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.
Currently the several states that have legalized assisted suicide adhere to the Oregon model, the two most significant aspects of which are that assisted suicide is restricted to those presumed to have less than six months to live and the lethal drugs, once obtained, must be self-administered. Opponents of assisted suicide see the evolution of assisted suicide in other countries into euthanasia for broad based groups as a cautionary tale. Some supporters though see it as a goal, and they are becoming bolder in expressing their views.
Ethicist Thaddeus Mason Pope in an article published in the ABA Experience Magazine and reprinted in the Good Death Society Blog enthusiastically predicts that there will be major expansions to assisted suicide laws, with the end result being euthanasia available to anyone who can be seen to have a “grievous and irremediable medical condition” and provided free of charge to Medicare recipients with lethal injection as an option. He does not say why this would be a positive social development nor does he discuss the ethics of garnering public support for the passage of assisted suicide laws by touting minimal restrictive criteria as safeguards and then a few years later removing them. Pope refers to loosening the criteria as reforms.
Pope begins by discussing the expansions that are occurring now. Barriers to “medical tourism” (his term) have been dropping. The states where the residency requirement has been eliminated can now become like Switzerland, offering death to anyone from wherever who is thought to meet the criteria.
A few states now allow nurse practitioners and physician assistants to prescribe the drug cocktail, as if assisted suicide is a routine medical matter and that determining the prognosis for life expectancy does not require advanced skill. As one California legislator who urged a radical expansion of the already expanded California assisted suicide law has noted, a six month prognosis can be a “faulty metric” anyway.
Third, some states have reduced the waiting time between the two requests for a deadly prescription from fifteen days to 48 hours and in some circumstances, have waived it altogether, a period of reflection before making such a profound and irreversible decision being considered no longer necessary.
Pope then lists other expansions that may be on the way:
Six Month Prognosis – Pope sees the requirement that a person have a six-month life expectancy as “unusual” compared to a country like Canada which uses a “grievous and irremediable medical condition” as the threshold eligibility requirement. The term tends to be tied to some notion of physical or psychological suffering and decreasing loss of function or capability. Open-ended and ambiguous, it could sweep in a wide range of people with significant permanent disabilities.
Since disability “quality of life” biases are endemic in medical settings, it would be rather easy for a noticeably disabled person to find providers that they could convince of their suffering. Indeed, some doctors take the initiative of suggesting to such a person that they do suffer. Moreover, when combined with the impairments of aging, the functional limitations of virtually any disability will increase. We are all declining. (Given the disability bulge among the baby boomers, the intersection of aging with lifelong disability is a ticking time bomb that society has no will to deal with.) It is not too much of a stretch to say that the proposed change would open up eligibility to anyone whose ongoing disability causes them to be devalued.
Advance directives – Pope notes efforts in Canada which he seems to view as the gold standard, to allow people who fear dementia to arrange for “aid in dying” ahead of time. It’s not exactly clear how he thinks this would work. What if when the advance directives are triggered, the person exhibits no interest in death? Setting aside philosophical discourse on which personality should have the final say, this might be entering the realm of active, involuntary euthanasia.
Assisted Self-Administration – Pope mentions the federal lawsuit challenging the self-administration requirement as violating the Americans with Disabilities Act. He refers to the concept of “assisted self-administration” but assisted suicide laws are already interpreted to allow for that. For example, someone else can mix up the potion, put a straw in it and give it to the person who drinks. What is being considered here is presumably voluntary euthanasia. The person speaks or makes a sign of assent and then the provider essentially causes the death (as opposed to providing the means for death).
Intravenous Administration – Pope predicts that intravenous infusion of the deadly drugs and lethal injection will soon to be allowed as a reliable, safe and effective way to cause death. Perhaps, Pope is unfamiliar with botched executionsespecially when lethal injection is involved. The idea of euthanasia by this means though really is not so new in America. It harkens back to the days of Jack Kevorkian except that it would be legal.
Medicare Coverage – Medicare doesn’t cover dental cleanings or hearing aids but there are efforts to have Medicare cover so-called “aid in dying”. This would presumably be coverage for whatever form of assisted suicide or euthanasia that a state enacted but Pope isn’t clear on this point. Coverage by Medicare would give death-making the status of full-fledged medical care with all which that implies. And if Medicare can provide coverage, why not Medicaid?
The proposed expansions are interrelated, each “logically” leading to the next one. If eligibility is expanded to include people who “suffer” from ongoing functional limitations or if people are allowed to pre-arrange for their deaths should they develop dementia, the question becomes practical access. This can be solved by permitting another to cause the death. If euthanasia or “assisted self-administration” is allowed, IV or lethal injection is the most expedient way to do it. Finally, coverage by Medicare normalizes the whole process. It reminds one of Jonathan Swift’s essay “A Modest Proposal” in which he sets forth a set of propositions which, when taken one right after another, justify Englishmen eating Irish children. Swift was being satirical. Pope is deadly serious.
Pope’s piece is supposed to be a summary of the scope of current assisted suicide laws and the trends in expansion. His review omits one key thing though and that is the resistance!
