Both the doctor and the family caregivers were seeking to benefit the life the patient still had; neither was pronouncing judgment on its worthiness. 

But after a trial of treatment, people have cause to reconsider. The treatment, especially the human ordeal it entails and 

the physical coercion it seems to require, turns out to be much 

more burdensome than anticipated. Should it now simply be 

stopped? Or are there things to be considered and tried first before reaching such a conclusion? 

One proper avenue is to see whether there might be ways to 

reduce the burdens and to dissolve the patient’s resistance to 

treatment—ways to make the necessity of treatment “make 

sense” to the patient or at least seem less burdensome, or ways to 

make the patient a more willing (or less resistant) participant in 

her own care. If the resistance is caused, for example, by the way 

the patient is being treated by her caregivers at the dialysis center, 

a change in their behavior or approach might ease the current 

ordeal. If the patient might now also be suffering from depression, antidepressant medication might improve the patient’s behavior. Because traveling by car to and from the treatment is especially distressing, peritoneal dialysis—less effective than hemodialysis but administrable in the home—might well be considered. Alternatively, one might think of moving the patient into an 

assisted living facility where dialysis is available onsite, and where 

perhaps a new, stable life routine can be established—though 

one should not underestimate the stress such a move might well 

produce. 
P RINCIPLE AND P RUDENCE IN HARD CASES │ 185 

It is possible that some combination of new medications and 

new caregiving strategies will still make hemodialysis possible 

without imposing an excessive burden and without radically altering existing caregiving arrangements. It is possible that the patient will tolerate peritoneal dialysis at home. But if these new 

strategies do not help the situation, it may be that ceasing treatment altogether and restoring (if possible) her pre-treatment routine is what best care requires, even knowing that the consequence will be an earlier death. 

The decision to cease treatment can never be made lightly, 

especially in a case where death is hardly imminent so long as 

treatment continues. But in cases such as this where patient resistance makes the very activity of getting treated a great burden—

not simply physically in terms of pain, but humanly in terms of 

the patient’s overall well-being—the decision to cease treatment 

and accept an earlier death seems morally permissible once other 

alternatives fail, and it may even be the best choice among a 

range of imperfect options. Forgoing treatment might allow the 

patient to live out her last days with the happiness that her relatively stable and peaceful home life still permits—with minimum 

disruption or struggle, and without being treated as a mere object 

of care requiring permanent coercion. 

As in all cases, the obligation of caregivers here is to ensure 

that they do not choose the path that benefits their own lives and 

well-being at the cost of the patient’s life and well-being. Every 

avenue of easing the burden of treatment should be pursued before coming to the conclusion that treatment in this case, for this 

person, is an excessive burden that should not be continued. But 

in the end, there is a highly principled and prudent case for forgoing treatment: One is seeking to serve the patient’s well-being 

here and now. One is not using death as the means to end suffering; one is not seeking death deliberately by one’s own actions or 

omissions; one is simply seeking the best life possible under the 

circumstances, even if the best life now possible is a shorter life. 

We would probably think differently about the problem of 

burden and resistance if the patient were not an elderly person 

with dementia but a resistant child or a middle-aged psychiatric 

patient who believed being taken to dialysis was a form of despotic control. Caregivers will and probably should give patient 
186 │ TAKING CARE

resistance different weight in these alternative cases, and there 

seem to be at least some moral grounds for choosing differently 

based on the person’s age and underlying condition. In the case 

of the child, one imagines that he will one day appreciate the parental coercion that kept him alive. In the case of the psychiatric 

patient, his life trajectory is longer than the incapacitated person 

with age-related dementia, and the possibility of benefiting the 

patient’s life in novel ways remains a greater possibility. But for 

the elderly dementia patient, it is almost certain that the person’s 

dementia—and thus her inability to understand the need for dialysis—will never get better and only get worse. And there is little hope for improvement from medical progress. 

The potentially greater obligation to treat the psychiatric patient is not because the younger person’s life has greater dignity 

than the older person’s life; it is because the different clinical 

conditions of the two individuals alter what it means to benefit 

the life each patient currently has. In both cases, the bar for forgoing treatment should be set high—but even higher in the case 

of the psychiatric patient, because the possibility of a significant 

future improvement is also being forgone if and when hemodialysis is stopped. 

The ethical dilemma in all these cases—where the patient resists for reasons that do not make sense or for reasons that do 

not necessarily serve the patient’s best interests—is deciding 

what weight to give such resistance. There are some who believe 

that resistance on the part of dementia patients is autonomy’s 

subconscious way of expressing itself—that is to say, it is the incapacitated person’s way of expressing a will to die or the willingness to surrender to the inevitable. But more likely, this resistance is the activity of an individual living purely and spontaneously in the present—unable to fathom past wishes, unable to 

fathom the future consequences of non-treatment, and fearing in 

some instinctual way what it will mean to lose the experienced 

goods of the present, such as staying at home where things are 

familiar and not scary. 

In such cases, the incapacitated person’s well-being is entrusted to surrogates acting on her behalf. The ethical dilemma is 

that intervening medically on behalf of the patient seems to require acting against the patient, and in some cases the present 
P RINCIPLE AND P RUDENCE IN HARD CASES │ 187 

burden of a given intervention—an intervention that is burdensome in part because of how it is seen by individuals who cannot 

see things clearly—outweighs the future benefit. In such cases—

and the specific case here presented seems to be one of them—

caregivers can morally choose a path that ends in an earlier death, 

because such a path is the best life possible for the patient under 

the circumstances. But they should always seek the fullest range 

of life-sustaining alternatives that do not wreak undue havoc on 

the goods the patient still has in the present. 

3. The Trajectory of Death. 

This case forces us to confront a very difficult question: Do we 

benefit the life a person still has by extending a life marked by 

terrible physical suffering and with worse physical suffering still 

to come? More broadly, how do we balance the obligation to 

heal the sick with the obligation to ease the pain of those who 

suffer? Thinking clearly about this case requires assessing the 

progression of her cancer, the nature of her suffering (both hereand-now and looming ahead), and the significance of the person’s dementia, which forecloses the patient’s freedom to direct 

her own care without eliminating her experience of physical misery. It also confronts us concretely with the moral difference between the burdens we produce by our acts of medical intervention and the (possibly even greater) burdens we (indirectly) make 

A woman with middle-stage Alzheimer’s disease—disordered speech 

and some disorientation, sometimes emotionally overwrought, sometimes 

withdrawn, and only occasionally able to recognize her close family members—is also suffering from a rare form of cancer, already widely spread. 

There is no hope of cure, invasive treatments aimed at slowing down the 

disease are no longer an option, and the patient is already experiencing 

pain from the bony metastases. The cancer will almost certainly lead to a 

painful decline and excruciating death over the next three to six months, 

where pain can be controlled only by constant and heavy sedation, and 

even then not completely short of inducing coma. Concurrently, the patient contracts a treatable bacterial pneumonia, and a decision needs to 

be made about whether to treat it.
188 │ TAKING CARE

possible by extending an exposed life to the looming miseries of 

a disease-in-process. 

The patient in this case is clearly heading toward death but 

probably not yet irretrievably dying. As the disease progresses 

and death looms closer, the case for not treating the pneumonia 

surely seems more compelling. At some point, we might say that 

the patient has become a “whole ensemble of diseases,” that 

death is too close to fight any longer, that treating a particular 

treatable disease no longer benefits the patient in her totality as a 

person. With possibly six months left to live, one must be hesitant about seizing an occasion for death by leaving the pneumonia untreated. But as six months becomes six weeks or six days, 

the case for surrender strengthens, especially as the debility of 

the cancer gets worse.* 

Obviously, at every stage of care, physicians should do what 

is medically possible to control, lessen, or ameliorate the patient’s 

physical pain. In most cases, pain relief (or partial relief) is possible, if one pursues it diligently. But in some cases, short of permanent sedation that itself brings increased risks of earlier mortality, adequate pain relief is not possible. And so it is worth taking up the case precisely as written: with death from cancer 

looming three to six months ahead, with the person suffering 

from advancing dementia, with pain present now and likely to get 

significantly worse day by day, and with a decision in the hands 

of caregivers about whether to treat a concurrent bacterial 

pneumonia. 

As in the case described earlier, using antibiotics to treat her 

pneumonia would most likely be effective—though it is important to recognize, first, that any readily treatable pneumonia has a 

substantial chance to resolve itself spontaneously, and second, 

that any pneumonia likely to be lethal is potentially dangerous 

 

* Of course, one of the great dilemmas faced by caregivers is the inability to know 

with certainty how much longer a given patient will live, or whether death is finally arriving, no matter what we do to fend it off. Such uncertainty could lead us 

in either direction regarding treatment. But it should induce a certain modesty 

before the awesome choices forced upon us in this dance with death, even as we 

unavoidably must make them despite our imperfect knowledge. 
P RINCIPLE AND P RUDENCE IN HARD CASES │ 189 

even if treated.* And in the immediate, physical sense, the treatment itself is non-burdensome: it does not involve moving or 

violating the patient, or causing her new kinds of discomfort or 

distress. As caregivers, however, we must think about the future 

as well as the present, about future burdens as well as present 

needs. In treating her pneumonia—even if we assume it is the 

right thing to do—we make it more likely that she will endure 

more future pain than she would were the pneumonia to take her 

life. We cannot avoid that stark reality. 

Accordingly, compelled to choose whether to give antibiotics, we must wonder whether doing so is really doing good—

especially for a patient with advancing dementia whose existence 

is defined almost entirely by physical experience. The dementia 

patient lacks the self-conscious loves and longings that might 

give a competent person a reason to fight on, a reason to endure 

terrible physical suffering, a reason to live because there is something knowable to live for. The demented person may reach a 

point—if she is not already there—where the pain is so awful 

and her cognitive capacities are so limited that life with cancer is 

sheer and incomprehensible misery, with nothing positive in her 

subjective experience to compensate or sustain her. 

So why might we decide to treat? As caregivers, we do not 

want to refuse treatment as a way of getting the patient to die. 

(Indeed, were that our plan of action, we might have difficulty 

explaining why we should not simply end her life now, pneumonia or no pneumonia, and spare her the ordeal of the next three 

to six months.†) Thus, even assuming the best and most merciful 

of motives, we should still draw back from acting in a way intended to bring about her death. 

But there is more to be said. In such difficult circumstances 

it is always right to be suspicious of our own motives. The human psyche is extraordinarily complex, and what we tell ourselves is mercy can sometimes be something quite different. 

 

* Antibiotic treatment usually increases the odds of curing pneumonia by some 

middling percentage, roughly 30 to 60 percent; neither treatment nor nontreatment have certain yes or no effects. 

† But on this point, see our earlier discussion in Chapter 3 of the partial moral 

relevance of the distinction between deliberately killing and allowing to die.
190 │ TAKING CARE

Made uneasy by this woman’s dementia, seeing in her a sign of 

our own vulnerability and mortality, suffering at our own inability to relieve her suffering as much as we would like, we may prefer that she simply go away as soon as possible. 

If we treat her pneumonia, this does not mean that we want 

her to suffer or that we cruelly impose suffering upon her. If we 

have been her caregivers up to this point, we might well hope—

or pray—that she die soon and suffer no more. Nevertheless, 

part of honoring our commitment to the equal dignity and worth 

of every human being, irrespective of condition or circumstance, 

is to accept the demands of solidarity even in suffering. 

Our most fundamental commitment is not to minimize suffering but to maximize care—never to abandon care for another 

human being. In many, perhaps most, instances these two obligations amount to the same thing. But there may be occasions—

and this case may be such an occasion—in which maximizing 

care, never abandoning care, means that there is at least some 

suffering we cannot relieve. 

The reasons to treat depend, finally, on a judgment that this 

woman is not yet irretrievably dying—though, to be sure, she is 

terminally ill. Six months is not a short time; it allows for her life 

to be touched by loved ones (though her capacity for interaction 

is already severely limited by her dementia), or it gives time to 

enjoy whatever simple pleasures (if any) still mean something to 

her. At some point—hard to calculate—this ceases to be the 

case. The range of life’s possibilities narrows so greatly that forgoing treatment is not minimizing care but lovingly accepting the 

natural conclusion of a life. Even when we argue for treatment, 

therefore, we should recognize the limited scope of the argument 

in this instance. Perhaps we are not yet at the time for stopping 

such treatments, but we are surely approaching it, and it would 

be foolhardy to make assured judgments about it. 

How might we make the argument against treating her 

pneumonia—even now when she may have as much as six 

months to live? We might judge that this woman has come to a 

point where we can find few or no ways to benefit any longer the 

life she has. We might conclude that we should let nature take its 

course and acquiesce in her dying, being present with her and 

comforting her as best we are able. We might conclude that ex-
P RINCIPLE AND P RUDENCE IN HARD CASES │ 191 

tending her life, even if medically possible, is not humanly wise. 

This would not be an attempt to get her to die, justified by an 

appeal to merciful motives; we would not think ourselves to have 

failed as caregivers should she survive the pneumonia without 

treatment. On the contrary, it would be the best way we could 

find—in what are admittedly very difficult circumstances—to 

remain committed to her life and well-being. And even as we 

leave her pneumonia untreated, we should do everything we still 

can to care for the person in her final trial; forgoing this particular treatment does not mean forgoing all treatments, since some 

interventions may still make her existing life better even as death 

looms closer. 

A further reason not to treat lies in what we might think of 

as a humanistic understanding of medicine. The point of medicine is not to treat or cure a disease, such as pneumonia. The 

point of medicine is to treat human beings—persons who are ill 

and suffering. What we want to treat here is not so much pneumonia as it is this woman—and, hence, we deal with the pneumonia as a way of caring for her, not simply in order to overcome a 

disease. Yet, she has now become, as we put it earlier, an “ensemble of diseases.” If antibiotics are not useless for treating the 

pneumonia, they may now be useless for treating her. If we can 

find no ways to benefit the life she has, then we should step back 

from attempts to treat. Here again, however, we should not be 

too confident of our judgments. We should be wary of how 

mixed our motives may be, and we should be reluctant to decide 

that we have reached the point where treatment is no longer a 

benefit to the living person still with us. Nevertheless, our patient 

must always remain the woman, not simply the diseases that afflict her. 

This is surely a hard and puzzling case with no easy answers. 

It appears to be a case in which the distinction between “active 

killing” and “letting die” might take on real significance: which is 

to say, we appear to possess the moral discretion, as caregivers, 

to let pneumonia take its course, but (as always) never the moral 

freedom to kill the patient directly. 

In trying to decide what to do in such a hard case, the particularity of the patient as a person might also take on greater 

significance. If the patient’s children lived far away and wanted to 
192 │ TAKING CARE

be with her before she dies, that may be a reason to treat. If the 

patient was or is a religious person with a redemptive 

understanding of suffering, this fact might move loving 

caregivers to treat. Conversely, if the patient had an especially 

low tolerance for pain, or believed that generosity toward the 

next generation means accepting death after a long life whenever 

death arrives, then permitting pneumonia to be this “old 

woman’s friend” might be the way to do our best as her 

caregivers. Ideally, loving family members and caring doctors 

would come together to make a prudential judgment in such a 

case, a judgment that would depend not only on the particularity 

of the clinical situation but also the particularity of the patient as 

a person with a past, a present, and an (albeit short) future life. 

In the end, we believe that the moral argument could go either 

way in this case, depending in part on many personal and medical 

particulars, those just mentioned among them. Even those who 

lean toward treating the pneumonia should recognize that the 

wisdom of treatment diminishes as the cancer and its accompanying pain worsen and as death looms closer. This is a case in 

which, notwithstanding which side gets the better of the moral 

argument, it seems wise to leave family members and doctors 

some leeway to decide, lovingly and prudently, when to surrender 

to nature—but not the right to actively kill, even with supposedly 

well-meaning motives. As we struggle with our awesome responsibilities in heart-wrenching circumstances, we should remember 

that even our perfect desire to see another’s suffering end does 

not make us the absolute master over that suffering or the authoritative arbiter of that person’s life. Sometimes, the best we 

can do is stand with those who suffer and make sure they know 

and feel that they are not alone. 
P RINCIPLE AND P RUDENCE IN HARD CASES │ 193 

IV. THE SIGNIFICANCE OF LIVING WILLS 

In caring for the person the patient now is, caregivers should 

never ignore the wishes and values of the person the patient once 

was. This requires respecting more than their written instruments; it obliges caregivers to consider the reasons that animated 

the person who wrote them. It would be important, in this case, 

to know whatever we could about why the patient chose to write 

an advance directive of this kind, with blanket instructions to 

forgo all invasive treatments: perhaps it was the desire never to 

burden his daughter; or the belief that life with dementia would 

not be worth living; or the desire not to exhaust all his resources 

A man entering middle-stage Alzheimer’s disease lives in an assistedliving facility in a wealthy suburb. He is still ambulatory and talkative, 

though his stories do not make much sense. He is generally cheerful and 

well behaved—more so, it seems, as his memory has declined: He enjoys 

watching television, looking out the window, and attending weekly concerts performed by local students. His daughter lives close by and visits 

regularly—at least three or four times each week. He does not usually 

recognize her, but a little conversation often leads to stories about taking 

her to camp last summer (really 35 years ago). His nurses discover that 

he has blood in his stool, and x-rays reveal that he has an operable tumor in his sigmoid colon which, if not removed, could lead to a complete 

obstruction of his bowels. While making plans for the recommended surgery, the doctors discover in his file that he has written a living will stating very clearly that he wants no invasive treatments of any kind once his 

dementia has progressed to the point where he is no longer self-sufficient 

and can no longer recognize his family members. He does not seem overly 

resistant to the treatment, and he has never resisted basic treatments since 

entering the assisted-living facility. His daughter remembers discussing 

treatment preferences with her father a few years ago. At the time, the 

possibility of not recognizing her seemed so remote that she agreed to 

honor his preferences, mostly just to make him happy, and she helped 

him prepare his advance instruction directive. But now she feels that she 

should proceed with the surgery.
194 │ TAKING CARE

on end-of-life care; or the fear that he would lose control of his 

behavior and act in inappropriate ways; or the worry that extending life indefinitely would be physically painful; or the belief that 

he should be allowed to die peacefully rather than being hooked 

up to machines. But absent such knowledge of his reasons—and 

it is often not easy to come by, even for close family members—

caregivers are obliged to take seriously the instructions as such. 

