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TAKING CARE: ETHICAL CAREGIVING IN OUR AGING SOCIETY

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

 

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Letter of Transmittal

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 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.

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 Long-Term 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 Kass signature
Leon R. Kass, M.D.
Chairman

 

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