Introducing the Not Dead Yet Video Blog!

Our News & Commentary Blog

Check out our first in a series of vlogs! Join Jules Good, our Assistant Director and Policy Analyst, (and Chompers, their cockatiel, who is always eager to join in on vlog recording) to learn about involuntary withdrawal of life-sustaining medical treatment. This video also features an interview with Anita Cameron, our Director of Minority Outreach, about racial disparities in the context of this issue. CW: life-sustaining medical treatment, ableism, racism, medical discrimination.

Here is the video transcript:

– Hi there, and welcome to the very first Not Dead Yet video blog or vlog for short. My name is Jules Good. I use they/them pronouns and I’m the assistant director and policy analyst at Not Dead Yet. I’m a white person with short brown hair. I wear black hearing aids that have pink molds in them. And today I have on a red and black flannel shirt. Today, we’re covering involuntary withdrawal of life-sustaining medical treatment. First, let’s work backwards to break down exactly what that means. Life-sustaining medical treatment is what it sounds like, things a medical professional does to keep a patient alive. We can call it LSMT for short. LSMT does not cure or reverse the patient’s illness or disability, but it keeps them alive. Some examples of LSMT are mechanical ventilation and feeding tubes. Withdrawal means to take away. So, a medical professional stops giving a patient LSMT. Finally, involuntary means that something is done by force or without consent. So, to put it all together, involuntary withdrawal of life-sustaining medical treatment means that a medical professional stops providing the care measures that are keeping a patient alive without the consent of the patient, if they’re able to consent, or without the consent of someone who is assigned to make decisions on the patient’s behalf. This is a scary thing to think about. No one wants to imagine that their life will be ended on someone else’s terms. There is currently no way of knowing exactly how many people have died from involuntary withdrawal of LSMT. However, we have seen an increasing amount of court cases where the plaintiff, or the person asking the court to hear the case, is a family member or caregiver of someone who died in this way. We’ll be doing a deeper dive into some of these court cases in a future video. From analyzing these cases and the available academic literature about involuntary treatment withdrawal, it is clear that certain groups of people are at higher risk of this happening to them. However, it is difficult to do an accurate risk assessment, since the data is only coming from cases that went to court, and families of deceased people without the resources to pursue legal action are not a part of this data. But from what we have available to us, we can see that older adults, especially those with chronic conditions, make up a good number of these cases. There are also several cases involving infants who needed LSMT from birth and either had treatment withdrawn or denied entirely. The majority of cases involve patients with chronic conditions such as cancer, and a smaller percentage were patients with a sudden traumatic injury. So we can surmise that infants, older adults, and people with chronic conditions have a higher prevalence of involuntary treatment withdrawal. Another contributing factor we need to look at is patient race. The time to treatment withdrawal is longer on average for BIPOC patients than non-Hispanic white patients. Available research, while limited, finds that Black patients are less likely to request palliative care or enter hospice and more likely to want aggressive LSMT, partially due to religious and cultural preferences towards preservation of life common amongst Black Americans. Non-Hispanic Black patients are more likely to have unmet needs related to pain management and emotional support than white patients. All of these factors can increase the odds that when a BIPOC patient has LSMT withdrawn, it is documented as happening against the wishes of the patient or the family. This could also help to explain why so many involuntary withdrawal cases center around BIPOC patients. For better insight into this topic, I talked with Anita Cameron, Not Dead Yet’s director of minority outreach and a prominent activist working to help people understand how race impacts disability issues and vice versa. Thank you so much for chatting with me, Anita. You are such a valued resource and member and person on our Not Dead Yet team and in the disability justice community as a whole. And so it’s really great to be able to chat with you about this. The first question that I have for you is, several studies point to the fact that Black patients and families are less likely to request hospice care and more likely to ask for aggressive life-sustaining medical treatment. Why do you think that could be?

– It all comes down to, you know, because we know how a lotta doctors are. We know that doctors tend to devalue Black lives and tend to give up on us easier, and so, you know, we tend to request, you know, heroic measures, you know, and all of that, you know. And we have to tell them, you know, to use, you know, any methods you can, heroic measures, life-saving treatments, you know. Because I don’t think they would think to do that, especially if you’re poor, you know, especially if they kinda looked at you and decided, you know, “Well, you know, your life isn’t worth.” I mean, we’ve had that so much in the Black community that, you know, that’s why we do it, you know. I mean, I look at, and it’s kinda getting personal, I mean, my wife, who happens to be white, doesn’t want heroic measures. But me, I do, you know, because I want you to do everything possible for me, whatever it is, whatever you can think of to save my life. You know, because I’ve seen so many people who they get ill, you know, they go into coma, whatnot, they’re in coma for months and then they come out, you know. And had they not, had heroic measures not been done, you know, they would’ve died. And so, yeah, just because of the racial disparities in health care and all of that and how I know that is. I mean, coming from years of Black person and from other Black folks that I’ve talked to or that I’ve read about, that’s the issue, you know. Yeah, we don’t wanna be murdered. We don’t wanna be just allowed to die, so we just putting it out there that that’s what we want.