Seriously, but not slavishly. For past wishes, as we have explored, are not always morally decisive in such cases. They are a 

crucial point of consideration, but not the only or even the most 

important one. No individual can foresee every future circumstance in his or her life; an individual’s best interests and true 

needs can change over time; and medical situations are so complex that we can only judge wisely what to do case-by-case and in 

the moment. Only by making an all-encompassing determination 

that his life with (more than minimal) dementia would never be 

worth sustaining might the competent individual rule out in advance all future treatments should he become demented. But 

such a blanket assertion about the worth of a future self denies 

the intrinsic dignity of embodied life even when one’s cognition 

is impaired; it discriminates against an imaginary future self long 

before the true well-being of that future self is really imaginable. 

And although there are genuine reasons to tremble at the prospect of life with advanced dementia—and to wonder whether 

even non-burdensome treatments simply impose prolonged degradation—responsible caregivers should not acquiesce in denying 

the worth of the person entrusted to their care, just as competent 

individuals should resist making a priori negative judgments 

about the disabled person they might become. 

The primary moral obligation of caregivers is to serve the 

well-being of the patient now here, and to ask not only what the 

patient would have wanted but what we owe the person who lies 

before us. This means paying attention to an advance instruction 

directive if one exists, but not following its orders regardless of all 

other circumstances. If the patient seems miserable because of his 

dementia, there might be greater cause to respect his living will. 

If he physically resists treatment, there might be cause to forgo 

further interventions and accept an earlier death. Yet, neither of 

these conditions is present in the case as we have it. When the 
P RINCIPLE AND P RUDENCE IN HARD CASES │ 195 

individual in question wrote his living will, perhaps he could not 

imagine the desire of his daughter to care for him, or the fact that 

he would be so cheerful with dementia, or that he would be willing to endure surgery of this kind. All of these factors, so difficult to anticipate beforehand, should make us hesitate simply to 

apply his instructions in a mechanical and thoughtless manner, as 

if we were not ourselves reflective moral agents responsible to do 

the best we can for the man now before us. In this case, there 

seem to be clear and compelling reasons for caregivers to override the terms of the advance instruction directive and proceed 

with treatment, understood by both the daughter and the doctors 

as the best way possible to benefit the life the patient still has.*

The same would be true in an opposite kind of case: where 

the advance directive (written in the past) demands every possible treatment to keep the person alive, but where all possible interventions (in the present) would be excessively burdensome or 

would prolong a painful process of dying. In such cases, caregivers would also have significant moral grounds to override an advance directive and forgo certain interventions. 

Our case might be further complicated by certain economic 

considerations. Suppose that the daughter knows that her father 

wrote the living will primarily as a means of preventing the 

spending down of assets he wanted to leave to his children and 

grandchildren. Yet the daughter, although mindful of his intentions, would much rather spend her father’s money (her own 

prospective inheritance), and even her own money, to ensure 

that he receive the best medical care. Under these circumstances, 

she would be justified in exercising discretion, overriding his 

wishes where treatment is clearly beneficial and not exorbitantly 

expensive, although perhaps avoiding costly treatments in circumstances in which treatment is ethically optional. 

In raising these complications, we hardly mean to suggest 

that the presence of a living will is irrelevant in deciding the best 

course of care. In many cases, there will be no reason to resist its 

 

* Those who disagree with this judgment because they oppose overriding the 

living will should ask themselves whether they would also object to surgical pinning of a fractured hip, should the patient fall and break it, leaving him in pain 

and unlikely to walk again. 
196 │ TAKING CARE

instructions, either because they accord with what lovingly prudent caregivers would recommend anyway or because they recommend a course of treatment (or non-treatment) that is among 

the justifiable options. In other cases, caregivers will disagree 

about what to do, especially when the demands of best care are 

ambiguous, with compelling reasons either to treat or not to 

treat. In cases such as the one presented here—involving a not 

excessively burdensome treatment, a cheerful and physically 

strong patient, and the fact that forgoing treatment will lead to a 

painful and imminent death—prudent judgment points toward 

overriding the living will, even when caregivers disagree. But in 

many cases, where the best interests of the patient are not so 

clear and where caregivers disagree, there is solid moral ground 

to defer to the living will. 

Consider, for example, the two cases discussed earlier: the 

patient with kidney trouble who physically resists being taken to 

treatment and the patient with deadly cancer who contracts 

pneumonia. In those cases, caregivers face wrenching choices 

about what best care requires, and they might rightly turn to an 

advance instruction directive, if it exists, for guidance in deciding 

what to do. In such complicated circumstances, where loving 

caregivers are not certain what best care requires, an advance instruction directive might provide the moral authority or needed 

permission to fight on or let go, knowing how hard either path 

will surely be. But, as we have emphasized throughout, the authority of living wills should always be limited by the obligation 

to serve the patient now living among us, by always seeking the 

best care possible under the circumstances. 
P RINCIPLE AND P RUDENCE IN HARD CASES │ 197 

V. THE WELL-BEING OF CAREGIVERS 

In this case, the demands of caring well for a person with dementia have taken an enormous toll on the caregiver’s family; and the 

decision to transfer the patient to a nursing home may have altered the trajectory of her final days—though exactly how we can 

never know for sure. How do we judge the behavior of the caregiving daughter, the husband and sons, and the attending physician? 

The true caregiver always aims to do his or her best for the 

person being cared for, especially when the dependence of the 

needy person is absolute. But the moral obligation of best care 

always exists alongside many other roles and obligations: for example, one’s role as a nurturer and provider for young children; 

as an employee at a company; as a volunteer in the community; 

as a spouse for better and for worse; as a person with aspirations 

of one’s own. Caregivers are not caregivers only. Of course, they 

A physician is contacted by one of his patients whose mother has advanced Alzheimer’s disease. The mother is in her late eighties, incontinent of urine, and unable to recognize any family member. She is being 

cared for at home by her daughter without outside help and has no major 

medical problems other than her advanced dementia. When the physician 

makes a house call, he finds the mother on a bed in the dining room. She 

is unable to communicate or answer questions. On physical examination, 

she looks her age, but has no ulcers or other skin breakdown, indicating 

excellent care. Her daughter is in tears and tells the doctor that her husband and three teenage children all wish to have her mother transferred 

to a long-term care facility. She cannot stand the thought, but she acknowledges the cost her life as a caregiver has entailed for her marriage. 

Her husband seems increasingly distant and they have not had marital 

relations for several months. The physician speaks with her for about an 

hour and urges her to move her mother. He reassures her that her mother 

would not recognize the change, and that she (the caregiving daughter) is 

in danger of losing her family because of emotional neglect. Three weeks 

later, the mother is moved to a nursing facility with an Alzheimer’s unit. 

Three months later, she dies. 
198 │ TAKING CARE

should always strive to make decisions aimed at the well-being of 

the person with dementia—asking what is best for the patient, 

not what is best for the caregiver. But caregivers should also see 

the obligations of caregiving in light of life as a whole, with its 

many attachments, many burdens, and many purposes. This is 

why caregivers rightly ask: What do I as a caregiver owe him or 

her as patient and person? For this is a question that encompasses 

both the unchanging worth of the life being cared for and the 

genuine limitations of being human caregivers. Those with unlimited resources might owe their loved ones more in terms of 

medical care; those nations with greater wealth might owe their 

citizens more public assistance and support. Prudence requires 

honestly making such assessments, both as individuals and as a 

community. 

As a simple rule of thumb, caregivers should do the best 

they can do; they are never compelled to do what they cannot do, 

but they are obligated to see how much they can do without deforming or destroying their entire lives. But in practice, this rule 

of thumb rarely leads to any fixed rules, because every person 

faces different demands and has different capacities. And inevitably, we cannot do our best simultaneously in every area of our 

life: that is to say, we cannot do our best for everyone all the 

time; we cannot be there for everyone all the time; we cannot 

devote resources to everyone equally all the time. 

To be a caregiver is to confront not only the limitations of 

the person with dementia who relies upon us entirely, but our 

own limitations as human beings who are more than just caregivers or who are caregivers in multiple ways for multiple people. In 

doing so, we need to avoid two kinds of dangers: the danger of 

not working hard enough for the person with dementia who 

needs us, by saying too early or too easily that the burdens of 

care are too great; and the danger of betraying everything and 

everyone else in one’s life, by saying too often and too persistently that the burdens of caregiving can be shouldered alone, or 

that caregiving for the person with dementia always trumps every 

other obligation or good. 

Life, of course, comes in many phases, with obligations and 

opportunities that shift over time: As a mother of a newborn 

child, an adult daughter may be more limited in the time she can 
P RINCIPLE AND P RUDENCE IN HARD CASES │ 199 

devote to caring for a parent with dementia; as an adult son 

struggling to provide his teenage children with a college education, he may be more limited in the resources he can give to his 

parent with dementia. Alternatively, the successful corporate 

lawyer may need to put his or her career on hold when a parent 

becomes dependent; the phase of life in which the pleasures and 

obligations of career are dominant may need to give way, for a 

time, to a period of life during which caregiving becomes dominant. In all situations, the presence of myriad obligations requires 

prudential discernment about which obligations place the greatest claim on our time, our resources, and our very lives at 

particular moments. This challenge presents itself to caregivers 

day after day, not only when persons with dementia get sick in 

other ways, and not only when life-and-death decisions need to 

be made about medical care. 

In this case, the daughter is heroically trying to care for her 

mother—a mother who could not survive, living at home, without her care. Her husband and children also need her as a mother 

and a wife; and though they could endure without her, they increasingly feel abandoned, and increasingly see the grandmother/mother-in-law as too great a burden to keep at home. 

All individuals, in this case, need to ask themselves probing questions: The caregiving daughter should ask whether she is paying 

attention to the genuine needs of her children and husband: Is 

she showing interest in their lives? Is she available to them as a 

source of guidance or strength in hard times at work or at 

school? Is she paying attention to the education and moral development of her children? The husband and children need to 

ask whether they are being selfish: Are their own problems and 

needs so great that they cannot endure them a bit longer, and 

comfort their mother/wife by supporting her in her role as caregiver? Can these needs wait until later—when the life of the 

grandmother/mother-in-law has ended, and this phase of the 

caregiving daughter’s life has ended? Are they meeting the obligations of fidelity toward the wife/mother they miss so much? 

These burdens and tensions are often not only emotional 

but economic: Should the funds set aside for the children’s college tuition be used to pay for an in-home health care aid or for a 

private assisted living facility? What if the choice is between an 
200 │ TAKING CARE

inferior nursing home covered by Medicaid and superior nursing 

care paid for out of the tuition fund? Or what if the choice is between working longer hours to pay for optimal care and working 

fewer hours to provide care oneself? 

Without question, caregivers should never seek the death of 

the person being cared for in the name of other familial goods. 

But they will almost certainly make caregiving decisions in light 

of other family realities—such as whether to keep the person at 

home or put her in a nursing home, whether to keep working 

and hire outside help or leave work to care for a dependent parent themselves, whether to scale back children’s extracurricular 

activities to spend more time at the nursing home or to carry on 

as usual. In making such decisions, both families and societies 

face the most fundamental kind of ethical dilemma: a dependent 

person with immeasurable worth who depends on finite people 

with many other obligations. On the one hand, we wish to ensure that care for persons with dementia is the best possible; as 

persons of incalculable value, they deserve no less. On the other 

hand, we need to confront the fact that best care for the person 

with dementia may mean less-than-ideal care for everyone else 

who needs us, and it may mean doing less than our best in those 

activities of life where we aspire to excellence. Because the person with dementia often cannot survive without our care and often teeters between life and death, we are moved to put everything else aside to meet the demands of caregiving. We live, with 

them, in a perpetual state of near-crisis or real crisis. At the same 

time, because the person with dementia seems to have such a 

diminished life, we might be tempted “to put them aside,” so to 

speak, so that everything else can flourish. The moral challenge is 

finding the best possible balance among these competing obligations, while operating within the fundamental moral boundaries 

articulated above: never seeking someone’s death in the name of 

other goods, always doing the best one can for the person entrusted to one’s care. 

Finally, the physician in this case understandably wants to 

help the family as a whole, and he may have offered sound advice in recommending that the patient be moved to a nursing 

care facility. From a strictly therapeutic perspective, it may be 

that the patient has been at home too long, without ready access 
P RINCIPLE AND P RUDENCE IN HARD CASES │ 201 

to regular professional care. But it also seems far too simple to 

say, as the physician does, that the patient “would not recognize 

the change.” As a matter of cognitive understanding, this is 

surely true: the patient no longer recognizes her daughter or the 

home she lives in. But although it may not be obvious or evident 

to observers, persons with dementia often do “recognize” when 

the kind of care they are receiving changes—not cognitively, but 

experientially or physiologically. Moving the patient to a care facility may have been the right thing to do, and perhaps the caregiving daughter should have done so even earlier. But we also 

cannot ignore the fact that doing so sometimes means a degradation, not an improvement, in the quality of care; and it sometimes leads to a shortening of the person’s life—not by aiming at 

her death or leaving life-threatening illnesses deliberately untreated, but simply by weakening her basic “urge to live” by leaving her in the care of strangers or in a foreign environment. This 

fear is what makes putting a loved one in a nursing home so difficult for many families, especially those without the economic 

resources to pick whatever care facility they want. The gravest 

decision faced by many families is often not whether to treat or 

not, but whether caring for a family member at home is the morally sound thing to do—for the patient, the caregiver, and the 

caregiver’s entire family. 

* * * * * 

The cases presented in this chapter illustrate the difficulties 

conscientious caregivers face in trying to provide the best care 

possible for people who can no longer care for themselves. Our 

discussions have explored what ethical caregiving might require 

in such cases, suggesting ways of thinking and acting sufficient to 

the task of benefiting patients with dementia in the clinical context, often in circumstances that admit no perfect options or 

happy outcomes. Although the goal is clear—to serve the true 

welfare of the patient here and now—loving prudence must often struggle to find the right means of serving it. Caregivers 

should always seek to benefit the life the patient still has, even 

when they elect to stand aside because further interventions 
202 │ TAKING CARE

would only make matters worse and even when they recognize 

that surrender is the path of loving care. 

To deal with the ethical complexities found under even the 

best of circumstances, our discussions throughout have assumed 

the presence of competent and caring physicians and loving and 

engaged family members, all of them trying to do their best. 

Needless to say, these ideal conditions are not always present, 

perhaps not even usually present. We are mindful of the temptations to treat patients with dementia as second-class human beings or “non-persons”; we are aware that doctors are often impatient or inattentive, that nurses are overworked, and that family 

members are easily tempted to put their own interests first, 

sometimes even rationalizing betrayal of the patient as the course 

of mercy. For these reasons we worry lest our counsel of “allowing to die” in a few of these difficult cases may serve to encourage less than loving caregivers to betray and abandon their 

charges or encourage society at large to move down the slippery 

slope toward the moral pit of euthanasia. Nevertheless, it remains 

our obligation to develop the outlines of what ethical caregiving 

requires here and now, in the hope that such knowledge can itself help protect against the dangers that lie ahead and enable us 

all to treat the vulnerable among us according to the better angels 

of our nature. 

 

ENDNOTES 

1 Robert Burt, Taking Care of Strangers: The Rule of Law in Doctor-Patient Relations. 

New York: Free Press, 1979, p. 11.

2 This passage appears in Vergil’s Aeneid, I.462: “Sunt lacrimae rerum et mentem mortalia tangunt.” (“These are the tears of things, our mortality cuts to the heart.”)
5 

Conclusions and Recommendations 

This report has been, in a sense, three reports in one, unified by 

a concern for, and a line of argument about, ethical caregiving in 

our emerging mass geriatric society. 

