TAKING CARE: ETHICAL CAREGIVING IN OUR AGING SOCIETY published by The President’s Council on Bioethics
Washington, D.C., September 2005
The President’s Council on Bioethics was created by President George W. Bush on November 28, 2001 to advise the President on bioethical issues related to advances in biomedical science and technology. Taking Care addresses the ethical challenges of caregiving in our rapidly aging society, with special attention to the care of people with dementia. The report 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.