– Yeah, thank you for that. That absolutely makes sense. And you know, something that I noticed kind of as I was looking through the data that is available is that most of the reporting is on voluntary withdrawal of life-sustaining treatment, and for all the reasons you just said, oftentimes, Black patients are much less likely than white patients to request withdrawal. And so, I think when we look at the court cases that are out there, we see a lot of plaintiffs who are the patients or the families of patients of color because they are more likely to, if that care is taken away, it’s not done voluntarily for all the reasons you just talked about, so yeah. Another question I have for you is that a lot of researchers have pointed to a lack of good communication between providers and Black families as a reason for low satisfaction with Black patient care outcomes. What do you think is causing some of these communication issues?

– Same thing, racism, bias. You know, not being culturally competent, not, you know, people, providers like just kinda dismissing our concerns or our fears, you know. And so, yeah, all of that racism and bias spills over into how we’re communicated with or not.

– Yeah, yeah, so then, that bias not only impacts the patients but also families and caregivers who are trying to communicate with the care team.

– Yeah.

– Yeah. And then, so it seems really clear that there’s a lack of research that’s explicitly about involuntary withdrawal of treatment in general. As we move to fill this research gap, how can we ensure that Black experiences are highlighted in this work and how might traditional research methods in a hospital setting disadvantage or maybe misportray the experiences of Black patients?

– I think by the time you get to the hospital, you know, or even get in a room or whatnot, they’ve already, doctors have already determined what your course is gonna be. You know, if you by what happened with Michael Hickson and how he was deemed to have an upwards of 70% chance of survival, but it was determined within minutes, you know, that they were just gonna allow him to die, that he had no quality of life. And so, you know, I see that happen, well, I think a lot of times, like with Black patients, so like a lot of these studies are paid, you know, and they pay you in some kind of fashion. And a lot of Black patients are not selected for that for whatever, you know, reasons. Often, the studies are done without knowledge or consent, ’cause who’s gonna tell you. Barely, I think probably only twice in my life have I been told, “Okay, you’re, you know, you’re the subject of a study,” or, you know, “Would you like to participate, you know, in this study or whatnot?” But, you know, talking to, I think that the providers, you know, there has to be a willingness to engage with, you know, engage with people, engage with their family members, not trying to convince them, you know, of things, but you know, just to say, “Okay, that decision was made, you know. How did that come about?” You know, or whatever. I mean, and I think, sometimes it’s a bias or racism, and then I think sometimes, you know, providers don’t know how to talk to folks, whether they’re disabled or whether they’re Black. They don’t know how to deal. And I’ve literally heard, you know, had people tell me, “I don’t know how to talk to you people.” And literally, you people. “I don’t know how to talk to you people.” You know, and so, you know, that’s one, you know, way where, you know, Black patients and family and caregivers could get the short end of the stick in hospital situations because providers don’t wanna talk. Providers don’t wanna, you know, deal. They wanna come in, do whatever it is they’re gonna do and get out. And you know, I hear, you know, the stories and everything where it’s some providers kinda get to know their patients, but I’ve seen that they’re almost always white. I think with Black patients, assumptions automatically get made.

– Yeah, yeah, absolutely, and I mean, I can only imagine the kind of power dynamics that are at play between patient and doctor anyway when you’re in a hospital setting and feeling like the eyes are on you, you know, all of the time, how magnified that must be for Black patients and other patients of color.

– We just assumed, it’s assumed that we’re incompetent. It really is. And even by non-white doctors and Black doctors, because it’s so pervasive and so, you know, ingrained, you know, that I saw a study years ago that say even Black doctors treat their Black patients different to their white patients. That’s just how ingrained this is. And when you, you know, when you go to medical school and it’s like, “Okay, well, they’re the experts. They’re the ones that know and they’re saying, ‘Oh yeah, Black folks have thicker skins, kinda like animals, so we experience pain differently.'” You know, and you have people who don’t look like you saying these things and you’re like, “Okay, I mean, I guess,” you know? And then, you know, we kinda know too that I think for some of us Black folks, it’s almost like we gotta out-white the white folks in order to be successful. Kinda like Black cops, you know. You gotta be worse, you know, in order to be accepted and, you know, and all of that. And so, I think that, yeah, that that plays a part as well.