Chapter 1 provided an overview of our aging society. We looked 

at the demographic trends, the effects of modern medicine on 

aging and dying, and the novel opportunities and social challenges now before us as the baby boomers age and retire. We 

also looked at individual aging and the lifecycle, and explored the 

many factors that shape how different people age and die. We 

paid particular attention to age-related dementia, especially Alzheimer’s disease, and to the special burdens that this increasingly 

common form of debility imposes on both patients and caregivers. In the end, we concluded that we may face, in the coming 

years, a genuine caregiving crisis, with many more dependent 

persons in need of long-term care and fewer available people to 

care for them. 

Chapter 2 looked more specifically at advance directives, a 

much heralded remedy for dealing with difficult decisions in 

long-term care. These legal instruments enable individuals to 

leave written instructions about future treatment preferences 

should they one day become incapacitated (“living wills”) or to 

appoint a trusted proxy to make such treatment decisions on 

their behalf (“durable power of attorney for health care”). We 

examined the principles behind these two types of advance directives and the evidence of how they are working in practice. In the 

end, we concluded that appointing a proxy decisionmaker is almost always sensible, while trying to dictate the precise terms of 

one’s future care is often misguided or ineffective. Living will or 

no living will, there is no substitute for human caregivers on the 

spot, who will regularly be called on to make treatment decisions 

for those who cannot make them for themselves and whose nu-
204 │ TAKING CARE

merous and evolving everyday duties of caregiving simply cannot 

be specified in advance. 

Chapters 3 and 4 then considered how ethical caregivers should 

decide and act, in giving care to persons with dementia. These 

chapters examined several ethical dimensions of caregiving: the 

aims of care and the moral boundaries and guidelines that should 

govern caregivers (Chapter 3); and the work of principle and 

prudence in reaching sound caregiving decisions in a range of 

ethically difficult clinical cases (Chapter 4). The goal of caregiving, we concluded, should always be to serve the well-being of the person now here, always trying to benefit the life an individual still has, even 

when that life has been diminished by disease, debility, or 

dementia. 

Taken as a whole, our primary aim in issuing this report is to 

help spark a national conversation about aging and caregiving, 

and to enrich the nation’s thinking about what it means, in practice, to age well and care well. Our purpose is not to provide a 

detailed policy program or extensive policy recommendations, 

but to spur and guide those who must undertake this grave and 

pressing responsibility. We aim to ensure that future policymaking will always take into account the ethical and humanistic aspects of aging and caregiving, not merely the economic and institutional ones. And we aim to give aid to caregivers, familial and 

professional, struggling to do their best in hard, often tragic circumstances. The challenges of aging are challenges for all of 

us—as citizens, family members, and individuals looking ahead 

to our own inevitable decline. We offer this report to help us 

serve and preserve our humanity in our new world of longevity. 

In this concluding chapter, we summarize some of our key 

findings and present some modest recommendations. We offer 

guidance to caregivers and their advisers regarding the care of 

their patients and loved ones; we suggest ideas for legislators, 

judges, professional policymakers, and ethics committees regarding advance directives and the need for other possible policy initiatives; and we present one major suggestion for mobilizing sustained research and serious national attention to meeting the 

needs and responsibilities of caregiving in our aging society. 
C ONCLUSIONS AND RECOMMENDATIONS │205

I. LIFE, HEALTH, AND DEATH 

IN OUR AGING SOCIETY 

A. Our Unprecedented Situation 

Barring major unforeseen developments, we are entering an unprecedented phase of our history—indeed, of human history—

featuring (1) a new age structure of society, (2) longer and more 

vigorous old age for millions, (3) new modes of dwindling and 

dying, and (4) a likely shortage of available caregivers.

1. The New Demography. 

In the decades ahead, the age structure of the American population will almost certainly undergo a tremendous and unprecedented shift, continuing and accelerating a trend toward an 

older—and, increasingly, also an “old-older”—population, with 

the oldest segments of the population growing fastest, both in 

absolute numbers and percentages of the whole. One projection 

gives the big picture: Between 2000 and 2050, the population of 

Americans age 45 to 64 is expected to grow modestly from 61 to 

85 million while the population 65 and over is expected to grow 

from 34 to 79 million, with the cohort 85 and above more than

quadrupling, from 4 million to 18 million. These dramatic shifts 

are the result of improvements in public health and preventive 

medicine and of modern medicine’s success against many causes 

of premature death; of the relatively high birth rates of the babyboom years of 1946 to 1964; and of the relatively low birth rates 

that have persisted in the years since then. This society-wide increase in personal longevity is a remarkable human achievement, 

but it also creates an unprecedented social situation, with novel 

challenges and uncertainties. 

2. Healthy Old Age. 

In many ways and for increasing numbers of people, this is a 

wonderful time to grow old. More people are living longer and 

staying healthier. Premature death is in decline, and so are certain 

kinds of chronic disability for the population over 65. More peo-
206 │ TAKING CARE

ple are able to enjoy a true period of retirement, with the resources and leisure to pursue their avocations. Unfortunately, 

many people still struggle economically, physically, and personally in old age, and many people still have their lives tragically cut 

short. But compared to even the relatively recent past, when 

growing old was rare, when healthy old age was rarer, and when 

poverty in old age was the rule, the current situation is an astonishing achievement. We are already, as it were, staying younger 

longer, and we can look forward in the years ahead to still more 

advances and improvements in healthy and vigorous aging. 

3. Debility and Dementia, Death and Dying. 

Living longer has also changed the patterns of illness during old 

age, especially the illnesses that lead toward death. Although 

most of us seem likely to enjoy a greater period of healthy old 

age, many of us are also destined to experience a longer period of 

chronic illness and dependency before we finally die. Already, 

only a minority of us dies suddenly, without prior chronic illness. 

Already, the most common trajectory toward death is the path of 

“dwindling,” of progressive debility, enfeeblement, and dementia, 

often lasting up to a decade. Special challenges arise for patients 

suffering from the various age-related dementias, especially Alzheimer’s disease, a condition whose prevalence is now high (an 

estimated 4.5 million sufferers in the United States) and increasing. This progressive, degenerative, and fatal disease, lasting typically between five and ten years, begins with weakening memory 

and everyday forgetfulness, moves to progressive loss of basic 

life skills, speech, and self-awareness, and concludes with severe 

bodily breakdown, in total dependence on others for all activities 

of daily life. An unprecedented number of people will need longterm care, not just for months but for years. Through much of 

that time, they will not be able to participate in caregiving decisions, and caregivers will often face critical decisions about 

choosing or forgoing life-sustaining or death-postponing treatments, in addition to the daily efforts of providing ongoing care. 
C ONCLUSIONS AND RECOMMENDATIONS │207

4. The Availability of Caregivers. 

While the need for long-term caregivers and proxy decisionmakers appears to be increasing, the supply of readily available caregivers appears to be shrinking. Because families are smaller, there 

are fewer adult children to care for their aged parents. Many 

more old people are childless and alone. Increased family instability and greater geographic mobility mean that, in many cases, 

fewer caregivers are willing or available to care. Once the typical 

caregiver was a woman who did not work outside the home; today the typical caregiver, still a woman, is employed outside the 

home, and often obliged in addition to care for her own young 

children. At the same time, there are already shortages of professional caregivers—nurses and geriatricians—and caregiving jobs 

such as nurse’s aides often lack the levels of compensation and 

benefits that might attract sufficient numbers of workers. The 

cost of care is rising, the ratio of workers to retired persons is 

falling, and many other social goods compete for scarce resources. Looking ahead, we may face a situation with more people needing extended long-term care, with more prolonged periods of debility en route to death, but with fewer qualified people 

willing and able to act as caregivers. This is an issue demanding 

urgent social attention. 

B. Our Uncertain Future 

Although we know much about the aging of American society, 

there is much we do not know, especially about possible future 

developments, medical and social. We have good reason, therefore, to be both alert and cautious. Economic growth or economic setbacks may increase or decrease the resources available 

to families and state governments for providing care in old age. 

New instruments such as long-term care insurance may expand 

the caregiving options available to families. Changed work patterns or levels of compensation may alter the availability of both 

voluntary and professional caregivers. Policy changes or new 

programs might reduce the costs of care or lead to better and 

more suitable kinds of care. Free societies are creative societies, 

and in the years ahead we should expect to see several now-
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unexpected ways of addressing the challenges of caring for the 

disabled elderly. 

In addition, major biomedical advances—say in the prevention, delay, or amelioration of Alzheimer’s disease—could modify these current projections, by altering average life expectancies, 

changing the prevailing patterns of health and illness, and transforming the most common trajectories toward death. (Conversely, major breakthroughs in the treatment of cancer or heart 

disease could increase the proportion of people whose death 

comes only after a decade of dwindling.) New technologies to 

facilitate basic care and improved practice standards within 

medicine and nursing could also make caregiving more effective 

and easier. 

Yet even in the best-case scenarios—with healthy aging until 

the end, family caregivers ready and willing to care, and public 

policy that supports caregivers and care-receivers—we still face 

definite challenges ahead. These include, for example, the costs 

of financing long-term care or expensive medications for the elderly, or decreases in economic productivity should more workers 

in their prime devote more energy to the “non-productive” activities of caring. And it is by no means assured that we will get 

the best case scenario rather than something much less ideal: increased incidence and prolonged periods of dementia and enfeeblement, fewer family caregivers ready and willing to care, and a 

public policy that regards growing expenditures on the elderly as 

unwarranted or unaffordable. Under such circumstances, it may 

prove more rather than less difficult to do right by our parents 

and spouses in their long, last act of life. Yes, the future is unknowable and uncertain, but we know the stakes and they are 

surely high. 

C. Ethical Commitments and Wise Public Policy 

As we chart our uncertain course into an equally uncertain future, not everything is or should be up for grabs. Certain moral 

aspirations and moral boundaries—always to care, never to 

abandon or betray those entrusted to our care—should guide us 

in the days ahead. But these moral aspirations always take shape 

in real-life circumstances, where resources are limited, people are 
C ONCLUSIONS AND RECOMMENDATIONS │209

tested, and competing human goods call out for our attention 

and devotion. We cannot do without awareness of the likely perils. We cannot do without ethical guidance. 

Looking ahead, American society needs to avoid two grave 

dangers: We need to prevent the worst kinds of betrayal and inhumanity toward the dependent elderly—such as relying on institutions that “warehouse” elderly persons, promoting assisted suicide as an answer to disability, and embracing euthanasia as a solution to the perceived social and economic burden of dependent 

persons. At the same time, as we aim at the best care possible for 

the elderly, we must avert the danger of intergenerational conflict 

over scarce resources, meeting our obligations also to our children and grandchildren, sustaining other social goods, and avoiding a major new drag on the economy that would (among other 

things) weaken the economic capacity of working families to 

provide care for their loved ones. Put positively, we need to encourage families and local communities to become responsible

caregivers and to sustain one another in giving care, while recognizing the role of the state in providing a safety net of decent care 

for those who lack adequate economic resources or a network of 

family support. 

Many Americans continue to believe that people should be 

self-reliant and care for themselves and their families without 

state intervention or support. But the looming crisis in long-term 

care may challenge these beliefs, unless government provides additional assistance to support caregiving families. We are rapidly 

moving into a situation in which—due to the genetic lottery and 

the vagaries of disease, and through no fault of their own—

nearly half of society’s families will face a demand for long-term 

care that they simply will not be able to meet without expensive 

professional help, while the other half will not. In a society of 

ethical caregiving, the government must accept a duty to find, 

encourage, and institute measures that would help share the economic part of this burden more equally. 
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II. CONCLUSIONS AND RECOMMENDATIONS 

We come, then, to a summary of our conclusions and recommendations, some concerning individual caregiving, some concerning procedures and policies regarding advance directives and 

advance care planning, and a final recommendation to promote 

further national attention to the subject of aging, dementia, and 

caregiving. 

A. Individual Caregiving 

Human beings who are dwindling, enfeebled, or disabled in body 

or in mind remain equal members of the human community. As 

such, we are obligated to treat them with respect and to seek 

their well-being, here and now. We should always seek to benefit 

the life incapacitated persons still have, and never treat even the 

most diminished individuals as unworthy of our company and 

care. Their well-being in the present is of course related to the 

ideals and wishes of their earlier life, but those past wishes and 

ideals do not alone determine what we owe them today. We 

should seek their present good, avoid doing them present and future harm, and make every effort—in the light of their own special circumstances and ours—to find the wisest and best form of 

care possible. 

Caregiving always takes shape in the particular—involving 

distinctive individual patients and caregivers, in unique and often 

complicated circumstances—and there can be no single principle 

or invariable formula for discerning the best care possible in each 

and every case. In decisions large and small, loving prudence is 

required to discern the most beneficial course of action. But, as 

we argued in Chapter 3, there are certain moral guidelines and 

boundaries that should guide all caregivers, as they strive to do 

their best for the person now relying upon them. We highlight 

three crucial teachings. 
C ONCLUSIONS AND RECOMMENDATIONS │211

1. Euthanasia and assisted suicide are antithetical to ethical 

caregiving for people with disability. These practices 

should always be opposed. 

If we are to care well for the needs and interests of persons incapable of caring for themselves, we must erect and defend certain 

moral boundaries that prevent us from violating the people entrusted to our care: No euthanasia, no assisted suicide. These 

practices should be opposed for many reasons, and not only because of our moral (and legal) opposition to seeking the death 

and taking the life of innocent human beings. These taboos are 

also indispensable for giving good care: one cannot think wholeheartedly about how best to care for the life the patient now has 

if ending his or her life becomes, for us, always an eligible treatment option. This holds true not only in the vexing end-of-life 

cases discussed in Chapter 4. It is also indispensable for fulfilling 

our everyday obligations and performing our everyday ministrations in their care. It is indispensable to serving faithfully and 

loyally, deserving of the trust that has been reposed in us, 

whether as family members or as doctors, nurses, and hospice 

workers. A decent society will not seriously consider abandoning 

and betraying its most vulnerable and disabled members. A prudent society will not weaken those necessary restraints that prevent even the most devoted caregivers from yielding—out of 

weakness or frustration—to the temptation to abandon or betray 

those in need of their care. 

Try as we may to be devoted caregivers, we are not saints, 

and—under the pressure of trying circumstances—even our best 

motives may lead us to betray or abandon altogether those who 

in their vulnerability depend on our care. Hence, we all need a 

shared moral world in which certain actions that undermine the 

solidarity of the human community are firmly beyond the pale. 

Or, to put the matter positively, it is only as we deny ourselves 

the option of “solving” intransigent social problems by ridding 

ourselves of those who manifest the problem, that we can train 

ourselves to cultivate with greater clarity and wisdom the capacities we have and the virtues we need for caregiving. A society 

that sets its face against abandoning those whose lives are in decline has a better chance of being a society that thinks creatively 
212 │ TAKING CARE

about the trajectory of life and the bonds between the generations, of remaining a society in which to live long is also to live 

well together. 

2. The goal of ethical caregiving in the clinical setting is not 

to extend the length or postpone the end of the patient’s life 

as long as is medically possible, but always to benefit the 

life the patient still has. 

In caring for those who cannot care for themselves, our primary 

goal is to do everything we reasonably can to benefit their lives—

from meeting basic needs and sustaining life, to easing pain and 

curing ailments, to offering comfort in difficult times and, in the 

end, keeping company in the face of looming death. Medical interventions that sustain life are, of course, often a benefit to 

those whose lives they sustain. But extending life and delaying 

death are not the only or primary goals that should guide caregivers, and there are times in which pursuing those goals would 

require imposing new and unjustified burdens on the patient. 

Caring well for the patient does not require always choosing interventions that would prolong his life or delay his dying, and 

sometimes best care requires forgoing treatments that may sustain life at the cost of imposing undue misery or offering palliative care that accepts an increased risk of an earlier death. Some 

interventions, even if life-sustaining, do not benefit the life the 

patient now has. Some interventions, aimed at benefiting the patient’s present life, may not be life-extending. 

Moreover, in caring for the life the patient now has, we care 

also for the manner and humanity of his dying. Feeding tubes 

and respirators are not always obligatory. Neither is hospitalization or the intensive care unit. And if these measures are used for 

a time, there are circumstances when it is morally permissible—

and even, perhaps, morally required—to desist. Dying as well as 

possible—or, more modestly, in as little misery as possible—is 

also one of our concerns and cares. Even as we must never seek 

or aim at the patient’s death, so we are also under a positive obligation not to impose treatments that would unduly burden the 

patient, make his dying more difficult, or otherwise deprive him 

of a more peaceful end of life or of final hours in the company 
C ONCLUSIONS AND RECOMMENDATIONS │213

of those who love him. Dying, like living, is a human matter, not 

merely a medical or technological one. 

3. The clearest ethical grounds for forgoing life-sustaining 

treatments are an obligation to avoid inflicting treatments 

that are unduly burdensome to the patient being treated 

and an obligation to avoid treatments that are not at all (or 

not any longer) efficacious in attaining their desired result. 

