Whose death is it anyway? More and more people-whether they are terminally ill, know someone who is, or are simply confronting their own mortality-are asking that question. To die in America is no longer simple. Before the 1950s, most patients died at home. Now they may spend their final days (or months or years) in a hospital or nursing home, often attached to sophisticated machinery that can extend even the most fragile life. “Doctors have always been in control, but now it’s not just doctors and patients,” Ruth Macklin, professor of bioethics at Albert Einstein College of Medicine in New York City, says. “There are hospital administrators, in-house attorneys and risk managers … These are the people who are really in control. " To circumvent that tangled bureaucracy, to avoid the crushing burden of extended illness, many people now consider the possibility of taking life-and death-into their own hands.
Bookstores can’t keep “Final Exit” in stock; almost 150,000 copies of the slim, $16.95 volume are on order. Before “right to die” entered the lexicon, before Karen Anne Quinlan, Nancy Cruzan and Dr. Jack Kevorkian became familiar names, “Final Exit” would have been unimaginable. Only 41 percent of the respondents in a 1975 Gallup poll said they believed that someone in great pain, with “no hope of improvement,” had the moral right to commit suicide. By 1990, that figure had risen to 66 percent. Derek Humphry, president of The Hemlock Society, a euthanasia organization founded in 1980, thought the time was right for a “responsible” suicide manual. Though “Final Exit” is straightforward it is not an emotionless directive. “I wanted it to say, ‘Be considerate of others, go careful with your life and other people’s feelings’,” Humphry says. A man whose ailing, elderly parents committed suicide after reading “Final Exit” wrote to Humphry: “For what it is worth, we thank you for providing accurate information and advice.”
Though “Final Exit” proposes an extreme measure for ending life, it speaks to a growing concern of most Americans. With continuing advances in medical technology, the prospect of being kept alive-perhaps insentient-by machinery is real and frightening. About 1.3 million Americans die annually in hospitals, hundreds of thousands more in nursing homes; many end their lives with a negotiated death (page 42). More and more people are asking what they can and should do now to try to ensure a dignified, humane death. There are several documents which can help, but the laws governing them are patchwork. Speak to a lawyer, a doctor and your family.
outlines what medical treatment you want–or do not want-should you no longer be able to express your wishes. Its legal limits vary; fill in one for the state in which you live.
designates an agent-a friend or family member-to act for you in health-care matters. It is often included within a living will and, like it, may have limited powers. For example, it may cover only terminal illness, which would not include a coma or Alzheimer’s disease.
a more inclusive document that permits your agent to act for you in most healthcare matters, including those you might not have considered.
Most Americans–84 percent, according to a 1990 Gallup poll-say that if they were on life-support systems and had no hope of recovering, they would want treatment withheld. Like diabetics or heart patients, they can purchase Medic Alert bracelets, but theirs are emblazoned LIVING WILL/DO NOT RESUSCITATE. “There has been an extraordinary decline in trust between physicians and patients, and patients and hospitals,” says David Rothman, author of “Strangers at the Bedside” and professor of social medicine at Manhattan’s Columbia College of Physicians and Surgeons. “People don’t believe that the hospital will do what they want.”
Under the full glare of the media, courts and medical journals are debating right-to-die decisions. Says Dr. Robert McAfee, a Portland, Maine, surgeon and vice chairman of the American Medical Association’s board of trustees, “Our social contract is to sustain life and relieve suffering. But sometimes Dr. Timothy Quill, an internist in Rochester, N.Y. Last March, in The New England Journal of Medicine, he wrote movingly of how he helped a leukemia patient stockpile barbiturates so she could take her own life: “I [had] an uneasy feeling about the boundaries I was exploring-spiritual, legal, professional and personal. Yet I also felt strongly that I was setting her free to get the most out of the time she had left, and to maintain dignity and control on her own terms. " Last month a Rochester grand jury refused to indict Quill on criminal charges, including manslaughter. Still, some worry that patients may not make informed choices about when and how to die. “I feel a great deal of discomfort about how comfortable people have become with [euthanasia],” says Carol Gill, director of psychological research at the Chicago Institute of Disability Research. “I take a very suspicious view of ‘voluntariness’ in these issues.”
We may never be able to codify the complex ethics of medical technology. There are, however, changes afoot. A new federal law Determination Act of 1990, goes into effect this December: it will require hospitals participating in Medicare or Medicaid to ask all adult inpatients if they have “advance directives” such as living wills. In Washington state, legalized euthanasia is a possibility. The November ballot will carry an initiative with an “aid in dying” provision that would allow doctors to help the mentally competent, terminally ill die. Patients could request help in writing at the time they want to die. Two witnesses would have to certify that the request is voluntary.
Most of us have some choice in how we live, certainly in how we conduct our lives. How we die is an equally personal choice-and, in the exhilarating and terrifying new world of medical technology-perhaps almost as important.
