Submitted by
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 USA
October 14, 2015
This statement was originally published by Not Dead Yet on their website.
Executive Summary
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 in the United States based on secular social justice arguments. Not Dead Yet also demands the equal protection of the law for the targets of so called “mercy killing” whose lives are seen as worth-less.
This submission to the External Panel on Options for a Legislative Response to Carter v. Canadawill focus on the Panel’s “key issue” in Terms of Reference Section 3.2 (c): “Risks to individuals and society associated with physician-assisted dying.” We will discuss the evidence coming from Oregon, the earliest of the four U.S. states to legalize assisted suicide, and outline the concerns of the disability community.
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. The realities of assisted suicide implementation in Oregon and three other U.S. states demonstrate the urgency of limiting the harms done by the Canadian Supreme Court ruling.
With that goal, we have two recommendations:
Adopt the detailed Goals, Principles and Recommendations submitted by the Council of Canadians with Disabilities (CCD),[1] which demonstrate a well-informed, evidence based and reasoned approach to reducing the dangers that will inevitably flow from implementation of Carter v. Canada. In order to completely incorporate CCD’s recommendations, direct consultation with a representative of CCD in drafting the legislation is necessary.
Provide training, guidance and encouragement to law enforcement agencies to exercise their existing level of authority to prosecute physicians and others involved in an assisted suicide or euthanasia death, while allowing those prosecuted to defend themselves by proving that the guidelines submitted by the Council of Canadians with Disabilities were met.
Introduction
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 in the United States based on secular social justice arguments. Not Dead Yet also demands the equal protection of the law for the targets of so called “mercy killing” whose lives are seen as worth-less.
This submission to the External Panel on Options for a Legislative Response to Carter v. Canada will focus on the Panel’s “key issue” in Terms of Reference Section 3.2 (c): “Risks to individuals and society associated with physician-assisted dying.”
In 1997, the U.S. Supreme Court ruled that a federal constitutional right to assisted suicide does NOT exist[2], but noted that individual states might be able to experiment with laws pertaining to the practice. Since then, four of the 50 states have legalized the practice by statute, beginning with Oregon in 1997 by ballot referendum. In addition, the high court in the state of Montana declined to find a state constitutional right to assisted suicide, but ruled that physicians may raise the defense of a victim’s consent if they are prosecuted for homicide in an assisted suicide case[3]. While we disagree with much of the Baxter court’s decision, it’s approach has the benefit of denying to those involved in the death of an old, ill or disabled person the blanket legal immunity that is characteristic of the four state statutes that have been enacted. This ruling forms the basis of our second recommendation to the External Panel.
An Analysis of Claims About Assisted Suicide in Oregon
In view of the frequent claims by assisted suicide proponents that Oregon’s experience demonstrates that there have been no problems of mistake, coercion or abuse of the state’s assisted suicide law, our analysis begins there.
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,[4] and now the Washington Reports[5] 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. Nevertheless, as the Reports repeatedly admitted, the state is unable to assess the extent of under reporting and noncompliance with the law’s requirements.[6]
Financial Pressures
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). 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. 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[7] case came to light, involving a letter from the State of Oregon denying cancer treatment but offering assisted suicide. While Oregon data show that most who reportedly die by assisted suicide had some type of health insurance, that does not say anything about whether they received timely and appropriate coverage of necessary medical treatments nor that the required out-of-pocket co-payments were affordable.
Moreover, a perhaps common misconception 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.[8]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[9] based on subjective standards that amount to quality of life judgments.
Failure to Address Depression and Other Psycho-Social Factors
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 with only 3% referred in 2014[10]. The assisted suicide law[11] uses the word “counseling” but defines it, not as some type of supportive talk therapy, suicide prevention or other treatment, 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 the optional 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 94.5% of the Oregon cases from 1997 through 2014, i.e. those with no psychological referral, 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.[12] 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.[13]
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. Specialists in the field of elder suicide prevention clearly believe that suicidal feelings in seniors who face illness and disability can be successfully addressed.[14]
This whole line of “rational suicide” thinking in the psychology profession has been promoted by James Werth[15], a prominent pro-assisted suicide psychologist. 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.
In addition, the individual who requests assisted suicide must be mentally capable and not coerced, but the Oregon statute offers no real protection. 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.
Doctor-Shopping for Pro-Assisted Suicide Physicians
It’s been reported that Compassion in Dying (which later merged with the Hemlock Society/End-of-Life Choices to become Compassion and Choices[16]) initially claimed that 75% of the doctors issuing lethal prescriptions were affiliated with their organization[17]. According to Dr. Elizabeth Goy of Oregon Health and Science University, Compassion in Dying (since renamed Compassion & Choices) sees “almost 90 percent of requesting Oregonians…”[18]
The public relations image that one’s own physician who has cared for you throughout a serious illness is not the predominant reality. In fact, the median duration of the patient’s relationship with the Oregon physicians who provide a lethal prescription is 13 weeks.[19] But the significant extent to which “doctor shopping” for an assisted suicide prescription leads to Compassion and Choices’ doorstep is another issue not covered in the reports.
