Submission to the New Zealand Parliament’s Justice Committee
re: End of Life Choice Bill
March 5, 2018
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. Formed by disabled people in 1996, 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. Since our founding, autonomous sister organizations have been formed in a number of other countries, including the United Kingdom, Canada and New Zealand.
This submission concerns the New Zealand Parliament’s End of Life Choice bill. We strongly oppose this bill, which supports assisted suicide and euthanasia, thus proposing to carve older, ill and disabled people out of equal protection of the law. This submission will first examine the social-political context in which this and similar bills arise. Next, we will discuss the evidence from Oregon, the earliest of the five U.S. states and District of Columbia to legalize assisted suicide, focusing on official data that substantiates critics’ concerns. Finally, we will outline specific concerns of the disability community, which have resulted in all major U.S. national disability organizations that have taken a position on the issue deciding to oppose assisted suicide laws.
Regarding the specific provisions of New Zealand’s End of Life Choice bill, we fully endorse the submission of our Canadian sister organization, Toujours Vivant-Not Dead Yet, which provides a section by section analysis of the bill in Part 3 of its submission. We will not repeat that here.
The most horrific reality of this bill is that no disabled person, whether their condition is new or long standing, and no seriously ill person, whether their condition is chronic or terminal, can allow common fears, sadness, depression or despair overtake them, because if they do, the government and medical system will be ready, willing and able to speak the words and check off the boxes required to kill them. This is blatant discrimination at its most deadly, cruel bigotry dressed up to look like compassion when it is really contempt.
Disabled people demand equality under the law. 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 proposed End of Life Choice bill must be rejected.
The Social and Political Context In Which Assisted Suicide and Euthanasia Bills Arise
There are four key social-political factors that are central to the assisted suicide and euthanasia issue, but are too often ignored or downplayed:
- Healthcare cost cutting
- Fear of the ageing demographic
- Fear of disability
- Deceptive political framing
Healthcare Cost Cutting
Never has there been more hand wringing over the growing costs of healthcare than we see today. On a worldwide basis, whether paid by private insurance or government programs, there are worried statements that this growth is not sustainable, all coming from professionals who have healthcare themselves. Meanwhile, those who struggle to get the healthcare they need face the threat of more cuts. In the U.S., this led to repeated protests and arrests of disability activists throughout last summer as conservatives proposed massive life threatening healthcare cuts.[1]
When legislators hear that people are dying in pain, the first thing they should ask is why have they not received the palliative care they need to relieve their pain. In these times, no one need die in pain, even in the rare cases in which sedation is the only method that works.[2] When legislators hear that people feel like a burden on loved ones, they should ask why sufficient home care supports are not provided to meet their needs.
Instead of ensuring that people receive the healthcare they need, too many legislators are asking why doctors can’t speed patients to an early death. A chapter called “The Unspoken Argument” in a book co-authored by Derek Humphrey, co-founder of the Hemlock Society and long time leader within the World Federation of Right to Die Societies, stated:
“Similar to other social issues, the right-to-die movement has not arisen separate and distinct from other concurrent developments of our time. In attempting to answer the question Why Now?, one must look at the realities of the increasing cost of health care in an aging society, because in the final analysis, economics, not the quest for broadened individual liberties or increased autonomy, will drive assisted suicide to the plateau of acceptable practice.” Humphrey and Clement (2000) Freedom to Die: people, politics, and the right-to-die movement. (Emphasis added.)
This is an unacceptable basis for public policy decisions.
Fear of the Aging Demographic
The aging population is a major source of concern about healthcare costs. As stated in United Nations Report on World Population Ageing (2015)[3]:
The prevalence of chronic illness and the disabilities they cause are strongly associated with age. For this reason, the very rapid current and future growth in the number of older persons foretells a surge in the demand for care aimed at the prevention and treatment of the health conditions they face. (Page 94.)
Nevertheless, the cost fears that drive policy makers may not be well founded. The same report cautioned:
What population ageing will mean for national health care expenditures is not immediately clear (WHO, 2015). . . . If population ageing were the major driver of increases in health costs, then the largest increases in per capita health expenditures would be observed in the countries that were ageing the fastest. By and large, this is not the case. (Page 98.)
