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7/14/98 11:18am
Testimony of Diane Coleman
Summary
Not Dead Yet is a national disability rights group which opposes the legalization of assisted suicide and euthanasia, because any potential benefit to a few is far outweighed by the lethal danger to this nation's largest minority group, people with disabilities. We support the Lethal Drug Abuse Prevention Act proposed by Congressman Hyde because it will help to save our lives.
Before I directly address the two primary arguments raised against the bill, I want to talk about discrimination in the health care system.
In 1989, the U.S. Civil Rights Commission issued a 153-page report entitled "Medical Discrimination Against Children With Disabilities."
Among the information considered by the Commission was an experiment conducted from 1977 to 1982 at the Children's Hospital of Oklahoma. Doctors there developed a "quality of life" formula for babies with spina bifida which took into account the socioeconomic status of the baby's family to determine what to advise them about a simple but life-and-death procedure. 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 US Civil Rights Commission concluded:
"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."
Today, adding to the medical discrimination that existed then, Medicare and Medicaid are facing major budget crises. Medicare already does not pay for prescription medications. On July 6th, the media reported that the nation's top HMOs are pulling out of state Medicaid programs which serve poor, elderly and disabled people.
Meanwhile, the AMA and many individual hospitals are developing futility guidelines, which allow doctors to withhold treatment against the expressed wishes of a patient or their family. Several research studies demonstrate that physicians consistently and dramatically underestimate the quality of life of people with severe disabilities compared to our own assessments. What can we realistically expect to happen when physicians' subjective biases and financial self-interests both discourage a high quality of care, and a supposedly objective guideline exists for making those "hard decisions?"
For the majority of people with disabilities, whose only information about living with disability comes from health care providers, today's trends do not bode well. I am especially concerned 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. So many of my colleagues with disabilities who now enjoy their lives have told me that they doubt they would have survived the first stages of their injuries in today's climate.
Of course, disability is not the only basis of health care discrimination. On June 17, 1998, the Journal of the American Medical Association reported that people of color are significantly less likely to receive pain medication than whites. This study involved over 13,000 cancer patients, and confirmed the racial differences found in previous studies.
Now let's look at the added possibilities for deadly discrimination if our society allows laws like Oregon's to be implemented.
Some argue, "Yes, we have laws governing how society will normally respond to prevent suicide, but we can carve out an exception to those laws for certain people. 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. Should we consider legalizing assisted suicide for women?
Or, since people of color are significantly less likely to receive pain medication, should society offer people of color, or poor people, an easier way out?
The Oregon law, on its face, does not discriminate based on race. Everyone who receives assisted suicide must first be informed of their palliative care options. Of course, it does not require that treatment alternatives actually be provided. Isn't there a significant risk of a disparate impact of the Oregon law on people of color?
Let's look at yet another possibility. In New Hampshire, the Hemlock Society has lobbied and gained the introduction of a bill to legalize assisted suicide, which applies to people with terminal or non-terminal but incurable conditions that shorten their overall life span. I would be eligible if it passes. Wouldn't that be a clear violation of my rights under the Americans With Disabilities Act, to be treated differently than a non-disabled woman? It is also well established that the Americans with Disabilities Act covers persons with cancer and persons with HIV. In fact, people with other terminal illnesses also qualify as people with disabilities.
I wish that this civil rights violation were as obvious to everyone as it would be if assisted suicide were legalized based on gender or race. Policy-makers have completely ignored the ADA violations inherent in assisted suicide laws.
There is also significant evidence that neither the civil nor criminal justice systems will draw the line and protect our lives.
By his own admission, Jack Kevorkian has presided in the deaths of over 100 individuals, and the Detroit Free Press reports that the overwhelming majority of these were not terminally ill. Why is he still on the streets, still killing people with non-terminal disabilities, and now even harvesting their organs? Because the Oakland County prosecutor was elected on a campaign promise that he would not prosecute Jack Kevorkian. Because the public believes disability is a fate worse than death.
We disabled people begin to feel like we are in the South in the 1950's, where a killer could get away with murder based on the minority status of their victim. Why would it be different in Oregon than in Michigan?
How many are watching the movement to legalize involuntary euthanasia?
Last December 3rd, the Hemlock Society 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 kill "a demented parent, a suffering severely disable (sic) spouse, or a child."
In 1997, a leading bioethics journal, The Hastings Center Report, published a cover article entitled "Is There a Duty To Die?" The article leads off with favorable comments on former Colorado Governor Richard Lamm's claim that the elderly have a duty to die.
Two primary arguments are being made in opposition to Congressman Hyde's bill: State's rights, and the bill's alleged chilling effect on doctors.
With all due respect to the will of the Oregon voters, since when does our country put discrimination up to majority vote? When states rights conflict with anti-discrimination laws, then federal law must prevail. The Oregon assisted suicide law would create the ultimate form of discrimination, legalizing lethal overdoses based on the health status of the victim.
The second argument against Congressman Hyde's bill is that it will have a chilling effect on physicians in prescribing pain relief. To the best of my information, there have been only a few convictions in the United States for wrongful dispensing of narcotics, and even pro-assisted suicide advocates admit that the convicted doctors in those were probably engaged in illegal drug trafficking. Why should the unsubstantiated fears of physicians receive so much weight? Why shouldn't they be more afraid of medical malpractice claims for denying pain relief? And why should their unsubstantiated fears be elevated above the very well founded fears of people with disabilities?
How many more of our minority group must die wrongfully, how many more murders of people with disabilities will go unpunished, because the euthanasia movement is mistakenly seen as a progressive social cause?
Not Dead Yet calls upon all members of this Congress to support the Lethal Drug Abuse Prevention Act, to affirm the principles of non-discrimination which this nation has struggled so long to establish, to turn back the steamroller of the euthanasia movement before it is too late.
We thank Congressman Hyde and the Constitution Subcommittee for the opportunity to speak to you today.
The Memphis Center for Independent Living
1633 Madison Avenue,
Memphis, TN 38104
(901) 726-6404 v/tty (901) 726-6521 fax
mcil@mcil.org
MCIL is a United Way of the Mid-South member Agency
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