Diane Coleman, J.D., M.B.A., President/CEO
Stephen Drake, M.S., Research Analyst
Not Dead Yet
497 State Street
Rochester, New York 14608
March 15, 2013
Not Dead Yet is a national, grassroots disability rights group that opposes legalization of assisted suicide and euthanasia as deadly forms of discrimination against old, ill and disabled people. Not Dead Yet helps organize and articulate opposition to these practices based on secular social justice arguments. Not Dead Yet demands the equal protection of the law for the targets of so called “mercy killing” whose lives are seen as worth-less.
An Analysis of Claims About Assisted Suicide in Oregon
Assisted suicide proponents claim that the data from Oregon on implementation of its assisted suicide law demonstrate that there are no problems. The Oregon “Death With Dignity Act” Reports, and now the Washington Reports as well, provide the appearance of scientific data, but little substance. They leave the most significant questions unasked and unanswered, mostly providing an annual excuse to announce through the press that everything’s fine, no problems, nothing to see.
According to Barbara Coombs Lee of the Compassion and Choices advocacy organization, “Thousands of patients find comfort every year knowing they do not have to suffer unbearably. No evidence exists of anyone harmed.” What she omits is that no evidence exists of anyone not harmed either. As the Reports have repeatedly admitted, the state is unable to assess the extent of under reporting and noncompliance with the law’s requirements (see, e.g. Second Year report, page 12).
Coombs Lee also claims that the years of report data have disproven what the opponents of legalized assisted suicide allegedly believed, i.e. that “catastrophe would befall Oregon and medical practice would suffer, but the opposite occurred: End-of-life care is robust, thriving and increasingly patient-centered in Oregon.” Others cite evidence and studies that contradict this claim. (See, e.g., Hendin and Foley, Physician Assisted Suicide in Oregon, Mich Law Rev June 2008.)
More importantly, in terms of state health care policy, the disability community has always been concerned about the fact that assisted suicide costs a lot less than ongoing health care. People used to claim that money would not be an issue, but people with disabilities have long been denied many forms of needed health care for cost reasons (e.g. therapies that maintain rather than improve function are almost always denied coverage; adequate home and community based long term care is often denied). People who claim that cost would never be an issue are naïve, privileged, dishonest or some combination of those.
Eventually, with increasingly tight state Medicaid budgets, the Barbara Wagner case came to light, involving a letter from the State of Oregon denying cancer treatment but offering assisted suicide. Coombs Lee doesn’t even try to navigate a discussion of this case, or the impact of the growing crisis in government funded health care on people’s so-called “choice” for assisted suicide.
Among the issues that are revealed in the Oregon Reports is the low incidence and downward trend in requests for psychiatric consultations by doctors who issue lethal prescriptions. The assisted suicide law uses the word “counseling” but defines it, not as some type of supportive talk therapy, but as consultation “for the purpose of determining that the patient is capable and not suffering from a psychiatric or psychological disorder or depression causing impaired judgment.” To clarify the legalistic language on this point: a person who has depression may still be eligible for assisted suicide if a physician or, upon referral, a psychiatrist or psychologist says it does not cause impaired judgment.
This so-called psychological “safeguard” avoids the bigger questions: who actually judges whether judgment is impaired, and how? In 92.5% of the Oregon cases, the physician who issued the lethal prescription rendered the determination that judgment was not impaired, even if they diagnosed or suspected depression. Studies show that most physicians aren’t able to diagnose depression. It appears to be anyone’s guess how they assess whether depression causes impaired judgment, and whether the desire for a lethal prescription is the product of rational or impaired judgment.
One might suspect that, for healthy people, the desire for a lethal prescription would be seen by many professionals, in and of itself, as proof of impaired judgment. In contrast, it appears that assisted suicide and euthanasia advocates have concluded that this would not be the case for people with significant health impairments or physical disabilities. From our perspective, this is a simple case of circular reasoning. In fact, there is no objective evidence to justify the conclusion that the suicidal impulses of ill and disabled people are any less the product of impaired judgment than those of physically healthy people.
This whole line of thinking in the psychology profession has been promoted by James Werth, a prominent pro-assisted suicide psychologist who has worked with Coombs Lee. He waves a professional wand over understandable human fears and feelings about aging, illness and disability so that these emotions can be classified as “rational” without addressing their roots in social conditioning, social stigma and societal neglect of people with expensive health and disability-related needs.
Disability advocates are also concerned about the role of financial issues in assisted suicide. While most of Oregon’s reported assisted suicides involved people with public or private insurance coverage, that statistic alone does not say anything about the insurance deductibles and co-payments involved, nor does it address the problem of long term care services which are not covered by Medicare or most private insurance plans.
