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Exploring the Angst of the Terminally Ill

The New York Times, August 14

Exploring the Angst of the Terminally Ill

Patients considering euthanasia are worried less about unbearable pain than about the social and emotional disintegration that accompanies terminal illness, a new survey has found.

The University of Toronto researchers who conducted the study suggested that doctors could help their terminally ill patients by taking a broader view of what constitutes suffering.

The study, published this month in The Lancet, was based on lengthy interviews with 32 AIDS patients. Twenty of them said they had already decided that they would seek doctor-assisted suicide before reaching the disease’s final stages.

Dr. Peter V. Lavery, the study’s author, divided the patients’ concerns into two categories. One was their fear of physical disintegration, he said. Many had taken care of other AIDS patients in the final stages of lives, and expressed horror at both the helplessness and the loss of control that came with death’s approach. The other category was loss of community, which Dr. Lavery defined as the dwindling of opportunities for meaningful interaction with family and close friends.

Dr. Lavery argued that both of these involved patients’ fears of a loss of self, of “the dignity and wholeness of my body, as well as spirit,” as one patient put it.

One implication of the finding is that the guidelines used in places that allow doctor- assisted suicide, like Oregon or the Netherlands, may overemphasize the importance of pain or the number of months left to live, he wrote. Another is that doctors who pay attention to the social context of patients’ suffering may be able to ease their hopelessness even when nothing can be done to improve their physical condition.