This spring, eligibility under Canada’s assisted suicide/euthanasia law is scheduled to expand to include people who are deemed to suffer from “untreatable mental illnesses.” The implementation of the expansion has been delayed before and will hopefully be delayed again due to stiff opposition to it. A recent New York Times article, “Death by Doctor May Soon Be Available to the Mentally Ill in Canada”, tries to describe both sides of this controversary.
It quotes two psychiatric survivors who both have made multiple suicide attempts and who feel they would benefit from the option of having a medically caused death. It also quotes an Ontario psychiatrist who explains his opposition by stating, “What does it mean for the role of the physician, as healer, as bringer of hope, to be offering death? And what does it mean in practice?… [P]sychiatrists are no better at identifying who’s not going to get better.”
The piece misses the mark though. It devotes few words to shortcomings in the health care system. It omits the views of disability rights activists and does not question whether Canada should have legalized assisted suicide for any patient group in the first place.
Canada is a textbook case in mission creep. Its original assisted suicide law enacted in 2016 applied only to the terminally ill but it now applies as well to people with chronic conditions or physical disabilities if they are seen as suffering. The person must request death but there is no requirement that lethal drugs be self-administered.
Some people with physical disabilities using the law have been quite explicit that it was because they could not receive funding to hire the in-home help they needed to avoid a nursing home. A woman with multiple chemical sensitivities died under the law because she could not find safe and affordable housing. These Canadians have accepted – not chosen – state sponsored death because the failings of society had made their lives as disabled persons feel intolerable. If the law is expanded to include people presumed to have long standing mental health problems, it can be expected that more people will die because they cannot access the right type of care or support.
As Dr. Ira Byock, an American palliative care specialist and opponent of assisted suicide has stated, “When doctor-induced death becomes an accepted response to the suffering of dying people,….extensions grease the slippery slope.” Indeed, the article quotes Dr. Alexandra McPherson, a psychiatry professor at the University of Alberta and assisted death provider who states that she treats a small number of patients “with severe disabling mental health disorders who suffer equally to the patients that I see in cancer care.” In other words, if death can be a good thing for folks with cancer, it can be a good thing for “the mentally ill”. Her use of the term “disabling” of course harks to “better dead than disabled” prejudices.
In America, the states which have legalized assisted suicide still purportedly limit eligibility to those with terminal illness – as porous as that term is – and a six month prognosis, although some states have made expansions in other areas such as reducing the waiting periods and authorizing non-physician prescribers of lethal drugs. It seems to be the strategy of proponents of assisted suicide to get the laws initially enacted by promoting their supposed safeguards. However, pieces have begun to appear in the mainstream press suggesting that assisted suicide should be available to the chronically ill. As described in a previous Not Dead Yet blog, a lawyer writing in the New York Law Journal asserts that assisted suicide should be available to both the chronically ill and those deemed to be in cognitive decline and that a self-administration requirement is discriminatory. A Connecticut legislator supports passing an assisted suicide law in its “restricted” version because that “would open the door to evaluation and expansion.” If an assisted suicide law is in effect in any state ten years from now, it may well rival Canada’s.
The New York Times piece fails because it considers whether Canada should amend its assisted suicide/euthanasia law to include so-called mental illness as a discreet issue, unique to the presumed characteristics of psychiatric survivors, an issue where psychiatrists can disagree. Instead, it should have considered whether Canada’s pending expansion of its law is just one more object lesson as to why an assisted suicide law enacted in any form imperils everyone.
Hartford Courant’s Alison Cross conducted interviews on both sides of the assisted suicide debate, reporting one advocate against the proposed bill saying “that aid-in-dying opponents, especially those in the state’s disabled community, fear that a ‘right to die could become for them a duty to die,’ as the burden of care and treatment costs pile up.”
Cathy Ludlum, a disability rights advocate who has fought against aid-in-dying legislation with her organization Second Thoughts Connecticut said that aid-in-dying legislation puts the state’s most vulnerable at risk, including individuals living with disabilities, those living in poverty and members of marginalized ethnic groups who already struggle to get equal access to health care.
Ludlum said that she believes proposed aid-in-dying guardrails are destined to widen because “there’s no way to limit this service without discriminating against other people.”
“Once death is a treatment option, it’s a policy, it’s no longer an individual choice. It is something that will affect every person,” Ludlum said. “It starts as an individual choice, but it mushrooms from there once you write it into law.”
Ludlum said that the devil is in the details.
“It’s very different to walk up to someone on the street with a clipboard and say, ‘Do you believe people should have a choice about where and how their life ends?’ and probably everyone would say ‘Sure.’ It is very different when you say, ‘What about the impact on the insurance coverage? What about the impact on doctors? What about the impact on the medical system in general? What about discrimination? What about equality?’ Then people start to have second thoughts,” Ludlum said.
Disability advocates can learn more about Second Thoughts CT here.