Non-Terminal People Receive Lethal Prescriptions
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 days to a high of 1009[20]. The Oregon Reports thus demonstrate that some people who received prescriptions were not terminal (i.e. lived longer than the required six-month or 180 day prognosis). Inexplicably, the number of people who did not die within six months of their request for assisted suicide is not in the Oregon Reports. How many prognoses were incorrect? In the related area of hospice care where a six-month prognosis is needed to support government health care funding, about 15% of people outlive their prognosis. GET CITE In any case, 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 has been the subject of investigation or remedial action in any form.
As slippery as a “terminal” definition based on a six-month prognosis may be, one state has repeatedly proposed (but not passed) assisted suicide bills with a more expansive definition. Bills in New Hampshire have defined “terminal” [21] 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. Unfortunately, the population targeted by the Canadian Supreme Court appears to be even broader than that in the failed New Hampshire bills.
Disability Issues Are Central to Assisted Suicide Requests, But Remain Unaddressed
But the most significant disability issues revealed in the Oregon and Washington 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 Risks of Elder Abuse and Homicide
Finally, as attorney Margaret Dore has pointed out,[23] the Oregon 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, such as an heir or caregiver, could administer the drugs without the individual’s consent. Federal authorities estimate that one in ten elders are abused, most often by family and caregivers.[24] Given the documented prevalence in society of elder abuse by family members (see1998[25] and 2009[26] studies), and the under-investigation of elder homicide,[27] 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
In the U.S., a major struggle in the disability community is to expose the façade that assisted suicide is only for the terminally ill and not about disability. Supposedly, people with disabilities are not eligible in the four U.S. states that have legalized assisted suicide. Proponents refuse to recognize or acknowledge that virtually all of the people dying under these laws are disabled, some terminal and some not. Not Dead Yet (USA) has consistently asserted that assisted suicide laws violate the Americans With Disabilities Act[28] by establishing a system of unlawful discrimination whereby most suicidal people, those who reveal their intentions, receive suicide prevention services, while old, ill and disabled people receive suicide assistance instead. Indeed, we have filed amicus briefs in cases brought in the U.S. Supreme Court and several states making this discrimination argument.[29]
In contrast, the Canadian Supreme Court ruling openly targets people with nonterminal disabilities, making anyone eligible who “has a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.” The Canadian high court’s holding is a shockingly blatant mandate of lethal discrimination based on disability and should be rejected outright by any human society. It’s pronouncement of disability as a basis for suicide assistance is an intolerable outrage that endangers countless old, ill and disabled people, people who may be grieving the life changes that may come with disability, people who may feel like a burden on others due to a health care system that denies needed support, and people who face outright abuse by family or caregivers. The court’s ruling plainly demonstrates that bias against living with disabilities permeates society, even (or perhaps especially) the most educated, powerful and privileged among us.
What follows is a summary of issues and concerns that Not Dead Yet has raised.
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, but the basis for such a judgment is undefined and, thus, overly subjective and influenced by biased “quality of life” assessments.
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” (91.5%), “less able to engage in activities” (88.7%), “loss of dignity” (79.3%), “loss of control of bodily functions” (50.1%) and “feelings of being a burden” (40.0%). (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 under Oregon’s law. In this flawed worldview, 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. Nothing in the Oregon law prevents an abusive heir (someone who stands to inherit from the patient) or caregiver from suggesting assisted suicide to someone or witnessing the written request.
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. Nothing in the Oregon law prevents an abusive heir or caregiver from giving the drug, with or without the person’s consent — no witnesses are required at the death, so who would know?
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.[30] 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 legally 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 Autistic Self Advocacy Network, the National Council on Independent Living, the Disability Rights Education and Defense Fund, the National Council on Disability, United Spinal Association 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.
Approximately a year after the founding of Not Dead Yet in April 1996, the National Council on Disability, a quasi-governmental body formed to advise the President on matters of disability policy, issued a lengthy position paper opposing legalization of assisted suicide. The Council compellingly summarized its concerns as follows:
The dangers of permitting physician-assisted suicide are immense. The pressures upon people with disabilities to choose to end their lives, and the insidious appropriation by others of the right to make that choice for them are already prevalent and will continue to increase as managed health care and limitations upon health care resources precipitate increased “rationing” of health care services and health care financing.
People with disabilities are among society’s most likely candidates for ending their lives, as society has frequently made it clear that it believes they would be better off dead, or better that they had not been born. The experience in the Netherlands demonstrates that legalizing assisted suicide generates strong pressures upon individuals and families to utilize that option, and leads very quickly to coercion and involuntary euthanasia. If assisted suicide were to become legal, the lives of people with any disability deemed too difficult to live with would be at risk, and persons with disabilities who are poor or members of racial minorities would likely be in the most jeopardy of all.
