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TAKING CARE: ETHICAL CAREGIVING
IN OUR AGING SOCIETY


Table of Contents

The President's Council on Bioethics
Washington, D.C.
September 2005
www.bioethics.gov

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 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 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: 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, 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

 


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