The New York State Bar Association (NYSBA) adopted a resolution in 2023 that supports the provisions of the assisted suicide bill before the legislature. This position is based on a report by its Task Force on Medical Aid in Dying. The report is extensive but seems more of defense of assisted suicide rather than a balanced inquiry into the myriad issues raised by its legalization.
During the summer last year, Not Dead Yet had learned of the NYSBA Task Force and requested an opportunity to speak to which the chair replied, “I’ll be in touch a little later to settle on date for you to visit.” Sometime later, NDY inadvertently learned that David Leven, a leader in End of Life Choices New York, made a presentation to the Task Force. Rather than scheduling a comparable opportunity for opponents, the Task Force scheduled an open forum in November with a limited number of slots and did not notify the NY Alliance Against Assisted Suicide, a coalition of doctors, disability advocates and other opponents of assisted suicide laws. By the time word reached the Alliance, only three speaking slots remained available, the rest (over 20) taken by proponents. Later in December, another panel of prominent assisted suicide advocates presented to the Task Force but, once again, no expert panel from the opposition.
In the resulting Task Force report, assisted suicide and palliative care are jumbled together as end-of-life care. Portions of the report read like a planning document for the implementation of assisted suicide if the bill is enacted. For example, it encourages lawmakers to mandate that insurers offer coverage for assisted suicide. (pp. 32-36)
The slant of the report is evident right from the beginning of the introduction which states:
“To address the experience of some terminally ill people who suffer at the end of life, even with the support of hospice and palliative care, lawmakers have sought for more than 9 years to change the law in New York to allow these people to access an end-of-life option known as ‘medical aid in dying.’ Medical aid in dying is a medical practice that has now been adopted in 11 U.S. jurisdictions that allow a terminally ill, mentally capable adult with a prognosis of six months or less to live to request from their doctor a prescription for medication they can decide to self-ingest to die peacefully in their sleep.” (Italics mine for emphasis.)
With such value laden and highly debatable statements in the report, it is little wonder that the association decided as it did. However, they did not set a very good example for the Medical Society of the State of New York (MSSNY).
In April at its annual House of Delegates meeting, the MSSNY voted in a policy change that states “MSSNY supports legislation such as the medical aid in dying act and supports physicians’ choice to opt-in or decline to engage in the processes and procedures as outlined in any proposed medical aid in dying legislation.” While the medical societies of several states have taken a stance of so-calledengaged neutrality in regard to assisted suicide, no other state medical society has come out in affirmative support of its legalization.
There seems to be nothing on the MSSNY website which provides a rationale for its position. In fact, due to sloppy drafting of the resolution, its position is unclear. The phrase “legislation such as the medical aid in dying act” can be interpreted in various ways. Does the MSSNY just support the assisted suicide bill that is currently before the New York legislature or does it support any “medical aid in dying” bill that New York might consider in the future, including one that would allow voluntary euthanasia? (Proponents are increasingly using “aid in dying” as an umbrella term to refer to assisted suicide and euthanasia.) Or would it support a bill that openly includes chronic conditions and disabilities as eligible? Most doctors are not lawyers! Despite the ambiguity though, the New York Bar Association has commended the MSSNY for its position.
The MSSNY policy change does indicate that a doctor can opt-out, i.e., decline to engage in whatever it is the legislature legalizes as “aid in dying”. However, doctors can always decide what is beyond their realm. My dermatologist simply won’t give me advice on how to handle a cold. The fact that the MSSNY explicitly recognizes an opt-out right implies that there is something about assisted suicide that is professionally problematic, something outside of what doctors would ordinarily be doing. Regardless, the doctors who opt out are protected, but that does nothing to protect patients from mistakes, coercion and abuse.
It was New York’s highest court in 2017 which, by listening to all sides in regard to a proposed constitutional right to assisted suicide, drew the distinctions that should be made. They got it right when they stated, the “potential danger[s] of this dramatic change in public policy would outweigh any benefit that might be achieved.”