If assisted suicide were to be legalized, the only way to ward off the most dire ramifications for people with disabilities would be to create stringent procedural prerequisites. But, to be effective, such procedural safeguards would necessarily sacrifice individual autonomy to the supervision of medical and legal overlords to an unacceptable degree — the cure being as bad as the disease.
For many people with disabilities, it is more often the discrimination, prejudice, and barriers that they encounter, and the restrictions and lack of options that this society has imposed, rather than their disabilities or their physical pain, that cause people with disabilities’ lives to be unsatisfactory and painful. The notion that a decision to choose assisted suicide must be preceded by a full explanation of the programs, resources, and options available to assist the patient if he or she does not decide to pursue suicide strikes many people with disabilities as a very shallow promise when they know that all too often the programs are too few, the resources are too limited, and the options are nonexistent. Society should not be ready to give up on the lives of its citizens with disabilities until it has made real and persistent efforts to give these citizens a fair and equal chance to achieve a meaningful life.
For these reasons, the Council has decided that at this time in the history of American society it opposes the legalization of assisted suicide. Current evidence indicates clearly that the interests of the few people who would benefit from legalizing physician-assisted suicide are heavily outweighed by the probability that any law, procedures, and standards that can be imposed to regulate physician-assisted suicide will be misapplied to unnecessarily end the lives of people with disabilities and entail an intolerable degree of intervention by legal and medical officials in such decisions. On balance, the current illegality of physician-assisted suicide is preferable to the limited benefits to be gained by its legalization. At least until such time as our society provides a comprehensive, fully-funded, and operational system of assistive living services for people with disabilities, this is the only position that the National Council on Disability can, in good conscience, support.[31]
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.[32] 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:
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[33].
Donna Cohen, in a media release from Carers New Zealand, shared some of the research findings:
Elder Suicide
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.
A recently published statistical study[34] comparing suicide rates in states that have legalized assisted suicide found that, controlling for various socioeconomic factors, unobservable state and year effects, and state-specific linear trends, legalizing assisted suicide was associated with a 6.3% increase in total suicides (including assisted suicides). This effect was larger in the individuals older than 65 years. The effect on non-assisted suicides alone was equivocal. The data, however, directly challenges evidence submitted to the Canadian courts and discussed in the study article, in that it disproves the theory that “legalization could lead to a reduction in total suicides and to a delay in those suicides that do occur.”
Conclusion
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 cost-cutting orientation of managed care has dominated the health care scene. Anyone who asserts that money will not influence the treatment options offered to people, or that the impact of uncovered out-of-pocket costs of illness and disability 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.[35] 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. What looks to some like a choice to die begins to look more like a duty to die to many disability activists.
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 lost due to mistake, coercion, abuse and outright homicide 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. The realities of assisted suicide implementation in Oregon and three other U.S. states demonstrate the urgency of limiting the harms done by the Canadian Supreme Court ruling.
With that goal, we have two recommendations:
Adopt the detailed Goals, Principles and Recommendations submitted by the Council of Canadians with Disabilities (CCD),[36] which demonstrate a well-informed, evidence based and reasoned approach to reducing the dangers that will inevitably flow from implementation ofCarter v. Canada. In order to completely incorporate CCD’s recommendations, direct consultation with a representative of CCD in drafting the legislation is necessary.
Provide training, guidance and encouragement to law enforcement agencies to exercise their existing level of authority to prosecute physicians and others involved in an assisted suicide or euthanasia death, while allowing those prosecuted to defend themselves by proving that the guidelines submitted by the Council of Canadians with Disabilities were met.
End Notes:
[1] https://www.dropbox.com/s/izn5zr6rrazq5lj/ccdpolicyfinal150924.docx?dl=0
[2] Vacco v. Quill, 521 U.S. 793 (1997); Washington v. Glucksberg, 521 U.S. 702 (1997).