To: California Senate Health and Judiciary Committees
From: Diane Coleman, JD, President & CEO, Not Dead Yet
Re: Letter Opposing Proposed SB 1196 Amendments to the End of Life Option Act
This letter is filed on behalf of Not Dead Yet, a national disability organization headquartered in New York with members in California. We oppose the SB 1196 amendments to the California End of Life Option Act for several reasons.
ELIGIBILITY: First and most importantly, the proposed amendments provide for a greatly expanded eligibility for receiving a lethal prescription, removing the current provision based on a “terminal” diagnosis expected to lead to a natural death within six months. The SB 1196 amendment makes millions more people eligible, people with chronic conditions and disabilities who are nowhere near the “end of life” except for their proposed eligibility for assisted suicide.
SB 1196 specifically provides eligibility for people with a “grievous and irremediable medical condition” defined as “a medical condition that meets all the following criteria:
(A) The condition is a serious and incurable illness or disease.
(B) The condition has placed the individual in a state of irreversible decline in capability and the individual’s suffering is palpable without prospect of improvement.
(C) The condition is causing the individual to endure physical suffering due to the illness, disease, or state of decline that is intolerable to the individual and cannot be relieved in a manner the individual deems acceptable, and there is no proven treatment for the individual’s situation that the individual has not attempted or is willing to attempt due to the nature or side effects of the treatment.
(D) After taking into account all of the individual’s medical circumstances, it is reasonably foreseeable that the condition will become the individual’s natural cause of death. A specific prognosis as to the length of time the person has left to live shall not be required to meet this criteria.
Some U.S. doctors have already been considered overly expansive in finding assisted suicide eligibility under a “terminal” requirement (e.g., the anorexia cases), but problem cases have generally been nearly impossible to identify due to the absence of oversight under statutes adopted in the states involved. A primary rationale for passing these laws has been “they’re going to die soon anyway,” but rather than trying to prevent mistaken “terminal” labels leading to premature death, SB 1196 blows the eligibility for assisted suicide wide open.
In the original bill, Senator Blakespear included “physical or psychological suffering” in the eligibility definition but amended it to “physical suffering.” Despite that revision, it’s difficult to conclude that it really changes anything. The notion that disabled people’s suffering is caused by their disease or injury per se has been at least in part refuted by decades of studies showing that the real issues are social consequences arising from bigotry and poverty. It’s understandable that people who acquire disabilities blame their condition rather than society for the social rejection and countless forms of exclusion they experience, but it doesn’t justify society now assisting their suicide rather than correcting society’s failures.
A similar eligibility expansion occurred in Canada in 2021. 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.
Moreover, reported data from Oregon shows that the top five reasons doctors give for their patients’ assisted suicide requests 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 consumer-directed in-home personal care services, but the assisted suicide law operates as though the person’s reasons don’t matter, and nothing need be done to address them. Doctors are also unlikely to inform patients about services they know little to nothing about.
SB 1196 also proposes to add dementia as an eligible diagnosis, regardless of whether the elements of the definition are met. This diagnosis greatly increases the risk that the individual will be subjected to undue influence or pressure to hasten their death even though the disease is not causing physical suffering or is not intolerable to the individual. Many people with dementia are content. Especially in the context of dementia, it’s important to note that none of the medical professionals who certify lack of coercion need to have a longstanding relationship with the patient. Even the attending physician may have been brought in only to provide services related to assisted suicide. The witnesses needn’t know the person either but can just check their identity. They are unlikely to be able to identify undue influence or outright coercion, making the danger of such pressures too great.
WAITING PERIOD. Equally concerning about SB 1196 is the elimination of the “waiting” or reflection period between oral requests for lethal drugs. Research shows that depression is a common reaction to a diagnosis that involves losses in function or changes in lifestyle. It takes time for anti-depressants to work. Insufficient health care and in-home personal care services can also lead to despair. it takes time to put services in place. There is no excuse for abandoning people by hastening their deaths rather than addressing their needs. When this happens, it’s not compassion, it’s cruelty.
SELF-ADMINISTRATION. SB 1196 would allow lethal drugs to be administered by intravenous infusion. This is described to be by way of a device put in place to allow the patient to perform an act that delivers the drugs. (Dr. Jack Kevorkian developed a device that allowed his “patients” to push a button for the same purpose.)
In the absence of oral consumption of lethal drugs, the opportunities for elder abuse by another administering the drugs are increased. In about half the reported Oregon cases, there is no independent witness to consent or self-administration at the time of ingestion of the lethal drugs. According to the National Council on Aging:
Approximately one in 10 Americans aged 60+ have experienced some form of elder abuse. Some estimates range as high as five million elders who are abused each year. One study estimated that only one in 24 cases of abuse are reported to authorities.
If the lethal drugs were, in some cases, administered by others without consent, no one would know.
OTHER ABUSES: 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, please see this list of cases compiled by the California based Disability Rights Education and Defense Fund, Oregon and Washington State Abuses and Complications.
HEALTHCARE DISPARITIES: Research on healthcare disparities has also shown that medical providers are not immune to prevailing social biases. Making assisted suicide part of “health 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 already experience life threatening healthcare discrimination.
“GOOD FAITH” CULPABILITY STANDARD: And legislators, particularly on the Judiciary Committee, should readily see the problem with the “good faith” standard of culpability for violations of the bill’s provisions. A claim of “good faith” renders any so-called safeguards unenforceable, empty and meaningless.
