Not Dead Yet

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ARGUMENT

I. The Creation 0f A Right To Assisted Suicide For A Class Of Individuals Based On Health Status Or Disability Is A Lethal Form Of Discrimination Which Violates The ADA.

A. People With Disabilities, With Either Terminal Or Nonterminal Health Impairments, Are The Class Of People Affected By The Proposed Right To Assisted Suicide.

The outcome of this case potentially threatens the lives and well-being of a significant number of the 23,588,000 noninstitutionalized people in the United States who have severe disabilities.(2) They comprise 12.1 percent of the total population, 15 years old and over in the United States. The outcome will also affect the only minority group, people with disabilities, that is open to all regardless of race, gender, nationality, sexual orientation, income, place of residency, political affiliation, or any other characteristic, and the only minority group, from a statistical viewpoint, which only 9 percent of its members join at birth.

There are five primary bases for asserting that people with severe disabilities, including nonterminal disabilities, are the actual and potential victims of a right to assisted suicide:

1. Courts in numerous jurisdictions have ruled that people with severe but nonterminal disabilities may legally be denied suicide prevention that nondisabled people routinely receive, but are to be treated like terminally ill people, with respect to the withholding and withdrawal of life sustaining medical treatment. (3)

2. The diagnosis and prognosis of terminal illness is inherently uncertain, as respondents themselves admit.(4) In addition, many doctors conclude that lives of people with severe disabilities are not worth saving, solely because of their disabilities. The potential for error and abuse against people with severe disabilities is too great.

3. Over three quarters of Jack Kevorkian's assisted suicides involved people who were clearly not terminally ill under accepted medical definitions, but were only severely disabled. (5)

4. In the Netherlands, a country in which assisted suicide has been widely accepted and practiced for many years and the country often referred to as "the model" for the United States, a governmental report demonstrates that many people with nonterminal disabilities have been killed, and thousands have been killed involuntarily. (6)

5. Well-known proponents of assisted suicide have written that it should be applied to people with nonterminal disabilities. In Final Exit, Hemlock Society founder Derek Humphry writes,

What can those of us who sympathize with a justified suicide by a handicapped person do to help? When we have statutes on the books permitting lawful physician aid-in-dying for the terminally ill, I believe that along with this reform there will come a more tolerant attitude to the other exceptional cases.

Many cases in which state courts have expanded the right to refuse treatment demonstrate that prejudice, stereotypes and devaluation of people with disabilities have already had a substantial adverse impact on members of this minority group. Flagrant prejudice against people with disabilities pervades each decision.

Elizabeth Bouvia wanted medical support while starving herself to death. She had blamed herself for her parents' divorce. When she was ten her mother placed her in an institution, visiting her only twice in eight years. At eighteen, she moved to her own apartment, earned a college degree and began working on a master's degree. She had a series of emotional blows, including a miscarriage, the death of her brother, serious financial distress, withdrawal from graduate school because of discrimination, and separation from her new husband.(7) A nondisabled person with this history, who refused nutrition and requested physician assistance to commit suicide, would have been diagnosed as suicidal and provided suicide intervention and treatment. But because Ms. Bouvia also had cerebral palsy, a lifelong, nonterminal disability, it was concluded that her decision to die was reasonable and not deserving of intervention.(8) However, only following two years of lengthy court proceedings did Ms. Bouvia decide not to exercise her newly won right.

Kenneth Bergstedt had quadriplegia and used a ventilator. Throughout his 30 years of life, Mr. Bergstedt was dependent on his father, who, fearing he would soon die of lung cancer, supported his son's decision to die. A psychiatric report before a lower court declared Mr. Bergstedt to be depressed but presumed this was due to "the quality of life for this man...."(9) Mr. Bergstedt believed that he would be forced to live in a nursing home after his father's death and was unaware of in-home service alternatives. The Nevada Supreme Court pointed out that Mr. Bergstedt's

suffering resulted more from his fear of the unknown than any source of physical pain.... It is equally clear that if Kenneth had enjoyed sound physical health, but had viewed life as unbearably miserable because of his mental state, his liberty interest would provide no basis for asserting a right to terminate his own life with or without the assistance of others.(10)

Ruling after his death, even the Nevada Supreme Court, which had supported Mr. Bergstedt's request for physician assisted suicide, recognized that he had not been properly informed and had not made a free and intelligent life-or-death decision. If he were still alive, the court said "it would have been necessary to fully inform him of the care alternatives that would have been available to him after his father's death or incapacity."(11)

David Rivlin was paralyzed as a result of a surfing accident a full eighteen years before he committed suicide with the aid of medical support. He had no terminal illness, but he used a ventilator. He was confined to a nursing home in Michigan against his will because of the lack of adequate in-home support services at that time. In addition, his relationship with his fiance had recently ended.(12) Mr. Rivlin was given his "right to die" but was never offered the options he expressly requested to live in the community.

