Preface Taking Care: Ethical Caregiving in Our Aging Society

333 Pages·2005·2.18 MB·English

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AARREE

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
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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
CONTENTS │ 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