For years, advance medical directives, popularly known as living wills, have been promoted as giving people control over what happens to them at “end of life”, i.e., when they are in dire medical straits. (1) It is hard to disagree with the concept. Certainly, people have the right to refuse treatment they don’t find helpful or to say no to certain types of invasions of their bodies. This goes to the core of personal autonomy. Yet advance medical directives, which often involve checking off boxes in a document filled with boilerplate language, may be invoked years later in situations that the person did not think of or intend. (2)
The dilemma it seems to me is that in situations where a person is judged unable to communicate, advanced medical directives operate as a sort of poor man’s substitute for informed consent. In an ableist health care system focused on cost containment, this may be dangerous.
Living wills are usually triggered when a person is deemed terminally ill or with an irreversible condition. This creates an ambiguity regarding whether the prohibitions in a living will apply even when the patient has a very treatable condition if he also has an incurable condition. (This is one reason why some people with permanent disabilities are leery of signing a living will.) Is this something that is always reflective of a person’s intent or what may become his intent as his life circumstances change? A person who has developed a congestive heart condition, for example, may want treatment for a strep throat. Patients, families and doctors may not fully appreciate this distinction.
One study found that doctors are likely to view living wills as being broader than they actually may be. 50% of doctors in the study misinterpreted a living will as having a “do not resuscitate” (DNR) order when it did not and about the same percentage over-interpreted DNR orders as meaning no treatment except “comfort care” or “end-of-life” care. (3)
As Diane Coleman said a decade ago, “advance care planning has developed under the false premise that the primary or only problem is overtreatment of dying people. A balanced approach would also address the problem of under treatment of people who may or may not be terminally ill.” (4)
In my view, this lack of balance and unawareness of medical and social context is one of the flaws of the Conversation Project. The program encourages everyone to decide what treatment they do or do not want at end of life and then draft advance directives accordingly. (5) The trouble is that the playing field is not level. Health care disparities abound and large groups of people must struggle to get the care and practical support they need. (6)
The Conversation Project suggests that people uncover their views by considering a series of questions and then rating where they fall between opposite alternatives. Examples include “I strongly prefer to spend my last days in a health care facility” versus “I strongly prefer to spend my last days at home” and “I would want to try every available treatment to extend my life even if it’s uncomfortable” versus “I would not want to try treatments that impact the quality of my life in order to extend my life.” Among the “ideas” the project provides regarding how to respond to “what matters to me most through the end of my life” are being independent. (7)
All this would seem to fuel anticipatory fears about being disabled. Short shrift is given to problem solving. What is being depicted as pro-active is not in fact pro-active. It would be more constructive for individuals and the community to focus on issues such as what are the ways to minimize the chances that a person will end up in a nursing home or how can the treatment a person would want be delivered in the least uncomfortable manner.
More generally and apart from the Conversation Project, linking advance directives with so-called end of life care in and of itself creates bias. Why would you want to have doctors pull out all the stops when you are going to die anyway? This bifurcation between the care you may want in hypothetical situations when your time is running out and the care you would ordinarily want may be artificial. It may create self-fulfilling prophesies.
Early in the pandemic, older adults with covid-19 would go to emergency rooms and medical providers would implement their advance directives (for instance, no CPR or mechanical ventilation) because of an assumption that proved to be erroneous that the virus was “universally fatal” to seniors. Dr. Sean Morrison, a gerontologist and palliative care specialist at Mount Sinai Hospital, said he and his colleagues witnessed this happen repeatedly. (8)
In a similar vein, Dr. Joseph Fins, an expert in consciousness levels, has stated in regard to people who have sustained major brain injuries, “It’s glossing over all the unknowns for the sake of a quicker, cleaner solution. It’s wrong to be so uniformly fatalistic so early on, especially with all the data emerging about the prospects for later-stage recovery.” (9)
Morrison and other specialists are proposing a different model for advance care planning to enhance patient decision making and autonomy. Rather than segregating out so-called “end of life” care from health care in general, the priority should be on helping people make complicated decisions when they become seriously ill. (10)
“We’re saying stop trying to anticipate the care you might want in hypothetical future scenarios,” Dr. James Tulsky, who is chair of the department of psychosocial oncology and palliative care at the Dana-Farber Cancer Institute, has stated. “Many highly educated people think documents prepared years in advance will protect them if they become incapacitated. They won’t.” (11)
According to Morrison, “we should be focused on helping them [patients] make difficult decisions in the moment, when actual medical circumstances require attention.” (12)
For example, if a person was in danger of cardiac arrest due to blood loss from an injury, the question would not be do you have a DNR (resuscitation may involve the cracking of ribs) but do you want resuscitation if needed in this situation for survival?