The MSSNY and the New York Bar Association should have taken their cues from them.
Reps. Wenstrup and Correa Reintroduce Resolution on the Dangers of Physician Assisted Suicide
Washington, May 23, 2024
Today, Reps. Brad Wenstrup, D.P.M., (R-OH) and Lou Correa, (D-CA) introduced a resolution “expressing the sense of the Congress that assisted suicide puts everyone, including those most vulnerable, at risk of deadly harm.”
In 2019, the National Council on Disability, an independent federal agency that makes policy recommendations to enhance the lives of all Americans with disabilities, released a report titled “The Danger of Assisted Suicide Laws” recommending Congress enact the resolution that Reps. Wenstrup and Correa have introduced in the 116th and 117th Congresses.
“As a physician, I believe physician-assisted suicide fundamentally goes against our duty to ‘first, do no harm’ and puts our nation’s most vulnerable – seniors and individuals with disabilities – at grave risk,”said Rep. Brad Wenstrup, D.P.M. “We must not lose sight of the undeniable fact that every life has intrinsic value and is worth protecting.”
“Americans with disabilities deserve access to quality health care and should be given every opportunity available to live quality, dignified lives,” said Rep. Lou Correa.“Our most vulnerable deserve the same access to suicide prevention care and all health care as anyone else. There is so much more work to do to ensure that we’re properly addressing the mental health crisis in our communities–and we cannot stop delivering resources directly to those who need it most in our neighborhoods.”
“Rather than support and facilitate access to physician-assisted suicide, we should prioritize expanding accessibility to palliative and hospice care to maximize the quality of life for patients experiencing excessive pain,”said Rep. Greg Murphy.“As a practicing physician for more than 30 years, I have dedicated my career to saving lives and comforting my patients. Assisted suicide is unethical and vulnerable individuals must be protected, especially when there are alternative options available.”
“Our focus should be on killing pain instead of making it easier to kill people,” said Rep. Chris Smith. “When a society singles out the weakest and most vulnerable patients as candidates for physician-assisted suicide, it denies the value of their lives, undermines their dignity, and rejects their needs, including their need for the best possible palliative care.”
“In today’s political environment, when something has bi-partisan support, that means something. So, we commend Congressmen Lou Correa (D-CA), Brad Wenstrup (R-OH), and all the cosponsors for their effort to gain support for and introduce this bi-partisan Sense of Congress resolution which highlights the inherently discriminatory nature of assisted suicide laws. None other than the National Council on Disability, which is charged by the federal government to make policy recommendations for the disability community, issued a recent report that found that people living with disabilities are targeted for disfavored, deadly treatment and face greater barriers to accessing health care when assisted suicide is legal. Our country has a responsibility to ensure that vulnerable people enjoy the same access to suicide prevention care and all health care as everyone else. We encourage lawmakers to come together and support this resolution that exposes the dangers of assisted suicide,”said Matt Vallière, Executive Director, Patients Rights Action Fund.