As caregivers, with necessarily limited powers to fix what is broken, we must distinguish between the burdens of disease (which 

we cannot always control) and the burdens of treatment (for 

which we are fully responsible). There are some burdens and 

some forms of suffering that we cannot make disappear, despite 

our best efforts. Because our powers of cure are limited, sometimes all we can do is stand with the patient in her days of trial, 

always seeking to minimize those burdens we cannot fully eradicate. But where we do intervene with medical treatments or dislocations required to obtain them, we are under an obligation not to 

add unduly to the patient’s existing miseries and troubles. And, 

of course, we are also under an obligation not to intervene uselessly. Those interventions that cause undue burden or fail to 

benefit the life the patient still has can be, and often clearly 

should be, forgone. Judging when this is the case is always the 

task of prudent caregivers, making conscientious decisions in 

particular circumstances for particular patients. 

B. Procedures and Policies: Ethics Committees, 

Professional Societies, Judges, and Legislators

The ability to care well for people who can no longer care for 

themselves depends on many factors—economic, medical, social, 

cultural, institutional, civic, legal, and ethical—many of which are 

also influenced directly or indirectly by policy decisions. Most of 

these matters lie beyond the scope of this report, which is devoted mainly to the ideas and practices of ethical caregiving. In 

the realm of public policy, we have confined our attention to examining critically the legal instrumentality of written or formal 

advance directives. We here summarize our key findings and of-
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fer some forward-looking recommendations to ethics committees, professional societies, judges, and legislators involved in developing or interpreting policies and procedures relevant to advance directives. In the end, we recommend also the search for 

alternatives that focus more directly on creating an economic, 

civic, and institutional environment in which best care for the 

patient now here is the moral and medical aim and in which the 

chances of providing such care can be significantly increased. 

1. Advance instruction directives (or living wills), though 

valuable to some degree and in some circumstances, are a 

limited and flawed instrument for addressing most of the 

decisions caregivers must make for those entrusted to their 

care. 

Living wills, although much talked about and recommended by 

many people, are not a panacea. They address, at most, but a 

small fraction of the decisions caregivers must make for incapacitated persons. Even if everyone executed a living will, and even if 

the instructions were followed as written, the big questions of 

long-term care and ethical decision-making would not disappear 

or become readily manageable: there are too many situations in 

which following orders is not the best way to give care, and giving care always requires more in terms of resources, character, 

support, and judgment than any legal instrument can possibly 

provide. We firmly believe that the American people—both potential patients and potential caregivers—should not be misled or 

encouraged to think otherwise. Moreover, in addition to the 

practical difficulties with living wills that we exposed in Chapter 

2, the duties of actual—as opposed to imagined—human caregiving always arise within concrete situations experienced in the 

present, not conjured situations imagined in the past. Precisely 

because the obligation of caregivers here and now is always to 

the patient before them here and now, instructions written long 

in advance can rarely be simply authoritative or dispositive. 

To be sure, a few of the difficulties with living wills could be 

ameliorated by improved and more prudent drafting: for example, every writer of a living will should be asked to consider writing into such a document—after, of course, discussing it with the 
C ONCLUSIONS AND RECOMMENDATIONS │215

relevant parties—a provision acknowledging that the wishes expressed in the document are based on incomplete information 

and explicitly authorizing family members and clinicians to override the specific instructions if they judged it would serve the patient’s present welfare to do so. Also, rather than write blanket 

exclusions of specific kinds of potential treatment interventions, 

advance instructions might explicitly allow for temporary trials of 

certain treatments, permitting the patient’s caregivers to see if the 

treatments might actually be beneficial without creating a situation in which the treatment cannot be easily stopped. But even 

such improvements do not address the fundamental limitations 

and shortcomings of advance instruction directives, which can 

never replace prudent judgment by devoted caregivers about 

what a patient now needs. Ethics committees, drafters of professional guidelines, policymakers, and legislators at both the state 

and federal levels should address these failings and search for 

more practical and responsible alternatives. 

2. Advance proxy directives are much more valuable and 

should be encouraged. 

Instead of attempting to specify what should be done, advance 

proxy directives specify who should make crucial decisions on our 

behalf. These instruments ratify our fitting desire to be placed in 

the hands of loving caregivers whom we trust with our wellbeing when we can no longer act to promote it ourselves. Naming of proxy decisionmakers provides clear identification of who 

shoulders responsibility to act for the patient and makes it clear 

to physicians and others with whom they must deal. Such knowledge makes it much more likely that there will be the desirable 

discussions between family and professional caregivers at all important junctures of treatment and care. 

3. Beyond legal instruments drafted and devised by 

individuals, we need to develop policies and procedures 

that encourage ongoing discussion and coordination 

among all relevant parties—including family members, 

health care professionals, social service providers, and, 

where possible, the patients themselves. 
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More important than the execution of such legal instruments is a 

process of advance care planning and full discussion, covering 

not only “end-of-life” decisionmaking but the whole range of 

caregiving realities—including questions about assisted-living, 

home care, medical preferences, finances, scheduling of available 

caregivers and respite care, and possible eventual transfer to a 

skilled nursing facility. Such planning in the early stages of illness 

can often include the patient, who can make known his greatest 

hopes and fears and who can gain much needed reassurance that 

he will have loyal care and company throughout his illness. Such 

planning should not be regarded as a rigid set of prescriptions for 

future care, since flexibility is always necessary. But wise planning 

in advance can sometimes improve the circumstances in which 

caregivers eventually make evolving and often unpredictable decisions, by thinking ahead about the range of caregiving options 

that may one day become relevant or necessary. 

4. Ethics committees called upon to give advice to doctors 

and families, and judges obliged to adjudicate difficult and 

often tension-filled cases involving decisions about lifesustaining treatment, should do everything possible to ensure that surrogate decision-making focuses as much as 

possible on the best care for the incapacitated patient in his 

or her current condition. 

Hospital-based ethics committees are frequently called on for 

advice regarding ethically difficult treatment decisions, often 

about the use of life-sustaining treatment. Professional societies 

often formulate practice guidelines for physicians treating incapacitated patients. Guideline drafters and ethics committees 

should always focus on the present welfare of patients. They 

should be concerned less with trying to figure out what the incapacitated patient would want done, were he now to be consulted 

in his own case, and concerned more with discerning what the 

incapacitated patient now needs in order to serve best the ongoing, if dwindling, life he now has. Judges who must hear cases in 

which there is an unresolved dispute about best treatment would 

also do well to make sure that the course of action recommended 

does not overvalue “precedent autonomy” or past wishes and 
C ONCLUSIONS AND RECOMMENDATIONS │217

pays proper regard to what best care owes this human being in 

his current situation. 

Moving from individual cases to general policy in this area, 

state legislators should be cautious about putting more state authority and resources behind advance instruction directives. They 

should focus instead on standards governing decisions for patients who lack such directives. State law should be responsive to 

the reality that decisions at the bedside are almost always guided 

by proxies seeking to do what they believe the patient would 

have wanted or what they believe now best serves the patient’s 

welfare. Lawmakers should give proxies, families, and other informal surrogates the necessary authority and discretion to resolve treatment dilemmas, while always encouraging those proxies and surrogates to seek the best care possible for the patient 

now here and always treating best care as the primary aim in disputed cases. Congress should revisit the Patient SelfDetermination Act of 1990 and consider amendments and revisions that recognize the authority of informal surrogates to decide on behalf of incapacitated patients and that promote the 

“best care possible for the present patient” as the basic standard 

for clinical decision-making. This federal statute, which requires 

health care providers to notify patients about advance directives, 

was intended to increase patient involvement in treatment decisions, chiefly by providing patients with the opportunity to express their wishes ahead of incapacitation. Experience has 

shown, however, that these well-meant measures have not had 

much practical impact and have been ineffective in promoting 

better care for incapacitated patients. 

5. Good long-term care requires willing and able caregivers, 

community supports, caregiving institutions, and social 

policies that go beyond advance directives and beyond even 

responsible advance care planning. Public policy must address these issues directly. 

Improved legal instruments for decision-making, and more capacious and comprehensive forms of advance care planning, will 

not by themselves enable even the most devoted family members to 

do their work well. The ability of family caregivers to give proper 
218 │ TAKING CARE

care to persons with dementia depends greatly on the economic, 

social, and communal resources available to them and to their 

professional caregivers: for example, public and private health 

insurance that fits their special needs; affordable long-term care 

insurance; personnel and funds for respite-care; appropriate institutional housing and care-giving facilities; home care services; 

technologies devised to assist in giving basic bodily care; faithbased or civic support groups for patients and families; the availability of health care providers who can give continuity of care 

and comprehensive oversight of medical attentions; and, of 

course, vigorous support for biomedical research into the prevention and treatment of the various forms of dementia. Not 

having explored any of these issues in any detail, the Council is 

not now in a position to make legislative or policy recommendations in these areas, either about what should be tried or about 

how it should be paid for. However, our recognition of the importance of tackling these matters is one of the reasons for our 

next and final recommendation. 

C. Presidential Commission on Aging, Dementia, and 

Long-Term Care 

This report on ethical caregiving began by calling attention to the 

challenges our society may soon face as the population of elderly 

persons in need of long-term care grows. With the impending 

retirement of the baby boom generation, we see an urgent need 

to begin planning for the likely strain on families and institutions 

that may very well result from the unprecedented combination of 

greater longevity, increased incidence of dementia, the decreasing 

ratio of active workers to retired persons, the increasing cost of 

care, and the looming shortage of paid and unpaid caregivers. 

We hope that our report has performed an important public 

service by heightening the visibility of the problems that can be 

expected to arise, by drawing attention to their often-neglected 

ethical dimensions, by pointing out the limited value of advance 

directives, and by suggesting some guidelines for what should be 

considered good care in a decent society. 

And yet peering into this, our future, leaves us more humbled than certain of what course to take. We have offered key 
C ONCLUSIONS AND RECOMMENDATIONS │219

and, we think, quite critical advice in those areas for which our 

Council is best suited to give guidance. But our work has also 

opened up before us a series of questions touching upon areas 

that must be taken up by and in conjunction with others—by 

experts in demography and economics, and above all by policymakers. Intensive study and planning are required if the nation is 

to avoid a destructive conflict between generations and the neglect or abandonment of the frail elderly. We also recognize that 

the ethical analysis we have provided is of limited value in the 

absence of adequate caregiving institutions and familial caregivers 

with the requisite character and resources. Therefore, we are 

recommending as a next step the establishment of a Presidential Commission on Aging, Dementia, and Long-Term 

Care. 

To meet the challenges of our aging society, we need first to 

face up to their existence. Although most American families are 

already all too familiar with this subject in poignant personal 

ways, we as a nation have not yet addressed this topic squarely in 

our public discourse. It is time for public acknowledgement, at 

the national level, of the seriousness of the challenge. More important than raising consciousness, it is time for careful research, 

sustained inquiry, creative innovations, and responsible collective 

action. A Presidential Commission on Aging, Dementia, and 

Long-Term Care could launch such an effort by undertaking a 

careful and comprehensive study of this entire subject—in all its 

aspects—and by offering feasible and sensible recommendations 

for innovation and reform. 

The first mission of such a body would be to collect reliable 

data and to commission empirical research (1) to understand and 

assess the demographic, economic, and policy realities of the present, (2) to make reasonable projections about the challenges of 

the future, (3) to review and evaluate the economic and human 

resources available to meet them, paying attention to the hard 

questions about priorities, and (4) to identify and assess as models the best practices that are currently in use or in development 

in various communities around the country. The body should 

pay special attention to the social challenges of providing longterm care for persons with dementia and debility, once the baby 

boomers enter old age. 
220 │ TAKING CARE

The second mission would be to develop and recommend 

feasible policy reforms, whose primary aim would be to improve 

the capacity of families to care for their loved ones, rewarding 

and supporting their efforts by promoting institutions and practices—such as long-term care insurance, community-based respite care programs, and a flexible menu of long-term care options—that can assist caregivers in their task. It should pay special attention to the needs for continuity of care and the importance of fostering cooperation among families, professional caregivers and caregiving institutions, and faith-based communities. 

At the same time, the commission should look for ways to improve the existing safety net for those who lack adequate resources to care for themselves. 

The challenges ahead are ethical, social, economic, and 

medical. Accordingly, the Commission’s members should include 

persons knowledgeable in these fields. Where it lacks the expertise, it should take testimony and seek advice from people with 

knowledge and experience in all the relevant areas, including, 

among them, the following: the demography of American society; the changing prevalence of chronic disease and trajectories 

toward death; biomedical research into the diseases and disabilities of old age (especially Alzheimer’s disease and the other senile 

dementias); the design and management of long-term care institutions; best practice standards for clinical care for the frail elderly, especially those with dementia; nursing and paraprofessional recruitment and training; the changing structure of 

modern family life, with special attention to effects on available 

and likely caregivers; ethical caregiving at the end of life, including the experience of hospice care; the economics of old age; the 

wealth of baby boomers as they reach retirement; options and 

costs of private long-term care insurance; the effects of tax policy 

on incentives to save for old age; the rules governing Medicare 

reimbursements and Medicaid eligibility; the role of faith-based 

institutions in caregiving at the end of life; community based respite-care programs for caregivers; and local, ethnic, and religious 

differences in expectations and practices regarding eldercare. 

We are well aware that Presidential commissions, like advance directives, are not a panacea. They have their occupational 

hazards and their temptation to grandiosity and radical “solu-
C ONCLUSIONS AND RECOMMENDATIONS │221

tions.” The commission proposed here should therefore proceed 

boldly but modestly, mindful especially of the fact that old age and 

dying are finally not problems to be solved, but human experiences that must 

be faced. The commission should also always bear in mind that the 

demands of long-term care exist alongside many other civic 

goods, and that what is practically possible and publicly responsible will fall short of some imaginable ideal that could be pursued if resources were unlimited or if our society faced no other 

serious challenges. Indeed, the commission’s charge should require it to assess the potential unintended long-term costs of 

providing public long-term-care benefits, to make sure that any 

public benefits go to the truly needy, and to see that nothing is 

done to undermine familial and intergenerational responsibility 

and self-sufficiency. Our goal is to strengthen caregiving by loved 

ones, not to replace them. 

We also recommend that the commission avoid any temptation to propose a complete reworking of the entire American 

health care system or wholesale reform of Medicare and Medicaid. Rather, in developing its recommendations, it should target 

those focused but crucial reforms that could have a large, cumulative effect in reshaping existing policy and behavior. The targeted reform, which seems small today, is often the best reform—both because it is the only practical reform possible in a 

society resistant to radical transformation and because responsible small steps taken early can lead us on a path toward permanent and sustainable improvements. 

The challenges of caregiving in our aging society deserve and 

demand the attention of our nation’s leaders at the highest levels. 

They will soon confront every American family, and we would be 

most wise to give them careful and most serious thought before 

they are fully upon us. 

* * * 

Aging, dementia, and dying, we are well aware, are not the 

cheeriest of topics. We recognize that it would be much more 

pleasant to look the other way and perhaps much easier to treat 

the topic in purely economic terms. But denial is not an option, 

and much more than money is at stake. Millions of American 
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families already know the score and are struggling, often magnificently, to do the right thing for their loved ones, all on their own. 

It remains for the nation to acknowledge the need and rise to 

meet it. A mature and caring nation, concerned about staying 

human in a technological age, will not shy away from its responsibilities. If asked, “Who cares?” the answer must be, “We do.”
APPENDICES 

PERSONAL STATEMENTS

The preceding text constitutes the official body of this report; it stands as 

the work of the entire Council. In the interest of contributing further to public 

discussion of the issues, and of enabling individual members of the Council to 

speak in their own voice on one or another aspect of this report, we offer in this 

Appendix personal statements from those members who have elected to submit 

them: 

 Statement of Rebecca S. Dresser, J.D., M.S. 226

 Statement of Alfonso Gómez-Lobo, Dr. phil. 228

 Statement of Janet D. Rowley, M.D., D.Sc. 229 
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Personal Statement of Professor Dresser 

Bioethics often focuses on the speculative, the symbolic, the exotic 

developments that have little direct impact on people’s lives. Taking Care departs 

from this model. Many, many families face the formidable task of deciding about 

medical treatment for older relatives unable to make their own decisions. And 

many not now in that situation worry that it will happen at some future point. 

Besides being a personal and family problem, this is a big and expanding social 

problem. There is a large and soon to be larger population of people affected by 

dementia and we are far from ready to cope. 

In this report, the Council adds its voice to those calling for more 

systematic and sustained attention to the caregiving demands presented by an 

aging society. Taking Care offers ethical analysis and guidance, as well as a few 

rules to govern caregiving decisions. It represents our effort to move the 

conversation, to promote a richer and more robust examination of the distinct 

issues characterizing medical care for dementia patients. 

Navigating a proper course between extending life and accepting death is 

never easy, but discerning that course is particularly difficult in the context of 

dementia care. People with dementia are vulnerable to the other health problems 

that accompany aging. At the same time, they can live for many years after they 

lose the ability to make their own choices. And they remain conscious and able to 

experience burdens and benefits from treatment interventions. These facts join to 

present special challenges to those who must decide on the patients’ behalf. 