Policy makers should not let vague and unsubstantiated fears about the ageing demographic drive their decisions. Removing protections against medical killing is not an acceptable answer to these fears.
Fear of Disability
Lurking behind the talking points promoting assisted suicide and euthanasia as acts of “compassion” undertaken to “relieve suffering” is society’s abject fear, terror really, of disability. The prevalence of this fear, and its expression in the context of assisted suicide and euthanasia, has come to be described by disability advocates as the bigoted and disgusting message “better dead than disabled.” It permeates society and even the arts. For example, the 2016 movie “Me Before You”, about a wealthy man with a loving girlfriend who nevertheless sought death at the Swiss Dignitas clinic because he was quadriplegic, drew worldwide criticism and protests from the disability community.[4]
Countless proponents of legalizing assisted suicide and euthanasia have written about their fears of dependence on others. They have fully internalized society’s “better dead than disabled” message and convinced many that an early death is a rational response that calls for public agreement and active facilitation. Too often, socially privileged members of the media and public have unquestioningly absorbed the same message, rather than listened to those of us who know first hand how to live interdependent lives while sustaining our autonomy and dignity. We are the experts in handling the disabilities others fear, and policy makers must listen to us.
Deceptive Political Framing
Legalization of assisted suicide and (active) euthanasia has been portrayed as a progressive cause that is only opposed by religious conservatives. This is a false framing.
The World Federation of Right to Die Societies has been very active in Australia and New Zealand. In New Zealand, the World Federation member is End-of-Life Choice, Voluntary Euthanasia Society of New Zealand Inc.[5]
The World Federation’s “Manifesto” calls for these practices to be legalized for “[a]ll competent adults – regardless of their nationalities, professions, religious beliefs, and ethical and political views – who are suffering unbearably from incurable illnesses . . ..”[6] In most jurisdictions, including New Zealand, euthanasia advocates have openly included eligibility for people with disabilities (“a grievous and irremediable medical condition” and “is in an advanced state of irreversible decline in capability”), yet they continue to deny and marginalize the outspoken opposition of the progressive disability rights movement.
How has “End-of-Life Choice, Voluntary Euthanasia Society of New Zealand Inc” gained consideration of its dangerous proposals? Perhaps, after hearing of Australia’s Philip Nitschke’s sleek new euthanasia machine with a detachable coffin,[7] anything less outrageous looks reasonable? In any case, it is difficult to understand policy makers’ blatant disregard for the outspoken opposition of one of the largest minority groups in any country, people with disabilities.
An Analysis of Claims About Assisted Suicide in Oregon
In 1997, the U.S. Supreme Court ruled that a federal constitutional right to assisted suicide does NOT exist[8], but noted that individual states might be able to experiment with laws pertaining to the practice. Since 1994, and despite over 200 attempts in over 36 states,[9] only five of the 50 states and the District of Columbia 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[10]. 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 “good faith” legal immunity that is the core provision of the state statutes that have been enacted. This is one of the many problems with the New Zealand bill as well.
In view of the frequent claims by assisted suicide proponents that Oregon’s experience demonstrates that there have been no problems with mistake, coercion or abuse of the state’s assisted suicide law, our analysis begins there.
The Oregon “Death With Dignity Act” Reports,[11] and now the Washington Reports[12] 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.[13]
Financial Pressures
In terms of U.S. 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 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 services and supports are 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.
Eventually, with increasingly tight state Medicaid budgets, the Barbara Wagner[14] case came to light, involving a letter from the State of Oregon denying cancer treatment but offering assisted suicide. Additional similar cases have come to light since then.[15] 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, it’s well established that at least some doctors are willing to deny life-sustaining health care under futility policies[16] and overrule an individual’s expressed decision to receive care based on subjective standards that amount to quality of life judgments. In other words, increasingly, the wish to die may receive more support than the wish to live.
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 3.5% referred in 2017[17]. The assisted suicide law[18] 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. The New Zealand bill is similarly vague and cavalier about psychological issues. It’s enough that a doctor feels that the patient has basic capacity.
