Alex Thompson (NY Assn. on Independent Living) and Max Rodriguez (Center for Disability Rights) had a ten minute interview with Capital Tonight’s Susan Arbetter. Detailing weaknesses of the purported “safeguards” in the state’s assisted suicide bill, they urged the legislature to reject it as too dangerous. Key concerns focused on insurance pressures to cut costs and the healthcare system’s failure to meet people’s needs for treatment, care and related supports.
The Capital Tonight broadcast video and article are HERE and excerpts from the accompanying article are also copied below.
Members of disability rights community urge N.Y. lawmakers to reject Medical Aid in Dying Act
By Susan Arbetter New York State PUBLISHED 7:30 PM ET Feb. 14, 2024
….[A]mong the 30% of voters who do not support the [assisted suicide] bill, there is one group that argues the bill’s safeguards are inadequate.
Advocates for people living with disabilities are concerned about people being pressured into the procedure.
“The biggest concern is, is this really a choice?” Alex Thompson, director of advocacy with the New York Association on Independent Living, told Capital Tonight. “We’ve seen in Canada and other places where this is legalized, where instead of people being offered support to be in the community and still have a level of autonomy, they are offered assisted suicide.”
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When asked if there are any additional safeguards that could be included in the bill that would make it more acceptable to the disability rights community, both Max Rodriguez, manager of government affairs with the Center for Disability Rights, and the New York Association on Independent Living’s Thompson said no.
“Really, there is nothing to add. To think there are final adequate safeguards is misleading,” Rodriguez said.
“I don’t think that we’re really in a place where we can support this bill. There are just too many concerns around this related to the way our for-profit health care system works,” Thompson reiterated.
The Association on Independent Living’s opposition memo to the bill states that the disability community is deeply concerned about coercion and abuse.
“A.995/S.2445 does not prevent a coercive family member or caregiver from doctor shopping with the individual to find a physician who will provide the fatal drug. There is nothing in the proposed legislation which would prevent an abusive caregiver or family member from steering the individual toward physician assisted suicide, witnessing the request form, picking up the lethal dose, and even administering the drug,” the memo states.
Rodriguez is also concerned about tracking the lethal medication once a prescription is filled by a pharmacy. A 2022 report from Oregon states that the “ingestion status” for over 100 patients was “unknown.”
On February 8, the Maryland Senate’s Judicial Proceedings Committee held a public hearing on a proposed assisted suicide bill (SB0443). That morning prior to the hearing, the Patients Rights Action Fund organized a press conference of opponents. Anita Cameron represented Not Dead Yet and made the following compelling arguments against the bill.
Anita Cameron’s Press Conference Remarks
I’m Anita Cameron, Director of Minority Outreach for Not Dead Yet, a national disability organization opposed to medical discrimination, healthcare rationing, euthanasia and assisted suicide.
SB 0443 will 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.”
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. Doctors are more likely to write us off as terminal, making us eligible for assisted suicide.
COVID, in particular, has laid bare racial disparities and disability discrimination in healthcare that leads to medical rationing and futility decisions that can end a person’s life. Michael Hickson’s case is a clear case of discrimination against disabled people.
Michael Hickson was a 46-year-old Black man from Texas, the father of 5 children. Mr. Hickson was a quadriplegic, the result of a brain injury caused by a heart attack. He was placed in a nursing home, where he contracted COVID. He was sent to St. David Hospital, in Austin, Texas. However, due to his disability, the doctors decided not to treat him, stating that he had no quality of life, though family videos show him laughing and singing with his wife and children. He was placed in hospice and allowed to die.
I, too, 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.
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 like SB 0443 have no place in Maryland.
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The House committees will hear the bill on February 16. I testified last week and must say that Maryland has unusually complex steps and deadlines for allowing witnesses to testify (oral or written). The process is detailed by each committee, such as in these Health and Government Operations Committee Guidelines. They are hearing the bill Friday and the deadline to sign up is Wednesday.
Today, Anita Cameron testified via online access to oppose Minnesota’s assisted suicide bill while John Kelly and Diane Coleman submitted written testimony to the MN House of Representatives Health Finance and Policy Committee.
Below are excerpts from each and their names links to their full testimonies.
Research has documented Black, Asian, and Hispanic persons regularly experience barriers to palliative/hospice care utilization. …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…
There is no way to contain eligibility to a narrow set of people. Especially when thousands of disabled Americans now live with conditions that in some states are seen as “worse than death.” Anorexia nervosa and diabetes can now qualify as terminal conditions. Once death is accepted as a positive outcome of medical care, it inevitably gets offered to more and more people.
The problem for us disabled people is that we are already treated badly in the medical system. As medicine has focused increasingly on patient “quality-of-life” as a barometer of life-worthiness, death has been recharacterized as a benefit to an ill or disabled individual. Most physicians (82%, a 2020 Harvard study found) view our “quality-of-life” as worse than nondisabled people.
Data from states where assisted suicide is 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….
We are deeply concerned that the proposed delete-all amendment requires providers to offer physician assisted suicide along with other treatment and palliative care options when a patient receives a terminal diagnosis. Doctors and other providers are in a position that carries status and authority. Bringing up assisted suicide to a patient who has not raised the issue themselves conveys a dangerous and demoralizing message by its very nature and could even be taken as an implicit endorsement.
The Patients Rights Action Fund (PRAF), led by Matt Vallière, coordinates diverse coalitions of advocates against assisted suicide laws. Matt and his expert team have respected and supported a strong disability role in these state coalitions from early on. They have also been crucial to taking into federal court my longstanding assertion that assisted suicide laws are a deadly form of discrimination and violate the Americans with Disabilities Act.
This month, Matt looked back on the victories of 2023 in an op-ed carried by The Hill. I was thrilled by that because it’s a publication described as “a top US political website, read by the White House and more lawmakers than any other site — vital for policy, politics and election campaigns.”
Regarding the ADA lawsuit in which United Spinal, NDY and others are also plaintiffs, Matt asserted that “California law creates even more unequal treatment for people with disabilities, puts us at greater risk of coercion, and makes us more vulnerable to a system preventing access to the care we need. It effectively funnels us toward death too soon. That’s not equal protection — it’s eugenics.” (Emphasis added.)
The op-ed also highlighted some key policy victories among health related organizations. For example, “Last year also saw the American Medical Association (AMA) reject a proposal to soften its longstanding opposition to assisted suicide.”
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.