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Rewriting the Myths, Redefining the Realities
 

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These photos, representing persons with disabilities engaged in different activities, point out that persons with disabilities can lead full, fun, productive lives.

 

Assisted Suicide:

The Ultimate Discrimination

By Diane Coleman, J. D.

Most people don’t know very much about the history of the disability rights movement. Our struggles have been fought on the margins of society’s awareness. Few are aware of the hundreds of us who were arrested and jailed in the fight for passage of the ADA. We’ve rarely been on the media’s radar screen, except as tragic but courageous human interest stories. The public doesn’t know about the fight we are now waging to free our brothers and sisters from nursing homes. As far as the network news is concerned, our political movement does not exist.

But suddenly the victims of our struggle have been thrown into the limelight —- not the leaders of our civil rights marches, not our Martin Luther Kings, not our crusaders in Washington, not the countless unsung heroes who struggle each day against poverty and human isolation —- but the victims of Jack Kevorkian who gave up in their struggle and found a serial killer/public folk hero who built a popular crusade from the destruction of their lives. Perhaps for the first time, our movement is not on the margins, but at the center of a major public debate.

Not Dead Yet is a national disability rights group which opposes the legalization of assisted suicide and euthanasia, because we believe that any alleged benefit to a few is far outweighed by the deadly danger to this nation’s largest minority group, people with disabilities. To date, eight other national disability organizations have formally adopted positions opposing legalization of assisted suicide: the National Council on Independent Living, the National Council on Disability, ADAPT, Justice for All, TASH, the National Spinal Cord Injury Association, the World Association of Persons With Disabilities and the World Institute on Disability.

The issue is not ordinary suicide, which is not illegal in any state. Nor is the issue the right to refuse unwanted medical treatments and accept a natural death, That legal right is firmly established, and has been widely extended to surrogate decision makers.

The issue is whether there will be an exception from society’s long-standing laws and policies about how suicidal people are treated, an exception which would specifically deny the equal protection of such laws only to ill and disabled people — and whether such an exception will also be extended to surrogate decision makers (a position already advocated by some in the pro-euthanasia movement).

The Case of Elizabeth Bouvia

Assisted suicide first gained the significant attention of the disability movement in the early 1980s because of a 26-year-old woman with cerebral palsy named Elizabeth Bouvia. At the age of 10, she’d been put in an institution. But she had gotten out, used a motorized wheelchair, and she went to college. She got married and was going to have a baby. But then she had a miscarriage. In a short time, her marriage broke up. Her brother died in a drowning accident. Her mother got cancer.

So she went to a hospital and said she wanted help to die. The hospital said "no," but a lawyer named Richard Scott took her case. He was a co-founder of the national Hemlock Society, the nation’s leading pro-euthanasia lobby group. And they found a psychologist named Faye Girsh, now the Director of the Hemlock Society, to say that Ms. Bouvia’s desire to die was rational and permanent, that her desire was based on her suffering from her disability rather than any of her recent traumas. Disabled activists in Los Angeles protested that Ms. Bouvia was being treated differently than a nondisabled woman facing similar setbacks would be treated. Society would not help her commit suicide if she were nondisabled. It was discrimination, clear and simple.

But no one listened to the disability community. The media, the general public and ultimately the appellate court found that she should have a so-called "right to die" by starving herself while receiving morphine and comfort care. The California Appeals Court compared Ms. Bouvia to a terminally ill person, and said: Petitioner would have to be fed, cleaned, turned, bedded, toileted by others for 15 to 20 years! Although, alert, bright, sensitive, perhaps even brave and feisty, she must lie immobile, unable to exist except through physical acts of others. Her mind and spirit may be free ... but she herself ‘is imprisoned and must lie physically helpless, subject to ... humiliation and dehumanizing aspects created by her helplessness... We cannot conceive it to be the policy of this State to inflict such an ordeal upon anyone.

But the court case took a couple years and, by then, she did not use her newly won right, and is still alive.

But a lot has happened since then.

U.S. Civil Rights Commission Report on Medical Discrimination Against Children with Disabilities

In 1989, the U.S. Civil Rights Commission examined the passive euthanasia of infants and children with disabilities and issued a 153-page report entitled "Medical Discrimination Against Children With Disabilities." The Commission looked closely at the role of negative and ill-informed quality of life judgments about people with disabilities in shaping medical treatment decisions.

