New England Journal of Medicine 336.23 (June 5, 1997):1671-1673 Disability and Physician-Assisted Suicide
On January 8, 1997, the U.S. Supreme Court heard oral arguments in Vacco v. Quill 1 and Washington v. Glucksberg,2 the two cases concerning whether a state may prohibit persons in the terminal stage of an illness from obtaining the assistance of their physicians in ending their lives. A protest by a few hundred people with disabilities, which took place in front of the courthouse that day, raised related questions: whether a right to physician-assisted suicide is in the interest of people with disabilities and whether the majority of people with disabilities are opposed to the recognition of such a right.
A very vocal group of people with disabilities, including several prominent leaders of the disability-rights movement, have indicated publicly that they are strongly opposed to the recognition of a right to physician-assisted suicide. However, like any politically, ethnically, and religiously diverse community, including that of physicians, the community of people with disabilities is far from unanimous on this issue.
A Harris poll conducted in 1994 found that 66 percent of people with disabilities who were surveyed support a right to assisted suicide, as compared with 70 percent of the general population.3 Studies have found that between 63 percent4 and 90 percent5 of people with AIDS want to be allowed this option, and 55 percent have actually considered it for themselves.4 Interestingly, those who had witnessed the suffering of a person with a terminal illness were most likely to support the right.
The diverse views of people with disabilities on this controversial issue tell us much about their views of themselves, their physicians, our health care system, and our society.
Arguments against Physician-Assisted Suicide
The main disability organizations that oppose the recognition of a right to physician-assisted suicide are the National Legal Center for the Medically Dependent and Disabled, the National Catholic Office for Persons with Disabilities, and two groups of activists who call themselves ADAPT and Not Dead Yet. They argue that our society has devalued people with disabilities, relegating many of them to institutions in which they are oppressed and cannot achieve their potential. In the context of such pernicious discrimination and a health care system that has been reorganized to cut costs regardless of the consequences, these organizations argue, people with terminal illnesses and other disabilities will be coerced into choosing to end their lives. (Under the Americans with Disabilities Act of 1990, the term "disability" is defined broadly and encompasses people in the terminal stage of an illness.6)
The organizations further argue that the right to assisted suicide itself is based on long-standing prejudices and misconceptions about people with disabilities, especially the notion that disabilities necessarily result in a diminished quality of life. According to this argument, basing the right to assisted suicide or the denial of related services (such as suicide-prevention services) on such misconceptions violates the Americans with Disabilities Act and denies people with disabilities equal protection of the laws under the 14th Amendment to the U.S. Constitution.7
The opponents of a right to physician-assisted suicide contend that this right cannot be limited to competent persons in the terminal stage of an illness and that it will inevitably be extended to competent persons with disabilities who are not terminally ill and to incompetent persons. Similarly, physician-assisted suicide, according to this argument, cannot be limited to voluntary decisions by terminally ill persons to administer lethal drugs prescribed by a physician, and the practice will be extended to involuntary euthanasia of people with disabilities. The opponents cite the Netherlands and even Nazi Germany as examples of societies in which the right cannot be contained and ultimately harms people with disabilities generally.
Those who argue against physician-assisted suicide are particularly opposed to the proposed gatekeeping role of physicians, because of a fundamental distrust of the medical profession. One of the foremost opponents of assisted suicide recently said, "I'm not sure what I'd do if I were terminally ill. I know that my experience as a person with a disability would make me very concerned that doctors and others would want to hurry me into death as quickly as possible."8
Arguments in Favor of Physician-Assisted Suicide
The main disability organizations that support the recognition of a right to physician-assisted suicide represent people with AIDS, such as the Lambda Legal Defense and Education Fund and the Gay Men's Health Crisis, as well as numerous local AIDS organizations. In addition, many persons with disabilities, including me, fundamentally disagree with the opponents' arguments. We believe that the disability-rights movement in this country stands for our right to self-determination9,10,11,12 - that is, our fundamental right to control our lives, including decisions about the timing and manner of imminent death from a terminal illness. We further believe that the right to assisted suicide is guaranteed under the 14th Amendment to the Constitution, as well as under the provisions of several state constitutions (e.g., Florida's privacy amendment).
The disability-rights movement has been successful in securing a broad array of rights for people with disabilities, and these rights are based in large part on the recognition of their autonomy. People with disabilities have the right to be free of involuntary sterilization, to raise children, to be educated in public schools, to use public transportation, and to have access to places of public accommodation.13,14 We believe that competent persons with disabilities, even in the oppressive circumstances of many institutions, are capable of autonomy. Most disabled persons do not consider themselves vulnerable or oppressed and want to make the decisions that fundamentally affect their lives.
We do not believe that the right to assisted suicide is premised on our society's widespread misperception that people with disabilities have a diminished quality of life. It is based on respect for the autonomy of terminally ill persons in determining the quality of their lives during their final days. Moreover, the right to assisted suicide does not deprive people with disabilities of anything and therefore does not violate the Americans with Disabilities Act or the equal-protection clause of the Constitution. The right does not deny them suicide-prevention services, protection against murder, or protection from other abuses.
