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.
The usual line of the organizations promoting the legalization of assisted suicide (or medical aid in dying (MAiD) as they like to call it) in New York and elsewhere is as follows: the sole reason for such laws is to prevent “end of life” suffering, that the laws only apply to people close to death and contain stringent guidelines. Moreover, they claim, in states which have such laws, there have never been abuses, meaning assisted suicide laws are safe.
Kaitlin Puccio, a New York attorney and supporter of “MAiD”, says it’s time to move things forward and then some. Her simplistic and Orwellian piece “The Final Countdown to Medical Aid in Dying in New York”[1] in New York Law Journal tells it as she sees it.
She notes that New York has failed multiple times to pass an assisted suicide bill but thinks this go around it may be different. There is a lawsuit going on in New Jersey challenging the residency requirement of its assisted suicide law, thus creating the possibility that New York’s assisted suicide business could be syphoned off by its neighbor. She writes, “New York’s financial incentive to keep its residents from using out-of-state services when they could be provided in-state may be enough to spark a sense of urgency to pass the New York Medical Aid in Dying Act…if New Jersey removes its residency requirement for MAiD, New York will need to make its move or risk New York residents making theirs.” This is rather a bald admission of the economic gain that could come from allowing this industry in the state.
Puccio is quick to say that besides the financial commerce incentive, she thinks that there are ethical reasons to pass the act. Indeed, she uses the word “ethical” five times in her 1118 words piece but then admits that due to existing economic incentives in the healthcare system, some people could be steered to choose death. This is unfortunate but she writes that, “such misuse or overuse of MAiD must not be permitted to poison the ethical analysis of its proper use in determining whether to pass the pending legislation.” So much for being leery of legalizing assisted suicide because of the potential for abuse under our already biased and broken healthcare system.
Midway in the piece, her “ethical” arguments move from economics to anti-disability rhetoric. Puccio wants New York to hurry up and pass an assisted suicide law but not the one that has actually been introduced in the legislature which is based on the Oregon model (although Puccio does not use that term). She writes, “the New York legislature should not only consider the ethical implications of passing the New York Medical Aid in Dying Act, but it should take steps to ensure that the qualification requirements are not overly exclusionary or discriminatory.”
She thinks that limiting eligibility to persons who are judged to be within six months of death fails to recognize a distinction between “living” and “being alive.” She doesn’t say what this distinction is but just that she would extend eligibility to people with chronic conditions because doctors “have not found a way to preserve or extend their quality of life.”
She also would extend eligibility to people with cognitive decline, which creates concerns about lack of consent and involuntary euthanasia. Although she finesses when eligibility should be triggered for such folks, she asks “When considering the appropriate time for patients in cognitive decline to have access to MAiD, the question that must be answered is: If there is a death of the self, what is left to keep alive?” For Puccio, it appears that an individual who has reduced cognitive abilities may no longer have the protections of personhood. Perhaps she’s adopted Peter Singer’s theories in that regard.
Last but not least, Puccio is opposed to a requirement that the lethal drugs be self-administered because that would make things onerous for people with disabilities. She has already acknowledged that abuse may occur but doesn’t think that should be a concern when discussing the merits of removing the self-administration requirement.
What Puccio is advocating is for New York to legalize euthanasia for a broad swath of the population. Without stating it in so many words, she is asking proponents of assisted suicide to re-draft their bill so that it is as broad as the euthanasia laws in Canada and Belgium. It is unlikely that this will happen quickly. Proponents will probably try once again to pass the bill they already have while touting the supposed safeguards. However, her piece does provide a warning on how assisted suicide, once legalized in a jurisdiction, can morph.
Reading her piece in the holiday season reminds me of Dickens’ The Christmas Carol and the disturbing ghost of Christmas Future who foretells terrible things to come to pass – unless people step in to stop them.