Among the information considered by the Commission in reaching its findings was an experiment conducted from 1977 to 1982 by four doctors and a social worker at the Children’s Hospital of Oklahoma. The doctors developed a "quality of life" formula which took into account the "natural endowment" of babies with spina bifida as well as the socioeconomic status of the baby’s family. The doctors used the quality of life formula to determine which families they would advise to provide a relatively simple lifesaving medical procedure, and which families they would advise to let the baby die. Without being told they were part of a study, better-off families were provided a realistic and optimistic picture of their child’s potential, while poor families were provided a pessimistic picture. Four out of five poor families accepted the doctors’ advice and 24 babies lost their lives. The Commission denounced the study as follows:

To accept a projected negative quality of life ... based on the difficulties society will cause... rather than tackling the difficulties themselves, is unacceptable. The Commission rejects the view that an acceptable answer to discrimination and prejudice is to assure the "right to die" to those against whom the discrimination and prejudice exists. (U.S. Civil Rights Commission, Medical Discrimination Against Children with Disabilities, Chapter 3, "The Role of Quality of Life Assessments in the Denial of Medical Treatment," p. 33 { September 1989} .)

The Right to Refuse Treatment - Our Right or Someone Else’s?

The Hemlock Society and similar organizations have increasingly gained public acceptance. In the late ‘80s and early ‘90s, it worked to expand the right to refuse heroic medical treatment to include food and water, to expand decisions by competent persons to refuse life support to include decisions by family members and other surrogates, and to expand surrogate decision making beyond those who are in comas to people who are not in comas but are severely impaired. These practices are completely private and abuses are not addressed. There have been more deaths of people with nonterminal disabilities, some public, such as Christine Busalacchi in Missouri, and countless others we will never hear about.

Of course, research proves that most families make their decisions based on the physician’s recommendations. Several research studies also show that physicians consistently and dramatically underestimate the quality of life of people with severe disabilities compared to our own assessments. For example, one study reported that 86 percent of quadriplegics rated their quality of life as average or better than average. In contrast, only 17 percent of their emergency room doctors, nurses and technicians thought that their own quality of life would be average or better if they became quadriplegic.

Nowadays, some managed care companies offer bonuses to physicians who save them money on expensive patients by not providing medical treatments they may need. Meanwhile, the American Medical Association and many individual hospitals are developing futility guidelines, which allow doctors to withhold medical treatment against the expressed wishes of a patient or the family decision-maker. One such guideline, proposed by a multistate hospital system, would determine futility, not simply based on whether the treatment would positively affect the condition it’s meant to treat, but also based on quality of life as judged by the physician. With today’s managed care trends and government health care budget cuts, what can we realistically expect to happen when most physicians’ subjective biases and financial self-interests both discourage a high quality of care?

For the majority of people with disabilities, whose only information about living with a disability comes from health care providers, today’s trends do not bode well. This article has focused so far on cases involving discrimination in the withholding and withdrawal of medical treatment. Consider the added possibilities for deadly discrimination if our society legalizes assisted suicide and active euthanasia as currently proposed by the Hemlock Society and its affiliates.

There is great reason for concern about newly injured people. 8,000 new people are spinal cord injured each year, and 99,000 are hospitalized with moderate to severe head injuries. In critical periods after injury, people could easily be swayed to make a so-called "choice" for death. Many of our colleagues with disabilities who now enjoy their lives say that they would not have survived the first stages of their injuries if assisted suicide and euthanasia were legal.

A Civil Rights Analysis

Some euthanasia advocates have argued, "Although we have laws governing how society will normally respond to prevent suicide, we can carve out an exception to those laws for certain people and have safeguards. After all, these people may need help to do it."

Sometimes analogies are helpful. According to the Detroit Free Press, four out of five completed suicides are by men, but women try to commit suicide three times as often as men. Obviously, women must "need help to do it." But would society consider legalizing assisted suicide for women? This could be done with the usual so-called "safeguards," requiring that the woman make the request for assistance two times in a 14-day period, is not diagnosed as mentally ill, and is not being coerced in any way evident to two disinterested witnesses who have no financial stake in her demise. Would society pass a law to make sure that women can exercise their "choice" for suicide as effectively as men? Clearly, such a law would constitute illegal gender discrimination.

