John Kelly’s testimony covers medical mistakes, class and race/ethnic divide and more

Massachusetts Public Health Committee hearing on the state’s assisted suicide bill:

John B. Kelly Oral Testimony against EOLA H.2381/S.1384 October 1, 2021

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

Thank you. Everyone knows that doctors make mistakes, and studies show that 12 to 15 percent of people outlive the six-month hospice benefit for supposedly terminal people. But this year Oregon revealed that only 4 percent of its program participants have lived past six months. This suggests that a substantial number, up to one in 10!, ended their lives prematurely because they trusted their terminal diagnosis. For someone who barely escaped a terminal MISdiagnosis with their life, see the 2011 Boston Globe letter by Jeanette Hall. No one would tolerate any other elective, so-called “medical practice” this deadly.

The 2012 ballot question on assisted suicide shows a class and race/ethnic divide: wealthier towns in favor, more working-class towns, both white and of color, against. Brookline 67% in favor, heavily Latinx Lawrence 69% against. Black and Latinx people have long opposed assisted suicide by more than 2 to 1, and often have a well-earned mistrust of the medical system. These laws make dominant the outlook of a professional class obsessed with individual achievement, autonomy, and status – thus the constant use of the word “dignity,” over the worldview of a working-class that relies on a family support system, connection, and reverence for elders. By undermining the value placed on old, ill, and disabled people, these laws promote writing off people as having too low a quality-of-life.

I would like to point to the overwhelming oppression of people living with disabilities. Mainstream reactions to the death toll of COVID-19 were filled with reassurances like “only old and fragile people are dying, we don’t need to worry.”

People like me serve as examples of better dead than disabled in movies like “Me Before You,” “Whose Life Is It Anyway?,” and “The Sea Inside.”

The Oregon reports show that assisted suicide isn’t about physical pain, it’s about escaping the “existential distress” that some people experience over depending on others, of feeling undignified and like a burden, of being incontinent. As leading purveyor of assisted suicide Lonny Shavelson told the Washington Post in 2016, “It’s almost never about pain. It’s about dignity and control.” Shavelson should know, he is the chair of the newly formed American Clinicians Academy on Medical Aid in Dying.

As someone paralyzed below the shoulders, I am terrified of the prospect of a state law sponsoring people’s suicides as rational responses to disability.  Massachusetts should instead fully fund home care and provide world-class palliative care. Equality under the law depends on it.

ARTICLES REFERENCED

Jeanette Hall, “She pushed for legal right to die, and – thankfully – was rebuffed,” letter to the editor, Boston Globe, October 4, 2011.

Pamela Harris, et al., “Can Hospices Predict which Patients Will Die within Six Months?,” J Palliat Med. 2014 Aug 1; 17(8): 894–898. doi: 10.1089/jpm.2013.0631.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4118712/

Madeleine Li, et al, “Medical Assistance in Dying — Implementing a Hospital-Based Program in Canada,” N Engl J Med 2017; 376:2082-2088.

http://www.nejm.org/doi/full/10.1056/NEJMms1700606

Liz Szabo, “Death with dignity laws and the desire to control how one’s life ends,” Washington Post, October 24, 2016.

https://www.washingtonpost.com/national/health-science/death-with-dignity-laws-and-the-desire-to-control-how-ones-life-ends/2016/10/24/6882d1e6-9629-11e6-bc79-af1cd3d2984b_story.html

NYAIL Presents 2021 David Veatch Advocacy Achievement Award to Diane Coleman

NYAIL is the New York Association on Independent Living, a statewide, not-for-profit membership association created by and composed of Independent Living Centers across New York State. I was honored to receive NYAIL’s 2021 David Veatch Advocacy Achievement Award on September 29th. Below are my words of gratitude spoken at their virtual conference.

Diane Coleman’s NYAIL Award Remarks

Photo of Diane Coleman wearing red print top and red sweater, smiling with gray bobbed hair, wire rimmed glasses and a nasal breathing mask
Diane Coleman – white woman with breathing mask & red sweater

It’s such a tremendous honor and I can’t tell you how moved I am by your kind words.