Moreover, Coombs Lee’s assertion that “nothing could override doctors’ drive to cure disease and prolong life” is nothing short of ludicrous. Mortality statistics alone make it absolutely clear that many doctors’ drive to prolong life is easily overcome by lack of insurance coverage. It’s also well established that at least some doctors are willing to deny life-sustaining health care and overrule an individual’s expressed decision to receive care under futility policies based on subjective standards that amount to quality of life judgments.
It would be interesting to know a bit more about the doctors who issue lethal prescriptions in Oregon and Washington. It’s been reported that Compassion in Dying (which later merged with the Hemlock Society/End-of-Life Choices to become Compassion and Choices) initially claimed that 75% of the doctors issuing lethal prescriptions were affiliated with their organization (see Hendin & Foley, page 1628). But the extent to which “doctor shopping” for an assisted suicide prescription leads to Compassion and Choices’ doorstep is another issue not covered in the reports.
However, the reports do highlight some key disability issues. First, they document for each year the minimum and maximum number of days that lapsed between the date of an individual’s first request for assisted suicide and his or her death, from a low of 15 to a high of 1009. The Oregon Reports thus demonstrate that some people who received prescriptions were not terminal (i.e. lived longer than 180 days). Inexplicably, the number of people who did not die within six months of their request for assisted suicide is not in the Oregon Reports. There is no indication that the dispensing of lethal prescriptions to people who proved not to be “terminal” under the law’s six month criteria was ever the subject of discussion, investigation or remedial action in any form.
Coombs Lee says, “Our work to craft subsequent Death with Dignity Acts and aid-in-dying policies reflects the wisdom gained from practice.” To date, the biggest change in the crafted bill language showed up in the New Hampshire bill, which defined “terminal” to mean “an incurable and irreversible condition, for the end stage of which there is no known treatment which will alter its course to death, and which, in the opinion of the attending physician and consulting physician competent in that disease category, will result in premature death.” That would make a lot of us with disabilities “terminal” no matter how many years of life a doctor predicts we have left.
But the most significant disability issues revealed in the OR and WA Reports are the reasons physicians check off on the multiple choice reporting form for why a lethal prescription was requested, deemed appropriate and granted. Five of the seven reasons listed are disability issues, which appear to be accepted as appropriate without any need for definition, examination, question or required steps to address and alleviate them:
A concern about…
…the financial cost of treating or prolonging his or her terminal condition.
…the physical or emotional burden on family, friends, or caregivers.
…his or her terminal condition representing a steady loss of autonomy.
…the decreasing ability to participate in activities that made life enjoyable.
…the loss of control of bodily functions, such as incontinence and vomiting.
…inadequate pain control at the end of life.
…a loss of dignity.
Financial cost and pain are the least frequently selected reasons. The most frequently selected is loss of autonomy. From a disability rights perspective, nothing more clearly demonstrates the emptiness of the purported safeguards in the assisted suicide law. What the reporting form and physician responses show is that the law’s rather privileged proponents are determined to have doctors fully immunized for giving them an easy and aesthetic escape from disability. In fact, they are so determined that they have no problem with the certainty, based on the reports themselves, that non-terminal people have died from lethal prescriptions. They are so determined that they have no problem with the certainty that people have died without any evidence that an attempt was made to address their reasons for requesting the prescription by any means other than a lethal prescription (e.g. providing home care to someone who felt like a burden on family members).
Finally, as attorney Margaret Dore has pointed out, the law contains no standards that apply at the time the lethal dose is ingested, and the reports contain nothing to address the concern that a third party could administer the drugs without the individual’s consent. Given the documented prevalence in society of elder abuse by family members (see1998 and 2009 studies), and theunder-investigation of elder homicide, the reports leave a gaping hole in our knowledge of what happened to each individual.
Why Disability Activists Oppose Assisted Suicide As A Deadly Form of Discrimination
Lessons From Disability History: Prior to the formation of Not Dead Yet, disability activists opposed a number of so-called “right to die” court cases involving ventilator users who sought freedom from nursing homes, essentially arguing “give me liberty or give me death.” Society’s response, denying them freedom but granting them death, was a wake up call to the disability rights movement. (Herr, S.S., Bostrom, B.A, & Barton, R.S. (1992). No place to go: Refusal of life-sustaining treatment by competent persons with physical disabilities. Issues in Law & Medicine, 8 (1), 3-36.)
Suicide v. Assisted Suicide: It should be noted that suicide, as a solitary act, is not illegal in any state. Disability concerns are focused on the systemic implications of adding assisted suicide to the list of “medical treatment options” available to seriously ill and disabled people.