This so-called psychological “safeguard” avoids the bigger questions: who actually judges whether judgment is impaired, and how? In 95% of the Oregon cases from 1997 through 2017, 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.[19] 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.[20]
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.[21] Yet the experience of such specialists is disregarded in the assisted suicide debate.
This whole line of “rational suicide” thinking in the psychology profession has been promoted by James Werth[22], 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 supposedly not be coerced, but the Oregon statute offers no real protection. The law requires four people to certify that the person is not being coerced to sign the assisted suicide request form: the prescribing doctor, second opinion doctor, and two witnesses.
The Oregon state reports say that the median duration of the physician patient relationship is only 13 weeks.[23] In most cases, the prescribing doctor is a doctor referred by assisted suicide proponent organizations.[24] The witnesses on the assisted suicide request form[25] need not know the person either. The form says that if the person is not known to the witness, then the witness can confirm identity by checking the person’s ID.
So neither the doctors nor witnesses need to actually know the person well enough to “certify” that they are not being coerced, such as by the threat of nursing home placement.
The third year Oregon case of Kate Cheney, reported in detail in the Oregonian newspaper (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.
Federal authorities estimate that one in ten elders are abused, most often by family and caregivers.[26] Given the documented prevalence in society of elder abuse by family members (see 1998[27] and 2009[28] studies), and the under-investigation of elder homicide,[29] the reports leave a gaping hole in our knowledge of what happened to each individual.
By requiring a doctor to dispense the lethal drugs more directly, the New Zealand bill may reduce the risk of outright homicide by family members, but the authority figure of the doctor dramatically increases the social expectation and psychological pressure on the patient to go through with it.
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) initially claimed that 75% of the doctors issuing lethal prescriptions were affiliated with their organization[30]. 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…”[31]
The public relations image that one’s own physician who has cared for you throughout a serious illness is not the predominant reality. As noted above, the median duration of the patient’s relationship with the Oregon physicians who provide a lethal prescription is 13 weeks. 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 official state reports.
The New Zealand bill goes a few steps further by establishing a government program for facilitating doctor shopping.
Non-Terminal People Receive Lethal Prescriptions in Oregon
The Oregon reports 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 14 days to a high of 1009[32]. In 2017, at least one person lived 603 days. In every year except the first year, the upper end of the range is significantly longer than the six months or 180 days the law defines as the basis for eligibility as “terminal”. 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). How many prognoses were incorrect? Inexplicably, the number of people who did not die within six months of their request for assisted suicide is not in the Oregon Reports, and the underlying data is destroyed annually. Moreover, there will never be a way to know how many people would not have died within six months if they had not taken the lethal prescription. 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. 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 requirement has been the subject of investigation or remedial action in any form.
In addition, the doctor need not consider the likely impact of medical treatment in terms of survival. Many conditions will or may become terminal if certain medications or routine treatments are discontinued. The state reports that non-cancer conditions found eligible for assisted suicide has grown over the years, to include: neurological disease, respiratory disease, heart/circulatory disease, infectious disease, gastrointestinal disease, endocrine/metabolic disease and, in the category labeled “other”, arthritis, arteritis, sclerosis, stenosis, kidney failure, and musculoskeletal systems disorders.[33]
It should also be noted that the primary attending physician who determines diagnosis and prognosis is not required to be an expert in the disease condition involved.
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. (Disturbingly, the New Zealand bill does not ask for any information about the patient’s reasons.) The top five of the seven reasons listed on the Oregon reports 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…
(43.7%)…the physical or emotional burden on family, friends, or caregivers.
(90.9%)…his or her terminal condition representing a steady loss of autonomy.
(89.5%)…the decreasing ability to participate in activities that made life enjoyable.
(45.7%) …the loss of control of bodily functions, such as incontinence and vomiting.
(75.7%)…a loss of dignity.
The indicated percentages are the percent of persons dying under the law for whom doctors reported that reason for the assisted suicide request across all years from 1997-2017.[34] Concerns about financial cost and pain are the least frequently selected reasons. The top five reasons all relate to disability concerns. 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).