The standard legal and ethical approaches to treatment decision-making for 

incapacitated patients supply insufficient guidance to loved ones and clinicians 

responsible for dementia patient care. In the dementia setting, advance 

instructions are of limited use. Indeed, dementia care is not a problem that we as 

individuals can manage on our own. If we are among the many people affected 

by dementia in the coming decades, others will inevitably determine how we live 

and die. 

Best care for dementia patients includes ascertaining how they could 

experience a proposed medical intervention. Assessing an intervention’s burdens 

and benefits demands attention to detail. Families and clinicians responsible for 

caregiving must look closely at the patient and possible treatment options. For 

confused and frail dementia patients, interventions often create new distress and 

discomfort, and this must be part of the benefit-burden analysis. 

The case studies in Taking Care offer in-depth examination of specific 

treatment questions. Although individual Council members (and readers) will 

favor different resolutions in particular cases, what is most important is the 

careful and precise inquiry into the nature of appropriate care for dementia 

patients. The case analyses identify central features of good care and examine a 

range of permissible choices for those at the bedside. 

Dementia caregiving is not a happy topic for biomedicine and bioethics. It 

does not offer opportunities for optimistic speculation about a future in which 

human mortality and suffering are absent. For this reason, many would prefer to 
Appendix: Personal Statements │ 227 

ignore it and concentrate instead on the hypothetical benefits of various forms of 

cutting-edge research. This seems to me irresponsible and indefensible. 

Attention to everyday clinical problems should be part of the bioethics agenda. 

Delivering good care to patients suffering today should be the primary goal of 

medicine and health policy. For too many dementia and other patients in this 

country, we fall short of this goal. 

With this report, the Council draws attention to today’s unmet needs and to 

the larger problems that await us. We must respect and protect dementia patients, 

but we must also recognize medicine’s limits, our status as mortal creatures, and 

our obligations to the other people in our lives. Giving due regard to all of these 

concerns will be hard to do, and without a concerted effort, we are certain to fail. 

Rebecca S. Dresser 
228 │ TAKING CARE

Personal Statement of Professor Gómez-Lobo 

The report affirms two important philosophical principles that should 

govern our care of aging patients. The first one states that it is wrong 

intentionally to cause the death of a demented patient (or of any patient, for that 

matter). The force of this principle rests upon several considerations deeply 

rooted in our common morality. Life is the grounding good, the good that 

sustains all other human goods. Since the function of morality is the protection of 

the human goods, it is natural to uphold the universal principle that enjoins us to 

respect every human life, no matter how diminished it may appear to be. A 

demented person is a severely handicapped individual who does not thereby 

cease to be a person. To think otherwise is to embrace a radical form of dualism 

that leads to the positing of two deaths: one for the mind and one for the body. 

But this does not match our unified experience of ourselves and of others. A 

demented person is a human being with an organ failure just as a blind person is 

a human being whose eyes have failed. Basic forms of communal care and respect 

are due in both cases. 

The second principle states that in certain circumstances it is morally 

permissible to let a patient die of natural causes if a treatment has become futile 

or excessively burdensome. This interpretation of the traditional ordinaryextraordinary means distinction also rests on considerations derived from our 

common morality. Life is the grounding good, but it is not the sole good, nor the 

highest good. Moreover, it is a fragile good and attachment to it in certain 

circumstances becomes irrational. We have to learn to let go, especially at a time 

when the imperative of relentless use of the available technology becomes the 

default position. Because of it, withholding or withdrawing treatment often 

requires an act of exceptional courage. In considering the burdens to be relieved 

by the decision to withhold or withdraw treatment we should not restrict 

ourselves to the patient, but should also take into account how the family, the 

immediate caregivers, and the surrounding community are affected. Their goods 

matter too. This traditional view is also rooted in the philosophical conviction 

that morality is not primarily an individualistic but rather a communal enterprise. 

Alfonso Gómez-Lobo 
Appendix: Personal Statements │ 229 

Personal Statement of Dr. Rowley 

For me, this report on the care of the demented aging is a scary document 

for a number of reasons. First, it is vehemently opposed to assisted suicide, saying 

it is behavior beyond moral bounds, although it is legally permitted in Oregon 

(never mentioned) and a bill for “Compassionate Choice” is currently being 

considered by the California legislature. This report takes a very draconian view 

of dying. The more painful it is made to be by applying rigid ethical rules, the 

more ennobling it is for both the patient and the caregiver. In the last case history 

in Chapter 4, the report explicitly says that very clear advanced directives written 

by an intelligent, mentally competent individual can be overridden by his 

daughter when he is no longer competent because he is happy in his demented 

state and his daughter wants to take care of him. So much for the moral or legal 

force of an individual’s advanced directives! The report emphasizes repeatedly 

that the caregiver’s primary responsibility is to the patient “here and now”, and 

the advanced directives can and should be ignored depending on the situation at 

the time. The clear message from this report is, if you feel strongly about not 

living in a decerebrate state, you better kill yourself while you have control over 

your fate! Compassion (the term is used only 5 times, in Chapter 3 and never in 

Chapter 4) as a human virtue to be cultivated gets short shrift as well! 

“Compassion” may lead to acts that are ethically evil, so says the report, and 

under no circumstance should that suspect “virtue” be allowed to becloud the 

ethical issues. The irony between the Report’s view of “compassion” and the bill 

before the California legislature, “Compassionate Choices,” could not be more 

evident. 

So what do those of us who are aging owe our families and friends and our 

society? As has been pointed out by Garrett Hardin in “The Tragedy of the 

Commons”, in Science some years ago, greedy individuals often take more than 

their share from the common pool, in his case the common grazing land in 

England used collectively by many livestock farmers, thus destroying it for 

everyone. Unfortunately, the American political scene is rife with greedy groups, 

corporations and farmers, and now the AARP! This report from the President’s 

Council on Bioethics comes with no price tag and I’m not competent to guess at 

how many billions of dollars it might cost to implement. Where will that money 

come from? Might it not come from programs that help needy infants receive 

better health care and early childhood education so that some of the 

disadvantages associated with being born in poverty might be ameliorated by an 

enriched early childhood? If you asked them bluntly, would grandparents really 

want to steal from their grandchildren? It is an interesting question. Maybe we 

do not wish to know the answer? 

My Recommendations: 

1. What is the responsibility of the patient to his/her family, friends, and 

society? 
230 │ TAKING CARE

a) Virtually everyone regardless of age should have a will. Certainly 

when individuals apply for Medicare, the application process should be 

modified so that individuals are very strongly encouraged to have a will. 

Given the costs of probate, etc., it would likely be cheaper to have the 

government offer to pay some minimal fee for completing a will. 

b) Individuals should also be very strongly encouraged to discuss 

planning for multiple eventualities including the level of medical care 

desired if mentally incapacitated, disposition of one’s body, organ 

donation, etc. Thus although advanced directives may not have been 

effective in the past, their implementation could be substantially 

improved relatively easily. These decisions should be part of an 

electronic personal/medical record, that is protected for privacy, but 

available to caregivers, physicians, and hospitals in case of an emergency 

so that the person is treated in accordance with his/her wishes. 

2. The questions raised in Chapter 3, about whether we benefit or harm the 

person by extending a life that is terribly painful or extremely burdensome to 

those the person loved most, are difficult, and they do not have a single answer. 

We need guidelines for caregivers of individuals with a variety of medical 

problems, but especially of the infirm elderly. The Department of Health and 

Human Services should commission the Institute of Medicine to develop 

guidelines regarding the use of various levels of treatment based on benefit to the 

patient, difficulty of the procedure and likely complications, and cost, for patients 

in various stages of dementia. What are the criteria and considerations for 

selecting or for recommending against certain procedures at different stages? 

3. There should be a National Commission composed of members with 

very diverse views (not just the conservative right) to discuss and recommend 

guidelines about how health care resources should be distributed. At a time when 

parts of some of our large cities have infant mortalities rivaling the third world, 

and obesity in infants and young adults is skyrocketing, especially among the 

poor, how should the total national health expenditure be allocated among 

different groups? Once a portion has been allocated to elderly individuals, how 

should that resource be divided to fund the various categories of care, including 

that of the demented elderly individuals? 

These are very serious issues. The report of the President’s Council on 

Bioethics provides answers from a very restricted perspective and thus it, 

unfortunately, cannot serve as an enlightened guide as we try to cope with these 

critical challenges. 

Janet D. Rowley 
GLOSSARY

Advance (treatment) directives: Written or oral declarations, by individuals 

capable of making informed and voluntary decisions, indicating preferences 

regarding future medical treatments. For example, they may indicate a preference 

for or against certain medical interventions in specified clinical situations. Or they 

may specify surrogate decisionmakers, in the event that the individual becomes 

incapacitated. Advance directives are of two kinds: instruction directives and 

proxy directives. (See below) 

Alzheimer’s disease: A progressive degenerative disease of the brain that causes 

impairment of memory and dementia, manifested by confusion, visual-spatial 

disorientation, inability to calculate, and deterioration of judgment; delusions and 

hallucinations may occur. The most common degenerative brain disorder, 

Alzheimer’s disease makes up 70 percent of all cases of dementia. Onset is usually 

in late middle life, and death typically ensues in 5-10 years. (Stedman’s Medical 

Dictionary) 

Best care: A standard for caregiving that always seeks to serve the patient’s 

current welfare. It emphasizes benefiting the life the person now has, while 

considering also his own earlier ideals, preferences, and values as an integral part 

of his current well-being. 

Best interest: A legal standard of caregiving for incompetent patients, defined by 

the courts in terms of what a “reasonable person” would decide in the same 

situation. A consideration of best interests generally attempts to weigh the 

burdens and benefits of treatment to the patient in his present condition, when no 

clear preferences of the patient can be determined. 

Caregiver: Any person who cares for an individual needing help taking care of 

himself, in ways that range from meeting the basic needs of everyday life to 

offering medical, nursing, or hospice care. Caregivers may be paid or volunteer; 

they include family and friends as well as doctors, nurses, social service providers, 

and hospice professionals. 

Dementia: The loss, usually progressive, of cognitive and intellectual functions, 

without impairment of perception or consciousness; caused by a variety of 

disorders including severe infections and toxins, but most commonly associated 

with structural brain disease. Characterized by disorientation, impaired memory, 

judgment, and intellect, and a shallow labile affect. (Stedman’s Medical 

Dictionary) 
232 │ TAKING CARE

Extraordinary care: Generally used to refer to medical treatments that, in the 

particular circumstances, impose undue physical or personal burdens on the 

patient or that are not likely to substantially improve the patient’s condition but 

merely prolong his dying. Extraordinary care is considered ethically optional, 

rather than obligatory. 

Healthcare power of attorney: A legal form of written proxy directive. (See 

below) 

Hospice: An institution that provides a centralized program of palliative and 

supportive services to dying patients and their families, in the form of physical, 

psychological, social, and spiritual care; such services are provided by an 

interdisciplinary team of professionals and volunteers who are available at home 

and in specialized inpatient settings. (Stedman’s Medical Dictionary) 

Instruction directive: This form of advance directive is a written or oral 

statement of treatment preferences created to guide the choices of physicians or 

other decisionmakers when the patient is no longer able to indicate his 

preferences. It can be very specific, indicating specific treatment preferences for 

specific medical circumstances, or it may be more general, stating only (for 

example) that the patient does not wish to undergo “extraordinary” treatment 

measures when recovery is improbable and death is near. The written form of an 

instruction directive is also referred to as a living will. 

Ordinary care: Generally used to refer to readily available medical treatments 

whose benefits to the patient are likely to outweigh the burdens and risks and that 

have a reasonable possibility of improving the patient’s condition. Ordinary care 

is considered ethically required. 

Principle of double effect: A traditional principle in ethics that aims to provide 

specific guidelines for determining when it is morally permissible to perform an 

action in pursuit of a good end in full knowledge that the action will also bring 

about certain bad results. It generally states that, in cases where a contemplated 

action has both good and bad effects, the action is permissible only (a) if it is not 

wrong in itself, and (b) if it does not require that the agent directly intend the evil 

result. For example, the principle of double effect is used in medical ethics 

regarding end-of-life care to justify giving morphine to relieve intense pain (the 

intended effect), even though doing so increases the risk of respiratory arrest and 

an earlier death (the second effect), provided that one is not intending to produce death by 

administering the drug. In contrast, attempts to relieve the pain by deliberately killing 

the patient cannot be justified, because the action is wrong in itself. 

Proxy directive: This form of advance directive is a written or oral appointment 

of one or more specific individuals to serve as the surrogate decisionmaker(s) for 

a person when he is incompetent to decide for himself. 
GLOSSARY │ 233 

Prudence: An ethical excellence of heart and mind, displayed in an eagerness to 

seek and an ability to find the “just right” course of action, attaining the best 

outcome possible in the light of present circumstances. It is sometimes also 

known as practical wisdom. 

Stokes-Adams episode: A temporary loss of consciousness due to transient 

interruption of electrical impulses in the heart, and the consequent failure of the 

heart to pump blood to the brain.

Substituted judgment: A legal standard of decisionmaking on behalf of 

incompetent persons that seeks to make treatment decisions by trying to discern 

or guess what the patient himself would decide were he capable of doing so. It 

may be informed by the patient’s verbal instructions or the surrogate 

decisionmaker’s recollection of the patient’s values and attitudes during his years 

of competence. 

Surrogate decisionmaker: A person appointed either by the patient, or, if the 

patient fails to appoint someone, by the courts, to make medical decisions on 

behalf of an incompetent patient. 

THEMATIC BIBLIOGRAPHY 

Resources for professionals, the elderly, and caregivers. 

Contents 

Advance Directives / Legal Instruments 237

Books and Articles 237

Case Law & Statutes 240

Federal 240

State 240

Model Codes and Directives 241

Reports 242 

Sample Forms 242

Alzheimer’s Disease 242

 Costs 242

 Diagnosis 243

 Symptoms / Trajectory (including Personal Accounts) 244

 Treatment & Research 246

Caregiving 249

Burdens & Benefits 249

By Family Members 253

By Institutions 255

Hospice 256

Caregiving Generally 256

Dementia 257

End of Life 258

Financial Costs 259 

 Living Arrangements 260

 Long-Term Care 260

Death & Dying 260 

 Dignity 260

 Euthanasia & Assisted Suicide 261

 Medical Standards / Best Practices 264

 Nutrition & Hydration 266

 Persistent Vegetative State 267

 Quality of Life 267 

 Trajectories 268
236 │ TAKING CARE

Dementias other than Alzheimer’s 268

Demographics 269

American Society 269 

Alzheimer’s Community 269

Baby Boomers 269 

Caregivers 269 

Family Structure 271

General 271

Global 274

Economic Matters 275

Ethical Reflections 275

 Autonomy & Its Limits 275 

 Meaning of Aging 276

 Medical Ethics 278

Intergenerational Readings 281 

Longevity 281 

Literary Sources 282 

Miscellaneous 283 

Public Policy 284 

Sources of Information and Support 286

Institutional 286 

Government 286

Private 289 

Web-Based Resources 304 
THEMATIC BIBLIOGRAPHY 

Readers newly interested in this subject area may find the items 

noted with asterisks most useful. 

Advance Directives / Legal Instruments 

Books and Articles 

Alexander, G. “Durable Power of Attorney as a Substitute for 

Conservatorship.”4 Psychology, Public Policy, and Law 653, September 1998. 

American Psychological Association, Inc. “Optimal Use of Orders Not to 

Intervene and Advance Directives.” 4 Psychology, Public Policy, and Law 668, 

September 1998. 

Boxx, K. “The Durable Power of Attorney’s Place in the Family of 

Fiduciary Relationships.” 36 Georgia Law Review 1, Fall 2001. 

Brett, A. “Limitations of Listing Specific Medical Interventions in Advance 

Directives.” Journal of the American Medical Association 255(6): 825-828, August 14, 

1991. 

Cantor, N. Making Medical Decisions for the Profoundly Mentally Disabled. Boston, 

MA: MIT Press, 2005. 

Cantor, N. “Making Advance Directives Meaningful.” 4 Psychology, Public 

Policy, and Law 629, September 1998. 

Cohen, I. Glenn. “Negotiating Death: ADR and End-of-Life Decision 

Making.” 9 Harvard Negotiation Law Review 253, Spring 2004. 

Coppola, K., et al. “Accuracy of Primary Care and Hospital-based 

Physicians’ Predictions of Elderly Outpatients Treatment Preferences With and 

Without Advance Directives.” Archives of Internal Medicine 161: 431-440, 2001. 

Culver, C. “Advance Directives.” 4 Psychology, Public Policy, and Law 676, 

September 1998. 

Danis, M. “A Prospective Study of Advance Directives for Life-Sustaining 

Care.” New England Journal of Medicine 324(13): 882-888, 1991. 
238 │ TAKING CARE

Degenholtz, H., et al. “Brief Communication: The Relationship Between 

Having a Living Will and Dying in Place.” Annals of Internal Medicine 141: 113-117, 

2004. 

