Testimony of
Diane Coleman, JD, President and CEO of Not Dead Yet
Opposing H2246/S1331 “An Act Relative to End of Life Options”
Massachusetts Joint Committee on Public Health
October 20, 2023
My name is Diane Coleman and I started the disability rights group Not Dead Yet in 1996 to oppose legalization of assisted suicide as the ultimate discrimination against people with disabilities, including those disabled by age or illness. While most people who state their intention to die by suicide receive suicide prevention, some people receive suicide assistance instead, and the difference is their disability.
If Not Dead Yet were the only disability group opposing assisted suicide, it probably wouldn’t mean much, but among the 17 major national disability groups that oppose these laws are the American Association of People with Disabilities, The Arc of the United States, the National Council on Disability (NCD), the National Council on Independent Living, United Spinal Association and more.
While advocates for assisted suicide laws claim that there’s no evidence of abuse, these laws are not designed to detect or report problems. They gather patient demographics and diseases, but the real risks occur under the radar and behind closed doors.
Shortly before receiving notice of this hearing, I was working on a public comment regarding proposed federal regulations prohibiting healthcare discrimination based on disability. The notice about the proposed rules from the federal government is full of examples of disability discrimination by healthcare providers that are very relevant to considering the increased dangers in a public policy of assisted suicide. For example, the notice states:
In its report, Medical Futility and Disability Bias, NCD discusses the example of Terrie Lincoln who, at age 19, was in an automobile accident that severed her spinal cord and caused her to become quadriplegic. The report describes that when Terrie “was in the hospital just following her accident, Terrie’s doctors repeatedly tried to influence her family to `pull the plug,’ stating that Terrie was a `vegetable’ and, even if she were to regain consciousness, would have no quality of life.” When Terrie did regain consciousness, she was pressured by her doctors to forego additional medical treatment that would extend her life due to judgments that life with the disability of quadriplegia was not worth living. This would be a violation of the proposed regulation….Terrie persisted, later coming off the ventilator, earning degrees in social work and public administration, and becoming a disability rights advocate and mother.
The pressure on people to give up and die can be boiled down to two issues: Money and ableism (including internalized ableism).
As the head of Not Dead Yet, I receive calls from families desperately trying to save a relative from a system that wants to cut short their chance for survival and some level of recovery. Although America’s largest health insurers reportedly made $41 billion in profits in 2022, people whose care costs more than the premiums paid for their care are not “profitable.” Regardless of the good intensions of most individuals in the healthcare system, cost-cutting pressures are undeniable and those of us with higher needs feel those pressures every day.
The other issue is ableism. Studies show that provider biases against people with disabilities are prevalent and may contribute to healthcare disparities. In the proposed rule, the federal government cited a 2012 report from the National Disability Rights Network which “documented instances of providers steering individuals with disabilities or their family members to agree to decline life-sustaining care or consent to the withdrawal of life-sustaining care.” They’re talking about ableism in a healthcare system that is already too quick to write off the people who need it most.
To address this injustice, the new rule makes explicit that providers are “prohibited from denying or limiting medical treatment …when the denial is based on (i) bias or stereotypes about a patient’s disability; (ii) judgments that an individual will be a burden on others due to their disability, including, but not limited to, caregivers, family, or society; or (iii) a belief that the life of a person with a disability has a lesser value than that of a person without a disability, or that life with a disability is not worth living.”
Not Dead Yet and United Spinal Association are now part of a major lawsuit filed under the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act and the U.S. Constitution to challenge the California assisted suicide law as discriminatory based on disability. Assisted suicide laws constitute discrimination by setting up a double standard for how society responds to a person who says they want to die by suicide – some people get suicide prevention and others get suicide assistance, and the difference is the person’s health and disability. Data from states where it’s legal show that all people who request assisted suicide have disabilities, even if some don’t think of their impairments that way, and that unmet disability related needs are their reasons for wanting to die.
Too many of us with significant healthcare and support needs are struggling. Rather than ensuring that the basic needs of people with disabilities, including older individuals, are met, instead there’s an increasing push to address the problem by offering a streamlined path to death. Massachusetts should firmly reject this discrimination.
We need to resist the forces that put profits over patients as well as resist healthcare system biases against older and disabled people. The Massachusetts Act relative to end of life options would do the opposite, making assisted suicide just another medical treatment. It’s a policy that is unsafe for patients and should be strongly opposed.