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 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[35] 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.[36]
Recently, Victoria passed an assisted suicide/euthanasia bill that allowed a 12-month prognosis for people with neurodegeneative conditions, such as that experienced by the author of this submission. A letter to the Victorian Parliament stated, in part:
At the age of six I was misdiagnosed as having muscular dystrophy and my parents were told that I would die by the age of 12. A few years later I was re-diagnosed with spinal muscular atrophy, a progressive neuromuscular condition which has a longer lifespan. Since age eleven, I have used a motorized wheelchair. Beginning 17 years ago I have used breathing support at night.
I am now age 64. Four years ago, the doctors determined that I do not have spinal muscular atrophy, and I am now diagnosed with another neuromuscular label, congenital myopathy. About two and a half years ago, I went into respiratory failure. Since then I have used breathing support most of the day as well as at night. If I did not use this support, I would likely have respiratory failure within a few days at most.
Throughout my adult life, I have worked full time, first as an attorney and then directing nonprofit disability related organizations. Over the last two years, I have continued to run Not Dead Yet, which has four staff and numerous volunteers across the country. I have spoken at conferences, published articles, been interviewed by at least 20 press outlets, submitted testimony in legislatures, and provided the day-to-day management an organization requires.
As a severely disabled person who depends on life-sustaining treatment, I would qualify for assisted suicide at any time if I lived where assisted suicide is legal. If I became despondent, for example if I lost my husband or my job, and decided that I wanted to die, I would not be treated the same as a nondisabled and healthy person who despaired over divorce or job loss. Where assisted suicide is legal, I would be treated completely differently due to my condition.[37]
The New Zealand bill is more blatant in providing explicit eligibility for disabled people who are not “terminal”, but the fundamental discrimination is the same: a two-tiered system in which some people get suicide prevention while others – devalued older, ill and disabled people – get suicide assistance.
In addition to the issues discussed so far, the following is a summary of other disability 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 the home care needed to give them freedom from nursing homes 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 prohibited by any U.S. statute. 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.
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.
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.
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.[38] 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.
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.[39]
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.
National Council on Disability
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, Congress and federal agencies 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.[40]
NCD affirmed this position in a letter to certain members of Congress concerning a proposed Congressional Resolution[41] opposing legalization of assisted suicide introduced on October 26, 2017. NCD stated, in part:
NCD has always stood up for the right of people with disabilities to exercise self-determination and personal autonomy, but the dignity of people with disabilities should be affirmed not in the manner of their death, but in the value placed on their lives. The appropriate response from society to the needs of people with disabilities is to provide supports that enable them to live independently in the community and to ensure that the services, supports and treatments they need to enhance their quality of life are available and within the control of the recipient so that they can lead fulfilling lives even as they face serious health challenges. This non-binding resolution details the inherent shortcomings of physician assisted suicide laws. Not only do they fail to provide sufficient protections against coercion and other abuses that rob individuals of the ability to make informed end-of-life decisions, they often require doctors to make impossible prognostications regarding both the length and likely quality of a patient’s life. These decisions are also often lacking in transparency.