Ditto, P., et al. “Advance Directives as Acts of Communication: A 

Randomized Controlled Trial.” Archives of Internal Medicine 161: 421-430, 2001. 

Dresser, R. “Dworkin on Dementia: Elegant Theory, Questionable Policy.” 

Hastings Center Report 25(6): 32-38, November-December 1995. 

Dresser, R. “Missing Persons: Legal Perceptions of Incompetent Patients.” 

46 Rutgers Law Review 609, Winter 1994. 

Dresser, R. “Precommitment: A Misguided Strategy for Securing Death 

with Dignity.” 81 Texas Law Review 1823, June 2003. 

Dresser, R. “Schiavo: A Hard Case Makes Questionable Law.” Hastings 

Center Report 34(3): 8-9, May-June 2004. 

Dresser, R. “The Conscious Incompetent Patient.” Hastings Center Report

32(3): 9-10, May-June 2002. 

Eakes, M., et al. “Planning Lessons Learned from End-of-Life Disputes.” 

17 National Academy of Elder Law Attorneys Quarterly 21, Summer 2004. 

Eiser, A. and Weiss, M. D. “The Underachieving Advance Directive: 

Recommendations for Increasing Advance Directive Completion.” American 

Journal of Bioethics 1: W10, 2001. 

Emanuel, L., et al. “Advance Directives for Medical Care—A Case for 

Greater Use.” New England Journal of Medicine 324(13): 889-895, March 28, 1991. 

Fagerlin, A. and Schneider, C. “Enough: The Failure of the Living Will.” 

Hastings Center Report 34(2): 30-42, March-April 2004. 

Gallagher, E. “Advance Directives for Psychiatric Care: A Theoretical and 

Practical Overview for Legal Professionals.” 4 Psychology, Public Policy, and Law 746, 

September 1998. 

Garas, N. and Pantilat, S. “Chapter 49: Advance Planning for End-of-Life 

Care.” Making Health Care Safer: A Critical Analysis of Patient Safety Practices. AHRQ 

Evidence Report No. 43. July 20, 2001. http://www.ncbi.nlm.nih.gov/books/ 

bv.fcgi?rid=hstat1.section.62397 (accessed August 24, 2005). 

Goodman, M., et al. “Effect of Advance Directives on the Management of 

Elderly Critically Ill Patients.” Critical Care Medicine 26: 701-704, 1998. 
T HEMATIC BIBLIOGRAPHY │ 239

Hamann, A. “Family Surrogate Laws: A Necessary Supplement to Living 

Wills and Durable Power of Attorney.” 38 Villanova Law Review 103, 1993. 

Hammes, B. and Rooney, B. L. “Death and End-of-Life Planning in One 

Midwestern Community.” Archives of Internal Medicine 158: 383-390, 1998. 

Hawkins, N., et al. “Micromanaging Death: Process Preferences, Values, 

and Goals in End-of-Life Medical Decision-Making.” Gerontologist 45: 107-117, 

2005. 

Holley, J., et al. “Factors Influencing Dialysis Patients’ Completion of 

Advance Directives.” American Journal of Kidney Diseases 30: 356-260, 1997. 

Jeffreys, J. “Advance Directives: Are They Worth the Paper They’re Written 

On?” 27 Colorado Lawyer 125, June 1998. 

Karnath, B., and Vaiani, C. “When a Family Member Changes Their Mind 

Regarding the DNR Order: The Importance of Documentation.” Ethics & 

Medicine: An International Journal of Bioethics 20(2): 31-34, Summer 2004. 

Lieberson, A. Advance Medical Directives. Deerfield, IL: Thomson Legal 

Publishing, 1992. 

Longnecker, R. “Health Care Proxies, Living Wills, and Durable Power of 

Attorney.” Proceedings from American Bar Association Continuing Legal 

Education. American Law Institute, September 12, 1991. 

Lynn, J. “Why I Don’t Have a Living Will.” Law, Medicine, & Health Care 19: 

101-104, 1991. 

Meisel, A. and Cerminara, K. The Right to Die: The Law of End-of-Life 

Decisionmaking. 3rd ed. New York: Aspen Publishers, 2004 (2005 Supplement). 

Morrison, R., et al. “The Inaccessibility of Advance Directives on Transfer 

from Ambulatory to Acute Care Settings.” Journal of the American Medical 

Association 274: 501-503, 1995. 

Schaefer, K., et al. “The Advance Directive: An Expression of Autonomy, 

But Also of Care.” Ethics & Medicine: An International Journal of Bioethics 18(1): 15-

19, Spring 2002. 

Sehgal, A. “How Strictly Do Dialysis Patients Want Their Advance 

Directives Followed?” Journal of the American Medical Association 267(1): 59-63, 

1992. 

Shapiro, M., et al. Bioethics & Law: Cases, Materials and Problems. 2nd ed. 

Eagan, MN: West Publishing, 2003. 
240 │ TAKING CARE

Teno, J. “Advance Directives: Time to Move On.” Annals of Internal Medicine 

141: 159-160, 2004. 

Teno, J. “Do Advance Directives Provide Instructions That Direct Care?” 

Journal of the American Geriatrics Society 45: 508-512, 1997. 

Zimring, S. “Multi-Cultural Issues in Advance Directives.” 13 National 

Academy of Elder Law Attorneys Quarterly 12, Summer 2000. 

Zingmond, D., et al. “Regional and Institutional Variation in the Initiation 

of Early Do-Not-Resuscitate Orders.” Archives of Internal Medicine 165(15): 1705-

1712, August 8, 2005. 

Case Law & Statutes 

Rather than attempt to provide a comprehensive list of case law and statues 

related to advance directives, we reference here only those items reviewed during 

the writing of this report. We refer legal researchers to the seminal work in this 

field by Alan Meisel and Kathy L. Cerminara, The Right to Die: The Law of End-ofLife Decisionmaking.

Federal 

Cruzan v. Director, Missouri Dept. of Health, 497 U.S. 261, 110 S. Ct. 2841 

(1990). 

Pain Relief Promotion Act of 1999, H.R. 2260, S. 1272 (not enacted), available 

online at http://thomas.loc.gov/cgi-bin/query/z?c106:S.1272. 

Patient Self-Determination Act of 1990, §4206 and §4751 Omnibus 

Reconciliation Act of 1990, Pub L No. 1010-508 (November 5, 1990). 

Ulrich, L. The Patient Self-Determination Act: Meeting the Challenges in Patient 

Care. Washington, D.C.: Georgetown University Press, 1999. 

State 

Conservatorship of Wendland, 110 Cal. Rptr. 2d 412 (Cal. 2001). 

In re Martin, 538 N.W. 2d 399 (Mich. 1995). 

Matter of Conroy, 486 A. 2d 1209 (N. J. 1989). 

Matter of Edna M. F., 563 N.W. 2d 485 (Wis. 1997). 

Matter of Spring, 405 N.E. 2d 115 (Mass. 1980). 
T HEMATIC BIBLIOGRAPHY │ 241

Matter of Quinlan, 355 A. 2d 647 (N. J. 1976). 

McKay v. Bergstedt, 801 P. 2d 617 (Nev. 1990). 

Superintendent of Belchertown State School v. Saikewicz, 370 N.E. 2d 417 (Mass. 

1977). 

Model Codes and Directives 

Alexander, G. “Time for a New Law on Health Care Advance Directives.” 

Symposium: Legal Issues Relating to the Elderly. 42 Hastings Law Journal 755, 

March 1991. 

Bok, S. “Personal Directions for Care at the End of Life.” New England 

Journal of Medicine 295(7): 367-369, August 12, 1976. 

Emanuel, L. and Emanuel, E. “The Medical Directive: A New 

Comprehensive Advance Care Document.” Journal of the American Medical 

Association 261(22): 3288-3293, June 9, 1989. 

Kutner, L. “Due Process of Euthanasia: The Living Will, a Proposal.” 44 

Indiana Law Journal 539, 1969. 

Martin, D., et al. “A New Model of Advance Care Planning.” Archives of 

Internal Medicine 159: 86-92, 1999. 

McLean, E. “Living Will Statutes in Light of Cruzan v. Director, Missouri 

Department of Health: Ensuring that Patient’s Wishes Will Prevail.” 40 Emory 

Law Journal 1305, Fall 1991. 

Modell, W. “A ‘Will’ to Live.” New England Journal of Medicine 290(16): 907-

908, April 18, 1974. 

Stavis, P. “The Nexum: A Modest Proposal for Self-Guardianship by 

Contract: A System of Advance Directives and Surrogate Committees-At-Large 

for the Mentally Ill.” 16 Journal of Contemporary Health Law and Policy 1, Winter 

1999. 

Uniform Health-Care Decisions Act (1993). 

Uniform Rights of the Terminally Ill Act (1989). 
242 │ TAKING CARE

Reports 

American Bar Association Commission on Law & Aging. Health Care Power 

of Attorney and Combined Advance Directive Legislation. Chicago, IL: ABA, September 

2004. 

American Bar Association Commission on Law & Aging. Health Care 

Surrogate Decision Making Legislation. Chicago, IL: ABA, June 2001. 

American Bar Association Commission on Law & Aging. Surrogate Consent in 

the Absence of an Advance Directive. Chicago, IL: ABA, July 2004. 

American Bar Association Section of Real Property, Probate, and Trust 

Law. The Uniform Health-Care Decisions Act and its Progress in the States. Chicago, IL: 

ABA, May/June 2001. 

Last Acts. Means to a Better End: A Report on Dying in America Today. 

Washington, D.C.: Last Acts, 2002. 

*New York State Task Force on Life and the Law. When Others Must Choose: 

Deciding for Patients Without Capacity. New York State Task Force on Life and the 

Law. December 1992. 

Sample Forms 

Aging with Dignity. “Five Wishes: The Easy Way to Help You and Your 

Loved Ones Plan for the Unexpected.” Tallahassee, FL: Aging With Dignity, 

2001. (www.agingwithdignity.org) 

Legal Counsel of the Elderly, Inc. “Planning for Incapacity: A Self-Help 

Guide—Advance Directive Forms for Connecticut.” 12th Annual Elder Law 

Institute Representing the Elderly Client of Modest Means, June 2000. Practising 

Law Institute, 2000. (This state provided as one example of many.) 

Schuster, M. “Planning for Incapacity: A Self-Help Guide—Advance 

Directive for New York.” Proceedings of 11th Annual Elder Law Institute: 

Representing the Elderly Client of Modest Means, July 1999. Practising Law 

Institute, 1999. (This state provided as one example of many.) 

Alzheimer’s Disease

Costs 

Johnson, N., et al. “The Epidemic of Alzheimer’s Disease. How Can We 

Manage the Costs?” Pharmacoeconomics 18(3): 215-223, 2000. 
T HEMATIC BIBLIOGRAPHY │ 243

Martikainen, J., et al. “Potential Cost-Effectiveness of a Family-Based 

Program in Mild Alzheimer’s Disease Patients.” The European Journal of Health 

Economics 5(2): 136-142, 2004. 

Prigerson, H. “Costs to Society of Family Caregiving for Patients with EndStage Alzheimer’s Disease.” New England Journal of Medicine 349(20): 1891-1892, 

2003. 

Riggs, J. A. “The Health and Long-Term Care Policy Challenges of 

Alzheimer’s Disease.” Aging & Mental Health 5(Supp. 1): S138-S145, 2001. 

Taylor, D. H., Jr. “Alzheimer’s Disease and the Family Caregiver: The Cost 

and Who Pays?” North Carolina Medical Journal 66(1): 16-23, 2005. 

Diagnosis 

Aguzzi, A. and Haass, C. “Games Played by Rogue Proteins in Prion 

Disorders and Alzheimer’s Disease.” Science 302(5646): 814-818, October 31, 

2003. 

Arnaiz, E., and Almkvist, O. “Neuropsychological Features of Mild 

Cognitive Impairment and Preclinical Alzheimer’s Disease.” Acta Neurologica 

Scandinavica. Supplementum 107(179): 34-41, 2003. 

Bennett, D., et al. “Mild Cognitive Impairment Is Related to Alzheimer 

Disease Pathology and Cerebral Infarctions.” Neurology 64(5): 834-841, March 8, 

2005. 

Clark, C., et al. “Alzheimer’s Symptoms May Strike Latinos Years Before 

White Americans.” Presented at 9th International Conference on Alzheimer’s 

Disease and Related Disorders of the Alzheimer’s Association. July 21, 2004. 

DeKosky, S. T. “Epidemiology and Pathophysiology of Alzheimer’s 

Disease.” Clinical Cornerstone 3(4): 15-26, 2001. 

D’Esposito, M., and Weksler, M. “Brain Aging and Memory: New Findings 

Help Differentiate Forgetfulness and Dementia.” Geriatrics 55(6): 55-58, 61-62, 

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Redfearn, S. “Joy...Or Pain? To Some Extent, How You Feel for the Rest 

of Your Life Is Under Your Control. Here’s What Science Shows Can Boost 

Your Chances of Living Healthier, Happier and Longer.” Washington Post. August 

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Tatar, M., et al. “The Endocrine Regulation of Aging by Insulin-like 

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Scott, J. “Life at the Top in America Isn’t Just Better, It’s Longer.” New 

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Burt, R. “The Aging Society: Policy Implications.” Presented at the 

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Sources of Information and Support

Institutional 

Government 

Administration on Aging

Washington, D.C. 20201 

(202) 619-0724 

http://www.aoa.dhhs.gov 

State and Area Agencies on Aging Locator: http://www.aoa.gov/eldfam/ 

How_To_Find/Agencies/Agencies.asp 

Elders & Families Website: http://www.aoa.gov/eldfam/eldfam.asp 

Agency for Healthcare Research and Quality

Office of Communications 

540 Gaither Rd., Ste. 2000 

Rockville, Maryland 20850 

(301) 427-1364 

http://www.ahrq.gov 

AHRQ supports research on health care outcomes; quality; cost, use, and access. 

Alzheimer's Disease Education and Referral Center 

P.O. Box 8250 Silver Spring, Maryland 20907-8250 

1-800-438-4380 

http://www.alzheimers.org 

Created by Congress to “compile, archive, and disseminate information 

concerning Alzheimer's disease” for health professionals and the public. 
T HEMATIC BIBLIOGRAPHY │ 287

Centers for Medicare and Medicaid Services

7500 Security Boulevard 

Baltimore, Maryland 21244-1850 

1-800-MEDICARE 

(410)-786-3000 

Main Website: http://www.cms.hhs.gov 

Medicare Website: http://www.medicare.gov 

Medicaid Consumer Information Website: http://www.cms.hhs.gov/ 

medicaid/consumer.asp 

Department of Health and Human Services

200 Independence Ave., S.W. Washington, D.C. 20201 

1-877-696-6775 (202)-619-0257 

Main Website: http://www.hhs.gov/ 

National Strategy for Suicide Prevention- Suicide Among the Elderly Website: 

http://www.mentalhealth.samhsa.gov/suicideprevention/elderly.asp

Department of Veterans Affairs

810 Vermont Ave., N.W. Washington, D.C. 20420 

1-800-827-1000 

Main Website: http://www.va.gov/ 

National Cemetery Administration Website: http://www.cem.va.gov 

Eldercare Locator, U.S. Administration on Aging

1-800-677-1116 

http://www.eldercare.gov/ 

The Eldercare Locator connects older Americans and their caregivers with 

sources of information on senior services. The service links those who need 

assistance with state and local area agencies on aging and community-based 

organizations that serve older adults and their caregivers. 

MedLinePlus Health Information

U.S. National Library of Medicine 

8600 Rockville Pike 

Bethesda, Maryland 20894 

(888) FIND-NLM (888) 346-3656 

http://www.nlm.nih.gov/medlineplus 

National Institutes of Health

National Institutes of Health 

9000 Rockville Pike Bethesda, Maryland 20892 

(301) 496-4000 

Main Website: http://www.nih.gov 

NIH Senior Health Website: http://nihseniorhealth.gov/listoftopics.html 

 Includes: The National Center for Complimentary and 

Alternative Medicine

1-888-644-6226 http://nccam.nih.gov/ 

and 
288 │ TAKING CARE

The National Institute of Neurological Disorders 

and Stroke 

(800) 352-9424 http://www.ninds.nih.gov/ 

National Institute on Aging 

Building 31, Rm. 5C27 

31 Center Drive, MSC 2292 Bethesda, Maryland 20892 

http://www.nia.nih.gov/ 

NIA leads the federal effort on aging research and its site includes written 

materials and other educational resources. 

National Library of Medicine

8600 Rockville Pike 

Bethesda, Maryland 20894 

(888) FIND-NLM 

(301) 594-5983 

http://www.nlm.nih.gov/ 

Senate Special Committee on Aging

G31 Dirksen Senate Office Building 

Washington, D.C. 20510 

(202) 224-5364 

http://www.senate.gov/~aging 

Senior Community Service Employment Program, Department of Labor

Employment and Training Agency of the U.S. Department of Labor 

Frances Perkins Building 

200 Constitution Ave., N.W. 

Washington, D.C. 20210 

1-877-US-2JOBS 

http://www.doleta.gov/seniors/ 

Senior Corps

1201 New York Ave., N.W. 

Washington, D.C. 20525 

(202) 606-5000 

(202) 565-2799 

http://www.seniorcorps.org/ 

Network of local volunteer opportunities for persons 55 and older organized by 

the federal government. 

