Leon Kass has stepped down as chairman of the President’s Council on Bioethics. On one level, I am happy for Kass. For four years he has broiled in the pressure cooker of Washington politics, subjected to vituperation and vicious calumny from the bioethics and science establishments for his heterodox (to them) defense of the intrinsic dignity and importance of human life. For Kass, who will remain a member of the council under the leadership of the bioethicist Edmund Pellegrino, it will no doubt be a relief to step out of the klieg lights of public controversy to focus on his scholarship and family.
But for the country, it is a loss. Under Kass’s visionary leadership, the President’s Council has produced a series of extraordinary and brilliant studies that have deliberately and soberly analyzed some of the most important and perplexing moral issues of our time, including human cloning, stem cell research, genetic engineering, performance-enhancing drugs, and reproductive technologies. And now, in the final report to be published under Kass’s chairmanship, the council has just issued Taking Care: Ethical Caregiving in Our Aging Society.
Of all of the council’s reports, Taking Care is the most relevant to the immediate concerns of millions of Americans. Taking Care confronts head-on the ethical dilemmas that arise when caring for dependent elderly people whose cognition has collapsed under the assault of Alzheimer’s disease and other disabling brain afflictions.
It is not a pleasant topic, but it is a necessary one. As the report notes, America is a fast-aging society. There are already 4.9 million of us who are 85 or older. By 2030, there will be 9.6 million. Between 2000 and 2050, the population of people aged 65-74 will nearly double to 35 million, and those between the ages of 75 and 84 will increase from 12 million to 26 million. This means that in 2050, more than 60 million Americans will be senior citizens—a population equivalent to France today.
For some, this will work out just fine. As the report notes, many of our elderly are actually “young old”—that is, they are younger and healthier at their age than were members of any previous generation—a trend likely to continue. At the same time, our extended life expectancies—about a third of us already live to age 85—will likely result in vastly increasing numbers of demented and dependent people who will need to be cared for.
This elder explosion will lead to a “caregiving crisis,” predicts the council, which raises urgent and pressing questions: Who will care for the millions of people who can’t care for themselves? How will we care for them? What ethical standards should govern the many difficult caregiving and medical decisions that will have to be made? Taking Care analyzes these and related issues in a manner that is meticulous, logically structured, elegantly written, nuanced, sensitive, and morally sincere.
Taking Care serves as a powerful apologia for the “ethic of equality,” arguing persuasively in favor of the equal worth of each human being regardless of health, ability, or cognitive capacity. This is important since many in bioethics seek to push our medical system into a more utilitarian direction and dehumanize people who have lost mental capacities as “nonpersons,” of less value and moral worth than the rest of us. Such dehumanization could lead easily to euthanasia for the demented. Hence, the council argues that decisions made on behalf of those who cannot decide for themselves be based on what is best for them, not on what might be desired by the caregiver or be perceived as better for society. “Ethical medicine serves health and life,” the report states. “It does not judge life’s quality—and certainly not as a criterion for treatment eligibility.”
This is not vitalism. The council does not urge that every person be hooked up to every possible medical machine to keep the body breathing for as long as possible. To the contrary: The report explicitly acknowledges that there are times when withholding or withdrawing life-sustaining treatment is the most loving and moral course. But such decisions should not be taken to ease burdens on caregivers, relieve the trauma of watching a beloved suffer, or somehow spare society the cost of caring for an unproductive member.
Toward these ends, Taking Care sets forth moral boundaries to guide the decision-making of caregivers, such as “no active killing or assisted killing of another, no matter how painful or diminished a life has become.” Caregivers should not aim “at death as a purpose of action, whether by acts of commission or omission.” At the same time, there should be “no imposing excessively burdensome treatments on others” and “no obligation to do what we cannot do in the role of caregiver, but the obligation to see how much we can do without destroying or deforming everything else in our lives.”
Needless to say, some areas of discussion will cause controversy. Euthanasia activists will not be pleased to see mercy killing characterized—accurately in my view—as abandonment. Perhaps even more likely to raise a ruckus is the council’s pronounced skepticism of the value of advance directives when decisions must be made about whether to accept or refuse treatment on behalf of an incapacitated patient. Rather than creating a detailed living will, which the council believes can never be fully “informed,” the report suggests that we instead appoint a trusted loved one or friend to be our health care proxy. Our surrogate’s ethical duty would then be to make decisions based “on providing the best care possible” for us rather than adhering strictly to our pre-stated wishes.
I was a little disappointed that Taking Care did not directly address specific bioethical controversies that are relevant to the proper care of aged and demented patients, issues that are even now boiling over into heated dispute in the public square. For example, should the decision to remove artificial nutrition and hydration be treated in law and medical ethics differently from decisions about removing other kinds of care, given the symbolism of nourishment and the fact that such a decision can only have one outcome? Does Futile Care Theory, in which hospital protocols grant doctors or hospital bioethics committees the power to refuse wanted life-sustaining treatment, violate the ethic of equality? How are we going to finance Medicare and Medicaid in the face of the coming elder boom?
The report doesn’t pretend to answer these and other urgent questions. Rather, its ambitions are more limited, and perhaps more valuable—to get people thinking and talking about these issues before the time of crisis comes. And it points us in valuable directions: By placing such great emphasis on the essential human worthiness of demented patients, the council tips the benefit of the doubt in caregiving firmly in favor of life over death—but in a way that clears the way for caregivers to cease resisting natural death of their wards when the time is right. There is also a valuable chapter devoted to analyzing “hard cases” that seeks to help caregivers learn how to pick their way through the often excruciating difficulties of making proper care decisions for demented patients.
Taking Care is an important, and provocative, ethical document that belongs in every university and medical school bioethics curriculum. More important, it offers a starting point for a badly needed national conversation about a difficult topic that is too often avoided. Leon Kass and the President’s Council on Bioethics deserve high praise for another job well done.
Wesley J. Smith is a senior fellow at the Discovery Institute and an attorney and consultant for the International Task Force on Euthanasia and Assisted Suicide.