The Extreme Ableism of Assisted Suicide

I just came across a brilliant letter that John Kelly sent to the Washington, D.C. Council when they were considering an assisted suicide bill in 2016. I should have posted it here then, but I am doing so now (lightly edited), because it’s one of the best discussions I’ve read of the core problem that assisted suicide advocates have with disability.

Let me just highlight one example from the letter, a Washington Post quote from Dan Diaz, who is still working for Compassion and Choices, traveling around the country doing press conferences and testifying on their behalf in favor of these dangerous bills.

“If I find myself in a situation where I can’t go to the bathroom on my own, where someone has to change my diapers, where I can’t feed myself, where I can’t care for the people around me, where other people have to move me around to keep me from having bedsores, I would then submit, ‘Is that really living?’ ” Diaz said.

Although assisted suicide proponents often accuse opponents of fearing death, the letter below demonstrates how profoundly proponents fear and loath disability. Their ableism is so extreme that they want to carve a vaguely defined segment of old, ill and disabled people out of suicide prevention, enlist our healthcare system in streamlining our path to death, and immunizing everyone involved from any legal consequences, thereby denying us the equal protection of the law.

Second Thoughts Massachusetts Disability Rights Advocates Against Assisted Suicide

November 1, 2016

Chairman Mendelson, Councilmembers:

My name is John Kelly. I am the New England Regional Director for Not Dead Yet, the national disability rights group that has long opposed euthanasia and assisted suicide. I am also the director of Not Dead Yet’s Massachusetts state affiliate, Second Thoughts MA: Disability Rights Advocates against Assisted Suicide.

I refer you to two recent articles in the Washington Post. Read together, they must lead you to vote against assisted suicide bill B21-38. Assisted suicide is hardly about physical pain, despite what proponents have told you. And assisted suicide is promoted by one specific group in the district and country, wealthier white people, while resisted by poorer people and people of color specifically.

The first article came out last Monday, October 24. Titled “‘Death with dignity’ laws and the desire to control how one’s life ends,” this article exposes the main argument for assisted suicide, “that terminally ill patients have the right to die without suffering intractable pain in their final days or weeks,” as a big lie.

Author Liz Szabo reports that assisted suicide proponent group Compassion & Choices “focuses heavily on the need to relieve dying patients of pain.” One ad has the assisted suicide bill giving “a dying person the option to avoid the worst pain and suffering at the end of life.”

Yet the latest research shows that terminally ill patients who seek aid in dying aren’t primarily concerned about pain. Those who have actually used these laws have been far more concerned about controlling the way they exit the world than about controlling pain.

As one California doctor said, “It’s almost never about pain. It’s about dignity and control.”

And that’s what the Oregon and Washington data show. Pain is the least of people’s concerns. Doctors report people requesting the lethal drugs because of psychosocial suffering about becoming disabled through their illness. It’s mental distress about becoming dependent on other people (“losing autonomy” 92%), losing abilities (“less able to engage in activities making life enjoyable” 90%), shame and perceived/actual loss of social status (“loss of dignity” 79%), needing help with incontinence (“losing control of bodily functions” 48%), and believing that suicide would leave loved ones better off (“burden on family, friends/caregivers” 41%).

Dr. Ira Byock, a leading palliative care expert, told the Post, “it’s a bait and switch. We’re actually helping people hasten their deaths because of existential suffering. That’s chilling to me.” As Byock said, almost all pain is controllable. Hospice staff are on call 24 hours a day, and caregivers can be trained in administering emergency pain medication until staff arrive.

The real reasons that people want to commit assisted suicide, proponents admit, are about being dependent on other people for personal care. We disability rights activists have been pointing this out all along.

Barbara Coombs Lee, who as an insurance company executive wrote Oregon’s assisted suicide law, brought up the case of the woman who committed assisted suicide because she was incontinent. The woman wrote that “the idea of having somebody take care of me like I am a little 2-month-old baby is just absolutely repulsive. It’s more painful than any of the pain from the cancer.”

Lee described scenarios of disability that she said were “worse than death.” Proponent Dan Diaz emphasized the supposed horrors of disability.

“If I find myself in a situation where I can’t go to the bathroom on my own, where someone has to change my diapers, where I can’t feed myself, where I can’t care for the people around me, where other people have to move me around to keep me from having bedsores, I would then submit, ‘Is that really living?’

This isn’t a public health bill, it’s a death before disability bill.

So this is what some of you are planning to vote for. You are not protecting DC residents from agonizing pain. You are promoting the particular views of one specific group of people, described by Obamacare architect Ezekiel Emanuel as predominantly “white, well-insured, and college-educated.” People who are used to being in control of every aspect of their lives.