This approach would be a huge step forward but it can be improved with input from the disability community. Access to in-home aide support is crucial to promoting the personal autonomy we all want. This is an issue that should concern the whole population. Any able bodied person can become disabled and any person with a mild or moderate disability can become more significantly disabled. (The latter is something that our movement should give more bandwidth to).
We can also advocate that supported decision making (13) be used more in medical situations. Everyone should have such a network of friends or trusted advisers who can help them make major medical decisions when needed. Let’s take the concept mainstream. This would minimize the reliance on health care proxies where one person has total decision making authority for another person and reduce possible conflicts of interest.
Advance directives are a dead end without choices, alternatives and flexibility.
Legal assisted suicide puts disabled people in danger of being killed on the basis of disability alone. This is especially true when assisted suicide laws allow someone otherthan the patient to administer the drug. The authors claim that denying someone euthanasia is an ADA violation. Their argument is that getting assistance in administering the lethal drug should be seen as a “reasonable accommodation” used to allow someone without the physical capacity to take the drug access to assisted suicide. The provision of the ADA cited in the article to support this claim states that “No qualified individual with a disability shall…be excluded from participation in or be denied the benefits of services, programs, or activities of a public entity, or be subjected to discrimination by any such entity” when reasonable accommodation can be provided.”
There is a much more compelling case for invoking the ADA here that focuses less on making it easier for disabled people to die and more on making it easier for us to live life on our own terms. In places where assisted suicide is legal, disabled people who wish to die (some actually terminal, some not) are given the tools to do so, while nondisabled people who wish to die are given access to mental health resources. Is being coerced toward “choosing” death really an example of disabled people accessing the “benefits of services, programs, or activities of a public entity”? Is being denied mental health treatment because our lives are seen as less valuable than the lives of nondisabled people not a more pressing example of the ADA being violated?
Thaddeus Pope, co-author of the article, has himself admitted that he sees having a disability, and not exclusively a “terminal” prognosis, as an acceptable reason for someone to be permitted to die by assisted suicide. We reject this notion. True healthcare includes treatment and resources that allow someone to live with as little pain and with as much independence as possible. Legal assisted suicide, which, on a systemic level, results in the premature and unnecessary deaths of our community members, is not a “service, program, or activity” that disabled people “benefit” from. This is a blatant misuse of the ADA.
It is clear that the authors of this article are out of touch with the core tenets of disability justice, which state in part that we have a responsibility to keep each other safe. Policies that champion the desires of individuals over the safety and vitality of the most marginalized disabled people are not grounded in a true disability justice framework. Disabled people do not need more help dying. Crisis standards of care in the face of COVID-19 that deprioritize us for treatment, our profit-driven healthcare system that regularly denies care to those who need it most, and a general societal attitude that people are “better off dead than disabled” make death more accessible to us than life. The ADA, while imperfect, was passed because the disabled community worked to ensure that the inherent value of our lives would be recognized in the eyes of the law. It should not be used to further jeopardize the safety of the most vulnerable members of our community.
A little over a year after the passage of Bill C-7, which expanded access to Medical Aid in Dying (MAiD) in Canada to people whose natural deaths are not “reasonably foreseeable,” we are seeing the dangerous effects of this legislation for disabled people. As more data becomes available about who is using MAiD and how it is being administered, we can see patterns emerging. Maria Cheng recently wrote an article for the AP on this topic, and we created a thread on Twitter of some of its most essential quotes and points. The article is definitely worth the read in its entirety, but we hope this summary will give you some key takeaways.