In New Hampshire, the Hemlock Society lobbied for an assisted suicide bill, which applies to people with both terminal and non-terminal but incurable conditions that shorten their overall life span. This would make most people with disabilities and chronic health conditions "eligible" for assisted suicide. Not Dead Yet contends that the New Hampshire bill, if enacted, would clearly violate the Americans with Disabilities Act. Though somewhat less obviously, so does the Oregon law. The ADA has been specifically found to cover persons with cancer and HIV and, presumably by analogy, other terminal conditions as well. Therefore, the Oregon law violates the ADA.

Unfortunately, the civil rights violation inherent in legalizing assisted suicide based on health status is not as obvious to most people as it would be if assisted suicide were legalized based on gender or race.

At the Heart of a Class Struggle Over Health Care Access

It is no doubt true that many, even most, proponents of legalized, assisted suicide are well-intentioned people who really believe that the primary effect of the law would be to stop unremitting pain and suffering based on a truly voluntary request from a person who is really near death. However, a study of the first year under the Oregon law, which included information supplied by physicians who decided to voluntarily report their assisted suicide activities, demonstrated that none of the patients who died fit the profile. Pain was not the issue. Most expressed fear of future disability and dependency as their illnesses progressed. "Death with dignity" really means "death before disability."

The median income of Hemlock Society’s members is $52,000. They can be described as the Four W’s —- the white, well-off, worried well. "Choice" is nice rhetoric to borrow, but it’s not that simple. What are the safeguards that ensure a voluntary suicide without coercion? First, the individual must give consent after having been informed of the "feasible" medical alternatives. This alleged "safeguard" does not address two key issues: (1) None of the assisted suicide bills or referenda require that the costs of the medical alternatives be covered, actually making assisted suicide nothing more than the much touted "last resort," and (2) Non-medical alternatives that might address the individual’s concerns are not part of the informed consent.

Give Me Liberty or Give Me Death

Throughout the’80s, there were several court cases involving people with nonterminal disabilities who were also granted this so-called "right to die." Most of them were ventilator users who wanted to be freed from confinement in a nursing home, but didn’t know how to achieve that goal in the oppressive system they faced. Instead of personal assistance and freedom, most of them got death. David Rivlin in Michigan and Kenneth Bergstedt in Nevada are examples of lives already lost over this issue.

Olmstead won the right under the ADA Title II requiring that governmental services (including long-term care services) must be provided in the "most integrated setting" appropriate to the needs of the individual.

This is our Brown v. Board of Education, the disability community’s ultimate desegregation case.

A new pro-euthanasia book has a different answer for people who would rather die than go to a nursing home. In Freedom To Die, Derek Humphry (Hemlock Society’s well-known co-founder and author of Final Exit) and Mary Clement write:

Surveys have consistently found that most people would rather continue to live at home rather than in a nursing home. What has not been known until recently, however, is that the aversion to "such a facility is so strong that a new study of seriously ill people in hospitals found that 30 percent of those surveyed said they would rather die than live permanently in a nursing home. " (The Age, Dec. I 0, 1996.) This information begs the question: "Why do we, as a nation, not allow these people to die, if they have no alternative to a nursing-home existence and this is what they want? Their lives would conclude with dignity and self-respect, and one measure cost containment would be in place. (Freedom To Die, Chapter: The Unspoken Argument, p. 319, emphasis added).

No "Safeguards" Through the Courts

There is already significant evidence that neither the civil nor criminal justice systems will draw the line and protect our lives, regardless of what any legal fine print may say.

Suppose a woman with a progressive but nonterminal disability such as multiple sclerosis felt like a burden on her husband and family, because they couldn’t afford her medications, which Medicare doesn’t pay for, or couldn’t get enough in-home support services. Even though her needs could be met and her family could be supported, they often are not, and rarely without a fight. Too many tired sighs from her husband, too many looks away, a negative comment overheard. What makes her suicide more voluntary than that of a nondisabled woman facing spousal rejection?

