The President's Council on Autonomy: Never Mind!

In the aftermath of the media frenzy surrounding the sad death of Terri Schiavo, many Americans took a step they had put off for years. They appointed a health care proxy and signed an advance directive outlining their wishes should they be unable to express them because of illness or accident. Some even had "the discussion," telling their proxy, other intimates, and perhaps their physician their values and preferences about decisions at the end of life.

Now the President's Council on Bioethics has issued a report that in effect channels the late Gilda Radner playing ditsy Emily Litella on Saturday Night Live. When confronted with her silly misinterpretation of events or words, Emily just smiled and said: "Never mind!"

Although its title, Taking Care: Ethical Caregiving in Our Aging Society, suggests a broader analysis, the Council's report is at heart a sustained critique of individual autonomy as a guiding principle and its expression through advance directives when a person has Alzheimer disease or dementia. It also takes direct aim at assisted suicide and euthanasia, a baffling diversion since to my knowledge no one, least of all family members, proposes such actions for incompetent elders. Even in Oregon, where assisted suicide is legal, it is available only to competent individuals. The relatively few who have taken this option have had terminal cancer, not dementia.

The President's Council may be the last group in this country to discover the news that has been a staple of academic and popular media for years: people are living longer, and there are fewer family members to care for them. Reading this report, one might conclude that in an aging society, everyone is going to wind up with Alzheimer disease. In fact, cardiovascular disease, diabetes, cancer, and arthritis are far more prevalent among older people and are more physically disabling and often more pernicious in terms of quality of life. But it is the particular power of dementia—the loss of memory, identity, and relationships—that casts the longest shadow and dominates end of life discussions. Those who suffer from dementia are indeed profoundly dependent, as the Council report stresses, but so are others with debilitating diseases, though in different ways. And people with Alzheimer disease are not immune from the other diseases of old age and may suffer from a number of chronic conditions.

The people who actually provide care for those with advanced dementia—overwhelmingly family members—often find creative ways to communicate with their relatives, protect them from harm, and preserve their dignity. They do not need reminders about the humanity of their relatives and their need for ever-present and present-oriented care. The report states that "Many doctors and nurses find great reward in caring for these patients" (p. 38), but also that doctors may be "impatient" and nurses "overworked" (p. 202); it does not acknowledge that if one is looking for settings where people with dementia are routinely considered "nonpersons," one need look no further than the nearest hospital.

Almost every family member asked about his or her experience in an emergency room or during a hospital stay will tell you horror stories of insensitive, disrespectful care. To be sure, a patient with Alzheimer disease is a challenge to health care providers, who do not know what to do about dementia and often do not even recognize its signs. Following standard medical practice, they banish to the waiting room the very people—family members—who might be able to interpret and explain the patient's apparently meaningless words and odd behavior. The demented patient may leave the hospital with her pneumonia cured but more confused and disoriented than before. Even fully competent individuals can feel disoriented in a hospital; imagine how much more frightening it is for those whose ability to comprehend what is happening to them is diminished.

The report rightly acknowledges the challenges facing family members and calls for more public support, though it does not examine the voluminous literature on dementia and long-term care and does not offer any specifics about policy changes. The report, issued in September 2005...