As longtime disability rights advocates, we have seen our lives marginalized and devalued by the medical establishment. We agree with the principle of a right to self-determination; however, a balanced perspective of assisted-suicide legislation is frequently missing from the discussion.
The disability community’s core message is that if assisted suicide is legal, some people’s lives will be lost due to mistakes, coercion, and abuse, and that’s an outcome that can never be undone.
New York’s bill on physician-assisted suicide, the Medical Aid in Dying Act, is being marketed as merciful, where a terminally ill patient would have the option to end their suffering with a lethal dose of medication. But its advocates neglect to address how this same law would legalize assisted suicide in a manner that would pose mortal danger to vulnerable and marginalized people.
In a recent study of doctors’ perceptions of disabled people published in Health Affairs and reported in the Harvard Gazette, 82.4 percent of the doctors surveyed felt that people with disability have a worse quality of life than others and fewer than 57 percent said they strongly welcomed disabled patients. The lead author stated, “The magnitude of physicians’ stigmatizing views was very disturbing.” Simply put, we don’t trust all physicians to make decisions about life and death.
The current pandemic only serves to highlight these concerns. A representative of Oregon Disability Rights has said regarding care during the pandemic, “We’ve had … cases … where, essentially, medical staff are encouraging patients, even ones who have relatively clear expressed wishes to get the full measure of assistance, to convert to a do-not-resuscitate … status, essentially because of their disability.” A Texas hospital refused to give COVID-19 treatment to a 46-year-old Black disabled man, with his wife being told he had little quality of life. He subsequently died. In times of crisis, society’s implicit biases are more likely to influence critical medical decisions.
How will New York state assure that people, especially those with cognitive issues, are not being influenced by family members and others who view them as a burden? Current legislation in New York has no realistic way of protecting individuals from mistakes, coercion or abuse and lists no reporting requirements. Medical confidentiality prevents oversight. No independent witness is required during the death of an individual. In a world where abuse of persons with disabilities and seniors is rampant, this alone is cause for concern.
Assisted-suicide laws in other states direct that a doctor be satisfied that a person’s decision to die is not being unduly influenced by another. It is not clear how office visits can yield this information. If doctors start with the presumption that a person’s illness or disability inevitably diminishes his life, evidence of undue influence can be overlooked. How will the state Department of Health, which has been terribly remiss in monitoring our loved ones’ health and safety in nursing facilities, adequately monitor these potential problems?
We know a cultural divide exists between those with and those without a disability. Will some folks want to end their lives because our health care system cannot assure a good quality of life, economic security, quality affordable accessible housing. adequate support services, and a life free from the threat of unwilling institutionalization? These are practical and societal issues that doctors, focusing on whether a condition can be cured, may lack the knowledge or perspective to solve.
We do not question the “good intentions” of this legislation, and we believe most doctors do try to do their best for their patients. However, physicians, policymakers and legislators are part of a society which accepts glaring health care disparities. Nothing about their training or expertise puts them above the implicit cultural biases. Unless advocates for assisted suicide address and not trivialize these critical issues, any supposed safeguards of assisted-suicide laws are illusory. In issues of life and death, we believe the state should err on the side of caution.
Melvyn R. Tanzman of Yorktown is a retired executive director of Westchester Disabled on the Move. Lisa Tarricone of Poughkeepsie is executive director of Taconic Resources for Independence.