Approximately 15 percent of Jack Kevorkian’s victims had nonterminal multiple sclerosis, most of them women. By his own admission, Jack Kevorkian has presided in the deaths of 130 individuals, and a Wayne State University study reveals that a 70 percent majority of these were not terminally ill: Sherry Miller, Janet Atkins, Wallace Spolar, Loretta Peabody, too many to name.

After nine years of serial killing, Kevorkian has been convicted of second-degree murder. But why did people with disabilities have to wait so long for the equal protection of laws that others could take for granted? If he had assisted in the suicides of any other defined group, such as death row prisoners (as he has proposed), or people who were the victims of documented abuse, or homeless people, society would not have accepted the argument that he was relieving suffering. Death is a solution to anyone’s suffering, healthy or otherwise. But why has death been viewed as the only viable solution for us? The "better dead than disabled" mentality of the pro-euthanasia denied people with disabilities the equal protection of the law.

Kevorkian is not the only example of a perpetrator not brought to justice. Consider the killing of Henry Taylor, a 69-year-old African American at a Chicago area HMO hospital in autumn 1998. The day before he died, the newspaper reported, Taylor told his brother that he was expecting surgery the next day. The only document he signed was a standard "do not resuscitate order," not a consent to euthanasia. The physician admits he killed Taylor by lethal injection, and his license was suspended, but no criminal charges have been brought six months after the killing.

Since the Oregon law immunizes all participants, to what extent might it be interpreted by the public as permission to hasten the deaths of family members without the involvement of health care providers? According to the FBI, 55.9 percent of all homicides of children ages 0-11 are committed by family members, and 21.2 percent of homicides of individuals age 50 and over are committed by family members. Overall, approximately one in seven of all homicides are perpetrated by family members of the victim. [Snyder, Howard N., and Finnegan, Terrence A. (I997) Easy Access to the FBI’s Supplementary Homicide Reports: 1980 - 1995].

In 1997, a graduating Harvard law student, Amy Hasbrouck, wrote a paper on the criminal sentencing of family members who killed disabled children, based on cases reported in Lexis. According to Ms. Hasbrouck’s study, out of 98 such reported cases, 35 contained sentencing information. Of these, 15 convicted killers of disabled children received no jail or prison time, and eight received some jail time ranging from only three months to five years. Contrast the infamous case of Susan Smith!

We can also begin to see claims of assisted suicide and "mercy killing" being raised as defenses in murder cases. George Delury, who later admitted to using a plastic bag to kill his disabled wife, served four months in jail for an alleged assisted suicide. In 1997, significant evidence that Delury’s wife did not want to die was presented on Dateline NBC. In 1997 in New York, John Bement was sentenced to two weeks in jail and 400 hours community service for killing his disabled wife, claiming that it was an assisted suicide. Advocates argued that Robert Latimer should serve only one year for killing his 12-year-old daughter with cerebral palsy, somewhat short of the constitutional minimum 10-year prison sentence for a conviction on second degree murder charges in Canada. The Canadian appellate court, however, overturned the lower court’s ruling to exempt Latimer from the longer sentence. On June 19th, the Fort Lauderdale Sun-Sentinel reported on a young woman charged with killing her disabled boyfriend: When the physical evidence did not support her initial story that he killed himself, she changed her story to assisted suicide. And we still have not heard whether charges will be brought against the so-called "Angel of Death" in a. Los Angeles nursing home murder case involving over 40 victims.

Given this track record, people with disabilities should have no confidence that either the civil or criminal justice systems will value our lives enough to protect us equally in a society that is more and more open in its certainty that everyone would be better off without us.

Involuntary Euthanasia and the  

Recently the Hemlock Society has begun to advocate legalization of involuntary euthanasia. On December 3, 1997, Hemlock issued a widely ignored press release in which its executive director, Faye Girsh, asked that family members and other "agents" be able to procure court orders to euthanize "a demented parent, a suffering severely disable (sic) spouse, or a child" if their life, "in the belief of the patient or his agent, is too burdensome to continue." That’s involuntary euthanasia. It’s not a slippery slope; it’s a political agenda.

Will costly people soon be seen as greedy if they want to live? In 1997, a leading bioethics journal, The Hastings Center Report, published a cover article entitled "Is There a Duty to Die?" The article began with favorable comments on former Colorado Governor Richard Lamm’s claim that the elderly have a duty to die if they cannot take care of themselves.

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