By Diane Coleman, JD
People are sometimes surprised to learn that all of the major national disability rights groups that have taken a position on assisted suicide oppose bills to legalize it. Even some people with disabilities ask, how can that position be squared with the values of consumer control and choice?
One way to answer that question is to consider who has choice and control under assisted suicide laws? Anyone could ask their doctor for assisted suicide, but the law gives the authority to doctors to determine who is eligible. Doctors make the determination that a person is terminally ill and likely to die within six months, that the person is mentally “competent”, and that the request for assisted suicide is “voluntary” and “informed.”
Doctors making decisions about our lives? Isn’t that what we have fought so hard over the last 40 years to break away from? Doctors used to exercise near-total control over our lives, discouraging parents from raising disabled children at home, sentencing us to institutions, and imposing their own ideas about what medical procedures would improve our lives. The independent living movement was in large part a reaction against this “medical model,” and shifted the meaning of “independent” to living in the community in the most integrated setting possible. To put doctors, who have such notoriously poor views of the quality of our lives, in charge of declaring us eligible for assisted suicide poses a mortal danger.
Disability advocates first encountered doctors making similar determinations in the 1980’s in high profile court cases involving the right to refuse treatment. One involved a 26-year-old woman with cerebral palsy who had a miscarriage and marriage breakup and wanted a hospital to make her comfortable while she starved herself to death. The other cases involved men on ventilators stuck in nursing facilities and wanting to get out or else “pull the plug”. The doctors, courts, media and public all viewed these individuals as the equivalent of terminally ill and understood their feeling that they would be better off dead. They did not get suicide prevention equal to that offered nondisabled people and the doctors did not address their actual concerns. These cases were a wake up call to disability advocates.
The 1990’s brought Dr. Jack Kevorkian, conducting assisted suicides using lethal drugs, with two thirds of his body count being people with disabilities who were not terminally ill. As before, the difference between being disabled and being terminal was not recognized or considered significant. As before, the disability issues the individuals faced (e.g. loss of job, loss of spouse) were not considered in the public discourse. Put simply, assisted suicide sets up a double standard, with suicide prevention for some and suicide assistance for others. It’s disability discrimination.
Throughout the 80’s and 90’s, leading disability scholars and advocates used every available means to generate recognition of disability issues in the cases that came to light, but to little or no avail. This was when Not Dead Yet was formed and other national disability organizations began taking positions opposed to legalization of assisted suicide.
It’s almost two decades later, and some might wonder if awareness has increased and times have changed. But just look at how hunter Tim Bowers was awakened from an induced coma last year and encouraged to reject life support only one day after he fell from a tree-stand. In the assisted suicide context, perhaps the clearest place to look is 16 years of the Oregon assisted suicide reports. The top five reasons that doctors report for why their patients wanted assisted suicide are disability issues, with no sign in the law, the reports or otherwise that the person’s concerns were considered and addressed.
What increasingly emerges from the Oregon data is that medical professionals, government officials and assisted suicide proponents see no problem in society assisting suicides of people who feel that they are a “burden on others” (49% in 2013) or feel a “loss of autonomy” (93%) or “loss of dignity” (73%). Did any of the doctors know about consumer controlled attendant services, which could address these concerns? The Oregon law doesn’t require disclosures about any form of home care. The median duration of the doctor-patient relationship was 13 weeks, and proponents have admitted that the majority of prescribing doctors are referrals from proponent organizations. For them, it apparently goes without saying that disability is a fate worse than death.
If anything, cost cutting pressures may have made matters worse than they were in the 80’s and 90’s. Terminal predictions are no more reliable than they have ever been, with 15% turning out to be incorrect in hospice. Elder and disability abuse are increasing problems, with federal authorities estimating that one in ten elders is abused, mainly by family and caregivers. The so-called safeguards in assisted suicide bills are hollow. An heir or abusive caregiver can suggest assisted suicide, witness the request, pick up the lethal dose, and with no independent witness required at the death, who would know if the lethal dose was self-administered, or even if there was consent? Half of the Oregon assisted suicides did not have an independent witness at the death.
Disability rights advocates have become a leading voice in the debate over assisted suicide as public policy, increasingly acknowledged by the media, as well we should be. The threat to newly disabled people is especially serious. We owe it to them, and to all old, ill and disabled people, to lead the resistance against assisted suicide laws. For more information, go to the Not Dead Yet website and NDY’s Disability Rights Toolkit for Advocacy Against Legalization of Assisted Suicide, and the Disability Rights Education & Defense Fund.