Withdrawing life-sustaining treatment from people with severe disabilities who request it: equal protection considerations.

• Author: Coleman, Diane

In 1983, the Southern California affiliate of the American Civil Liberties Union (ACLU) sued on behalf of Elizabeth Bouvia, a young woman with cerebral palsy. The ACLU sought a court order requiring a hospital to provide intravenous morphine to Ms. Bouvia while she starved herself to death.(1) The Bouvia case was the first highly publicized right-to-die court proceeding to involve a conscious individual with substantial but not terminal disabilities.

Although Ms. Bouvia had experienced a series of personal setbacks including a miscarriage, spousal abandonment, loss of certain financial benefits, and loss of an opportunity to pursue a master's degree, these events were not addressed as factors precipitating a suicidal crisis subject to clinical intervention and treatment.(2) Her very public request for assistance to die was not interpreted as the proverbial "cry for help." Instead, the court, the ACLU attorneys, psychiatric professionals, and the media assumed that Ms. Bouvia was rationally preferring death over the life with disabilities she had experienced since birth.(3)

A number of individuals with disabilities attended the trial court proceedings in the Bouvia matter and protested the court petition by picketing the ACLU's offices. The lower court denied Ms. Bouvia's right-to-die petition.(4)

The appellate court reversed by ruling that Ms. Bouvia's request did not involve an assisted suicide.(5) Nevertheless, by the time the appellate decision was handed down, Ms. Bouvia's suicidal crisis had passed, and she did not carry out her plan of self-starvation.(6) Unfortunately, in the course of the proceedings, she did not receive appropriate psychological counseling or other support services, her limbs contracted from disuse, preventing her from using the motorized wheelchair she had used to get through college, and she became dependent on morphine.(7)

While Ms. Bouvia has dropped out of the public eye, her case continues to serve as legal precedent for similar court rulings across the United States. A recent right-to-die ruling was issued in the Nevada case of Kenneth Bergstedt.(8) The Nevada Supreme Court relied, in part, on the Bouvia analysis in determining that Mr. Bergstedt's petition to direct his caregivers to disconnect his ventilator was not a request for suicide, but rather was a request for natural death.(9) When considering requests for assistance in dying by persons with severe disabilities, other courts have made the same "it's not suicide" determination.(10)

Why do courts conclude that petitions for an assisted death by persons with severe but nonterminal disabilities do not implicate suicide? The answer may be that these courts elect not to apply the equal protection constraints on state action found in the federal and state constitutions. By declining to apply protections against suicide, and indeed by encouraging or approving death for persons with disabilities, while continuing to extend suicide protections to persons without disabilities, the courts risk denying persons with disabilities the equal protection of the laws.(11) Only by ruling out suicide in these right-to-die cases can courts avoid a direct confrontation with equal protection principles.

This article examines the practice and consequences of treating requests to die by persons with disabilities as rational choices and not as suicidal pleas for help and assistance in living. By selectively ignoring laws and policies for suicide prevention in these cases, courts are applying a double standard for persons with and those without disabilities. This double standard is based on the courts' ill-informed quality of life judgments. The resulting court actions are subject to constitutional challenge for their failure to provide equal protection to persons with disabilities.

Statement of Facts: McKay v. Bergstedt

Kenneth Bergstedt was a thirty-one year old man with quadriplegia who had used a ventilator since the age of ten.(12) He had lived with his parents all his life, though his mother had died some years before his petition to die was filed. The court record indicated that he spent his time watching television and writing poetry on a computer.(13) Although other persons with spinal cord injuries at the C-1/C-2 level use wheelchairs,(14) Mr. Bergstedt was reportedly limited to lying on a gurney most of the time.(15) Apparently, he had never attended school away from home, worked, or socialized much. Nor did he establish contact with the disability community or with persons knowledgeable about options for independent living.

