Editor’s note: The following article is republished with permission from Not Dead Yet, a disability advocacy organization. The majority of disability groups, such as ADAPT and the Center for Independent Living, oppose doctor-assisted suicide laws such as the one recently signed by Governor Jerry Brown. Here is Not Dead Yet’s statement from www.notdeadyet.org/disability-rights-toolkit-for-advocacy-against-legalization-of-assisted-suicide.
“If this bill passes, some people’s lives will be ended without their consent, through mistakes and abuse. No safeguards have ever been enacted or proposed that can prevent this outcome, which can never be undone.” —Marilyn Golden, Disability Rights Education and Defense Fund
Why Disability Advocacy Groups Oppose Legalizing Assisted Suicide
Proponents of legal assisted suicide for the terminally ill frequently claim that the opposing views of disability organizations aren’t relevant. Nevertheless, although people with disabilities aren’t usually terminally ill, the terminally ill are almost always disabled. People with disabilities and chronic conditions live on the front lines of the healthcare system that serves (and, sadly, often underserves) dying people. One might view us as the “canaries in the coal mine,” alerting others to dangers we see first, but, unlike the canary, we loudly object to being seen as expendable.
Not Dead Yet formed in 1996 to help articulate a disability rights critique of proposals to legalize assisted suicide. Some of its initial observations, issues and concerns are as valid today as they were in the early years, some even more so.
Suicide versus assisted suicide. It should be noted that suicide, as a solitary act, is not illegal under any state’s statutes. 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 a particular request for assisted suicide is rational or results from impaired judgment.
Disability is the issue. Although intractable pain has been emphasized as the primary reason for enacting assisted suicide laws, the top five reasons Oregon doctors actually report for issuing lethal prescriptions are the “loss of autonomy” (91%), “less able to engage in activities” (89%), “loss of dignity” (81%), “loss of control of bodily functions” (50%) and “feelings of being a burden” (40%). 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 might 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. 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, are not explored. In this flawed worldview, suicide prevention is irrelevant.
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, without examining the cause of the suffering or whether it can be alleviated.
Healthcare cuts severe. For seniors and people with disabilities who depend on publicly funded healthcare, federal and state budget cuts pose a 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 healthcare providers to overrule the patient, their chosen surrogate or their advance directive and withhold desired life-sustaining treatment. With the cause of death listed as the individual’s medical conditions, these practices are occurring without meaningful data collection, under the public radar.
Window dressing safeguards, immunity law for physicians. The Oregon law grants civil and criminal immunity to physicians providing lethal prescriptions based on a stated claim of “good faith” belief that the person was terminal and acting voluntarily. This is the lowest culpability standard possible, even below that of “negligence,” which is the minimum standard theoretically governing other physician duties. The Oregon Health Division does not investigate the reports filed by doctors who issue lethal prescriptions.
Disability 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, leading to a two-tiered system that results in death to the socially devalued group. This is blatant discrimination.
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.” We are not.
Where We Are Today
Assisted suicide advocates paint themselves as “compassionate progressives,” fighting for freedom against the religious right. That simplistic script ignores inconvenient truths that are all too familiar to disability advocates, such as the following:
- Predictions that someone will die in six months are often wrong.
- People who want to die usually have treatable depression and/or need better palliative care.
- Pressures to cut healthcare costs in the current political climate make this the wrong time to add doctor-prescribed suicide to the “treatment” options.
- Abuse of elders and people with disabilities is a growing but often undetected problem, making coercion virtually impossible to identify or prevent.
Despite the frequent claim that Oregon’s experience has disproven the concerns of opponents of the Oregon law, the Oregon Reports as well as independent news reports and journal articles show otherwise:
- People who are not within six months of dying are getting lethal prescriptions.
- Depression is not identified or treated (only 6% have been referred for a psychological consult).
- People have been denied prescribed medical treatments by insurers but offered assisted suicide as an alternative.
- About half of the assisted suicide deaths in Oregon did not have a health provider present at the time of death, so there is no evidence of self-administration of the lethal dose or consent in those cases.
The key arguments against legalizing assisted suicide can be summarized as follows:
- Deadly mix: Assisted suicide is a deadly mix with our profit-driven healthcare system. At $300, assisted suicide will be the cheapest treatment. Assisted suicide saves insurance companies money.
- Abuse: Abuse of people with disabilities, and elder abuse, are rising. An heir or abusive caregiver might steer someone toward assisted suicide, witness the request, pick up the lethal dose and even give the drug—no witnesses are required at the death, so who would know?
- Mistakes: Diagnoses of terminal illness are too often wrong, leading people to give up on treatment and lose good years of their lives.
- Careless: No psychological evaluation is required. People with a history of depression and suicide attempts have received the lethal drugs.
- Pressure: Financial and emotional pressures can also make people choose death.
- Unnecessary: Everyone already has the right to refuse treatment and get full palliative care, including, if dying in pain, pain-relieving palliative sedation.
- No true safeguards: The safeguards are hollow, with no enforcement or investigation authority.
- Our quality of life underrated: Society often underrates people with disabilities’ quality of life. Will doctors and nurses fully explore our concerns and fight for our full lives? Will we get suicide prevention or suicide assistance?
Not Dead Yet is a national grassroots disability rights group that opposes legalization of assisted suicide and euthanasia as deadly forms of discrimination against old, ill and disabled people. Not Dead Yet helps organize and articulate opposition to these practices based on secular social justice arguments. Not Dead Yet demands the equal protection of the law for the targets of so–called mercy killing for those whose lives are seen as worthless.