[3] Baxter v. Montana, Mont. Sup. Ct., 2009 MT 449, 354 Mont. 234, 224 P.3d 1211 (2009)
[4] Oregon Death With Dignity Act Reports: http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/ar-index.aspx
[5] Washington Reports:http://www.doh.wa.gov/YouandYourFamily/IllnessandDisease/DeathwithDignityAct.aspx
[6] See, e.g., Second Year Oregon Death With Dignity Act Report, page 12, https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year2.pdf
[7] ABC News story on Barbara Wagner: http://abcnews.go.com/Health/story?id=5517492&page=1
[8] 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
[9] Medical Futility in End-of-Life Care, Journal of the American Medical Assn., Vol. 281, No. 10, page 937, March 10, 1999, http://www.thaddeuspope.com/images/CEJA_AMA_-_JAMA_-_1999.pdf
[10] Oregon Death With Dignity Act Report 2014, page 5: https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year17.pdf
[11] Oregon Death With Dignity Act: http://public.health.oregon.gov/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Pages/ors.aspx
[12] Study: Doctors Don’t Always Spot Depression:http://www.time.com/time/health/article/0,8599,1913312,00.htm
[13] 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
[14] See, e.g. Center for Elderly Suicide Prevention, http://www.ioaging.org/services/all-inclusive-health-care/psychological-services/center-for-elderly-suicide-prevention/; Older Americans Behavioral Health, Issue Brief 4: Preventing Suicide in Older Adults, http://www.aoa.gov/AoA_Programs/HPW/Behavioral/docs2/Issue%20Brief%204%20Preventing%20Suicide.pdf
[15] James Werth and “rational suicide”: http://books.google.com/books/about/Rational_Suicide.html?id=gMZU0cKqarAC
[16] Compassion and Choices Timeline: http://www.compassionandchoices.org/who-we-are/timeline/
[17] See Hendin and Foley, Physician-Assisted Suicide in Oregon: A Medical Perspective, Michigan Law Review (2008): http://dredf.org/wp-content/uploads/2012/08/Hendin-Foley-Michigan-Law-Review.pdf, page 1628.
[18] For more details and citations on the role of Compassion and Choices in Oregon assisted suicides, see M. Golden, Why Assisted Suicide Must Not Be Legalized, Section C. 1., entitled “Doctor Shopping: All Roads Lead to Rome”, http://dredf.org/public-policy/assisted-suicide/why-assisted-suicide-must-not-be-legalized/#marker46
[19] Oregon Death With Dignity Report, Year 17, page 6, https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year17.pdf
[20] Id.
[21] Death With Dignity Act, HB 1325, Chapter 137-L, Section L:2 XIII, http://www.gencourt.state.nh.us/legislation/2014/HB1325.html; Not Dead Yet blog on the New Hampshire bill: http://www.notdeadyet.org/2009/01/new-hampshire-poised-to-redefine.html
[22] Oregon Death With Dignity Report, Year 17, Id. at page 5.
[23] Margaret Dore’s analysis of Oregon and Washington assisted suicide laws: http://www.choiceillusion.org/p/the-oregon-washington-assisted-suicide.html
[24] U.S. Official: Elder Abuse is ‘Broad and Widespread,’ Healthline News, Jan. 27, 2014, http://www.healthline.com/health-news/senior-elder-abuse-more-common-than-you-think-012714
[25] National Elder Abuse Incidence Study 1998: http://www.aoa.gov/AoARoot/AoA_Programs/Elder_Rights/Elder_Abuse/Index.aspx
[26] 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
[27] Autopsy Cutbacks Reveal “Gray Homicides”: http://canhr.org/newsroom/canhrnewsarchive/2011/NPR20110205.html
[28] 42 U.S.C. § 12101, et seq.
[29] See e.g., Not Dead Yet et al. brief in Gonzales v. Oregon (http://www.notdeadyet.org/wp-content/uploads/2013/09/gonzales.html) and Morris v. Brandenburg (http://www.notdeadyet.org/ndy-et-al-amicus-brief-in-new-mexico-supreme-court-in-morris-v-brandenburg)
[30] Medical Futility in End-of-Life Care, Id.
[31] Assisted Suicide: A Disability Perspective, Position Paper, National Council on Disability, March 24, 1997, Marca Bristo, Chairperson, Written for the National Council on Disability by Professor Robert L. Burgdorf Jr., University of the District of Columbia School of Law http://www.ncd.gov/publications/1997/03241997
[32] More Men in the News – Killing Ailing Wives and Calling it “Mercy”, Dec. 11, 2009, http://www.notdeadyet.org/2009/12/more-men-in-news-killing-ailing-wives.html
[33] Murder-Suicide, Donna Cohen: http://cfs.cbcs.usf.edu/_docs/news/Cohen_OttawaSun.pdf
[34] Jones D and Paton D, “How Does Legalization of Physician-Assisted Suicide Affect Rates of Suicide?”, Southern Medical Journal & Volume 108, Number 10, page 599-604, October 2015.
[35] U.S. Public Health Service, “The Surgeon General’s Call to Action to Prevent Suicide,” Washington, D.C.: U.S. Government Printing Office, 1999, http://www.sprc.org/sites/sprc.org/files/library/surgeoncall.pdf.
[36] https://www.dropbox.com/s/izn5zr6rrazq5lj/ccdpolicyfinal150924.docx?dl=0
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 in the United States based on secular social justice arguments. Not Dead Yet also demands the equal protection of the law for the targets of so called “mercy killing” whose lives are seen as worth-less.