Larry McAfee, a thirty-four year old man with quadriplegia as a result of an accident, was transferred from one institution to another "like a sack of potatoes" over a period of four years.(13) Georgia did not pay for community support but would pay only for the cost of nursing home care(14) and for intensive care in a hospital unit where he lived for eight months, even though he was not ill, let alone critically or terminally ill.(15) The Georgia Supreme Court affirmed the lower court's assessment that Mr. McAfee was hopelessly injured.(16) In the nursing home, he was told when to eat, sleep, and even what he could watch on his own video recorder.(17) Nevertheless, after disability rights advocates including members of the amici communicated with Mr. McAfee, he changed his mind. By the time Mr. McAfee won his so-called "right to die," he had worked with disability advocates to get out of the nursing home and pursue work as an engineer using computer aided drafting. Mr. McAfee had experienced how people with severe disabilities are devalued as human beings and was quoted as saying,

You're looked upon as a second-rate citizen. People say, 'you're using my taxes. You don't deserve to be here. You should hurry up and leave.' You reach a point where you just can't take it anymore.(18)

These four cases are examples of discrimination against and devaluation of people with disabilities. These decisions occurred because the general public, including judges and physicians, share common societal reactions to people with severe disabilities:

1. nondisabled persons fear that they will become disabled themselves and assume that having a severe disability is worse than death itself;

2. nondisabled persons often view people with severe disabilities as lacking in "quality of life," and such people are to be pitied instead of being granted civil rights or equal legal protections; and

3. to many nondisabled persons, disability falsely implies entrapment, loss of control, and loss of dignity.

As a consequence of these reactions, persons with severe disabilities are segregated, put out of sight in institutions, or neglected, abandoned, abused, and increasingly assisted to die. These public misconceptions, however, are refuted by research studies on disabled people's quality of life.(19)

Each of these cases dismissed the state interest in protecting the lives of these disabled individuals and found a "right to die" through the withdrawal of life-sustaining treatment. However, the courts specifically distinguished any right involving active physician-assisted suicide. Before this Court is the request to obliterate this distinction.

Reviewing the people whom Jack Kevorkian assisted in committing suicide also demonstrates the potential for uncontrolled discrimination against people with disabilities, if this Court sanctions active physician-assisted suicide. Of the 40 people who died between June 4,1990 and September 7, 1996 with the assistance of Kevorkian, at least 28 people had diseases that were not life-threatening and autopsies revealed they were not terminally ill.(20) For example, nine of them had multiple sclerosis. As the New York Times recently reported in connection with these people,

multiple sclerosis is not a fatal disease.... Its tendency to wax and wane repeatedly and unpredictably can have patients wavering back and forth between elation and despair.... [T]he depression that often accompanies the disease is a treatable condition.... [S]ervices are available to help every person with illness live a more productive and comfortable life and that whatever the state of a person's disability, life need not be worthless.(21)

Like those people who had multiple sclerosis, most of Kevorkian's other "patients" did not have terminal illnesses nor did they receive appropriate services to help make life meaningful. For example, Janet Adkins, age 54, who died June 4, 1990, was in the early stages of Alzheimer's, was not terminally ill, and her own doctor said she had ten years of productive life ahead of her. She never met or spoke with Kevorkian until two days before her death. According to an aunt, "She did not want to be a burden to her husband and family."(22) Marjorie Wantz, age 58, who died October 23, 1991, had no life-threatening condition, had reportedly experienced pelvic pain, but an autopsy found she had no apparent illness or disease.(23) Sherry Miller, 42, who died October 23,1991, had multiple sclerosis and could have lived for many years but felt she was "becoming a burden on people," and she had suffered from depression but did not want to take the medication for it.(24) Elaine Goldbaum had financial problems and feared losing her house,(25) Jonathan Grenz was said to be depressed and "overwhelmed with grief" following his mother's death,(26) and Ali Khalili had told his doctor that "the quality of his life had been compromised by an anxiety state."(27) Kevorkian assisted them all to die.

These people represent the extent of discrimination that exists in our society; with appropriate treatment and services, many of them would be alive today. It is against the backdrop of these and other cases, reflecting society's growing support of a "right to die" for people with severe disabilities, that your amici request protection from the very real threat to the lives of people with disabilities that will result from a right to assisted suicide through active measures.

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