So, like so much in the US, assisted suicide is an issue that cuts across class and race. The 2012 election map in Massachusetts shows that wealthier, whiter areas voted heavily for legalization, while working-class whites and people of color voted strongly against. People turning out for Barack Obama and current Sen. Elizabeth Warren defeated the proposal.

The second article, from October 17, by reporter of color Fenit Nirappil, was titled “Right-to-die law faces skepticism in nation’s capital: ‘it’s really aimed at old black people.’” It details the opposition to assisted suicide of Washington’s black majority.

Many in the black community distrust the health-care system and fear that racism in life will translate into discrimination in death, said Patricia King, a Georgetown Law School professor who has written about the racial dynamics of assisted death.

“Historically, African Americans have not had a lot of control over their bodies, and I don’t think offering them assisted suicide is going to make them feel more autonomous,” King said.

District residents told Nirappil of concerns that “low-income black senior citizens may be steered to an early death”, and that in the end, assisted suicide is really all about reducing government healthcare costs.

Derek Humphry, who founded the Hemlock Society (Compassion & Choices’ original name), wrote years ago of the “unspoken argument,” that assisted suicide will gain traction because of “the realities of the increasing cost of health care in an aging society, because in the final analysis, economics, not the quest for broadened individual liberties or increased autonomy, will drive assisted suicide to the plateau of acceptable practice.”

Assisted suicide, like suicide in general, is primarily practiced and promoted by white people. Nirappil reported that national leaders in the assisted suicide movement are all white, and that most of the participants at a recent rally were white. In the 18 year history of the Oregon assisted suicide law, only one black person has used the program. In a state that is now 22% nonwhite, 97% of assisted suicide deaths have been white.

Non-Hispanic whites also commit regular suicide at a rate 2.5 times that of blacks. Rather than importing a predominantly-white practice as a solution for the district, you must say no to this bill and the big lie it hides behind. Assisted suicide is not about protecting suffering people from physical pain, it’s about satisfying the control needs of a group of people, predominantly white, who would rather die than become dependent on another human being.

Please respect your constituents, understand the danger this bill represents, and reject this bill.

Thank you.

Lisa Blumberg: Life, Liberty and Security in Canada – Is this the way we are headed?

Dr. Ira Byock, a specialist in palliative care, a progressive Democrat and an opponent of assisted suicide laws has stated, “When doctor-induced death becomes an accepted response to the suffering of dying people, logical extensions grease the slippery slope.” (1)

Supporters of such laws have written, “It is reasonable to proceed incrementally…Thus, the restriction of physician assisted death to terminally ill patients should not necessarily be regarded as a permanent restriction.” (2)

During his recent campaign, Justin Trudeau, Canadian prime minister, explained why his government would not be appealing a Quebec Superior Court decision that struck down a requirement in federal and provincial assisted suicide and euthanasia laws that a person’s natural death be “reasonably foreseeable” before he or she can obtain doctor assisted death. (Note: In Canada, thousands have died by active euthanasia, while a tiny minority have used assisted suicide.) Trudeau said, “We recognize that court cases would come in, that people would be evolving as a society. We will move forward in a responsible way with legislation that responds to that.”(3)

The perspectives differ but the idea expressed is the same. Restrictions in the scope of assisted suicide laws can be blown through. They are there to help people accept the idea that part of a doctor’s role is to provide some patients with the means to die. “Aid in dying” laws will inevitably impact people with disabilities. The fight against legalized assisted suicide is indeed our fight. Canada is a cautionary tale.

Photo of two motorized wheelchair users in a room with bookcases, Nichole Gladu with post-polio syndrome and Jean Truchon with cerebral palsy. (Photo by Ivanoh Demers/Radio Canada)
Gladu & Truchon: Photo of two motorized wheelchair users in a room with bookcases, Nichole Gladu with post-polio syndrome and Jean Truchon with cerebral palsy. (Photo by Ivanoh Demers/Radio Canada)

The Quebec case was brought by Nicole Gladu, age 74 and a former journalist, and Jean Truchon who is 51 and has a degree in literature. The Montreal Gazette described their situation luridly. “Gladu and Truchon are ill and their health will never improve. They are trapped in bodies whose functions deteriorate every day. Gladu’s spine is twisted, she’s bound to a wheelchair and she only has the use of her right arm. Truchon moves with the aid of an electric wheelchair controlled by his mouth and he struggles to speak clearly. Over time, their illness will kill them, but because that death may not be imminent, neither was eligible for medical assistance in dying under provincial and federal law.” (4)

In more straightforward terms, Gladu and Truchon are people with childhood disabilities who now have age related issues. Gladu had polio at age 4 and at age 47 was diagnosed with post polio syndrome, which is a poorly understood condition that causes tiredness, weakness and breathing problems in some persons years after having polio.