People sometimes wonder if the subjects Not Dead Yet deals with get us down. But the reality is that you lift us up – every time you share the message that we are NOT “better dead than disabled,” every time you fight for the healthcare and supports we need, every time you prove our inherent DIGNITY by fighting the indignities society too often heaps upon all the beautiful, proud disabled people we are. Thank you for all the forms of support you have given and please take comfort in knowing you have helped save lives.
If you are still looking to make a year end donation, please consider Not Dead Yet by going HERE. Wishing you love, peace and justice in the new year!
P.S. If you want to learn more about what we’ve been doing, check out our newest Annual Report.
Anita Cameron’s Remarks Before the New York State Bar Association Task Force on Medical Aid in Dying
November 17, 2023
Anita Cameron
Good morning. I’m Anita Cameron, Director of Minority Outreach for Not Dead Yet, a national, grassroots disability organization opposed to medical discrimination, healthcare rationing, euthanasia and assisted suicide.
Assisted suicide laws are dangerous because though these laws are supposed to be for people with six months or less to live, doctors are often wrong about a terminal diagnosis. In 2009, while living in Washington state, my mother was determined to be at the end stage of chronic obstructive pulmonary disease. I was told her death was imminent, that if I wanted to see her alive, I should get there in two days. She rallied, but was still quite ill, so she was placed in hospice. Her doctor said that her body had begun the process of dying.
Though she survived 6 months of hospice, her doctor convinced her that her body was still in the process of dying, and she moved home to Colorado to die.
My mum didn’t die. In fact, six weeks after returning to Colorado, she and I were arrested together in Washington, DC, fighting for disability justice. She became active in her community and lived almost 12 years!
Assisted suicide laws put sick people, seniors and disabled people, especially, at risk due to the view of doctors that disabled people have a lower quality of life, therefore leading them to devalue our lives. In 2021, Lisa Iezzoni, a professor of medicine at Harvard University, conducted a survey of 714 doctors around the country as part of a study. She found “82.4 percent reported that people with significant disability have worse quality of life than nondisabled people. Only 40.7 percent of physicians were very confident about their ability to provide the same quality of care to patients with disability, just 56.5 percent strongly agreed that they welcomed patients with disability into their practices, and 18.1 percent strongly agreed that the health care system often treats these patients unfairly.” https://pubmed.ncbi.nlm.nih.gov/33523739/
Now add race and racial disparities in healthcare to this. Blacks, in particular, receive inferior health care compared to whites in the areas of cardiac care, diabetes, cancer and pain management.
Let me address pain for a minute, because I have a personal relationship with pain. I live with intractable pain. I have multiple disabilities. Two are degenerative. One will take my life. I have personal experience with racial discrimination and disparities in healthcare. The most blatant example of this was when I went to the emergency department last year in intractable pain. A white woman, also in pain, was next to me in the hallway because it was very busy that day. We had the same ER doctor caring for us. She, without asking, got Dilaudid, a potent pain medication, while I got a pat on the shoulder and sent home.
Research shows that Black patients are less likely to receive adequate pain treatment due to false beliefs about biological differences between blacks and whites, which adds further pressure to seek assisted suicide.
How does racial disparities in healthcare relate to assisted suicide?
Research has documented Black, Asian, and Hispanic persons regularly experience barriers to palliative/hospice care utilization. A 2016 JAMA Internal Medicine study found that hospice patients were less likely to be visited by staff in their last two days of life if they were Black. Even more alarming, California nursing facilities with higher numbers of Black and Latino residents have “had higher rates of death.” Although black people and other people of color request assisted suicide less than white people at this point, as the practice is normalized, they are more at risk of pressure to do so. First, racial disparities in healthcare lead to limited health choices and poorer health outcomes including death. Economic disparities make it less likely that patients can afford life-saving treatment and more likely that doctors will “write off” patients as terminal and thus eligible for assisted suicide.
Blacks often die waiting for organ transplants. We are diagnosed with cancer at much later and less treatable stages. As stated above, we get inferior diabetes care, with more amputations. We’re more likely to be written off as terminal and less likely to have access to medical care.
COVID has killed Black, Latine and Indigenous people at higher rates than whites. In fact, some Indigenous communities have literally been wiped out.
As a Black Latina, I didn’t see assisted suicide as part of my culture. This is borne out in a Pew study that shows Blacks and Latine folks are 65% opposed to assisted suicide and in states where it’s legal, rarely use the program. Assisted suicide proponents tend to be white professional and managerial class folks, yet, recent data shows that a significant portion of those who used assisted suicide had Medicare and/or Medicaid as insurance. This confirms the data that indicates that fears of being a financial burden are among the top five reasons people have requested assisted suicide.
Assisted suicide laws are immunity for doctors; they’re written to protect them and designed so that there is no oversight, no reporting requirements and in most cases, the actual cause of death is not listed, rather, the underlying condition is listed. In fact, the word “suicide” is never mentioned. Even the name of the bills and procedures are euphemisms – medical aid in dying, death with dignity, etc.