This submission to the External Panel on Options for a Legislative Response to Carter v. Canadawill focus on the Panel’s “key issue” in Terms of Reference Section 3.2 (c): “Risks to individuals and society associated with physician-assisted dying.” We will discuss the evidence coming from Oregon, the earliest of the four U.S. states to legalize assisted suicide, and outline the concerns of the disability community.
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. The realities of assisted suicide implementation in Oregon and three other U.S. states demonstrate the urgency of limiting the harms done by the Canadian Supreme Court ruling.
With that goal, we have two recommendations:
Adopt the detailed Goals, Principles and Recommendations submitted by the Council of Canadians with Disabilities (CCD),[1] which demonstrate a well-informed, evidence based and reasoned approach to reducing the dangers that will inevitably flow from implementation of Carter v. Canada. In order to completely incorporate CCD’s recommendations, direct consultation with a representative of CCD in drafting the legislation is necessary.
Provide training, guidance and encouragement to law enforcement agencies to exercise their existing level of authority to prosecute physicians and others involved in an assisted suicide or euthanasia death, while allowing those prosecuted to defend themselves by proving that the guidelines submitted by the Council of Canadians with Disabilities were met.
Introduction
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 in the United States based on secular social justice arguments. Not Dead Yet also demands the equal protection of the law for the targets of so called “mercy killing” whose lives are seen as worth-less.
This submission to the External Panel on Options for a Legislative Response to Carter v. Canada will focus on the Panel’s “key issue” in Terms of Reference Section 3.2 (c): “Risks to individuals and society associated with physician-assisted dying.”
In 1997, the U.S. Supreme Court ruled that a federal constitutional right to assisted suicide does NOT exist[2], but noted that individual states might be able to experiment with laws pertaining to the practice. Since then, four of the 50 states have legalized the practice by statute, beginning with Oregon in 1997 by ballot referendum. In addition, the high court in the state of Montana declined to find a state constitutional right to assisted suicide, but ruled that physicians may raise the defense of a victim’s consent if they are prosecuted for homicide in an assisted suicide case[3]. While we disagree with much of the Baxter court’s decision, it’s approach has the benefit of denying to those involved in the death of an old, ill or disabled person the blanket legal immunity that is characteristic of the four state statutes that have been enacted. This ruling forms the basis of our second recommendation to the External Panel.
An Analysis of Claims About Assisted Suicide in Oregon
In view of the frequent claims by assisted suicide proponents that Oregon’s experience demonstrates that there have been no problems of mistake, coercion or abuse of the state’s assisted suicide law, our analysis begins there.
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,[4] and now the Washington Reports[5] 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. Nevertheless, as the Reports repeatedly admitted, the state is unable to assess the extent of under reporting and noncompliance with the law’s requirements.[6]
Financial Pressures
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). 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. 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[7] case came to light, involving a letter from the State of Oregon denying cancer treatment but offering assisted suicide. While Oregon data show that most who reportedly die by assisted suicide had some type of health insurance, that does not say anything about whether they received timely and appropriate coverage of necessary medical treatments nor that the required out-of-pocket co-payments were affordable.
Moreover, a perhaps common misconception 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.[8]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[9] based on subjective standards that amount to quality of life judgments.
Failure to Address Depression and Other Psycho-Social Factors
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 with only 3% referred in 2014[10]. The assisted suicide law[11] uses the word “counseling” but defines it, not as some type of supportive talk therapy, suicide prevention or other treatment, 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 the optional 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 94.5% of the Oregon cases from 1997 through 2014, i.e. those with no psychological referral, 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.[12] 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.[13]
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. Specialists in the field of elder suicide prevention clearly believe that suicidal feelings in seniors who face illness and disability can be successfully addressed.[14]
This whole line of “rational suicide” thinking in the psychology profession has been promoted by James Werth[15], a prominent pro-assisted suicide psychologist. 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.
In addition, the individual who requests assisted suicide must be mentally capable and not coerced, but the Oregon statute offers no real protection. 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.
Doctor-Shopping for Pro-Assisted Suicide Physicians
It’s been reported that Compassion in Dying (which later merged with the Hemlock Society/End-of-Life Choices to become Compassion and Choices[16]) initially claimed that 75% of the doctors issuing lethal prescriptions were affiliated with their organization[17]. According to Dr. Elizabeth Goy of Oregon Health and Science University, Compassion in Dying (since renamed Compassion & Choices) sees “almost 90 percent of requesting Oregonians…”[18]
The public relations image that one’s own physician who has cared for you throughout a serious illness is not the predominant reality. In fact, the median duration of the patient’s relationship with the Oregon physicians who provide a lethal prescription is 13 weeks.[19] But the significant extent to which “doctor shopping” for an assisted suicide prescription leads to Compassion and Choices’ doorstep is another issue not covered in the reports.
