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Dying Cite Loss of Social Ties in Seeking Suicide

Patients tell of both community and physical loss

FRIDAY, Aug. 3, 2001 (HealthDayNews) -- A new survey finds that the dying seek euthanasia or assisted suicide because they feel that both their bodies and their social connections are wasting away.

Authors of the new report say it should help focus on what terminally ill people other than pain, which has been a main priority among doctors.

Bioethicists at the University of Toronto asked 32 people with HIV or AIDS why they wanted to have euthanasia or assisted suicide to end their lives. The answers, given in interviews that lasted as long as two hours, could help clarify the ongoing debate on the issue, says James V. Lavery, who led the study while he was at Toronto and now is a bioethicist at the Fogarty Center of the National Institutes of Health.

"The debate has been characterized by deeply entrenched, polarized views," Lavery says. "In all the research and writing, we haven't had explicit accounts from people who are deliberating these issues for themselves. So these accounts might provide a constructive middle ground for debate. They may not persuade people to change deeply held positions, but people might think whether their own personal positions really reflect the precise nature of the problem."

A report in the Aug. 4 issue of The Lancet says there were two general reasons why the 32 participants all expressed a wish for euthanasia or assisted death. One, predictably, was what Lavery calls disintegration, the "loss of integrity of self" caused by the physical effects of illness.

More surprising, the second general reason was loss of community, "a progressive diminishment of opportunities to initiate or maintain close relationships," Lavery says. Or, as the Lancet paper puts it, "a sense of existential isolation."

Here is one representative response:

"AIDS, that's probably -- seeing as I'm 41 -- that's probably what I'm going to die of. That's going to be a very painful death. It is painful. I've seen it. It's painful, it's sad, it's lonely in a way. . . It's lonely because you're gradually rotting away, your flesh is rotting."

And here is another:

"I was in a situation in a, in a clinic where a pregnant woman was standing beside me. And ah, she looked down and saw the form, and realized that she was four inches from my arm and promptly started to scream and yell. And ah, you know, and screamed at the nurse that, you know, I'll come back when that thing is out of here'..."

The study "raises questions about whether we are paying enough attention to loss of community" in the debate about assisted death, Lavery says. It could help move the debate away from one entirely about the doctor-patient relationship, he says, and "on a more practical level, it can provide a road map that can help guide physicians in thinking about their interactions with these patients."

While the Toronto study was limited to people with HIV and AIDS, it has a much broader application, Lavery says. The same issues -- loss of physical integrity and loss of community -- are too-common features of old age and the conditions that come with aging, he says.

The great value of the new study is the personal expressions of the people facing the issue, says Dr. John D. Lantos, associate director of the Maclean Center for Clinical Medical Ethics at the University of Chicago.

Earlier studies have made some of the same points, Lantos says, but "this adds long and detailed quotes from individuals about their own thoughts and feeling." In addition, he says, "It refocuses attention from just physical pain and suffering. This helps define what patients are feeling. The question is how to incorporate the findings into legislation or public policy."

The debate about assisted death tends to be dominated by "pretty small vocal minorities at both extremes," Lantos says. "There is a much larger group of people in the middle who think it may be appropriate under some circumstances. But they have trouble defining those circumstances."

In the United States, assisted death is legal only in Oregon, where it was approved in a statewide referendum. Similar initiatives have been defeated in two other states. Overseas, assisted death is practiced in the Netherlands.

What To Do

In a subject that often generates heat rather than light, careful study of the arguments for and against -- and of the plight of the people involved -- can help reach a personal decision.

"Both physicians and patients need to be prepared to talk more about these issues," says Dr. Anthony Black, an oncologist at the University f Washington and author of an accompanying editorial.

Balanced discussions of the issues are available from the New York State Department of Health and the Ontario Consultants on Religious Tolerance.

SOURCES: Interviews with James V. Lavery, Ph.D, bioethicist, Fogarty Center, National Institutes of Health, Bethesda, Md., John D. Lantos, M.D., associate director, Maclean Center for Clinical Medical Ethics, University of Chicago, and Anthony Back, M.D., oncologist, University of Washington, Seattle; Aug. 4, 2001 The Lancet
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