Truchon was born with significant cerebral palsy. After university, he lived independently until several years ago, when spinal stenosis progressively decreased the function of his better arm. (5) Older adults with CP appear to be at unusual risk for spinal stenosis, i.e. the narrowing of the spinal column causing pressure on the cord. (6) Indeed it has been suggested that cervical spinal stenosis is a “hidden epidemic” in the aging CP community. Prompt identification and treatment is needed to prevent major consequences. (7) (For my experience with a delay in diagnosis of cervical stenosis, click https://www.eparent.com/exceptional-blog/the-surprise-of-cervical-spinal-stenosis/ ).

Managing disability and aging is far from a recognized public health priority. Neither is it high on the radar of most advocacy groups. Yet, given the number of people with disabilities who are baby boomers and generation X, disability/ableism will increasingly intersect with age/ageism. Without our activism, society could go any which way in its response.

At the 2017 press conference in which they announced they would challenge the restriction in the scope of the Canadian assisted suicide/euthanasia laws to persons whose death was reasonably foreseeable, Gladu said the act of breathing was taking most of her waning energy while Truchon indicated that he couldn’t face the prospect of life confined to an institution. (8)

The Superior Court of Quebec in a decision written by Judge Christine Beaudoin accordingly ruled the restriction “infringes life, liberty and security of the person guaranteed [by the Canadian Constitution]…to Mr. Jean Truchon and Ms. Nicole Gladu, in a manner inconsistent with the principles of fundamental justice…the reasonably foreseeable natural death requirement deprives both individuals and claimants of their autonomy and their choice to end their lives at the time and in the manner desired.”

Daniel Weinstock, a Canadian constitutional scholar noted in commentary on the ruling that “It may seem paradoxical to say that something that is going to abridge the life of a person affects their right to life, liberty and security. But it has become a standard Canadian constitutional argument that having to continue to live in conditions that one deems unacceptable, in virtue of their suffering, is a violation of one’s right to a certain quality of life.”(10)

What is being ignored is social reality. Truchon wants to die because his liberty and autonomy has been taken away from him. He lost the use of his better arm and now he is relegated to an institution due to lack of adequate in-home support. Although their conditions are different, his case is similar to that of Sean Tagert, a Canadian with ALS who wanted to live and be close to his young son for as long as possible but “chose” assisted suicide because he needed in-home services aides for four more hours a day than the government would authorize in order to stay home. (11)

One arm, four extra hours of aides, management of breathing difficulties that are relatively common and can be treated with noninvasive breathing supports – Can we let these things be used to justify medically approved and doctor induced death? It is Orwellian to call this security.

At the post ruling press conference, Gladu and Truchon seemed pleased with the decision. A court win is, after all, a court win. However both, fortunately, indicate that they are putting off plans for death, though their attorney Jean-Pierre Ménard said “This ruling — for the thousands of people living in despair — is like some light at the end of the tunnel”. (12) In other words, he seem to think that thousands of Canadians with disabilities will gratefully die.

The disability resistance is strong in Canada and they will prove him wrong.

As for us in the United States, we should realize that ideas and trends don’t observe borders. The Canadian trend is consistent with the mission of the broader worldwide euthanasia movement. We must broaden the opposition to legalized assisted suicide within the disability community and this is so, regardless of how the bills are written. We are at a crossroads.

Footnotes

  1. https://www.nytimes.com/roomfordebate/2014/10/06/expanding-the-right-to-die/doctor-assisted-suicide-is-unethical-and-dangerous
  2. Gunderson, Martin and Mayo, David J. “Restrictions for Physician Assisted Death to the Terminally Ill”, Hastings Center Report , November-December 2002
  3. https://nationalpost.com/pmn/news-pmn/canada-news-pmn/trudeau-defends-use-of-two-planes-calls-tory-criticism-a-far-right-tactic
  4. https://montrealgazette.com/news/quebec/quebec-patients-to-take-their-time-after-winning-right-to-die
  5. http://www.slaw.ca/2019/09/17/challenging-the-quebec-end-of-life-legislation-and-medically-assisted-dying-in-truchon/
  6. https://www.aacpdm.org/UserFiles/file/fact-sheet-spine-072415.pdf
  7. https://onlinelibrary.wiley.com/doi/pdf/10.1111/dmcn.19_13512
  8. https://www.theglobeandmail.com/news/national/montrealers-file-legal-action-contesting-restrictions-on-assisted-dying/article35308414/
  9. https://www.cbc.ca/news/canada/montreal/medically-assisted-dying-law-overturned-quebec-1.5279067
  10. https://montrealgazette.com/news/quebec/quebec-court-invalidates-some-requirements-for-assisted-death
  11. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6882029/
  12. https://montrealgazette.com/news/quebec/quebec-patients-to-take-their-time-after-winning-right-to-die