“Quadriplegics struggling to live in the community, faced with housing, financial, and transportation problems, and the constant struggle to obtain adequate homecare and coverage of mobility equipment from government and insurers, are often overwhelmed and depressed. Just after spinal cord injury or other significant disability, grief regarding loss of physical abilities and future dreams can cause folks to want to die. Doctors who may agree that life with XYZ disability is not worth living can prescribe drugs under the assisted suicide public policy to people with disabilities who refuse treatment. Doctors should not help overwhelmed people with disabilities kill themselves, rather our society should solve the underlying problems causing them to give up. This is why we at United Spinal filed a groundbreaking lawsuit to overturn the California assisted suicide law and join Reps. Correa and Wenstrup in decrying assisted suicide and euthanasia laws and support this common sense resolution,”said Vincenzo Piscopo, President and CEO of United Spinal Association
“The public image of severe disability as a fate worse than death has become grounds for carving out a deadly exception to longstanding laws and public policies pertaining to suicide prevention services. Legalizing assisted suicide means that some people who say they want to die will be offered suicide intervention, while others will be provided suicide assistance. The difference between these two groups of people will be their health or disability status, leading to a two-tiered system that results in death to the socially devalued group. As a national, secular, social justice organization, Not Dead Yet strongly supports this bipartisan effort to counter the many myths about legalized assisted suicide,” said Diane Coleman, President and CEO of Not Dead Yet
Liz Carr’s newest groundbreaking documentary on assisted suicide is a in-depth exploration of the emotions and societal pressures that lie at the heart of disability opposition to a public policy that threatens ours lives. The Guardian called it “blistering.” Her gripping and personal narrative, a must-see tour-de-force is available HERE for now.
Long before UK actress Liz Carr became known for her roles in shows like Silent Witness, The Witcher and Good Omens, she worked against a public policy of assisted suicide. Knowing that the vocal disability opposition to assisted suicide was unpopular, she was active in Not Dead Yet UK from early on.
In 2013, Liz Carr created a two part BBC documentary called “When Assisted Suicide Is Legal” about what she called her Euthanasia Road Trip in Europe, Oregon and Washington State. NDY covered Part 1 and Part 2with excerpts and commentary in our blog, and the audio documentary is still live online:
From the description:
Carr travels to Switzerland, where she visits the rooms where volunteers help people die, and finds out why the Swiss law on assisted suicide goes back to the 19th Century. In Belgium she meets a doctor who admits to performing euthanasia before it was legal; and in Luxembourg, she finds out why the law on assisted suicide nearly caused a constitutional crisis. Carr questions whether it is possible to balance the right of the individual who wants to die with the responsibility of society to protect those who don’t.
In the article “Rational Suicide in Later Life: A Systematic Review of the Literature” in the National Library of Medicine, the authors reviewed 23 studies on “rational suicide” with the stated aim of better understanding the concept of rational suicide in older adults. The piece defines rational suicide as “a sane, well-thought-out and fairly stable decision by an individual who is mentally competent, and who is capable of reasoning and choosing the best alternative among the many available with no ambivalence” (italics mine for emphasis). Unfortunately, the piece contributes nothing to better understanding of the concept; its focus seems to be on determining based on the writers’ review of the literature, whether there is such a thing as “rational suicide.”
The writers of the article note inconsistencies in the studies, the incidence of depression in older adults and the tendency to under diagnosed and undertreat it, bias among health care providers, ageism and the possibility of a slippery slope. The authors conclude though that while clinicians should avoid making premature conclusions about the “rationality” of patients’ decisions to die, nonetheless, the possibility of rational suicide cannot be precluded.
The clear implication is that a clinician can and perhaps should respond to a person’s suicide ideation differently based on whether it is “rational” or “pathological”. The writers give no guidance about how a provider should objectively determine if suicide is “rational” beyond encouraging the provider to consider all of the patient’s circumstances. Since the article is just intended to be a review of the literature, they do not explicitly state what a clinician should do if they find a suicide to be “rational”. However, they do note that the concept of rational suicide is “obviously linked” to the debate over euthanasia and assisted suicide. That is the nub.
The attempt to divide suicide into two categories – the rational and the pathological – is paternalistic and ableist in itself. It is a red herring. Moreover, it rings hollow to focus on a decision to die being rational, when the reason why it can be considered rational is because society has made choices and pursued policies that make it seem rational. In Canada, people have “chosen” euthanasia because they could not obtain the funding for the in-home aide support they needed to stay out of a nursing home. They acted out of the quite well-founded fear of what life is like in a nursing home. It can be said they acted rationally but not freely. An alternative was theoretically available but the community would not give it to them.