Non-Terminal People Receive Lethal Prescriptions
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 days to a high of 1009[20]. The Oregon Reports thus demonstrate that some people who received prescriptions were not terminal (i.e. lived longer than the required six-month or 180 day prognosis). Inexplicably, the number of people who did not die within six months of their request for assisted suicide is not in the Oregon Reports. How many prognoses were incorrect? In the related area of hospice care where a six-month prognosis is needed to support government health care funding, about 15% of people outlive their prognosis. GET CITE In any case, 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 has been the subject of investigation or remedial action in any form.
As slippery as a “terminal” definition based on a six-month prognosis may be, one state has repeatedly proposed (but not passed) assisted suicide bills with a more expansive definition. Bills in New Hampshire have defined “terminal” [21] 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. Unfortunately, the population targeted by the Canadian Supreme Court appears to be even broader than that in the failed New Hampshire bills.
Disability Issues Are Central to Assisted Suicide Requests, But Remain Unaddressed
But the most significant disability issues revealed in the Oregon and Washington 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…
- (3.2%)…the financial cost of treating or prolonging his or her terminal condition.
- (40%)…the physical or emotional burden on family, friends, or caregivers.
- (91.5%)…his or her terminal condition representing a steady loss of autonomy.
- (88.7%)…the decreasing ability to participate in activities that made life enjoyable.
- (50.1%) …the loss of control of bodily functions, such as incontinence and vomiting.
- (24.7%)…inadequate pain control at the end of life.
- (79.3%)…a loss of dignity.
The Risks of Elder Abuse and Homicide
Finally, as attorney Margaret Dore has pointed out,[23] the Oregon 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, such as an heir or caregiver, could administer the drugs without the individual’s consent. Federal authorities estimate that one in ten elders are abused, most often by family and caregivers.[24] Given the documented prevalence in society of elder abuse by family members (see1998[25] and 2009[26] studies), and the under-investigation of elder homicide,[27] 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
In the U.S., a major struggle in the disability community is to expose the façade that assisted suicide is only for the terminally ill and not about disability. Supposedly, people with disabilities are not eligible in the four U.S. states that have legalized assisted suicide. Proponents refuse to recognize or acknowledge that virtually all of the people dying under these laws are disabled, some terminal and some not. Not Dead Yet (USA) has consistently asserted that assisted suicide laws violate the Americans With Disabilities Act[28] by establishing a system of unlawful discrimination whereby most suicidal people, those who reveal their intentions, receive suicide prevention services, while old, ill and disabled people receive suicide assistance instead. Indeed, we have filed amicus briefs in cases brought in the U.S. Supreme Court and several states making this discrimination argument.[29]
In contrast, the Canadian Supreme Court ruling openly targets people with nonterminal disabilities, making anyone eligible who “has a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.” The Canadian high court’s holding is a shockingly blatant mandate of lethal discrimination based on disability and should be rejected outright by any human society. It’s pronouncement of disability as a basis for suicide assistance is an intolerable outrage that endangers countless old, ill and disabled people, people who may be grieving the life changes that may come with disability, people who may feel like a burden on others due to a health care system that denies needed support, and people who face outright abuse by family or caregivers. The court’s ruling plainly demonstrates that bias against living with disabilities permeates society, even (or perhaps especially) the most educated, powerful and privileged among us.
What follows is a summary of issues and concerns that Not Dead Yet has raised.
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, but the basis for such a judgment is undefined and, thus, overly subjective and influenced by biased “quality of life” assessments.
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” (91.5%), “less able to engage in activities” (88.7%), “loss of dignity” (79.3%), “loss of control of bodily functions” (50.1%) and “feelings of being a burden” (40.0%). (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 under Oregon’s law. In this flawed worldview, 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. Nothing in the Oregon law prevents an abusive heir (someone who stands to inherit from the patient) or caregiver from suggesting assisted suicide to someone or witnessing the written request.
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. Nothing in the Oregon law prevents an abusive heir or caregiver from giving the drug, with or without the person’s consent — no witnesses are required at the death, so who would know?
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.[30] 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 legally 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 Autistic Self Advocacy Network, the National Council on Independent Living, the Disability Rights Education and Defense Fund, the National Council on Disability, United Spinal Association 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.
Approximately a year after the founding of Not Dead Yet in April 1996, the National Council on Disability, a quasi-governmental body formed to advise the President on matters of disability policy, issued a lengthy position paper opposing legalization of assisted suicide. The Council compellingly summarized its concerns as follows:
The dangers of permitting physician-assisted suicide are immense. The pressures upon people with disabilities to choose to end their lives, and the insidious appropriation by others of the right to make that choice for them are already prevalent and will continue to increase as managed health care and limitations upon health care resources precipitate increased “rationing” of health care services and health care financing.