Disability Rights Advocates Hail Mass Court’s Rejection of Assisted Suicide

Second Thoughts Massachusetts Disability Rights Advocates Against Assisted Suicide

For Immediate Release: January 13, 2020 Contact: John B. Kelly, 617-952-3302; secondthoughtskelly@gmail.com; @2ndThoughtsMA

Disability Rights Advocates Hail Mass Court’s Rejection of Assisted Suicide

Second Thoughts Massachusetts praises the decision by Suffolk Superior Court Judge Mary K. Ames rejecting a right to physician-assisted suicide in the state. She ruled that any Massachusetts doctor who prescribes a lethal dosage of drugs could be subject to prosecution for involuntary manslaughter.

Second Thoughts director John B. Kelly said, “we are gratified that the court reaffirmed the law against assisted suicide, and referred the matter to the legislature where lawmaking belongs. Disability rights advocates will continue to press the legislature that assisted suicide is just too dangerous.”

Judge Ames wrote that at the point of a patient ingesting the lethal drugs, they would be vulnerable to improper persuasion. “In such a situation, there is a greater risk that temporary anger, depression, a misunderstanding of one’s prognosis, ignorance of alternatives, financial considerations, strain on family members or significant others, or improper persuasion may impact the decision.”

Ruthie Poole is president of the board of MPOWER, a group of people with lived experience of mental health diagnosis, trauma, and addiction. Poole said, “Personally, as someone who has been suicidal in the past, I can relate to the desire for ‘a painless and easy way out.’ However, depression is treatable and reversible. Suicide is not. The current bill in the legislature pretends otherwise.”

Second Thoughts Massachusetts is a group of disability rights advocates opposed to the legalization of assisted suicide. We testified against the “End of Life Options” bill S.1208 at the hearing in June and held a well-attended legislative briefing a few days after.

United Spinal Assn. Helped Fight A Futility Judgment And Won!

The hospital may not have called it a “futility judgment” when they pushed Chris Dunn to go into hospice as an alternative to spinal cord injury rehabilitation, but it’s hard to see it any other way.

Here’s an extended excerpt from United Spinal Association’s New Mobility article “Refusing To Die: The Chris Dunn Story“:

By all accounts, Chris had a complicated situation. Using a ventilator alone limited the number of rehab facilities willing to consider him, but his injury had also left him mostly blind and necessitated the installation of a pacemaker and feeding tube.

“Carol [Dunn’s mother] felt like he had originally been denied from some rehabs because of his medical condition –because he had a lot going on,” says Wierbicky. “She thought they’d be able to revisit things and get him into rehab when he was more stable.”

When Carol kept getting rejected and hospital staff and administrators started suggesting alternatives and that she consider hospice, she grew frustrated.

“People kept shutting the door without even trying, without even giving us a chance,” she says. “That’s unacceptable to me.”

Wierbicky agreed. “It’s always shocking to me when we see cases where that doesn’t happen,” she says. “It became clear to me through this case that people living in rural states that don’t have dedicated spinal cord injury programs and those who are on ventilators are in an especially vulnerable position … all she ever wanted was for him to be evaluated by people who understand his condition. That seems like a very reasonable goal.”

“I’m not a fighter, but I never felt like I had a choice,” says Carol. “It wasn’t right and I wasn’t going to let it just sit.”

Working together, Carol and the United Spinal Resource Center team took the fight to get Chris into rehab to the next level. They enlisted Disability Rights Maine, state legislators and federal representatives and turned over every stone trying to find a suitable facility. They held weekly phone calls with hospital staff and MaineCare, the state’s Medicaid program.

Drugged up and confined to bed, Chris waited while dealing with a hospital staff that didn’t know what to do with him. “There would be nurses that would come in and tell me, ‘You know you’re making your son suffer,’” says Carol. “I mean, what’s a mother to do with that?”

Thanks to the relentless team effort and Carol’s fortitude, by early April, Shepherd Center in Atlanta was reemerging as a possible destination for Chris. Carol had looked into Shepherd earlier and been told it wasn’t an option because of Chris’s insurance, but after much wrangling they came to an agreement.

To read the whole article with photos and find out what happened, go here.

And to learn more about how futility judgments and policies endanger people with disabilities, check out the National Council on Disability bioethics series report, Medical Futility and Disability Bias.