At the extreme, some ethicists argue that granting euthanasia requests driven by unjust social circumstances can be seen as a form of “harm reduction.” To be fair though, there is nothing in the article that suggests that the authors would countenance such nihilism.
The authors mention that 55% of late life suicides are associated with physical illness and older people and those with chronic/terminal illness may not have psychiatric comorbidity. Physical illness is more likely to eventually lead to suicidal behavior when it causes functional disabilities threatening the individual’s independence, autonomy and perceived dignity, quality of and pleasure with life, their sense of meaning, usefulness and purpose in life, personal value and self-esteem. In other words, people think about suicide not because death may be near but because they are unsure about how to deal with the practical problems and devaluation that come with living with a possibly progressive disability in our society. It’s about all about fear of disability.
Clinicians should not be encouraged to engage in speculation about whether a person’s desire to die is rational. Instead, the question they should ask is what can society do to change the crushing devaluation too many experience as they acquire disabilities? And what resources can be brought to bear so that the person can still live a life that comes as close as possible to the life that the person would like to live.
While the primary focus of our public comment was the denial of life-sustaining healthcare treatment based on negative disability biases, we mentioned the issue of equality in suicide prevention as well, for example, here:
As HHS has indicated in its discussion of the proposed rule, biases about the impact disabilities have on “quality of life” are endemic among medical professionals. One manifestation of these discriminatory attitudes is the failure to treat suicidal depression in people with disabilities, including older individuals, although other people with suicide ideation are routinely offered suicide prevention services.
The Department responded to a variety of comments about the scope of the new rule as follows:
Comments: Many commenters asked the Department to specifically clarify other forms of medical treatment that § 84.56 would apply to, including assisted reproductive technology treatment, suicide prevention services, mental health services, and others.
Response: As indicated previously, the Department intends § 84.56 to apply in a broad and inclusive fashion to a wide array of medical treatment services, including assisted reproductive technology treatment, suicide prevention services, mental health services, and others. “Medical treatment” is used in § 84.56 in a generic, nonspecific manner; it is intended to be broad and inclusive. It refers to the management and care of a patient to identify, address, treat, or ameliorate a physical or mental health condition, injury, disorder, or symptom, whether or not the condition constitutes a disability and whether the medical approach is preventive, curative, habilitative, rehabilitative, or palliative. Although it is not possible to provide an exhaustive list of such services, recipients should interpret the term medical treatment in the broad and inclusive fashion intended by the Department.
So the rule prohibits disability discrimination in suicide prevention services. Since people who qualify for assisted suicide in states where it’s legal are disabled by their health impairments, they are covered by this protection. At a minimum, their reasons for wanting to die must be addressed as part of suicide prevention.
NDY also commented on the problem of QALYs and other similar assessment methods, beginning with this:
Disability-biased value assessment methods are based on the bigoted premise that life with a disability has lesser value than life without a disability. They are inherently discriminatory and are in direct conflict with the concept of equal rights. An example of a value assessment method that overtly devalues people with disabilities is one that uses a quality adjusted life years (QALY) calculation. . . .
The Partnership to Improve Patient Care (PIPC) and many other organizations also weighed in on this issue and responded with the following about the new rule:
As described in the final rule, the new regulations would bar health care decisions made using measures that discount gains in life expectancy, which would likely include the quality-adjusted life year (QALYs) and the combined use of QALYs and equal value of life years gained (evLYG). HHS’ rule represents a critical step forward to protecting patients and people with disabilities and sends a strong message that we need better solutions for U.S. decision-making that don’t rely on the biased, outdated standards used by payers in the U.S. and other countries. Although we look forward to increased clarity related to the standards set in the final rule as cases are reviewed by the Office for Civil Rights, we appreciate the agency’s broad interpretation of what constitutes the discriminatory use of value assessment in its description of the rule.
PIPC has also offered additional information and recommendations.
NDY will next be reviewing the treatment denial and “futility” provisions.
