Recognizing Death While Affirming Life: Can End of Life Reform Uphold a Disabled Person's Interest in Continued Life?

• Author: Asch, Adrienne
• Position: Abstracts

HASTINGS CENTER REP., Nov./Dec. 2005, Special Report at 531.

For people living with disabilities, the data on Oregon's assisted suicides provoke concerns. One can respect individual choice but worry that the Oregon data, like the case involving ventilator withdrawal, graphically support Burt's reflections on the ambivalence of health care professionals and families toward people with significant disability When these data reveal that fear of burdening others is of much greater concern to patients who seek suicide than concerns about finances or physical pain, then how can professionals and families know that the supposedly autonomous wish to end life is not a response to a patient's deep fear that she has become disliked, distasteful to, and resented by the very people from whom she seeks expertise, physical help, and emotional support? And when we learn that divorced and never-married individuals are twice as likely as married or widowed people to use physician-assisted suicide, we must ponder whether a single dying person feels especially alone and abandoned. It is probably the rare friend who has the time, energy, or willingness to make a sustained, reliable, and deep commitment to live through another's illness and death. Once the severely disabled, ill, or dying person is seen as "other"--as different, not quite in the human or moral community, even past friendship and familial bonds--social bonds can diminish. To anyone with the capacity to perceive the difference between warmth, toleration, and coldness in how he or she is treated by others, the thought of days, months, or years of life subject to resentful, duty-filled physical ministrations may be a fate worse than death, akin to imprisonment and solitary confinement. What needs to change is not the patient's physical or cognitive situation, but the emotional and interpersonal environment; that environment can change only when professionals lead the way to supporting the capacities and thereby affirming the humanity of severely ill and imminently dying people.

Once we have understood the disability community's concerns about cases involving alert people with physical, but not cognitive and affective disabilities, we can better understand the reaction to the unfortunate case of Terri Schiavo. By the time her husband sought to withdraw her feeding tube, all the medical experts were certain that she had not even minimal cognitive capacity or consciousness. Schiavo's supporters in the...