Although proponents cite pain as the primary reason they want assisted suicide, the 5 top reasons people ask for assisted suicide according to the Oregon data are:
Loss of autonomy
Loss of dignity
Loss of the ability to do things they once loved
Loss of bodily control, such as incontinence and vomiting
Feelings of being a physical, emotional or financial burden on family, friends and caregivers
All these are disability related issues that can be addressed with home based care, services and supports, including mental health services. Pain can be addressed by effective pain control, palliative care, and palliative sedation.
What’s especially dangerous about these laws is that in states where it’s legal, if you lose access to healthcare, turning your chronic condition into a terminal one, you can request assisted suicide. It’ll be cheaper to kill you than to care for you.
And, pay no attention to those going on about safety measures included in assisted suicide legislation. That’s just something to get the legislation through. Once passed and enacted, safety measures are seen as barriers to be removed when the bills are expanded. Two doctors signing off on a request becomes a doctor and a nurse practitioner or physician assistant signing off on the request. A 15 day waiting period between the request and receiving the lethal prescription becomes 72 hours, or less. Residency requirements are no longer mandatory in Oregon and Vermont; indeed, in New York’s proposed legislation, there is no residency requirement! Safety measures in these bills means nothing.
As long as disability discrimination and racial disparities in healthcare exist and as long our broken, profit-driven healthcare system limits people’s access to treatment, services and supports, assisted suicide laws have no place anywhere in the United States. I ask the New York State Bar Association to decide that this is dangerous public policy for our state and say NO to assisted suicide!
For the New York State Bar Association Medical Aid in Dying Task Force Open Forum
November 27, 2023
The following supplemental information includes references and links to substantiate key points in my remarks presented on November 17th on behalf of Not Dead Yet, a national disability organization headquartered in New York with a Board of Directors and staff solely comprised of disabled people.
Not Dead Yet is part of the NY Alliance Against Assisted Suicide and is also among 17 major national disability organizations that oppose assisted suicide laws, including the United Spinal Association which is also based in New York. 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. The New York bill, like California’s law, is closely modeled on Oregon’s law.
One of the most frequently repeated claims by proponents of assisted suicide laws is that there has not been “a single documented case of abuse or misuse.” To the contrary, I refer you to two resources describing problem cases. The first is from the Disability Rights Education and Defense Fund, Oregon and Washington State Abuses and Complications. The second is a journal article by two New York medical doctors, Drs. Herbert Hendin and Kathleen Foley, Physician-Assisted Suicide in Oregon: A Medical Perspective (2008).
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.
Doctors are supposed to detect coercion, but how could they when, for example, Oregon’s state reports say that the median duration of the prescribing physician patient relationship was only 5 weeks in 2021 and 2022. Over all the years, lack of coercion is not usually determined by a physician with a longstanding relationship with the patient. This is significant in light of well-documented elder abuse-identification and reporting problems among professionals in a society where an estimated one in ten elders is abused, mostly by family and caregivers. (Lachs, et al., New England Journal of Medicine, Elder Abuse.)
In about half the reported Oregon cases, there is also no independent witness to consent or self-administration at the time of ingestion of the lethal drugs. If the drugs were, in some cases, administered by others without consent, no one would know.
In September, the U.S. Dept. of Health and Human Services proposed new regulations prohibiting healthcare discrimination based on disability. The federal Notice of Proposed Rule Making is full of examples of disability discrimination by healthcare providers. Making assisted suicide part of “end-of-life care” and designating doctors as its gatekeepers and administrators could only further undermine patient safety, particularly for older adults, disabled people, Black, indigenous, communities of color and other multiply marginalized people who have experienced healthcare discrimination.
The top five reasons Oregon doctors give for their patients’ assisted suicide requests over all reported years are not pain or fear of future pain, but psycho-social issues that pertain to disability. Three of these (losing autonomy, losing dignity, burden on family) could be addressed by in home personal care services, but the law operates as though the person’s reasons don’t matter, and nothing need be done to address them.
We should also look at Canada, where assisted suicide and active euthanasia were legalized in 2016. Only five years later, Bill C-7 was passed making assisted suicide and active euthanasia available to healthy people with disabilities. Canadian press has since reported on disabled individuals getting euthanasia by lethal injection when they want to die because they can’t get housing or otherwise can’t afford to live on government payments. Next year, Canadians whose sole illness is psychiatric are scheduled to become eligible for euthanasia. See Coelho R, Maher J, Gaind KS, Lemmens T (2023). The realities of Medical Assistance in Dying in Canada. Palliative and Supportive Care. https://doi.org/10.1017/S1478951523001025
Equal rights include equal suicide prevention, not suicide agreement and assistance for people who are too often devalued. New York should firmly reject the dangerous discrimination of assisted suicide.
