A Missed Opportunity

The President’s Council on Bioethics Report on Ethical Caregiving

Originally published in American Journal of Bioethics

Read the full report (pdf)

The rapidly expanding population of elderly persons who require care is raising critical questions for families and for public policy. What is required of us ethically, as individuals, family units, and as a society? How can we best organize our resources to support those in need of care and those who provide it? Complicating matters of course is the fact that at the same time the numbers of those needing care is on the rise, family size is shrinking, women—the traditional givers of care for family members—have entered the paid workforce en masse, and there is mounting pressure to contain health care costs. The ostensible objective of the report, Taking Care: Ethical Caregiving in Our Aging Society, issued in September 2005 by the President’s Council on Bioethics (PCB)—then under the leadership of Leon R. Kass—is to grapple with the many pressing ethical issues presented by this state of affairs.

Yet, the PCB has construed ethical issues in caregiving for society, families, and the aged, in a quite constrictive way: “how ethical caregivers should decide and act” (204), or, “when, how, and why to intervene or not intervene with the medical art” (116) at the end of life in clinical and other health care settings, primarily for one subset of patients—those suffering from Alzheimer’s disease and other forms of dementia. Even a cursory review easily uncovers the main mission of Taking Care: to offer an indictment of assisted suicide and active euthanasia.

The report covers already well-trodden ground concerning euthanasia and assisted suicide, advance directives and proxies, and medical decision making for the formerly or never competent. It therefore fails to seize the opportunity to use its considerable resources and expertise to contribute to the discourse—and eventually the formation of more ethical public policy—on the many other issues concerning caregiving that have received scant attention from the bioethics community in the U.S. including, for example: pervasive ageism in society and in the delivery of health care; how medical practice, health care institutions, and the workplace might be transformed to allow for increased support for family caregivers; improved conditions for those, like nurse assistants, who are paid to care in institutional settings; the re-valuation of caregiving – paid and unpaid; the plight of immigrant women working as caregivers in affluent countries, and the implications for global justice of this migration. Moreover, those who have come to believe that the PCB under Kass’ leadership aimed at using this public body to advance an identifiable—indeed conservative—political agenda will find still more supporting evidence. Indeed, the overall tenor of the PCB report is that of privatizing what is arguably a matter for public policy.

We need to expand the discussion about the ethics of caregiving beyond matters concerning clinical care for individuals and the virtues to be cultivated by all concerned, and to attend to the social, economic, and institutional context surrounding those who receive and provide care, particularly women. Care of the elderly requires a transformation in public policy, including coordination of existing health and social services, improved and extended health and social services, public funding, and above all, a widespread belief that the care of the elderly and dependent is everyone’s business. Because the terms of this report are so narrowly circumscribed, the Council has gotten us off to a disappointing start in what must be an ongoing conversation.

Read the full report(pdf)

Originally published in American Journal of Bioethics

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