Voluntary active euthanasia: the next frontier?

• Author: Johnson, Mary

I am not a legal expert on voluntary active euthanasia; I approach the subject as a journalist. I have watched the media report stories about individuals with severe disabilities who come into the public eye because of a wish that their lives be ended, and have talked to people with disabilities who are angry about these issues--and sometimes angry with each other. I've published their thoughts about assisted suidde in the pages of The Disability Rag, a periodical published for the disability community. I have seen some authors who have disabilities gain a wider audience, e.g., Dr. Paul Longmore, Bill Bolte, and Dianne Piastro. This article will focus on and confine itself to the cases of mentally alert people with physical disabilities who have sought court or other help in ending their lives, giving examples of how the courts and the media have shaped the public's understanding of what is happening, and, perhaps more important, have identified what the public wants to believe about such cases.

If I believed that such mentally alert, physically disabled people truly wanted to end their lives for reasons similar to those given by nondisabled people who seek an end to life, this article would take a different perspective. But I believe that, in a significant number of cases, such mentally alert, physically disabled people are being subtly or not so subtly pressured, by doctors, family, media, and societal mores in general, to end their lives. It is this pressure that distinguishes the particular form of euthanasia that I will discuss.

None of these cases has been referred to in the media as voluntary active euthansia but are usually referred to as treatment refusal or assisted suicide. Typically, court rulings are at pains to point out that they are not suicides; they are typically classified as "termination of treatment." However, this seems a gloss at best, certainly a distinction without merit. Such safe terms seem to be selected to assuage a guilt that society wishes not to confront.

It appears that people with disabilities are viewed in this society as an expendable group--perhaps the only remaining expendable group-- a group that we can verbally suggest ways of expending without incurring much opprobrium. In an era of tight resources, it seems, such encouragement of expendable people to seek an end to lives of "unbearable pain" may be considered acceptable social policy, viewed in the light of beneficient "euthanasia."

The "right to die" is not something I question in this article, as I believe that is a fight which must remain available to the individual in a free society. The question is not one of right but of equality. It seems all too likely that the high moral ground of "right to die" has been appropriated as a cover for what appears to be occurring with an increasing number of mentally alert, but physically disabled, people. It is not the protection of a freely chosen right but the encouragement, perhaps by coercion, to exercise that "right" as the only option and the denial of life-sustaining options such as technology, medical treatment, pain relief, personal assistance, and access. Almost no mentally alert, physically disabled person who seeks assistance in dying receives the routine suicide prevention counseling made available to nondisabled people who seek help to terminate their lives. It is this consistent lack of assistance in exploring options other than choosing death that strongly suggests that death is the only option approved by society in more and more cases. This constitutes approval of voluntary active euthanasia for persons who are mentally alert, but physically disabled.

Voluntary Active Euthansia of Mentally Alert,

Physically Disabled People

In the Press

Physically disabled but mentally alert people who seek court permission to end their lives have in the last decade provided fodder for high drama in the press. Reporters covering the cases of David Rivlin in Detroit, Larry McAfee in Georgia, and Kenneth Bergstedt in Las Vegas have followed the lead of reporters who wrote about Elizabeth Bouvia in the early 1980s, providing readers with stories that mix pity, sympathy, and hyperbole in a combination seemingly designed to jerk tears from readers rather than shed light on this extremely complicated situation, which almost always appears to be the result not of disability so much as factors such as lack of services to provide a meaningful quality of life.

People magazine reporters Margot Dougherty and Sandra Rubin Tessler wrote of David Rivlin: "Nothing could tune out the sound that symbolized his ultimate imprisonment: the incessant whir of a respirator" and referred to him as someone "from whom true life had been taken."

There was similar media reaction to the case of Elizabeth Bouvia in 1983. Harlan Hahn told The Disability Rag, regarding Bouvia: "When you try to talk to a nondisabled reporter and explain what's really going on in this case, it becomes clear that most of them don't begin to understand what you're trying to say."

Of Kenneth Bergstedt, Las Vegas Sun reporter Jeff German wrote: "Though it's hard to conceive of someone wanting to give up on life, I sense the Bergstedts are making the right choice .... And frankly, we can't possibly understand the pain and sorrow the Bergstedts are going through."

Ethicists, columnists, editorial writers, and news analysts have had much to say about such things as withdrawing food and hydration from comatose people, as occasioned by the Cruzan case. They have written repeatedly about termination of life for older people kept alive on respirators. And there has been much written promoting the use of living wills to refuse life-sustaining medical treatment and care.

However, I have not yet found a single national columnist, analyst, ethicist, or editorial writer venturing commentary on the cases of mentally alert, physically disabled people seeking court permission for assistance in ending their lives. What little commentary has been published has been conducted by members of the disability community. Paul Longmore, Bill Bolte, Dianne Piastro--all have had op-ed articles published on the subject.

Bolte has written that "an assumption... often held by people who have never had a severe disability... is that people by nature would rather die than have a life-altering disability, and that anyone who helps us die is therefore a hero rather than a criminal."

No responses to these op-ed articles written by the disability community have appeared. There are no responding letters to the editor, no commentary by columnists such as Ellen Goodman, Cal Thomas, Charles Krauthammer (himself disabled). It is as though the issue of severely physically disabled but mentally alert individuals seeking suicide exists simply in a vacuum.

In light of the extensive commentary by such columnists over cases such as Cruzan and Busalacchi, the lack of commentary about voluntary active euthanasia of mentally alert, physically disabled individuals must, it seems, have some significance: we do not want to discuss it as a nation.

In the Courts

Georgia Superior Court Judge Edward H. Johnson, who ruled that the state could not stop Larry McAfee from using a device he had created to commit suicide, said, "I think Larry [McAfee] loves life as much as any human being who's ever lived, and that's why he's seeking the relief he's seeking .... Mr. McAfee is not committing suicide, nor is he attempting to commit suicide." To keep McAfee on a ventilator "would not prolong his life but instead would prolong his death."

In the Kenneth Bergstedt case, District Judge Donald Mosley, in ruling that Bergstedt would not be commiting suicide, told the court that Bergstedt "suffers from physical and emotional pain because of his quadriplegia... [and] enjoys no pleasures from life, and has not enjoyed such pleasures from life for many years."

These comments refer to cases of individuals who are nonelderly, severely disabled, but mentally alert. Therefore, they must be distinguished from older individuals or individuals who are incompetent. This is the public landscape of cases of voluntary active euthansia.

Before attempting to predict the future course of voluntary active euthansia, it is necessary to outline what I see as the critical issues that come into play when the desire for suicide arises.

The Desire for Suicide: Critical...