The throughline in this article is the story of Alan Nichols, a 61-yr-old stroke survivor with hearing loss and a history of depression, but no other life threatening medical issues. Alan was euthanized in July 2019. 2/
Human rights and disability advocates warn that Canada’s euthanasia policy will result in more unecessary deaths like Alan’s when it is offered as a replacement for adequate medical care. 3/
‘Euthanasia “cannot be a default for Canada’s failure to fulfill its human rights obligations,” said Marie-Claude Landry, the head of its Human Rights Commission.’ Euthanasia is being used as a way to avoid caring for disabled patients. 4/
Even among other countries with legal euthanasia, Canada’s policies stand out as reckless. Unlike in Belgium or the Netherlands, there is little oversight and no requirement to have exhausted other treatment options, among other differences. 5/
The article also points out that there is almost no recourse families/surrogates can take to hold doctors accountable because the “law does not allow for families to review euthanasia requests or be privy to hospitals’ decisions”. 6/
Overall, this article is a very helpful resource for understanding the impacts and trajectory of Canada’s euthanasia laws. As access to euthanasia expands, more Canadians will be at serious risk of unnecessary death. 7/
Want to learn more about similar issues happening in the US and why many disabled community members oppose assisted suicide and euthanasia? Check this quick piece on our website: https://notdeadyet.org/assisted-suicide-talking-points 8/
Here are some more important quotes from the article– read on! 9/
“[G]rave concern” [was] voiced last year by three U.N. human rights experts, who wrote that Canada’s euthanasia law appeared to violate the agency’s Universal Declaration of Human Rights. They said the law had a “discriminatory impact” on disabled people
The association of Canadian health professionals who provide euthanasia tells physicians and nurses to inform patients if they might qualify to be killed, as one of their possible “clinical care options.”
Heidi Janz, an assistant adjunct professor in Disability Ethics at the University of Alberta, said “a person with disabilities in Canada has to jump through so many hoops to get support that it can often be enough to tip the scales” and lead them to euthanasia.
Catherine Frazee, a professor emerita at Toronto’s Ryerson University, said …“It’s difficult to quantify it, because there is no easy way to track these cases, but I and other advocates are hearing regularly from disabled people every week who are considering (euthanasia).”
Next year, the country is set to allow people to be killed exclusively for mental health reasons. It is also considering extending euthanasia to “mature” minors — children under 18 who meet the same requirements as adults.
[Note: The hyperlink above leads to a PDF image scan of the article and the page it appears on. The full, screen reader accessible text of the article is below.]
The Quincy Sun, August 18, 2022
John B. Kelly
38 years ago an accident left me paralyzed below my shoulders. My father was brokenhearted and wished I had died instead. His hopelessness about my life, however painful for me, was but a simple reflection of widespread prejudice against disabled people.
A few years after my injury, Jack Kevorkian became a sort of folk hero for “helping” terminally ill people die through his “self deliverance” machine. It later came out that more than two thirds of his clients were not terminal at all, but disabled people, primarily women, in psychological distress.
Over time, 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 Harvard study recently found) view our “quality-of-life” as worse. Disability advocates have raised concerns about the fate of disabled people like Oregonian Sarah McSweeney and Texan Michael Hickson. Both wanted to live, both were loved by family and caregivers, but they died after hospital personnel denied them treatment based on their disabilities.
Over the last 25 years first Oregon, then additional states and Washington DC established assisted suicide programs for people expected to die within six months. Proponent rhetoric has focused on compassion for people’s physical pain and suffering, and the hope of a choiceful, peaceful end.
The reality, as shown by the top five reported “end of life concerns” in Oregon, hinge not on pain, but on people’s “existential distress,” as one study termed it, in reaction to the disabling features of their illness: depending on and feeling like a burden on other people, losing abilities, losing the respect of self and others (“loss of dignity”), and shame over incontinence.
Prominent bioethicist Thaddeus Pope concedes that “Everybody who’s using medical aid in dying is disabled. And probably you could go to the next step and say the reason they want medical aid in dying is because of their disability.” To Pope, any disability a patient finds “personally intolerable” is sufficient reason to assist their suicide.
In Massachusetts, assisted suicide bills have been put forward every session for the last 20 years. Proponents proclaim strong public support for the measure, but that support is shallow. In the weeks leading up to the 2012 ballot question on assisted suicide, polls showed 64% support.* The ballot question lost, 51%-49%. Now supporters say that 77% of Massachusetts residents support the bill, based on a poll question seeking compassion for terminally ill people “to end their suffering,” with its implication of physical pain.
