Testimony Before the Hawaii Senate Health Committee Opposing SB 803 presented by NDY President Diane Coleman February 7, 2011
Thank you for the opportunity to submit testimony to this committee on behalf of national Not Dead Yet, a disability rights group that opposes legalization of assisted suicide and euthanasia.
The opportunity for disabled people to sound the alarm about this legislation is especially important because of the ways the political culture war has often been used to exclude and marginalize the disability community in the public debate on these issues. Not Dead Yet formed in 1996 when grassroots disability activists saw Jack Kevorkian acquitted in the assisted suicides of two disabled women who were not terminally ill. We recognized the need to stop a well-funded and media savvy political movement that had been building its successes over the dead bodies of people with disabilities for over a decade.
And we’d like to emphasize the bipartisan nature of disability concerns. While conservatives disagree with assisted suicide as we do, they have their own way of rationing health care to our detriment. For those who depend on publicly funded health care, federal and state budget cuts pose a very large threat. So people with disabilities are directing our message to all parties here, on both sides of the aisle.
WHAT’S DISABILITY GOT TO DO WITH IT?
Assisted suicide proponents have used a door opener strategy to push their bills, claiming that they would limit the availability of assisted suicide to people who are diagnosed as terminally ill, defined as someone who is predicted to die within six months from their illness. If assisted suicide is about actual terminal illness, not disability, then many have questioned disability groups “meddling” and trying to “take away” what they see as the general public’s right to choose physician assisted suicide.
We want to explain why we’re urging that you consider our concerns. Most people realize that they have a good chance of becoming terminally ill before their life is over. But many don’t realize that they have an almost equal likelihood of passing through stages of chronic illness and disability before they are “terminal.”
The disability experience is that people who are labeled “terminal,” based on a medical prediction that they will die within six months, are — or almost inevitably will become — disabled. Furthermore, virtually all so-called “end-of-life care” issues — access to competent health care, adequate pain relief, in-home personal care and flexible, consumer-directed supports, peer counseling, family support — have been disability rights issues for decades.
The question we should ask is why do some people ask for assisted suicide and some doctors choose to provide it? In fact, although unbearable pain has been marketed as the primary reason for enacting assisted suicide laws, the reasons Oregon doctors actually report for issuing lethal prescriptions are the patient’s perceived “loss of autonomy,” “loss of dignity” and “feelings of being a burden.” These feelings arise when a person acquires physical impairments that necessitate relying on other people for help in tasks and activities formerly carried out alone. These are fundamental disability issues.
Unfortunately, popular culture has done virtually nothing to educate the public about how people with severe disabilities actually live autonomous and dignified lives. Our lives are portrayed as tragedies or sensationalized as heroism, but the real life issues and coping methods that most people will need if they live long enough are left out of the picture. No wonder people who acquire disabilities in the course of a significant illness or through accidents so often see death as the only viable solution.
THIS IS NOT ABOUT THE EXISTING RIGHT TO REFUSE TREATMENT
Physician assisted suicide should not be confused with the issue of whether doctors can force unwanted medical procedures on us. It’s important to be clear that the right to refuse unwanted medical treatment was affirmed by the U.S. Supreme Court in 1990, over twenty years ago.
THE PROBLEM OF PHYSICIANS AS ASSISTED SUICIDE’S GATEKEEPERS
Proponents of legalized assisted suicide assert that laws and regulations will help prevent abuses. But the law’s only ironclad safeguard is the civil and criminal immunity granted to physicians. This is the lowest culpability standard possible, even below that of “negligence,” which is the minimum legal standard governing all other physician duties. The safeguards are set up to fail.
The individual’s request for assisted suicide is necessary, but not sufficient, to get it. An assisted suicide law sets up a double standard. Some people get suicide prevention, while others get suicide assistance, and doctors decide who gets what. In effect, assisted suicide laws give physicians the power to judge whether a particular suicide is “rational” or not, whether judgment is impaired or not, essentially based on the doctor’s prejudice or devaluation of the individual’s quality of life. The proposed law allows doctors to actively assist certain suicides based on their subjective, quality of life judgment about whose suicides are rational, and whose aren’t. This should be viewed as a clear cut and blatant violation of the Americans with Disabilities Act, which prohibits discrimination based on disability.
The proposed assisted suicide law is not a rights law for individuals but an immunity law for doctors. As Oregon reports on physician-assisted suicide make clear, the state has not been able to assess the extent of non-reporting or noncompliance with the law’s purported safeguards, but only obtains brief interviews with physicians who file their paperwork. There are no enforcement provisions in the law, and the reports themselves demonstrate that non-terminal people are receiving lethal prescriptions. The report shows that an unspecified number of people who actually had as long as three years to live, rather than the doctor-predicted six months, still received lethal prescriptions.
EXISTING FUTILITY POLICIES ALREADY INVOLVE INVOLUNTARY EUTHANASIA
Another big reason for concern about physicians as gatekeepers in the context of active assisted suicide is that they already engage in practices involving involuntary passive euthanasia under futility policies. A 1999 Journal of the American Medical Association article recommended that hospitals develop futility guidelines, whereby the hospital takes the patient and family through so-called hearings with ethics committees to persuade them to refuse treatment and, if that doesn’t work, they may just deny treatment anyway, as “futile.” Financial pressures have grown to the point that, increasingly, physicians make medical decisions to withhold treatment in open and direct opposition to the decision of the patient, their surrogate or their advance directive under what are called futility policies. How those types of policies are actually operating in Hawaii is not known. Of all the medical studies that get funding, the system doesn’t want to document the pressure being put on people’s whose health care needs are seen as too expensive or too much trouble.