Social Security Administration

Office of Public Inquiries 

Windsor Park Building 

6401 Security Blvd. 

Baltimore, Maryland 21235 

1-800-772-1213 

http://www.ssa.gov 
T HEMATIC BIBLIOGRAPHY │ 289

White House Conference on Aging 

4350 East-West Highway, Ste. 300 

Bethesda, Maryland 20814 

(301) 443-9462 

http://www.whcoa.gov/ 

Private

AARP

601 E St., N.W. 

Washington, D.C. 20049 

1-888-OUR-AARP 

http://www.aarp.org 

AARP is a nonprofit, membership organization for people age 50 and over that 

provides health information, advocates in the public policy arena, and supplies 

information on aging resources. 

Aging with Dignity

P.O. Box 1661 

Tallahassee, Florida 32302 

1-888-5-WISHES 

http://www.agingwithdignity.org 

Provides the Five Wishes Living Will. 

Alliance for Aging Research 

2021 K St., N.W., Ste. 305 

Washington, D.C. 20006 

(202) 293-2856 

http://www.agingresearch.org/ 

Promotes medical and behavioral research into the aging process and works 

toward improving baby boomer health by “developing, implementing and 

advocating programs in research, professional and consumer health education 

and public policy.” 

Alliance for Retired Americans

888 16th St., N.W. 

Washington, D.C. 20006 

(202) 974-8222 

http://www.retiredamericans.org/ 

 

Alzheimer’s Association

225 N. Michigan Ave., Fl. 17 

Chicago, Illinois 60601-7633 

1-800-272-3900 312-335-8700 

http://www.alz.org/ 
290 │ TAKING CARE

American Academy of Hospice and Palliative Medicine

4700 W. Lake Ave. 

Glenview, Illinois 60025 

(847) 375-4712 

http://www.aahpm.org/ 

American Academy of Pain Medicine 

4700 W. Lake 

Glenview, IL 60025 

(847) 375-4731 

http://www.painmed.org/ 

American Association for Geriatric Psychiatry

7910 Woodmont Ave., Ste. 1050 

Bethesda, Maryland 20814-3004 

(301) 654-7850 

Main Website: http://www.aagponline.org/ 

Geriatric Mental Health Foundation (GMHF) Website: http://www.gmhf 

online.org/gmhf/ 

A national association representing and serving members of the field of geriatric 

psychiatry. The Foundation website includes mental health information for older 

adults and their families, including finding a geriatric psychiatrist. 

American Association of Homes and Services for the Aging

2519 Connecticut Ave., N.W. 

 Washington, D.C. 20008-1520 (202) 783-2242 

http://www.aahsa.org/ 

The AAHSA represents over 5,600 not-for-profit nursing homes, retirement 

communities, assisted living facilities, and home and community-based service 

providers. The site includes consumer information and member information. 

American Association of Suicidology

5221 Wisconsin Ave., N.W. 

 Washington, D.C. 20015 

(202) 237-2280 

http://www.suicidology.org 

National 24-Hour Suicide Prevention Lifeline: 1-800-273-TALK 

Also provides referrals for mental health professionals, substance abuse 

assistance, housing, etc. 

American Bar Association Commission on Law and Aging

740 15th St., N.W. 

Washington, D.C. 20005-1022 

(202) 662-8690 

http://www.abanet.org/aging/
T HEMATIC BIBLIOGRAPHY │ 291

American Chronic Pain Association 

P.O. Box 850 

Rocklin, California 95677 

1-800-533-3231

http://www.theacpa.org/ 

This organization coordinates local groups that provide support for those 

suffering from chronic pain. The site also provides educational materials. 

American Federation for Aging Research 

70 West 40th St., 11th Floor 

New York, New York 10018 

(888) 582-2327 (212) 703-9977 

http://www.afar.org/ 

American Geriatrics Society (AGS)

The Empire State Building 

350 Fifth Ave., Ste. 801 

New York, New York 10118 

1-800-563-4916 (212) 755-6810 

Main Web Site: http://www.americangeriatrics.org 

Foundation for Health in Aging Website: http://www.healthinaging.org/ 

American Health Assistance Foundation 

22512 Gateway Center Dr. 

Clarksburg, Maryland 20871 

1-800-437-2423 (301) 948-3244 

http://www.ahaf.org 

A nonprofit funding research on age-related and degenerative diseases, educating 

the public, and providing emergency financial assistance to Alzheimer's disease 

patients and their caregivers. 

American Hospice Foundation

2120 L St., N.W., Ste. 200 

Washington, D.C. 20037 

(202) 223-0204 

http://www.americanhospice.org 

“Provides a searchable database of hospices, teaches courses and workshops on 

end of life issues for consumers, providers, and hospices, and researches 

consumer needs.” 

American Physical Therapy Association 

Section on Geriatrics 

1111 North Fairfax St. 

Alexandria, Virginia 22314 

1-800-999-2782 ext.3238 

http://www.geratricspt.org 
292 │ TAKING CARE

American Society on Aging

833 Market St., Ste. 511 

San Francisco, California 94103

(800) 537-9728 (415) 974-9600 

Main Website: http://www.asaging.org/ 

Lifetime Education and Renewal Network Website: http://www.asaging.org 

/learn/index.html 

An association for professionals in the aging field offering educational 

programming, publications and training. 

Americans for Better Care of the Dying 

P.O. Box 5578 

Washington, D.C. 20016 

http://www.abcd-caring.org/ 

Advocating for “public policy reforms such as improved pain management, 

better financial reimbursement systems, enhanced continuity of care, and support 

for family caregivers.” 

Assisted Living Federation of America 

11200 Waples Mill Rd, Ste. 150 

Fairfax, Virginia 22030 

(703) 691-8100 

http://www.alfa.org/ 

The site provides consumer information on assisted living, including lists of 

residences. 

Association for Death Education and Counseling

60 Revere Drive, Ste. 500 

Northbrook, Illinois 60062 

(847) 509-0403 

http://www.adec.org 

Center for Advanced Illness Coordinated Care

113 Holland Avenue, 11T 

Albany, New York 12208 

(518) 626-6125 

http://www.coordinatedcare.net/ 

A non-profit educational organization that provides training and consultation in 

the AICC Program, a 6-visit intervention of structured conversations and 

specialized care coordination for patients with advanced illness and their families. 

Center for Home Care Policy and Research 

Visiting Nurse Service of New York 

107 East 70th St. 

New York, New York 10021 

(212) 609-1531 

http://www.vnsny.org/research/ 
T HEMATIC BIBLIOGRAPHY │ 293

Center on an Aging Society

Health Policy Institute 

Georgetown University 

2233 Wisconsin Avenue, NW, Suite 525 

Washington, D.C. 20007 

(202) 687-9840 

http://www.aging-society.org 

Center to Advance Palliative Care

1255 Fifth Ave., Ste. C-2 

New York, New York 10029 

(212) 201-2670 

http://www.capc.org/ 

Supported by the Robert Wood Johnson Foundation and the Mount Sinai School 

of Medicine (NY), “CAPC provides health care professionals with the tools, 

training, and technical assistance necessary to start and sustain palliative care 

programs in hospitals and other health care settings.” 

Children of Aging Parents

P.O. Box 167 

Richmond, Virginia 18954 

1-800-227-7294 

http://www.caps4caregivers.org/ 

A nonprofit offering assistance to caregivers of the elderly or chronically ill by 

providing information, referrals and support on caregiving, including respite care, 

and housing. 

City of Hope Pain/Palliative Care Resource Center

1500 East Duarte Rd. 

Duarte, California 91010 

(626) 359-8111 ext. 63829 

http://www.cityofhope.org/prc 

A clearinghouse collecting and “disseminating information and resources to assist 

others in improving the quality of pain management and end of life care (such as) 

pain assessment tools, patient education materials, quality assurance materials, 

end of life resources, research instruments.” An index of documents is available 

for downloading from their website. 

Family Caregiver Alliance 

180 Montgomery St., Ste. 1100 

San Francisco, California 94104 

(800) 445-8106 

(415) 434-3388 

http://www.caregiver.org/ 

Support group for caregivers of those suffering from Alzheimer’s and other brain 

disorders. 
294 │ TAKING CARE

Fisher Center for Alzheimer's Research Foundation

One Intrepid Square 

West 46th Street & 12th Ave. 

New York, New York 10036 

1-800-ALZINFO 

http://www.alzinfo.org/ 

Funeral Consumers Alliance 

33 Patchen Rd. 

South Burlington, Vermont 05403 

1-800-765-0107

http://www.funerals.org/ 

A nonprofit organization that provides educational materials on funeral choices, 

refers individuals to appropriate societies and agencies supplying local services, 

and serves as a consumer advocate for reforms on the national, state, and local 

levels. 

Generations United

1333 H St., N.W., Ste. 500 W 

Washington, D.C. 20005 

(202) 289-3979 

http://www.gu.org 

A membership organization promoting intergenerational strategies, programs, 

and public policies. It also provides training for practitioners who work with 

grandparents caring for grandchildren. 

Gerontological Society of America

1030 15th St., N.W., Ste. 250 

Washington, D.C. 20005 

Main Telephone: (202) 842-1275 

National Academy on an Aging Society: (202) 408-3375 

Main Website: http://www.geron.org/ 

National Academy on an Aging Society Web Site: http://www.agingsociety.org/ 

Global Action on Aging

P.O. Box 20022 

New York, New York 10025 

(212) 557-3163 

http://www.globalaging.org/ 

A non-profit organization with special consultative status with the United 

Nations Economic and Social Council. It carries out research on emerging topics 

and publishes the results on its website. 

Grantmakers In Aging

7333 Paragon Rd., Ste. 220 

Dayton, Ohio 45459-4157 

(937) 435-3156 
T HEMATIC BIBLIOGRAPHY │ 295

http://www.giaging.org/ 

A professional organization for grantmakers working for older adults. 

Gray Panthers 

733 15th St., N.W., Ste. 437 

Washington, D.C. 20005 

1-800-280-5362 

(202) 737-6637 

http://www.graypanthers.org 

Think tank concerned with forced retirement, government programs, health 

insurance, and nursing home abuse. 

HelpAge International

P.O. Box 32832 

London N1 9ZN, United Kingdom 

011-44-20-7278-7778 

http://www.helpage.org/ 

Focuses on the health status and other needs of older adults in developing 

countries. 

Hospice and Palliative Nurses Association

One Penn Center West, Ste. 229 

Pittsburgh, Pennsylvania 15276 

(412) 787-9301 

http://www.hpna.org 

Hospice Association of America

228 Seventh Street, S.E. 

Washington, D.C. 20003 

(202) 546-4759 

http://www.nahc.org/haa/ 

A national organization representing more than 2,800 hospices and thousands of 

caregivers and volunteers who serve terminally ill patients and their families. Its 

website provides basic consumer information about hospice care and the hospice 

industry. 

Hospice Education Institute

3 Unity Square 

P.O. Box 98 

Machiasport, Maine 04655-0098 

1-800-331-1620 (207) 255-8800 

http://www.hospiceworld.org 

An independent, not-for-profit organization, serving members of the public and 

health care professionals with information and education about caring for the 

dying and bereaved. It provides information about good hospice and palliative 

care, information and referrals to hospices and palliative care organizations in the 

U.S., and help discussing issues related to caring for the dying and bereaved. 
296 │ TAKING CARE

Hospice Foundation of America 

1621 Connecticut Ave., N.W., Ste. 300 

Washington, D.C. 20009 

1-800-854-3402

http://www.hospicefoundation.org 

With programs for heath care professionals, and individuals “who are coping 

with issues of caregiving, hospice selection, terminal illness, and grief.” 

Institute for the Study of Aging

1414 Ave. of the Americas, Ste. 1502 

New York, New York 10019 

(212) 935-2402 

http://www.aging-institute.org/ 

ww.hospicecare.com 

Intergenerational Innovations

3200 N.E. 125th St., Ste. 1 

Seattle, Washington 98125 

(206) 525-8181 

http://www.intergenerate.org 

A nonprofit organization that develops and implements programs and activities 

connecting youth and the elderly in volunteer service to each other. 

International Longevity Center

60 E. 86th St. 

New York, New York 10028 

(212) 288-1468 

http://www.ilcusa.org/ 

International Psychogeriatric Association 

550 Frontage Rd., Ste. 3759 

Northfield, Illinois 60093 

United States 

(847) 501-3310 

http://www.ipa-online.org 

John Douglas French Alzheimer's Foundation

11620 Wilshire Blvd., Suite 270 

Los Angeles, California 90025 

(310) 445-4656 

http://www.jdfaf.org/ 

Kaiser Family Foundation

2400 Sand Hill Rd. 

Menlo Park, California 94025 

(650) 854-9400 

Main Website: http://www.kff.org/ 

State Health Facts Website: http://www.statehealthfacts.kff.org/ 
T HEMATIC BIBLIOGRAPHY │ 297

Conducts policy research on health and health policy issues. The website also 

provides resources on the health benefits available in each state. 

Kennedy Institute of Ethics at Georgetown University

Georgetown University 

Washington, D.C. 20057 

(202) 687-8099 

http://kennedyinstitute.georgetown.edu/ 

Little Brothers-Friends of the Elderly

954 W. Washington Blvd., 5th Fl. 

Chicago, Illinois 60607-2224 

(312) 829-3055 

http://www.littlebrothers.org 

A national, non-profit, volunteer-based organization “committed to relieving 

isolation and loneliness among the elderly.” 

Meals On Wheels Association of America

203 S. Union St. 

Alexandria, Virginia 22314 

(703) 548-5558 

http://www.mealsonwheels.org/ 

Includes a list of local chapters of the volunteer program that provides meals to 

the homebound. 

Medicare Rights Center

1460 Broadway, 17th Floor 

New York, New York 10036 

(212) 869-3850 

http://www.medicarerights.org 

An independent source of health care information and assistance for people with 

Medicare, “MRC provides telephone hotline services, teaches people with 

Medicare and those who counsel them, and brings the consumer voice to the 

national policy debate.” 

Michigan Center on the Demography of Aging

P.O. Box 1248 

Ann Arbor Michigan 48106-1248 

(734) 647-5000 

http://www.icpsr.umich.edu/NACDA/ 

Hosts the National Archive of Computerized Data on Aging. 

National Academy of Elder Law Attorneys, Inc.

1604 North Country Club Rd. 

Tucson, Arizona 85716 

(520) 881-4005 

http://www.naela.org/ 

Provides a database of elder law attorneys practicing in the U.S. 
298 │ TAKING CARE

National Alliance for Caregiving

4720 Montgomery Lane, 5th Floor 

Bethesda, Maryland 20814 

(301) 718-8444 

http://www.cargiving.org 

A non-profit coalition of national organizations working on family caregiving 

issues. 

National Asian Pacific Center on Aging

1511 Third Ave., Ste. 914 

Seattle, Washington 98101 

(206) 624-1221 

http://www.napca.org 

National Association of Area Agencies on Aging

1730 Rhode Island Ave, N.W., Ste. 1200 

Washington, D.C. 20036 

(202) 872-0888 

http://www.n4a.org 

National Association of Professional Geriatric Care Managers

1604 N. Country Club Rd. 

Tucson, Arizona 85716 

(520) 881-8008 

http://www.caremanager.org/ 

A non-profit association of professional practitioners “working towards the 

highest quality of care for the elderly and their families.” They provide a 

pamphlet detailing what to look for when hiring a care manager. 

National Caucus and Center on Black Aged

1220 L St., N.W., Ste. 800 

Washington, D.C. 20005 

(202) 637-8400 

http://www.ncba-aged.org 

National Center on Women & Aging 

The Heller School for Social Policy and Management 

Brandeis University 

Waltham, MA 02454-9110 

1-800-929-1995 (781) 736-3866 

http://heller.brandeis.edu/national/ 

National Chronic Pain Outreach Association 

P.O. Box 274 

Millboro, Virginia 24460 

(540) 862-9437 

http://www.chronicpain.org/ 
T HEMATIC BIBLIOGRAPHY │ 299

A non-profit organization seeking “to lessen the suffering of people with chronic 

pain by educating pain sufferers, health care professionals, and the public about 

chronic pain and its management through written materials and support groups.” 

National Council on the Aging

300 D St., S.W., Ste. 801 

Washington, D.C. 20024 

(202) 479-1200 

Main Site: http://www.ncoa.org 

BenefitsCheckUp Site: http://www.benefitscheckup.org

A national network of organizations including senior centers, adult day service 

centers, local agencies on aging, faith congregations, senior housing facilities, 

employment services, and other consumer organizations that hosts a website 

detailing government benefit programs.