State House Speaker Ron Mariano declared “We have a very divided House of Representatives. There’s not a 77 percent affirmative vote in the House right now.”
With the end of the legislative session on July 31, the bill died.
Disability rights advocates appreciate the willingness of many legislators to take our concerns seriously. We worry, with death reframed as a benefit for severely disabled people, that increased legalization will bring expansion of eligibility. Pope points out that the US is unique in the world for limiting assisted suicide to terminal people, and that every other jurisdiction, including Canada, offers euthanasia on demand to non-dying disabled people. He predicts that non-terminal disabled people will become eligible in the US. In Canada, disabled people have been euthanized because they were denied needed care or couldn’t find safe housing for multiple chemical sensitivities.
There are unsolvable problems with all assisted suicide laws. First, real choice resides with insurers, whose bottom line favors delay or denial of treatment. Dr. Brian Callister reported trying to refer two patients for life-saving but expensive procedures in Oregon and California, only to hear that the insurers limited coverage to hospice and assisted suicide.
Second, when people feel they have lost their dignity and feel like a burden on others, they are vulnerable to pressure and outright coercion to sacrifice themselves for others benefit. Abuse yearly affects one in 10 elders, exacerbated by COVID-19 restrictions. A self-interested heir can push a patient to make the request, serve as a witness along with a “friend,” pick up the drugs and, because no disinterested witness is required at the death, administer the drugs themselves. The law grants immunity to anyone who assists in the death who say they acted “in good faith.” Deadly abuse goes unpunished and unnoticed.
Third, terminal prognoses are notoriously inaccurate. NPR reported a few years ago that nearly one in five people who enter hospice survive the six-month benefit. Oregon revealed last year that just 4% of patients live past six months, meaning that the difference between 4% and almost 20% represents the body count of people who weren’t really dying. People who oppose capital punishment because of the inevitability of executing an innocent person should take note.
The 2012 Massachusetts ballot results and the patient demographics in states like California show there is a social class, race, and ethnicity component in the use of and support for assisted suicide. A 2013 Pew Research Center study showed that Blacks oppose assisted suicide by 65%-29%, and Latinos by 65%-32%. Majority Latino Lawrence voted 69% against the 2012 question, while white working class towns like Taunton and Gardner also opposed. Wealthier, whiter Massachusetts towns voted heavily in favor. In California, 94% of reported assisted suicides have been by non-Hispanic whites, more than twice the group’s share of the state population. Almost no black people have used the program.
The answer is to address people’s real needs. That means a fully funded Medicare home care benefit to reduce burden and keep people out of nursing homes. It means more and better palliative care. And for people whose discomfort cannot be otherwise relieved, there is the option of palliative sedation, whereby a person is sedated to the point of comfort while the dying process takes place. The answer is not medically assisted suicide. We disabled people demand full civil and human rights, equal protection under the law, equal suicide prevention, and more respect throughout society.
John B. Kelly is the director of Second Thoughts MA.
*Note to readers: in the hardcopy version of this essay, John Kelly wrote that polls showed 68% support for the 2012 Ballot Question 2 weeks before the election. The relevant Suffolk University poll, however, taken September 17, 2012, shows that support at 64%. We made the change to the accurate number.
On June 16, 2022, a forty-four-year-old Italian citizen named Federico Carboni became the first patient in the history of his country to die by medically assisted suicide. Twelve years ago, Carboni was working as a trucker when he found himself seriously injured in a traffic accident that put him into a coma. When he awakened from the coma, he was a quadriplegic.
Kathleen Nicole O’Neal
What I find most haunting about Carboni’s death are some of his last words, statements that he made explaining his decision to seek medically assisted suicide. Said Carboni, “I do not deny that I am sorry to take leave of life. I would be false and a liar if I said the opposite because life is fantastic, and we only have one. But unfortunately, it went like this. I have done everything possible to be able to live as well as possible and try to recover the maximum from my disability, but by now I am both mentally and physically exhausted. I do not have a minimum of autonomy in daily life, I am at the mercy of events, I depend on others for everything, I am like a boat adrift in the ocean. I am aware of my physical condition and future prospects so I am totally calm and calm about what I will do.”