Basically, the bioethicists have warped so-called “end-of-life” care into life-ending non-care for some people. The bioethicists have had hundreds of millions of grant dollars to work with, and they’ve used it to build public policies on guardianship and futile care into a steamroller that’s decimating the civil and constitutional rights of individuals whose lives are viewed as too marginal or costly to support. Once assisted suicide is legal, what is to prevent a shift toward involuntary practices in this context as well?
FALSE CHOICE, FORCED CHOICE
The third year Oregon case of Kate Cheney, reported in detail in the Oregonian (Barnett, E.H.“Is Mom Capable of Choosing to Die?”10/17/99), provides an important example of disability concerns. Mrs. Cheney’s physician was concerned that she had early dementia and that her daughter might be pressuring her toward assisted suicide, so he referred her for a psychological consultation. The first consultant found that Mrs. Cheney’s assisted suicide would not be voluntary because of pressure from her daughter, but a second referral concluded that her suicide would be voluntary in spite of pressure from her daughter. The lethal prescription was issued, but Mrs. Cheney didn’t take it until after her family put her in a nursing home for a week so they could have respite from care-giving. So Mrs. Cheney was presented with the following so called “choice”: be a burden on family, go to a nursing home, or accept physician assisted suicide.
Why, disabled people ask, do we see so many news stories lately about the burdens we impose on our caregivers, and so few articles about the nation’s ability to provide the long-term care services people really need and want? If the values of liberty dictate that society legalize assisted suicide, then our opponents should be asking to legalize it for everyone who asks for it, not just the devalued old, ill and disabled. Otherwise, what looks like freedom is really only discrimination.
An increasingly common form of domestic violence became the subject of news coverage in Hawaii in late 2009. Seventy-one-year-old Robert Yagi had tended daily to his terminally ill wife’s needs and kept her company since she was hospitalized in October that year. He faced a charge of attempted murder after allegedly firing a plastic flare gun at her.
This is fairly typical of the cases of successful or attempted murder/suicides seen in elderly people. The perpetrators are men. The women have significant health issues. There is no evidence that the wives in question wanted to die. Fortunately, she survived.
Nevertheless, that didn’t stop a spokesperson for the Hawaii Death with Dignity Society from attempting to exploit this case of domestic violence to promote his own organization’s agenda. Scott Foster, spokesman for the Hawaii Death with Dignity Society, asserted that Yagi was trying to end his wife’s suffering:
“When I saw it (on the news), I knew exactly what I was hearing,” he said. “We hear it all the time all over the world, rich people, poor people, people in pain, people suffering.”
There is no indication that Yagi’s wife wanted to be killed. Or does Mr. Foster believe there should be some sort of law allowing caregivers to order the euthanasia of their spouse or child? In fact, Foster is just doing what many representatives of pro-euthanasia groups have been doing for years – exploiting cases of domestic violence in which the victim is an elderly, disabled, ill woman by falsely framing them as acts of compassion.
We also think we should look at the fact that Oregon has one of the highest elder suicide rates in the country. Perhaps one of the most important questions raised by the Oregon experience is whether legalizing these individual assisted suicides has a broader social impact. Does it matter that a society accepts the disability-related reasons that people give for assisted suicide, the supposed loss of dignity or feelings of being a burden, then declares the suicide rational and provides the lethal means to complete it neatly? Does it harm people who are not deemed eligible for assisted suicide under the current version of the law but still experience the same sense of stress from illness? In the face of constant social messages that needing help in everyday living robs one of dignity and autonomy, makes one a burden and justifies state sponsored suicide, maybe Oregon’s elders have taken this disgusting and prejudicial message to heart.
What looks to some like a choice to die begins to look more like a duty to die to many disability activists.
Disability concerns are focused on the systemic implications of adding assisted suicide to the list of “medical treatment options” offered to seriously ill and disabled people. The disability rights movement has a long history of healthy skepticism toward medical professionals who are assisted suicide’s statutory gatekeepers. Our skepticism has grown to outright distrust since the values of managed care have dominated the health care scene. Anyone who asserts that money will not influence the treatment options offered to people, or that the impact of out-of-pocket costs on an individual’s family will not influence the individual’s feelings of being a burden, is at best unrealistic and at worst dishonest.
Pro-assisted suicide advocates call it “choice” but, with or without the purported safeguards, the so-called “autonomy” of assisted suicide is not being offered to healthy, non-disabled people. According to the U.S. Surgeon General, 16 of every 17 suicide attempts fail, and most don’t try again. (U.S. Public Health Service, “The Surgeon General’s Call to Action to Prevent Suicide,” Washington, D.C.: U.S. Government Printing Office, 1999.) Assisted suicide is not about parity in the opportunity for suicide. It’s about a government and a health care system guaranteeing that certain suicides don’t fail. That’s discrimination.
The wish for an easy and certain method of suicide under some circumstances is understandable. But that wish must be weighed against the certainty of increasingly routine medical killing of older and disabled people. Whether or not any one of us worries about inevitable medical abuses affecting us personally, the lives of those who will be affected are not an acceptable price for legalizing this practice.
Regardless of our abilities or disabilities, none of us should feel that we have to die to have dignity, that we have to die to be relieved of pain, or that we should die to stop burdening our families or society. For years you’ve heard from the right to die and the right to life movements. It’s time to listen to the disability rights movement. We offer a very different vision, as well as the practical know-how and leadership to help build a society and a long term care system in which no one feels like a burden, and everyone has real choice, not the false “choice” of assisted suicide.