NCD welcomes this sense of Congress which fundamentally concurs with the position taken by NCD for decades, that policies or practices that support, encourage, or facilitate assisted suicide undermine the healthcare system by asking physicians to be willing to violate their Hippocratic Oath, to “Do No Harm” and poses a higher risk of deadly harm to individuals with disabilities.[42]
U.S. Congressional Resolution Against Legalizing Assisted Suicide (Proposed)
As noted in the previous section, on September 26, 2017, a Resolution[43] expressing opposition to legalization of assisted suicide was introduced in the U.S. Congress by a bipartisan group of ten legislators, five Democrats and five Republicans. The Resolution language includes twenty-two “Whereas” clauses detailing concerns about legislation and public policy authorizing the practice of assisted suicide, including but not limited to the following:
- Whereas society has a longstanding policy of supporting suicide prevention such as through the efforts of many public and private suicide prevention programs, the benefits of which could be denied under a public policy of assisted suicide;
- Whereas assisted suicide most directly threatens the lives of people who are elderly, experience depression, have a disability, or are subject to emotional or financial pressure to end their lives;
- Whereas the United States Supreme Court has ruled twice (in Washington v. Glucksberg and Vacco v. Quill) that there is no constitutional right to assisted suicide, that the Government has a legitimate interest in prohibiting assisted suicide, and that such prohibitions rationally relate to “protecting the vulnerable from coercion” and “protecting disabled and terminally ill people from prejudice, negative and inaccurate stereotypes, and ‘societal indifference;’”
- Whereas a handful of States have authorized assisted suicide, but over 30 States have rejected over 200 attempts at legalization since 1994;
- Whereas States that authorize assisted suicide for terminally ill patients do not require that such patients receive psychological screening or treatment, though studies show that the overwhelming majority of patients contemplating suicide experience depression;
- Whereas such State laws do not prevent family members, heirs, or health care providers from pressuring patients to request assisted suicide;
- Whereas reporting requirements vary by State, but when required, rely on prescribing physicians or dispensing pharmacists to self-report;
- Whereas there is an astounding lack of transparency in the practice of assisted suicide to the extent that State health departments and other authorities admittedly have no method of knowing if it is being practiced within the bounds of State laws and have no funding or authority to make such a determination;
- Whereas some State laws actively conceal assisted suicide by directing the physician to list the cause of death as the underlying condition without reference to death by suicide;
- Whereas the cost of lethal medication is far less costly than many life-saving treatments, which threatens to restrict treatment options, especially for disadvantaged and vulnerable persons, as has happened in several known cases and presumably many more unknown in which insurers have denied and/or delayed coverage for life-saving care while offering to cover assisted suicide; . . .
The concerns expressed are applicable to all countries that have allowed the practice of assisted suicide and euthanasia. In fact, though beyond the scope of this submission but officially documented in the Netherlands, in some countries euthanasia is practiced without consent in a significant number of cases.
Elder Suicide
While the rates of elder suicide are rising nationally, it should be noted that Oregon has one of the highest suicide rates in the country.[44] 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 residents have taken this disgusting and prejudicial message to heart.
A recently published statistical study[45] 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.
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.[46] 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.
[1] “Arresting Disabled Bodies,” New Republic, Sept. 28, 2017, https://newrepublic.com/article/145072/arresting-disabled-bodies; “Dozens arrested after disability advocates protest at McConnell’s office,” CNN, June 22, 2017, https://www.cnn.com/2017/06/22/politics/protests-mitch-mcconnell-office-health-care-bill/index.html; “If You Celebrated the Health Care Vote Last Week, You Should Probably Thank a Disability Activist,” Elle, Aug. 1, 2017, https://www.elle.com/culture/career-politics/news/a47075/disability-activist-health-care/?src=social-email
[2] “Ethical Decision Making With End-of-Life Care: Palliative Sedation and Withholding or Withdrawing Life-Sustaining Treatments,” Mayo Clinic Proceedings, Oct. 2010, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2947968/
[3] http://www.un.org/en/development/desa/population/publications/pdf/ageing/WPA2015_Report.pdf
[4] “VIDEO: The Disability Community Responds to Me Before You movie,” June 28, 2016, embedded video link, http://notdeadyet.org/2016/06/video-the-disability-community-responds-to-me-before-you-movie.html
[5] https://www.worldrtd.net/fr/member-organizations
[6] https://www.worldrtd.net/fr/node/121
[7] “Philip Nitschke invents suicide capsule with 3D printer,” The Australian, Nov. 25, 2017, https://www.theaustralian.com.au/news/health-science/philip-nitschke-invents-suicide-capsule-with-3d-printer/news-story/318561693f3a6eee1e10069df83a3839
[8] Vacco v. Quill, 521 U.S. 793 (1997); Washington v. Glucksberg, 521 U.S. 702 (1997).