What’s Disability Got To Do With It?: The disability experience is that people who are labeled “terminal,” predicted to die within six months, are – or will become – disabled. It is well documented that the six month prediction called for in the Oregon and Washington laws is unreliable. The Oregon Reports demonstrate that some people who received prescriptions were not terminal (i.e. lived longer than six months).
Broad Agenda, Incremental Strategy, Not Just for the Terminally Ill: The political agenda of many assisted suicide organizations includes expansion of eligibility to people with incurable but not necessarily terminal conditions who feel that their suffering is unbearable (Baron, C.H. et al. (1996). Statute: A model act to authorize and regulate physician-assisted suicide. Harvard Journal on Legislation, 33 (1), p.11), without examining the cause of the suffering or whether it can be alleviated.
Physicians Are Assisted Suicide Gatekeepers: Anyone could ask for assisted suicide, but physicians decide who gets it. Physicians must predict, however unreliably, whether a person will die within six months. Physicians judge whether or not a particular request for assisted suicide is rational or results from impaired judgment.
Disability is the Issue: Although intractable pain has been emphasized as the primary reason for enacting assisted suicide laws, the top five reasons Oregon doctors actually report for issuing lethal prescriptions are the “loss of autonomy” (89.9%), “less able to engage in activities” (87.4%), “loss of dignity” (83.8%), “loss of control of bodily functions” (58.7%) and “feelings of being a burden” (38.3%). (Death With Dignity Act Annual Reports, http://www.oregon.gov/DHS/ph/pas/docs/yr11-tbl-1.pdf.). These are disability issues.
We Don’t Need To Die to Have Dignity: In a society that prizes physical ability and stigmatizes impairments, it’s no surprise that previously able-bodied people may tend to equate disability with loss of dignity. This reflects the prevalent but insulting societal judgment that people who deal with incontinence and other losses in bodily function are lacking dignity. People with disabilities are concerned that these psycho-social disability-related factors have become widely accepted as sufficient justification for assisted suicide.
Physicians Misjudge Quality of Life: In judging that an assisted suicide request is rational, essentially, doctors are concluding that a person’s physical disabilities and dependence on others for everyday needs are sufficient grounds to treat them completely differently than they would treat a physically able-bodied suicidal person. There’s an established body of research demonstrating that physicians underrate the quality of life of people with disabilities compared with our own assessments (Gerhart, K. A., Kozoil-McLain, J., Lowenstein, S.R., & Whiteneck, G.G. (1994). Quality of life following spinal cord injury: knowledge and attitudes of emergency care providers. Annals of Emergency Medicine, 23, 807-812; Cushman, L.A & Dijkers, M.P. (1990). Depressed mood in spinal cord injured patients: staff perceptions and patient realities, Archives of Physical Medicine and Rehabilitation, 1990, vol. 71, 191-196). Nevertheless, the physician’s ability to render these judgments accurately remains unquestioned. Steps that could address the person’s concerns, such as home care services to relieve feelings of burdening family, need not be explored. In this flawed world view, suicide
prevention is irrelevant.
Elder Abuse Equals Coercion: The prevalence of elder abuse has been one factor that raises concerns about the risk that older people with health impairments may be coerced into choosing assisted suicide. Disability abuse is similarly prevalent but less well known.
Door Open for Involuntary Euthanasia: Assisted suicide’s so-called “safeguards” apply when the lethal prescription is requested, but not when it is administered. Oregon’s law contains no requirement that the patient be capable or give consent when the lethal dose is administered. Someone other than the patient is allowed to provide the lethal dose.
Health Care Cuts Severe: For seniors and people with disabilities who depend on publicly funded health care, federal and state budget cuts pose a very large threat. Many people with significant disabilities, including seniors, are being cut from Medicaid programs that provide basic help to get out of bed, use the toilet and bathe.
Involuntary Denial of Care: Most people are shocked to learn that futility policies and statutes allow health care providers to overrule the patient, their chosen surrogate or their advance directive and withhold desired life-sustaining treatment. With the cause of death listed as the individual’s medical conditions, these practices are occurring without meaningful data collection, under the public radar.
Window Dressing Safeguards, Immunity Law for Physicians: The Oregon law grants civil and criminal immunity to physicians providing lethal prescriptions based on a stated claim of “good faith” belief that the person was terminal and acting voluntarily. This is the lowest culpability standard possible, even below that of “negligence,” which is the minimum standard theoretically governing other physician duties. The Oregon Reports also consistently admit that the state has no way to assess the extent of non-reporting or the extent of non-compliance with the law’s criteria.