People with disabilities are among society’s most likely candidates for ending their lives, as society has frequently made it clear that it believes they would be better off dead, or better that they had not been born. The experience in the Netherlands demonstrates that legalizing assisted suicide generates strong pressures upon individuals and families to utilize that option, and leads very quickly to coercion and involuntary euthanasia. If assisted suicide were to become legal, the lives of people with any disability deemed too difficult to live with would be at risk, and persons with disabilities who are poor or members of racial minorities would likely be in the most jeopardy of all.
If assisted suicide were to be legalized, the only way to ward off the most dire ramifications for people with disabilities would be to create stringent procedural prerequisites. But, to be effective, such procedural safeguards would necessarily sacrifice individual autonomy to the supervision of medical and legal overlords to an unacceptable degree — the cure being as bad as the disease.
For many people with disabilities, it is more often the discrimination, prejudice, and barriers that they encounter, and the restrictions and lack of options that this society has imposed, rather than their disabilities or their physical pain, that cause people with disabilities’ lives to be unsatisfactory and painful. The notion that a decision to choose assisted suicide must be preceded by a full explanation of the programs, resources, and options available to assist the patient if he or she does not decide to pursue suicide strikes many people with disabilities as a very shallow promise when they know that all too often the programs are too few, the resources are too limited, and the options are nonexistent. Society should not be ready to give up on the lives of its citizens with disabilities until it has made real and persistent efforts to give these citizens a fair and equal chance to achieve a meaningful life.
For these reasons, the Council has decided that at this time in the history of American society it opposes the legalization of assisted suicide. Current evidence indicates clearly that the interests of the few people who would benefit from legalizing physician-assisted suicide are heavily outweighed by the probability that any law, procedures, and standards that can be imposed to regulate physician-assisted suicide will be misapplied to unnecessarily end the lives of people with disabilities and entail an intolerable degree of intervention by legal and medical officials in such decisions. On balance, the current illegality of physician-assisted suicide is preferable to the limited benefits to be gained by its legalization. At least until such time as our society provides a comprehensive, fully-funded, and operational system of assistive living services for people with disabilities, this is the only position that the National Council on Disability can, in good conscience, support.[31]
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.[32] 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[33].
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.
Elder Suicide
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.
A recently published statistical study[34] comparing suicide rates in states that have legalized assisted suicide found that, controlling for various socioeconomic factors, unobservable state and year effects, and state-specific linear trends, legalizing assisted suicide was associated with a 6.3% increase in total suicides (including assisted suicides). This effect was larger in the individuals older than 65 years. The effect on non-assisted suicides alone was equivocal. The data, however, directly challenges evidence submitted to the Canadian courts and discussed in the study article, in that it disproves the theory that “legalization could lead to a reduction in total suicides and to a delay in those suicides that do occur.”
Conclusion
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 cost-cutting orientation of managed care has dominated the health care scene. Anyone who asserts that money will not influence the treatment options offered to people, or that the impact of uncovered out-of-pocket costs of illness and disability 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.[35] 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. What looks to some like a choice to die begins to look more like a duty to die to many disability activists.
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 lost due to mistake, coercion, abuse and outright homicide 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. The realities of assisted suicide implementation in Oregon and three other U.S. states demonstrate the urgency of limiting the harms done by the Canadian Supreme Court ruling.
With that goal, we have two recommendations:
Adopt the detailed Goals, Principles and Recommendations submitted by the Council of Canadians with Disabilities (CCD),[36] which demonstrate a well-informed, evidence based and reasoned approach to reducing the dangers that will inevitably flow from implementation ofCarter v. Canada. In order to completely incorporate CCD’s recommendations, direct consultation with a representative of CCD in drafting the legislation is necessary.
Provide training, guidance and encouragement to law enforcement agencies to exercise their existing level of authority to prosecute physicians and others involved in an assisted suicide or euthanasia death, while allowing those prosecuted to defend themselves by proving that the guidelines submitted by the Council of Canadians with Disabilities were met.
End Notes:
[1] https://www.dropbox.com/s/izn5zr6rrazq5lj/ccdpolicyfinal150924.docx?dl=0
[2] Vacco v. Quill, 521 U.S. 793 (1997); Washington v. Glucksberg, 521 U.S. 702 (1997).
