This summer, disability rights advocates sued California over its so-called End of Life Options Act. Under this 2016 law, assisted suicide is available to persons deemed terminally ill with less than six months to live. But, as argued in the lawsuit, the act violates the legal rights of disabled Californians and worsens the dehumanization they already face.
California residents Lonnie VanHook and Ingrid Tischer know the problem firsthand. VanHook and Tischer have significant disabilities that would be fatal without medical management. Both have struggled to get medical care and in-home support. They believe they have encountered discrimination in hospitals due to their disabilities, and in VanHook’s case, also for being Black. Both have heard suggestions that their quality of life is unacceptable. Tischer describes a doctor’s refusal to get her into rehabilitation after pneumonia as a “solid gut punch.” Both have had bouts of depression, anxiety and thoughts of ending it all. They are fearful that if they become suicidal, they will not be given the suicide prevention services available to the general California public but instead be approved for a lethal drug prescription.
Amid existing health care disparities, assisted suicide, although ostensibly voluntary, imperils the ill and disabled. A law enabling it is discriminatory because it carves out an arbitrary health-related exception to the state’s policy of deterring suicide attempts. Four disability rights groups have joined VanHook and Tischer in filing a federal lawsuit alleging that California’s End of Life Option Act violates the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act, and the equal protection and due process clauses of the 14th Amendment of the U.S. Constitution.
Terminally ill persons have impairments that impact daily life activities and so are protected under the ADA. People typically request lethal prescriptions due to a perceived lessening of autonomy, or feelings of being a burden. One study indicates that a fear of going into a nursing home is much more likely than pain to fuel a desire to hasten death. These are not uniquely end-of-life concerns. These are the solvable concerns of people who want to control their lives but need kinds of help that others currently do not.
VanHook’s and Tischer’s fear about the blurring of the line between terminal illness and chronic conditions that are life threatening without treatment is well founded. In states where assisted suicide is legal, persons have been deemed eligible based on conditions like diabetes, arthritis, and anorexia.
Knowledge gaps may play some role in a person not being offered certain services. For example, a provider may not be fully aware how often suicide ideation occurs among people with Parkinson’s disease and that care should include a psychiatric component.
But there is more at play. In a study of doctors’ perceptions of disabled people, 82.4 percent of the doctors surveyed felt that people with a disability have a worse quality of life than others. Such attitudes appear to contribute to the health care disparities such individuals experience. Bias may cause doctors to assume that the intrinsic nature of a person’s physical condition, rather than treatable depression, is fueling a desire to die.
Assisted suicide can hardly be called a “choice,” as proponents do, when people do not have access to necessities such as home health aides or breathing support, or persons they trust are giving them cues that living is no longer a good option. Such “steering” is part of a pattern of devaluation and discrimination that pushes people to despairingly believe that their only option is assisted suicide.
If the California law is found to be invalid, so can the assisted suicide laws in the few other states that have them. Should any further state enact such a statute, they will be similarly embroiled in controversy.
Beyond the legalities though, we should focus less on perceptions of personal limitations and more on human aspirations.
As one mother has written lovingly of her daughter:
She did not want to die, contrary to the fallacy, seemingly held by some of our doctors that the will to live might fade as her prospects dimmed. Even when cancer robbed her of so much personal agency, of moments of dignity, eventually of her mobility and even, frustratingly, some of her precious words, she did not want to leave this world behind.
Neither do most of us—if we can get the help we need.
Lisa Blumberg is a Connecticut-based writer, lawyer, and disability rights advocate.
The views expressed in this article are the writer’s own.