ADA Discrimination: Legalized assisted suicide sets up a double standard: some people get suicide prevention while others get suicide assistance, and the difference between the two groups is the health status of the individual. This is blatant discrimination and a violation of the Americans with Disabilities Act (ADA).
National Disability Rights Organizations: A number of established national disability organizations have joined Not Dead Yet to adopt positions against assisted suicide, including ADAPT, the National Council on Independent Living, the National Spinal Cord Injury Association, the Disability Rights Education and Defense Fund, the National Council on Disability and others.
Unacceptable Losses: Disability is at the heart of the assisted suicide debate. Some people fear disability as a fate worse than death. Proponents of legalized assisted suicide are willing to treat lives ended through assisted suicide coercion and abuse as “acceptable losses” when balanced against their unwillingness to accept disability or responsibility for their own suicide.
The Oregon Case of Kate Cheney
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.
What Should We Learn From Elder Homicide/Suicides?
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.
Research shows that mutual suicide pacts and motivations of real compassion are rare in such murders or murder/suicides. Julie E. Malphurs and Donna Cohen have conducted several studies on this increasing type of domestic violence.
Donna Cohen, in a media release from Carers New Zealand, shared some of the research findings:
“These are not acts of love. They are not compassionate homicides. They are acts of desperation and depression, other forms of psychopathology, or domestic violence.”
Dr Cohen’s research indicates that older men – who almost always initiate the acts – routinely proceed without their wife’s knowledge or consent. She says true pacts occur in perhaps one half of 1 per cent of elder homicide-suicides.
Of the hundreds of homicide-suicide deaths in the US each year, the rate amongst over 55s is twice that of under 55s. Homicide-suicides now account for about three per cent of all suicides, and about 12 per cent of homicides in the older population.
“One of our most distressing findings is evidence that older women who are killed are not knowing or willing participants,” says Dr Cohen. “Often they are killed in their sleep or shot in the back of the head or chest.”
Her research indicates that about a third of elder homicide-suicides occur in a context of domestic violence, an ugly contrast to the Norman Rockwell image of loving clan matriarch and patriarch.
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.
 Washington Reports: http://www.doh.wa.gov/YouandYourFamily/IllnessandDisease/DeathwithDignityAct.aspx
 Hendin and Foley, Michigan Law Review: http://www.michiganlawreview.org/assets/pdfs/106/8/hendinfoley.pdf
 ABC News story on Barbara Wagner: http://abcnews.go.com/Health/story?id=5517492&page=1
 Oregon Death With Dignity Act: http://public.health.oregon.gov/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Pages/ors.aspx
 Study: Doctors Don’t Always Spot Depression: http://www.time.com/time/health/article/0,8599,1913312,00.htm
 Martyn, Susan R. and Bourguignon, Henry J., Physician’s Decisions About Patient Capacity: The Trojan Horse of Physician-Assisted Suicide (2000). Psychology, Public Policy and Law, Vol. 6, 2000. Available at SSRN: http://ssrn.com/abstract=1158077
 James Werth and “rational suicide”: http://books.google.com/books/about/Rational_Suicide.html?id=gMZU0cKqarAC
 Sorlie, et al., Mortality in the uninsured compared with that in persons with public and private health insurance, Arch Intern Med. 1994;154(21):2409-2416. doi:10.1001/archinte.1994.00420210037005, http://archinte.jamanetwork.com/article.aspx?articleid=619594
 Medical futility and end-of-life care (AMA): http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/opinion2037.page
 Compassion and Choices Timeline: http://www.compassionandchoices.org/who-we-are/timeline/
 Not Dead Yet blog on the New Hampshire bill: http://notdeadyet.org/2009/01/new-hampshire-poised-to-redefine.html
 Margaret Dore’s analysis of Oregon and Washington assisted suicide laws: http://www.choiceillusion.org/p/the-oregon-washington-assisted-suicide.html
 National Elder Abuse Incidence Study 1998: http://www.aoa.gov/AoARoot/AoA_Programs/Elder_Rights/Elder_Abuse/Index.aspx
 Under the Radar: New York State Elder Abuse Prevalence Study 2009: http://www.ocfs.state.ny.us/main/reports/Under%20the%20Radar%2005%2012%2011%20final%20report.pdf
 Autopsy Cutbacks Reveal “Gray Homicides”: http://canhr.org/newsroom/canhrnewsarchive/2011/NPR20110205.html
 Murder-Suicide, Donna Cohen: http://cfs.cbcs.usf.edu/_docs/news/Cohen_OttawaSun.pdf