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
