Lessons From Disability History
Prior to the formation of Not Dead Yet, disability activists opposed a number of so-called “right to die” court cases involving ventilator users who sought freedom from nursing homes, essentially arguing “give me liberty or give me death.” Society’s response, denying them freedom but granting them death, was a wake up call to the disability rights movement. (Herr, S.S., Bostrom, B.A, & Barton, R.S. (1992). No place to go: Refusal of life-sustaining treatment by competent persons with physical disabilities. Issues in Law & Medicine, 8 (1), 3-36.)
Suicide v. Assisted Suicide
It should be noted that suicide, as a solitary act, is not illegal in any state. Disability concerns are focused on the systemic implications of adding assisted suicide to the list of “medical treatment options” available to seriously ill and disabled people.
What’s Disability Got To Do With It?
The disability experience is that people who are labeled “terminal,” predicted to die within six months, are – or will become – disabled. It is well documented that the six month prediction called for in the Oregon and Washington laws is unreliable. The Oregon Reports demonstrate that some people who received prescriptions were not terminal (i.e. lived longer than six months).
Broad Agenda, Incremental Strategy, Not Just for the Terminally Ill
The political agenda of many assisted suicide organizations includes expansion of eligibility to people with incurable but not necessarily terminal conditions who feel that their suffering is unbearable (Baron, C.H. et al. (1996). Statute: A model act to authorize and regulate physician-assisted suicide. Harvard Journal on Legislation, 33 (1), p.11), without examining the cause of the suffering or whether it can be alleviated.
Physicians Are Assisted Suicide Gatekeepers
Anyone could ask for assisted suicide, but physicians decide who gets it. Physicians must predict, however unreliably, whether a person will die within six months. Physicians judge whether or not a particular request for assisted suicide is rational or results from impaired judgment.
Disability is the Issue
Although intractable pain has been emphasized as the primary reason for enacting assisted suicide laws, the top five reasons Oregon doctors actually report for issuing lethal prescriptions are the “loss of autonomy” (89.9%), “less able to engage in activities” (87.4%), “loss of dignity” (83.8%), “loss of control of bodily functions” (58.7%) and “feelings of being a burden” (38.3%). (Death With Dignity Act Annual Reports, PDF download ) These are disability issues.
We Don’t Need To Die to Have Dignity
In a society that prizes physical ability and stigmatizes impairments, it’s no surprise that previously able-bodied people may tend to equate disability with loss of dignity. This reflects the prevalent but insulting societal judgment that people who deal with incontinence and other losses in bodily function are lacking dignity. People with disabilities are concerned that these psycho-social disability-related factors have become widely accepted as sufficient justification for assisted suicide.
Physicians Misjudge Quality of Life
In judging that an assisted suicide request is rational, essentially, doctors are concluding that a person’s physical disabilities and dependence on others for everyday needs are sufficient grounds to treat them completely differently than they would treat a physically able-bodied suicidal person. There’s an established body of research demonstrating that physicians underrate the quality of life of people with disabilities compared with our own assessments (Gerhart, K. A., Kozoil-McLain, J., Lowenstein, S.R., & Whiteneck, G.G. (1994). Quality of life following spinal cord injury: knowledge and attitudes of emergency care providers. Annals of Emergency Medicine, 23, 807-812; Cushman, L.A & Dijkers, M.P. (1990). Depressed mood in spinal cord injured patients: staff perceptions and patient realities, Archives of Physical Medicine and Rehabilitation, 1990, vol. 71, 191-196). Nevertheless, the physician’s ability to render these judgments accurately remains unquestioned. Steps that could address the person’s concerns, such as home care services to relieve feelings of burdening family, need not be explored. In this flawed world view, suicide prevention is irrelevant.
Elder Abuse Equals Coercion
The prevalence of elder abuse has been one factor that raises concerns about the risk that older people with health impairments may be coerced into choosing assisted suicide. Disability abuse is similarly prevalent but less well known.
Door Open for Involuntary Euthanasia
Assisted suicide’s so-called “safeguards” apply when the lethal prescription is requested, but not when it is administered. Oregon’s law contains no requirement that the patient be capable or give consent when the lethal dose is administered. Someone other than the patient is allowed to provide the lethal dose.
Health Care Cuts Severe
For seniors and people with disabilities who depend on publicly funded health care, federal and state budget cuts pose a very large threat. Many people with significant disabilities, including seniors, are being cut from Medicaid programs that provide basic help to get out of bed, use the toilet and bathe.
Involuntary Denial of Care
Most people are shocked to learn that futility policies and statutes allow health care providers to overrule the patient, their chosen surrogate or their advance directive and withhold desired life-sustaining treatment. With the cause of death listed as the individual’s medical conditions, these practices are occurring without meaningful data collection, under the public radar.
Window Dressing Safeguards, Immunity Law for Physicians
The Oregon law grants civil and criminal immunity to physicians providing lethal prescriptions based on a stated claim of “good faith” belief that the person was terminal and acting voluntarily. This is the lowest culpability standard possible, even below that of “negligence,” which is the minimum standard theoretically governing other physician duties. The Oregon Reports also consistently admit that the state has no way to assess the extent of non-reporting or the extent of non-compliance with the law’s criteria.
Legalized assisted suicide sets up a double standard: some people get suicide prevention while others get suicide assistance, and the difference between the two groups is the health status of the individual. This is blatant discrimination and a violation of the Americans with Disabilities Act (ADA).
National Disability Rights Organizations
A number of established national disability organizations have joined Not Dead Yet to adopt positions against assisted suicide, including ADAPT, the National Council on Independent Living, the National Spinal Cord Injury Association, the Disability Rights Education and Defense Fund, the National Council on Disability and others.
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.