Although any constitutional right can be abused and vigilance is essential, we believe that the right to physician-assisted suicide will not necessarily be extended to persons or situations for which it was not intended. Recent studies of the experience in the Netherlands indicate that the slide down the "slippery slope" that the opponents predict has not occurred in that country.15,16,17
Any analogy to Nazi Germany is way off the mark. The Nazis conducted a program of involuntary euthanasia in which an all-powerful state granted authority to physicians to kill people with disabilities against their will18; in our constitutional democracy, we are debating whether persons who are dying may choose for themselves whether to end their lives with the assistance of their physicians. Although there may be some superficial resemblance between the two situations, because both involve an intervention by a physician that results in death, they are in fact diametrical opposites. In one case, the state has all the power, and in the other case, the individual has all the power.
Reconciling the Opposing Views
How can people with disabilities who agree on many other disability-related policy matters disagree so vehemently on this issue? The issue of assisted suicide is inherently divisive. The two sides do not line up neatly according to such traditional opposing views as those of conservatives and liberals, Republicans and Democrats, or the young and the old. There is therefore no reason to expect that the issue would be viewed uniformly in the diverse community of people with disabilities. There are, however, several aspects of assisted suicide on which most persons with disabilities probably agree.
First, the two sides agree that people with disabilities have been devalued in our society throughout its history. Derogatory terms such as "invalids" and "cripples," which fortunately have fallen into disuse, reflect the low esteem in which people with disabilities have been held. The long history of prejudice and discrimination against disabled people, leading to the enactment of the Americans with Disabilities Act in 1990, has been well documented.10,11,12,13,19 This historical perspective alone justifies the sensitivity of people with disabilities who oppose assisted suicide.
Second, the two sides agree that recent changes in the structure of our health care system and, in particular, the strong growth of managed care have generally not been favorable to people with disabilities, who are, on average, among the most frequent users of health care services.20 Consequently, the efforts of health maintenance organizations and other managed-care providers to contain costs, particularly through the rationing of specialty services, have disproportionately and adversely affected people with disabilities. Again, this situation explains the concern of those opposed to assisted suicide who argue that it is less expensive to help people die than to help them live.
Although those of us who support the right to physician-assisted suicide agree with the opponents that our society and its health care system are far from perfect in their treatment of people with disabilities, we disagree that the imperfections of the system offer adequate justification for denying the autonomy of persons in the terminal stage of illness. If our nation were to establish a system of universal health insurance and comprehensive care responsive to the needs of people with disabilities,21,22 as the Dutch have done,23 this issue would be far less contentious among persons with disabilities.
Finally, both sides are concerned that there is considerable potential for abuse of a right to assisted suicide. Our disagreement is basically over the probable effectiveness of regulatory safeguards and whether the risks of abuse outweigh the individual's rights of autonomy and privacy. Those who oppose physician-assisted suicide do not believe that the safeguards would be adequate to protect vulnerable people with disabilities, such as those in institutions, and are not willing to accept the risk. Those of us who support the right to assisted suicide believe that safeguards would be effective, and that if we do not accept this risk, we will face a much greater risk: loss of our autonomy and freedom from state intrusion in our lives.
Implications for the Physician-Patient Relationship
Perhaps the most disturbing aspect of this debate is the revelation that many people with disabilities believe that their physicians would be too quick to help them die as a "solution" to their health problems. But many other people with disabilities, including me, do not have this belief. Our experience with the medical system has been relatively positive. Although we too are concerned about the tendency of managed-care providers to prevent us from obtaining the care we need, we do not believe that our doctors would be eager to eliminate us, and we find it very disconcerting that many people with disabilities have this ominous perception of physicians.
Physicians should be equally disturbed by this finding. When people with disabilities seek medical assistance, too often they encounter physicians who regard their conditions as an inconvenience and who do not understand the complexities of treating medical problems related to disability.20 In the context of managed care and cost containment, physicians often appear to be concerned more with cutting costs than with providing appropriate care. A substantial minority of people with disabilities appear to think that their doctors believe they would be better off dead. Clearly, communication between physicians and people with disabilities must be improved.
The issue of physician-assisted suicide will not go away. If the U.S. Supreme Court returns the issue to the states, each state will have to decide for itself whether, and under what circumstances, to legalize assisted suicide. If the Court finds that there is a constitutional right to assisted suicide, each state will have to decide how to regulate the practice. In either case, we can expect protests by people with disabilities in every state for years to come. Our society will have to address the views of people with disabilities, who have strong opinions on both sides of this issue.
Andrew I. Batavia is an attorney with the health-law department of McDermott, Will, and Emery in Miami who has quadriplegia as a result of a spinal cord injury in 1973. He formerly served as executive director of the National Council on Disability, associate director of the White House Domestic Policy Council, special assistant to U.S. Attorney General Dick Thornburgh, and legislative assistant to Senator John McCain. He was the lead attorney on amicus curiae legal briefs on behalf of a coalition of citizens with disabilities in cases concerning the right to assisted suicide that are currently before the U.S. Supreme Court and the Florida Supreme Court.
The views expressed in this article are solely those of the author and do not necessarily represent the positions of McDermott, Will, and Emery or any other organization with which Mr. Batavia is affiliated.
Andrew I. Batavia, J.D. McDermott, Will, and Emery Miami, FL 33131
[Yoshie: I omitted endnotes because they would make the posting bounce.] -- Yoshie
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