[9] “Attempts to Legalize Euthanasia/Assisted-Suicide in the United States”, Patients Rights Council, http://www.patientsrightscouncil.org/site/failed-attempts-usa/
[10] Baxter v. Montana, Mont. Sup. Ct., 2009 MT 449, 354 Mont. 234, 224 P.3d 1211 (2009)
[11] Oregon Death With Dignity Act Reports: http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/ar-index.aspx
[12] Washington Reports: http://www.doh.wa.gov/YouandYourFamily/IllnessandDisease/DeathwithDignityAct.aspx
[13] See, e.g., Second Year Oregon Death With Dignity Act Report, page 12, https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year2.pdf
[14] ABC News story on Barbara Wagner: http://abcnews.go.com/Health/story?id=5517492&page=1
[15] https://patientsrightsaction.org/videos/ (See Dr. Brian Callister), https://www.cnn.com/2015/05/26/health/terminal-patients-against-assisted-suicide/index.html (Stephanie Packer)
[16] 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
[17] http://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year20.pdf, page 10.
[18] Oregon Death With Dignity Act: http://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Pages/ors.aspx
[19] Study: Doctors Don’t Always Spot Depression: http://www.time.com/time/health/article/0,8599,1913312,00.htm
[20] 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
[21] See, e.g. Center for Elderly Suicide Prevention, http://www.ioaging.org/services/all-inclusive-health-care/psychological-services/center-for-elderly-suicide-prevention/ ; Promoting Emotional Health and Preventing Suicide, A Toolkit for Senior Centers
https://store.samhsa.gov/product/Promoting-Emotional-Health-and-Preventing-Suicide/SMA15-4416
[22] James Werth and “rational suicide”: http://books.google.com/books/about/Rational_Suicide.html?id=gMZU0cKqarAC
[23] Oregon Death With Dignity Act Report 2017, page 11: http://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year20.pdf
[24] See, M. Golden, Why Assisted Suicide Must Not Be Legalized, section on “Doctor Shopping” and related citations. https://dredf.org/public-policy/assisted-suicide/why-assisted-suicide-must-not-be-legalized/
[25] REQUEST FOR MEDICATION TO END MY LIFE IN A HUMANE AND DIGNIFIED MANNER
[26] 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
[27] National Elder Abuse Incidence Study 1998: https://www.acl.gov/sites/default/files/programs/2016-09/ABuseReport_Full.pdf
[28] 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
[29] Autopsy Cutbacks Reveal “Gray Homicides”: http://canhr.org/newsroom/canhrnewsarchive/2011/NPR20110205.html
[30] 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.
[31] 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
[32] Oregon Death With Dignity Act Report 2017, page 11: http://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year20.pdf
[33] Id., pages 9 and 11.
[34] Oregon Death With Dignity Report 2017, Id. at page 10.
[35] 42 U.S.C. § 12101, et seq.
[36] 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 Myers v. Schneiderman (http://notdeadyet.org/wp-content/uploads/2017/05/NY-COA-Amicus-Feb-14-2017.pdf)
[37] http://notdeadyet.org/2017/11/my-letter-to-the-victorian-parliament.html
[38] Medical Futility in End-of-Life Care, Id.
[39] See http://notdeadyet.org/disability-groups-opposed-to-assisted-suicide-laws
[40] 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
[41] H.Con.Res.80 – Expressing the sense of the Congress that assisted suicide (sometimes referred to as death with dignity, end-of-life options, aid-in-dying, or similar phrases) puts everyone, including those most vulnerable, at risk of deadly harm and undermines the integrity of the health care system. https://www.congress.gov/bill/115th-congress/house-concurrent-resolution/80/text?q=%7B%22search%22%3A%5B%22H.con.res.80%22%5D%7D&r=1
[42] NCD Letter to Congressman Wenstrup Regarding Sense of Congress on Assisted Suicide, September 29, 2017, https://ncd.gov/publications/2017/ncd-letter-sense-congress-assisted-suicide
[43] See endnote 33.
[44] Age-Adjusted* Suicide† Rates, by State§ — United States, 2012, https://www.cdc.gov/mmwr/preview/mmwrhtml/mm6345a10.htm
[45] 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.
[46] 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; Drapeau, C. W., & McIntosh, J. L. (2014, October 18). U.S.A. suicide 2012: Official final data; Drapeau, C. W., & McIntosh, J. L. (2014, October 18). U.S.A. suicide 2012: Official final data. Retrieved August 16, 2017, from http://www.suicidology.org/Portals/14/docs/Resources/FactSheets/2012datapgsv1d.pdf;