What I find haunting about this is that ultimately this is an indictment of a terrible personal care services (aka caregiving) system, a system that fails to pay workers enough to create a reliable workforce and a system that fails to grant disabled people sufficient authority to control their services. Even the most physically disabled people should feel independent and empowered by their attendant services and apparently this is not what was happening in Carboni’s life.
To take one well known example, Stephen Hawking was a severely physically disabled person who nonetheless exercised great autonomy in his life. Even after his diagnosis of amyotrophic lateral sclerosis, Hawking would go on to get married, publish books, and lecture internationally. He was not “at the mercy of events”; he was a figure who actively shaped scientific history. And while Hawking’s genius is remarkable, the resources which he had at his disposal in order to live his life on his own terms should be available to all disabled people everywhere in the world.
When a disabled person says that they “do not have a minimum of autonomy in daily life,” then that is an indictment of a society and a system that disrespects their equality and civil rights. And the solution to this is not to push assisted suicide as the way to deal with medically complicated individuals – it is to seek to ensure the autonomy of the disabled person in the personal care services relationship. Simply put, assisted suicide is not a solution but an extension of the devaluation disabled people experience. It’s like saying, “Disability equals no autonomy so prepare to die.”
Those who support assisted suicide have attempted to frame the issue as one of personal choice. Hence, the once appropriately named Hemlock Society now euphemistically and misleadingly refers to itself as Compassion and Choices. But what happens to disabled people all too often involves a lack of both compassion and choices and assisted suicide is not the answer to this reality.
In reality, needing care need not be a horrible thing. Says UK disability advocate Lucy Webster, “The things that I have enjoyed and been most proud of would not have happened without good care. From experiencing university (the studying and the partying) to holidaying in far-flung places, my life has been made possible by the young women who help me. Without them, I wouldn’t have the countless warm memories of nights spent at the theatre, or gossiping and dancing with pals. It is impossible to conceive of being able to work without my PAs – I certainly wouldn’t have had the opportunities that led to me writing this column. But I have, and you are reading it, and I cannot see anything to pity in that.”
All disabled people should have excellent personal care attendants of their choice on demand. These are the real choices which we need in our society, but these are not the choices that are being framed for us in reference to medical assistance in death. Instead we are presented with phony “choices” – live with absolutely appalling, or even non-existent, services or die.
Federico Carboni did not deserve the death penalty. He deserved what Lucy Webster has. He deserved attendant services that centered his autonomy, his needs, his wants, his wishes, and his will. His life would have been different had he had that opportunity. We as a culture need to get over this notion that needing help with physical bodily functions is an affront to one’s dignity. This is the logic of ableism.
Assisted suicide is so often framed as an autonomous choice, but when you listen to the words of those who choose it, their lack of autonomy in making any choices in their lives comes barreling to light. There are many ways in which this troubling reality plays out in the lives of those individuals who find themselves targeted by assisted suicide laws and policies. For instance, in a groundbreaking 2019 report by the National Council on Disability entitled The Danger of Assisted Suicide Laws, the report’s authors write, “When assisted suicide is legalized in the context of the US healthcare system, it immediately becomes the cheapest treatment. Direct coercion is not necessary. If insurers deny, or even simply delay, approval of expensive life-sustaining treatment, patients can be steered toward hastening their deaths – and sometimes insurers help them to do so.”
We need to get over the notion that it is “undignified” for people with disabilities to need help. That’s ableism. And we need to quit pretending that those dying by assisted suicide are authors of an autonomous act of personal liberty. Instead of providing resources for these individuals to live autonomous lives and for their caregivers to be justly compensated economically for their work, we as a society are taking the easy way out and leaving little choice but for sick and disabled people, old or young, to kill themselves.
Assisted suicide represents a failure of society and that is what we need to recognize first and foremost about this phenomenon. We do not need to cooperate with the reframing of capitalist genocide of people with disabilities as a personal choice. Disabled people with autonomy don’t kill themselves. And if they lack autonomy, that is an indictment of the systems and individuals around them. “Compassion and Choices” is about anything but.