When his caretaker father became terminally ill, the son feared "life in the care of strangers" and being cast "adrift in a sea of indifference" upon his father's death.(16) The father filed a petition in a Las Vegas court on his son's behalf. He requested a court order permitting him to turn off his son's ventilator without liability for murder or wrongful death, and determining that Mr. Bergstedt's request was not suicidal. (17) The court never communicated with Mr. Bergstedt personally.(18) The petition was accompanied by affidavits from the father and a psychiatrist and a five page letter purportedly from Mr. Bergstedt himself.(19)

Some people in the disability community tried to contact Mr. Bergstedt by telephone after reading news coverage of the court case, but the father said his son could not come to the phone. When pressed by a reporter from the Disability Rag, a disability rights publication, the father said that his son did not like the way he sounded using the ventilator when he talked and therefore would not talk on the phone.(20) A disability group in California began to arrange for a shared living situation and personal attendant for Mr. Bergstedt, but members of the group were never permitted to talk with him about these opportunities.(21)

The lower court granted Mr. Bergstedt's application and ordered the Nevada attorney general to appeal the ruling.(22) Mr. Bergstedt's father had the ventilator disconnected, and Mr. Bergstedt died before the Nevada Supreme Court could rule on the case.(23) Following the overwhelming trend in similar cases, the high court agreed that Mr. Bergstedt could be assisted to die.(24)

To understand the equal protection problems of granting the right to die to Mr. Bergstedt and others similarly situated, the context, rationale, and conclusions of the Nevada Supreme Court must be carefully scrutinized. The case occurred in a state and country with extensive protections against suicide, yet these protections were not applied to Mr. Bergstedt. By approaching Mr. Bergstedt's petition as a nonsuicidal request, the Nevada court produced conclusions of fact and law that were seriously inconsistent.

State Laws/Policies for the Prevention of Suicide

Suicide is no longer a crime in any state, including Nevada.(25) There are, however, a number of state laws and policies, as well as medical practices, designed to prevent suicide and suicide assistance.

First, state constitutions mirror the U.S. Constitution by affirming a basic due process commitment to protecting individual life.(26) Second, state legislatures have also furthered the goals of preserving life and preventing suicide through various statutes. Regarding the preservation of life, all states statutorily provide that homicide is a crime.(27) Even unintentional killing is punishable if it results from reckless disregard for the consequences of one's acts.(28) That one's homicidal acts may be only a partial factor contributing to death is not a defense to murder charges,(29) nor is it a defense that the victim consented.(30)

In addition, approximately half of the states treat the aiding, advising, or encouraging of suicide as felonies,(31) even though suicide is no longer a punishable offense. Many states permit the use of nondeadly force to prevent suicide.(32) Most states allow persons who pose a danger to themselves to be restrained against their will, at least pending a competency determination,(33) and suicidal persons are generally deemed depressed or otherwise incompetent and held for treatment.(34) Most states allocate substantial, though rarely sufficient, tax dollars to mental health efforts to prevent or reduce suicide. Finally, nonprofit organizations that receive government funds, as well as private volunteer groups, have suicide prevention as their goal.(35)

Society's general commitment to suicide prevention may explain the death sentence appeals often brought, ironically enough, by the ACLU and its affiliates in cases of death row prisoners waiving their rights to appeal.(36) These appeals are initiated by families and friends opposed to a death row prisoner's decision to accept a speedy execution by abandoning the death sentence appeals.(37) In one case, the ACLU even complained that prisoners waiving an appeal were denied adequate counseling services because, if they expressed suicidal feelings, those feelings would be disclosed to prison officials who would then confiscate all their belongings.(38) Although the Supreme Court ruled in 1976 that Gary Gilmore could terminate his appeals of the death penalty,(39) Justice Marshall's dissent in that case is noteworthy because it challenges Gilmore's competency to waive his rights:

I can hardly agree ... that Gilmore has competently, knowingly and

intelligently decided to let himself be killed.... No adversary hearing

has been held to examine the experts, all employed by the State

...,who have pronounced Gilmore sane.(40) Indeed, courts may be more likely to call for in-depth examination of suicidal feelings in death row prisoners than in people with severe disabilities.(41)

Defining Away the Suicide

How did the Nevada Supreme Court in Bergstedt avoid bringing into motion Nevada's laws and practices for preventing suicide and prohibiting assistance for suicide? How did the court release the medical profession from its customary duties to act to...