– So now that we know what involuntary withdrawal of LSMT is and who it is happening to, our next question is, why is this happening? And more importantly, why do medical professionals who withdraw treatment even have a fighting chance in court? To understand that, we have to talk about medical futility. If a doctor claims that a requested treatment will not positively impact the patient’s medical condition or quality of life, they might say the treatment is medically futile. Because doctors are held in high regard due to their years of training and perceived expertise, they are often taken at their word when they a say treatment is medically futile for a patient. When a patient or their surrogate objects to a futility judgment, it’s important to examine the power dynamics at play. Because doctors have more institutional power than patients or their families do, it is vital that they prescribe care that embodies a combination of medical best practice and respect for the wishes of the patient and surrogate decision makers. But they can’t do that if they have skewed beliefs about which lives are worth living and which are not. This is where quality of life judgments often riddled with ableism come in, and that’s where we’ll pick up on a future video where we’ll talk about medical ableism and have a deeper discussion about what quality of life really means. Thanks for watching. If you liked this video, please share it. Feel free to comment your questions or suggestions for future video topics. To learn more about our work, visit www.NotDeadYet.org. Thanks. A quick addendum to this episode of the Not Dead Yet vlog. I put it in a visual medium but totally forgot to describe it verbally in the video, but all of the citations for any sources we cited throughout the video are going to be available in the video description, and they’re numbered in the order that they occurred over the course of the video. So, if you would like to check those out, please feel free to do so in the episode description right below the video, thanks.

Lisa Blumberg: Getting Beyond Advance Medical Directives

advance directives, Conversation Project, DNR, Do-Not-Resuscitate, Dr. Ferdinando Mirarchi, end-of-life care, Health care decision-making, life-sustaining treatment, Lisa Blumberg, Our News & Commentary Blog, supported decision making, treatment withdrawal, , , ,
Photo of Lisa Blumberg, head and shoulders shot of a smiling woman with short gray hair and a dark blue blouse seated with a desk of files and books in the background.
Lisa Blumberg

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.

FOOTNOTES

  1. https://khn.org/news/article/advance-care-planning-palliative-care-experts-paradigm-shift/

2.Ibid

  1. http://notdeadyet.org/disability-perspectives-on-public-policy-in-advance-care-planningMirarchi, et al., TRIAD III: Nationwide Assessment of Living Wills and No Not Resuscitate Orders, Journal of Emergency Medicine, Volume 42, Issue 5 , Pages 511-520, May 2012

  2. http://notdeadyet.org/disability-perspectives-on-public-policy-in-advance-care-planning

  3. https://theconversationproject.org/wp-content/uploads/2020/12/ConversationStarterGuide.pdf

6.http://notdeadyet.org/2017/08/anita-cameron-three-big-reasons-black-people-should-join-the-anti-doctor-assisted-suicide-movement.html https://notdeadyet.org/2020/04/anita-cameron-racial-disparities-in-the-age-of-covid-19.html  

https://www.bostonglobe.com/2020/03/27/opinion/coronavirus-doesnt-discriminate-neither-should-testing-treatment/?p1=Article_Feed_AuthorQuery

7. https://theconversationproject.org/wp-content/uploads/2020/12/ConversationStarterGuide.pdf

  1. https://khn.org/news/article/advance-care-planning-palliative-care-experts-paradigm-shift/

  2. https://www.nytimes.com/2011/12/04/magazine/can-ambien-wake-minimally-conscious.html

  3. Ibid. https://khn.org/news/article/advance-care-planning-palliative-care-experts-paradigm-shift/

  4. Ibid.

  5. Ibid.

  6. https://supporteddecisions.org/about-supported-decision-making/

 

Response: “Neurologic Diseases and MAiD” in The American Journal of Bioethics

"death with dignity", "end of life", ableism, advocacy, aid in dying, Americans with Disabilities Act, assisted suicide, bioethics, euthanasia, Our News & Commentary Blog, , , ,

Not Dead Yet, the Resistance

Jules Good writes in response to “Neurologic Diseases and MAiD: Aid-In-Dying Laws Create an Underclass of Patients Based on Disability” by Lonny Shavelson, Thaddeus M. Pope, Margaret Pabst Battin, Alicia Oulette & Benzi Kluger, published in The American Journal of Bioethics 16 August 2022:

Jules Good, a white person with very short red-brown hair, pictured from the chest up, smiling.
Jules Good (they/them)

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.

Jules Good: An Important Article On Euthanasia of Disabled People in Canada

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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. 

Jules Good, a white person with very short red-brown hair, pictured from the chest up, smiling.
Jules Good (they/them)

  1. Canada’s euthanasia laws are extremely dangerous. This crucial article by Maria Cheng @AP explains why. We’ll highlight some parts of the article in this thread, but highly encourage you to read the whole thing if you can: https://apnews.com/article/covid-science-health-toronto-7c631558a457188d2bd2b5cfd360a867?s=03

  2. 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/

  3. 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/

  4.  ‘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/

  5. 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/

  6. 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/

  7. 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/ 

  8. 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/

  9. Here are some more important quotes from the article– read on! 9/

  10. “[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

  11. 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.”

  12. 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. 

  13. 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).”

  14. 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.

John Kelly Op-Ed Opposing Assisted Suicide Bill Published In The Quincy Sun

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The Answer Is Not Medically Assisted Suicide – Disabled People Demand Full Civil, Human Rights

[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

Head and shoulders photo of smiling short haired white man with dark-rimmed glasses wearing a peach colored shirt, with wheelchair headrest and sip-and-puff operating switch visible in the frame.
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.