[3] Baxter v. Montana, Mont. Sup. Ct., 2009 MT 449, 354 Mont. 234, 224 P.3d 1211 (2009)
[4] Oregon Death With Dignity Act Reports: http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/ar-index.aspx
[5] Washington Reports:http://www.doh.wa.gov/YouandYourFamily/IllnessandDisease/DeathwithDignityAct.aspx
[6] See, e.g., Second Year Oregon Death With Dignity Act Report, page 12, https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year2.pdf
[7] ABC News story on Barbara Wagner: http://abcnews.go.com/Health/story?id=5517492&page=1
[8] 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
[9] Medical Futility in End-of-Life Care, Journal of the American Medical Assn., Vol. 281, No. 10, page 937, March 10, 1999, http://www.thaddeuspope.com/images/CEJA_AMA_-_JAMA_-_1999.pdf
[10] Oregon Death With Dignity Act Report 2014, page 5: https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year17.pdf
[11] Oregon Death With Dignity Act: http://public.health.oregon.gov/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Pages/ors.aspx
[12] Study: Doctors Don’t Always Spot Depression:http://www.time.com/time/health/article/0,8599,1913312,00.htm
[13] 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
[14] See, e.g. Center for Elderly Suicide Prevention, http://www.ioaging.org/services/all-inclusive-health-care/psychological-services/center-for-elderly-suicide-prevention/; Older Americans Behavioral Health, Issue Brief 4: Preventing Suicide in Older Adults, http://www.aoa.gov/AoA_Programs/HPW/Behavioral/docs2/Issue%20Brief%204%20Preventing%20Suicide.pdf
[15] James Werth and “rational suicide”: http://books.google.com/books/about/Rational_Suicide.html?id=gMZU0cKqarAC
[16] Compassion and Choices Timeline: http://www.compassionandchoices.org/who-we-are/timeline/
[17] See Hendin and Foley, Physician-Assisted Suicide in Oregon: A Medical Perspective, Michigan Law Review (2008): http://dredf.org/wp-content/uploads/2012/08/Hendin-Foley-Michigan-Law-Review.pdf, page 1628.
[18] For more details and citations on the role of Compassion and Choices in Oregon assisted suicides, see M. Golden, Why Assisted Suicide Must Not Be Legalized, Section C. 1., entitled “Doctor Shopping: All Roads Lead to Rome”, http://dredf.org/public-policy/assisted-suicide/why-assisted-suicide-must-not-be-legalized/#marker46
[19] Oregon Death With Dignity Report, Year 17, page 6, https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year17.pdf
[20] Id.
[21] Death With Dignity Act, HB 1325, Chapter 137-L, Section L:2 XIII, http://www.gencourt.state.nh.us/legislation/2014/HB1325.html; Not Dead Yet blog on the New Hampshire bill: http://www.notdeadyet.org/2009/01/new-hampshire-poised-to-redefine.html
[22] Oregon Death With Dignity Report, Year 17, Id. at page 5.
[23] Margaret Dore’s analysis of Oregon and Washington assisted suicide laws: http://www.choiceillusion.org/p/the-oregon-washington-assisted-suicide.html
[24] U.S. Official: Elder Abuse is ‘Broad and Widespread,’ Healthline News, Jan. 27, 2014, http://www.healthline.com/health-news/senior-elder-abuse-more-common-than-you-think-012714
[25] National Elder Abuse Incidence Study 1998: http://www.aoa.gov/AoARoot/AoA_Programs/Elder_Rights/Elder_Abuse/Index.aspx
[26] 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
[27] Autopsy Cutbacks Reveal “Gray Homicides”: http://canhr.org/newsroom/canhrnewsarchive/2011/NPR20110205.html
[28] 42 U.S.C. § 12101, et seq.
[29] See e.g., Not Dead Yet et al. brief in Gonzales v. Oregon (http://www.notdeadyet.org/wp-content/uploads/2013/09/gonzales.html) and Morris v. Brandenburg (http://www.notdeadyet.org/ndy-et-al-amicus-brief-in-new-mexico-supreme-court-in-morris-v-brandenburg)
[30] Medical Futility in End-of-Life Care, Id.
[31] Assisted Suicide: A Disability Perspective, Position Paper, National Council on Disability, March 24, 1997, Marca Bristo, Chairperson, Written for the National Council on Disability by Professor Robert L. Burgdorf Jr., University of the District of Columbia School of Law http://www.ncd.gov/publications/1997/03241997
[32] More Men in the News – Killing Ailing Wives and Calling it “Mercy”, Dec. 11, 2009, http://www.notdeadyet.org/2009/12/more-men-in-news-killing-ailing-wives.html
[33] Murder-Suicide, Donna Cohen: http://cfs.cbcs.usf.edu/_docs/news/Cohen_OttawaSun.pdf
[34] Jones D and Paton D, “How Does Legalization of Physician-Assisted Suicide Affect Rates of Suicide?”, Southern Medical Journal & Volume 108, Number 10, page 599-604, October 2015.
[35] U.S. Public Health Service, “The Surgeon General’s Call to Action to Prevent Suicide,” Washington, D.C.: U.S. Government Printing Office, 1999, http://www.sprc.org/sites/sprc.org/files/library/surgeoncall.pdf.
[36] https://www.dropbox.com/s/izn5zr6rrazq5lj/ccdpolicyfinal150924.docx?dl=0
Take heed Canadian lawmakers and Canadian Panel members appointed to implement the Supreme Court's directive to This is the most comprehensive paper supporting The prevention of euthanasia and assisted suicide.
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