National Family Caregivers Association

10400 Connecticut Ave., Ste. 500 

Kensington, Maryland 20895-3944 

1-800-896-3650 (301) 942-6430 

http://www.thefamilycaregiver.org/ 

National Gerontological Nursing Association 

7794 Grow Dr. 

Pensacola, Florida 32514 

1-800-723-0560 

(850) 473-1174 

http://www.ngna.org/

National Hispanic Council on Aging

1341 Connecticut Ave., 4th Fl. 

Washington, D.C. 20036 

(202) 429-0787 

http://www.nhcoa.org 

National Hospice & Palliative Care Organization 

1700 Diagonal Rd., Ste. 625 

Alexandria, Virginia 22314 

1-800-658-8898 

(703) 837-1500 

Main Web Site: http://www.nhpco.org/ 

Caring Connections Website: http://www.caringinfo.org/ 

Includes resources on advance directives, grief loss, caregiving, financial issues, 

hospice and palliative care. The site provides free, state-specific advance directive 

documents and instructions. 
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National Indian Council on Aging

10501 Montgomery Blvd., N.E., Ste. 210 

Albuquerque, New Mexico 87111-3846 

(505) 292-2001 

http://www.nicoa.org

National Network of Estate Planning Attorneys

10831 Old Mill Rd., Ste. 400 

Omaha, Nebraska 68154 

1-800-638-8681 

http://the.nnepa.com/public/ 

National Pain Education Council 

1010 Washington Blvd., 7th Fl. 

Stamford, Connecticut 06901 

(888) 536-7545 

http://www.npecweb.org/ 

National Pain Foundation

300 E. Hampden Ave., Ste. 100 

Englewood, Colorado 80113 

http://www.NationalPainFoundation.org 

National Policy & Resource Center on Nutrition & Aging

Florida International University, OE 200 

Miami, Florida 33199 

(305) 348-1517 

http://www.fiu.edu/~nutreldr 

National Resource Center on Native American Aging 

P.O. Box 9037 

Grand Forks, North Dakota 58202-9037 

(701) 777-3848 

http://www.med.und.nodak.edu/depts/rural/nrcnaa/index.html

National Resource Center on Supportive Housing and Home Modification

Andrus Gerontology Center, University of Southern California 

3715 McClintock Avenue 

Los Angeles, California 90089 

(213) 740-1364 

http://www.homemods.org/

National Self-Help Clearinghouse

Graduate School and University Center of the City University of New York 

365 5th Ave., Ste. 3300 

New York, New York 10016 

(212) 817-1822 

http://www.selfhelpweb.org/ 
T HEMATIC BIBLIOGRAPHY │ 301

A not-for-profit organization providing support for self-help groups and referral 

services for individuals.

National Senior Citizens Law Center

1101 14th St., N.W., Ste. 400 

Washington, D.C. 20005 

(202) 289-6976 

http://www.nsclc.org 

Older Women’s League

1750 New York Ave., N.W., Ste. 350 

Washington, D.C. 20006 

1-800-825-3695 

(202) 783-6686 

http://www.owl-national.org 

Palliative Care Policy Center 

RAND Health 

1200 South Hayes St., Ste. 6402 

Arlington, Virginia 22202-5050 

(703) 413-1100 ext. 5457 

http://www.medicaring.org/ 

Providing support to “hospitals, nursing homes, health systems, hospices, and 

other organizations that serve individuals nearing the end of life,” in part by 

providing a database of information designed to “help improve the experience of 

dying patients and their families.” 

POLST

“Physician Orders for Life-Sustaining Treatment” 

Center for Ethics in Health Care 

Oregon Health & Science University 

3181 S.W. Sam Jackson Park Rd. 

Mailcode: UHN-86 

Portland, Oregon 97239-3098 

Phone: (503) 494-3965 

http://www.polst.org 

See Chapter 2 of our report for more information on this document, designed to 

help health care professionals honor the end-of-life treatment desires of patients.

Rainbow Bridge

P.O. Box 12675 

Denver, Colorado 80212-0675 

(303) 623-1176 

http://www.rainbowb.org/ 

Rainbow Bridge is a non-profit dedicated to improving the lives of elders in 

nursing homes through intergenerational relationships with children. Over 13,000 

children have participated since 1994. 
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Retirement and Intergenerational Studies Laboratory

The Strom Thurmond Institute of Government & Public Affairs 

Clemson University 

Silas Pearman Boulevard 

Clemson, South Carolina 29634 

(864) 656-4700 

http://www.strom.clemson.edu/teams/risl/index.html 

The Retirement and Intergenerational Studies Laboratory provides resources and 

assistance to community organization seeking to add intergenerational programs 

to their activities. 

Rural Assistance Center

P.O. Box 9037 

Grand Forks, North Dakota 58202 

1-800-270-1898 

http://www.raconline.org 

RAC helps rural communities and other rural stakeholders access the full range of 

available programs, funding, and research that can enable them to provide quality 

health and human services to rural residents. It offers customized assistance, 

searchable databases, and research publications. 

SeniorNet

1171 Homestead Rd., Ste. 280 

Santa Clara, California 95050 

(408) 615-0699 

http://www.seniornet.org 

A non-profit providing older adults education for and access to computer 

technologies. The organization supports over 240 Learning Centers throughout 

the U.S., publishes a quarterly newsletter and a variety of instructional materials, 

offers discounts on computer-related and other products and services, holds 

regional conferences, and operates numerous online discussion boards. 

Share the Care

P.O. Box 957 

Murray Hill Station 

New York, New York 10156 

http://www.sharethecare.org 

A non-profit organization dedicated to educating the public, health professionals 

and clergy about group caregiving as an option for meeting the needs of the 

seriously ill or dying, those in rehabilitiation, the elderly in need of assistance and 

their caregivers. Provides a blueprint for how to take a group of friends, relatives, 

neighbors, coworkers, and acquaintances and turn them into a “caregiver family.” 

Temple University Center for Intergenerational Learning

1601 North Broad St., Room 206 

Philadelphia, Pennsylvania 19122 

(215) 204-6970

http://www.temple.edu/cil/ 

A national resource for intergenerational educational programming. 
T HEMATIC BIBLIOGRAPHY │ 303

University of California-Irvine Institute for Brain Aging and Dementia 

23461 El Toro Rd., Ste. 150 

Laguna Woods, California 92653 

(949) 768-3635 

http://www.alz.uci.edu/ 

University of North Texas Media Library 

Film and Video Collection on Aging

P.O. Box 305190 

Denton, Texas 76203

(940) 565-2484 

http://www.library.unt.edu/media/fvca.htm 

Their collection is home to over 700 audio-visual titles concerned with different 

aspects of aging and long-term care available for rent by educational institutions. 

U.S. Living Will Registry 

523 Westfield Ave., P.O. Box 2789 

Westfield, New Jersey 07091-2789 

1-800-LIV-WILL

http://www.uslivingwillregistry.com/ 

A privately held organization that electronically stores advance directives, organ 

donor information and emergency contact information, and makes them available 

to health care providers across the country 24 hours a day through an automated 

system. Registration is free when through a member health care provider or 

community partner. 

Volunteer Services of America

1660 Duke St. 

Alexandria, Virginia 22314 

(800) 899-0089 

(703) 341-5000 

http://www.voa.org 

Volunteers of America is a national, nonprofit, spiritually based organization 

providing local human service programs and opportunities for individual and 

community involvement. It provides educational information and assisted living 

resources. 

Well Spouse Association

63 West Main St., Ste. H 

Freehold, New Jersey 07728 

1-800-838-0879 

http://www.wellspouse.org/ 

Women’s Institute for a Secure Retirement

1725 K St., N.W., Ste. 201 

Washington, D.C. 20006 

(202) 393-5452 
304 │ TAKING CARE

http://www.wiser.heinz.org/ 

WISER is a non-profit organization that provides women with the skills and 

information they need to improve their economic circumstances and plan for a 

financially sound retirement. It operates through workshops, seminars, 

newsletters, reports, fact sheets, consumer guides and its website. 

World Health Network

American Academy of Anti-Aging Medicine

1510 W. Montana St. 

Chicago, Illinois 60614 

(773) 528-1000 

http://www.worldhealth.net/ 

A non-profit organization with a membership of 11,500 physicians and scientists 

from 65 countries dedicated to the advancement of therapeutics related to the 

science of longevity medicine. A4M educates physicians, scientists, and members 

of the public on anti-aging issues. 

Web-Based Resources 

Ageing and Life Course Programme (World Health Organization)

http://www.who.int/hpr/ageing/index.htm 

The WHO Ageing and Life Course website highlights global issues in aging, 

including elder abuse, health care access and quality, and age-friendly standards. 

AgeVenture News Service

http://www.demko.com/ 

AgeVenture seeks to communicate scientific advances in aging research by 

reporting peer-reviewed findings, researching retirement lifestyle trends, and 

publishing self-help resources.

Alzheimer Research Forum

http://www.alzforum.org/ 

The Alzheimer Research Forum was founded in 1996 to create an online 

scientific community dedicated to developing treatments and preventions for 

Alzheimer's disease. Access to the web site is free and available to the public. 

Alzheimer’s Solutions

http://www.caregiving-solutions.com/ 

Hosted by the son of an Alzheimer’s patient, this site provides general 

information about the disease. 

American Self-Help Group Clearinghouse

http://www.mentalhelp.net/selfhelp/selfhelp.php?id=858 

The Self-Help Sourcebook Online is a searchable database that includes information 

on over 1,000 national, international and demonstrational model self-help 

support groups, ideas for starting groups, and opportunities to link with others to 

develop new national or international self-help groups. 
T HEMATIC BIBLIOGRAPHY │ 305

Beyond Indigo

http://www.beyondindigo.com/ 

Beyond Indigo provides grief support services and related information. 

Beyond the Veil

http://www.beyondtheveil.net 

Provides resources on dying, caregiving, spirituality, funerals, advance directives, 

and organ donation. 

CareGuide@Home

http://www.eldercare.com/ 

Run by a care management company offering products and services for sale, the 

website also provides free information on caregiving and aging. 

Death and Dying

http://www.online96.com/seniors/dying.html 

Provides links to resources on aging, death, dying, hospice, funerals, grief, and 

more. 

Dying Well

http://www.dyingwell.org/ 

Dr. Ira Byock, long-time palliative care physician and advocate for improved endof-life care, and a past president of the American Academy of Hospice and 

Palliative Medicine, provides written resources and referrals to organizations, web 

sites and books to “empower persons with life threatening illness and their 

families to live fully”. 

ElderCare Online

http://www.ec-online.net/ 

ElderCare Online provides knowledge, tools and community to help caregivers 

improve the quality of life for both themselves and their aging loved ones. 

ElderNet

http://www.eldernet.com 

A seniors’ guide to health, housing, legal, financial, retirement, lifestyles, news and 

entertainment information on the web. 

End of Life/ Palliative Education Resource Center

http://www.eperc.mcw.edu/index.htm 

EPERC shares educational resource material among health professional 

educators involved in palliative care education. 

Ethical Wills

http://www.ethicalwill.com/ 

Dr. Barry K. Baines, a family physician and medical director of a home-based 

hospice program in Minnesota, hosts this site, which provides resources to help 

people “write and preserve their legacy of values at any stage of life.” 
306 │ TAKING CARE

Ethnic Elders Care

http://www.ethnicelderscare.net/ 

Ethnic Elders Care seeks “to increase public awareness of dementia among 

ethnic elders and to optimize the quality of life of family caregivers and ethnic 

elders with Alzheimer’s disease and related disorders.” 

Finding Our Way: Living with Dying in America

http://www.findingourway.net 

Archives for a 15-week articles series that ran in 160 newspapers in 2001. 

Friendly4Seniors

http://www.friendly4seniors.com 

With a database of over 2,000 senior-related listings. 

Geriatric Web

http://geriatricweb.sc.edu/ 

GeriatricWeb is a web-based geriatric digital library intended to be used in the 

education of health care professionals and in the clinical care of the older patient. 

GeroNurse Online

http://www.geronurseonline.org/ 

GeroNurseOnline is a comprehensive website providing current best practice 

information on care of older adults. It is hosted by the American Nurses 

Association. 

GriefNet, Inc.

http://www.griefnet.org/ 

An internet community of persons dealing with grief, death, and major loss, the 

site hosts numerous email support groups and two web sites offering “an 

integrated approach to on-line grief support.” 

GrowthHouse.org

http://www.growthhouse.org 

Growth House, Inc., provides links to resources for life-threatening illness and 

end-of-life care. Includes a search engine that gives access to a comprehensive 

collection of reviewed resources for end-of-life care. 

HealthFinder

http://www.healthfinder.gov 

A guide to government agencies, publications, databases, non-profit 

organizations, and support groups compiled by the U.S. Department of Health 

and Human Services. 

Health and Age

http://www.healthandage.com/ 

Written and edited by medical professionals this site presents health information 

that “empowers people of all ages to identify, understand, prevent, treat, and 

communicate effectively with their health professionals” about their medical 
T HEMATIC BIBLIOGRAPHY │ 307

conditions. It is funded by Health Education Foundation (WHEF), an 

independent, non-profit organization. 

Health and Retirement Study

http://hrsonline.isr.umich.edu/ 

The University of Michigan Health and Retirement Study (HRS) surveys more 

than 22,000 Americans over the age of 50 every two years. Supported by the 

National Institute on Aging, the study paints an emerging portrait of an aging 

America's physical and mental health, insurance coverage, financial status, family 

support systems, labor market status, and retirement planning. HRS data 

products are available without cost to researchers and analysts. 

Hospice Net

http://www.hospicenet.org 

Hospice Net is an independent, nonprofit organization that publishes 

information on dealing with life-threatening illnesses for patients and caregivers. 

Topics include bereavement, pain management, hospice care, talking to children, 

and caregiving. The site also includes tips on finding and choosing a hospice. (See 

also, http://www.hospiceweb.com.) 

Infoaging.org

http://www.infoaging.org 

Launched by the American Federation for Aging Research and supported by a 

grant from Pfizer Inc., the site contains the latest research-based information on a 

wide range of age-related diseases, conditions, issues, features, and news. 

Intergenerational Initiative

http://www.siu.edu/offices/iii/ 

Hosted by Southern Illinois University, this website hosts several publications 

and a retiree volunteer program. 

MealCall.org

http://www.mealcall.org/ 

MealCall helps seniors and family members connect with local Meals-on-Wheels

and other similar programs. MealCall also helps find volunteers for Meals-onWheels delivery. 

MedWeb

http://www.medweb.emory.edu/medweb/ 

Maintained by the staff of the Robert W. Woodruff Health Sciences Center 

Library of Emory University, MedWeb is a catalog of biomedical and health 

related web sites with a primarily for the academic and research community. 

Merck Manual of Geriatrics

http://www.merck.com/mrkshared/mmg/home.jsp 

An online, interdisciplinary manual regarding geriatric care for clinicians and 

residents. 
308 │ TAKING CARE

MyZiva.net (Nursing Home Guide)

http://www.myziva.net/ 

MyZiva.Net is an independent, free nursing home resource for prospective 

residents, caregivers and healthcare professionals that helps with finding and 

comparing nursing homes. 

National Public Radio: The End of Life

http://www.npr.org/programs/death/ 

Includes transcripts of roundtable discussions and conferences, readings, and a 

bibliography. 

Nolo.com Encyclopedia: Health Care & Elder Care

http://www.nolo.com/encyclopedia/ret_ency.html 

Includes articles on health and financial issues such as Medicare, long-term care, 

and estate planning. 

On Our Own Terms: Moyers on Dying

http://www.pbs.org/wnet/onourownterms/ 

This website, based on a PBS special, includes resources on care, and links to 

final days sites, and therapy sites. 

Our Senior Years

http://www.oursenioryears.com 

Pain.com

http://www.pain.com/ 

Sponsored by a private foundation, this site is an educational resource on pain 

and pain management for health care professionals and consumers. 

Painlaw.org

http://www.painlaw.org/ 

A public resource of general information on the legal aspects of pain 

management and end-of-life care hosted by the Bazelon Center for Mental 

Health Law, a national legal advocacy group for people with mental disabilities. 

Palliative Drugs

http://www.palliativedrugs.org/ 

This site provides independent information for health professionals about the use 

of drugs in palliative care. 

Secrets of Aging

http://www.secretsofaging.org/ 

Produced by the Boston Museum of Science, this website provides public access 

to the latest scientific research on aging. 
T HEMATIC BIBLIOGRAPHY │ 309

SeniorJournal.com

http://www.seniorjournal.com 

This site provides daily news and information for baby boomers. 

Senior Corner

http://seniors.tcnet.org/ 

Includes articles on health, caregiving, and senior needs and local and national 

resources for seniors. 

Senior Women Web

http://www.seniorwomen.com/ 

This website attempts to address women’s interests and concerns, especially the 

issues of community and connectivity. 

WebMD

Main Website: http://my.webmd.com/ 

RxList Website: http://www.rxlist.com/ 

Provides generalized health information. 

WidowNet

http://www.widownet.org/ 

Hosted by a widower, this site provides online resources and discussion 

opportunities. 

WiredSeniors.com

http://www.wiredseniors.com 

Includes SeniorsSearch.com, a search engine geared to individuals over 50.