Happy Holidays From Not Dead Yet!

People sometimes wonder if the subjects Not Dead Yet deals with every day get us down. But the reality is that you lift us up – every time you share the message that we are NOT “better dead than disabled,” every time you fight for the healthcare and supports we need, every time you prove our inherent DIGNITY by fighting the indignities society too often heaps upon all the beautiful, proud disabled people we are. A short NDY Annual Report is below. Thank you for all the forms of support you have given and please take comfort in knowing you have helped save lives.

If you are still looking to make a year end donation, please consider Not Dead Yet by going here. Wishing you love, peace and justice in the new year!

 

Photo of four lighted red candles with gold glitter, resting on an evergreen bed with a red bow and a poinsettia flower with gold glitter.
Photo of four lighted red candles with gold glitter, resting on an evergreen bed with a red bow and a poinsettia flower with gold glitter.

Not Dead Yet Annual Report of Activities: October 2018 – September 2019

The Center for Disability Rights (CDR) continued to extend support and sponsorship to Not Dead Yet (NDY), a national disability rights group headquartered in Rochester since 2008.

Publications: During the reporting year, NDY published 54 blog entries conveying a disability rights perspective on topics related to assisted suicide, euthanasia, medical ethics, third party decisions to withhold life-sustaining medical treatment and homicides of persons with disabilities. There were over 70,740 views of the website during the reporting year, and NDY posted 162 Facebook entries and 257 tweets. NDY posted five videos on Not Dead Yet’s You Tube channel.

Media: National NDY issued ten press releases. NDY staff, board and activists authored twelve op-eds published in mainstream outlets. NDY staff posted at least 14 online comments and one letter to the editor was published. NDY staff, board and advocates were interviewed for 8 radio and 11 TV broadcasts. There were at least 41 print or online articles that mentioned NDY, including Associated Press, New York Times, Politico, Huffington Post and Forbes.

Systems Advocacy: NDY staff and advocates pursued a number of key systems advocacy policy initiatives during the reporting year, using a combination of strategies and approaches.

  • Assisted Suicide: NDY opposed legalization of assisted suicide through training, community organizing and legislative testimony in 13 states. Out of 22 assisted suicide bills introduced in 2019 or carried over from 2018, only the New Jersey and Maine bills, and one Oregon amendment bill, passed. Disability advocates were credited in mainstream press with playing a significant role in preventing passage of these bills in many states.
  • National Council on Disability (NCD) Bioethics Project: NDY’s CEO Diane Coleman served as a consultant regarding assisted suicide, futility policies, and discriminatory organ transplant policies pertaining to organ procurement.
  • “Futility” Cases: NDY was contacted and assisted in efforts to save the lives of three disabled individuals whose health care providers or family planned to withdraw life sustaining healthcare.
  • Opposing QALYs: NDY participated in the Partnership to Improve Patient Care Rapid Response Workgroup challenging the use of QALYs (Quality Adjusted Life Years) in health insurance coverage decisions. This included NDY issuing a public statement.
  • Advance Care Planning: NDY continued to challenge the bias against living with significant disability that is increasingly evident in the professional training and public education materials of prominent advance care planning programs. Among other activities, on November 15, NDY responded to the NY Dept. of Health Advance Care Planning Request for Information.
  • Non-Discrimination in Healthcare: NDY worked with DREDF to spearhead communications with the federal HHS Office for Civil Rights to advocate for improved policies on non-discrimination in organ transplant eligibility, futility and suicide prevention.

NDY also filed 5 public comments on various policy issues and signed on to 16 policy letters and position statements sponsored by other organizations.

Conference, Workshop & Other Training Presentations: Not Dead Yet staff, board and advocates provided 14 training presentations in person or through Skype or webinars.

Collaboration and Networking: Throughout the year, NDY continued to serve on a variety of committees involving NDY issues and related health care topics. These included, among others, NCIL’s Healthcare/PAS Committee, the NY Association on Independent Living Health Committee, and CDR’s Public Policy Committee.

Financial:

NDY operates under the fiscal sponsorship of the Center for Disability Rights (CDR). CDR’s fiscal year is the calendar year. Below are NDY’s revenue and expenses for 2018.

Revenue

Contributions $203,596

Expenses

Salaries $141,949

Fringe $30,885

Travel $2,267

Staff Development $174

Supplies, Postage, Materials $881

Memberships, Subscriptions $2,675

Communications, Website $461

Consultants, Contractual Services $25,220

Miscellaneous $525

Total Expenses $205,037

Net Rev/Exp ($1,441)

Year End Fund Balance $266,614