NYAIL is really a role model for disability activism on the issues Not Dead Yet addresses. First, there’s the more public and recognized work in opposing assisted suicide laws. NYAIL’s policy statement is a great piece to share with legislators. NYAIL and CIL leaders like Meghan Parker and Cliff Perez have also published opinion pieces opposing these laws in mainstream newspapers, explaining the dangers they pose to people with disabilities. Many of you have testified and organized turn out in advocacy events to ensure this message is heard.

What’s less obvious is the breadth and depth of NYAIL’s and all of your work on access to healthcare and home and community based services, much of which overlaps with NDY’s efforts to ensure that life-sustaining medical treatment is never involuntarily withheld from an individual. We oppose insurers deciding who gets what care based on quality of life judgments using QALYs and similar measures. We object to healthcare providers urging the attitude of better dead than disabled as grounds for rushing to judgment and pulling the plug after an injury. And we don’t want to see despair over the struggle for in home personal care services cause people to give up hope.

As many of you know, the disability community recently lost a fierce warrior, and I lost a personal companion in this work, Marilyn Golden of the Disability Rights Education and Defense Fund. At one point, she composed these words I’d like to share to express her reasons for devoting so much of herself to the assisted suicide issue: “If assisted suicide is legal, some people’s lives will be ended without their consent, through mistakes and abuse. No safeguards have ever been enacted or even proposed, that can prevent this outcome, which can never be undone.”

So thank you NYAIL and all of you for the privilege of working along side you and I look forward to continuing together in the fight for our lives.

NDY Letter to California Governor Newsom Urging Veto of Assisted Suicide Expansion Bill

Not Dead Yet, the Resistance

September 23, 2021

Via Email leg.unit@gov.ca.gov

The Honorable Gavin Newsom
Governor of the State of California
State Capitol
Sacramento, CA 95814

RE: Urging Veto of SB 380

Dear Governor Newsom:

The purpose of this letter is to urge you to veto SB 380. If signed, SB 380 would eliminate critical protections contained in California’s End of Life Options Act or, to be more specific, its assisted suicide law.

Not Dead Yet is a national disability rights group that opposes legalization of assisted suicide as a deadly form of discrimination. These laws deny people with advanced illnesses, who are virtually always disabled, suicide prevention services on an equal basis to others. They also grant broad legal immunities to people involved in an individual’s death without meaningful protections against coercion or wrongdoing.

Only a few years after the original law’s passage, SB 380 would drastically shorten the waiting period between an individual’s requests for physician-assisted suicide to 48 hours rather than 15 days. This new law would also end the requirement that the individual make a final attestation affirming their choice before administering the drug. Especially in light of the fact that no independent witness is required to confirm that lethal drugs were administered by the individual rather than another person, these requirements are essential protections against coercion and abuse. They should not be removed.

Not Dead Yet also supports the letters urging you to veto SB 380 submitted by the Disability Rights Education & Defense Fund (DREDF) and Disability Rights California (DRC).

We urge you to review the research cited by DREDF, leading to the following conclusion:

[T]he existing requirements of a sufficient period of time between requests, together with a final attestation, are necessary to protect against miscommunication (particularly between a physician and a patient from a different cultural background from the physician), coercion, a failure to offer and provide alternative supports to assisted suicide, and the undue influence of ableism. Two days is far too short. Moreover, eliminating the final attestation is completely contrary to the purportedly shared value among proponents and opponents of informed choice.

Both DREDF and DRC also share NDY’s concerns about the medical ableism that the pandemic has revealed. As DRC put it:

Assisted suicide is not about choice when people with disabilities lack access to sufficient medical care. The COVID-19 Pandemic revealed long standing disparities in our health care delivery system as we witnessed disproportionate rates of infection and mortality in our aging and disability community as well as our Black and Latinx communities. Now more than ever we should be focused on addressing inequities in our health care delivery system, not expanding access to assisted suicide.

We also encourage you to pay attention to an op-ed (Keep the Safeguards in California’s ‘End of Life’ law) published in Capitol Weekly concerning SB 380 by DREDF’s Marilyn Golden, an internationally prominent disability advocate who tragically passed away this week. She said:

This rush to erode the safeguards included in the 2015 End of Life Option Act is dangerous public policy. There is simply no data or science to support removing them so soon. . . . [W]ith the benefit of hindsight, it appears that the protections proponents touted as safeguards were no more than a ruse to get the original law passed.

Please veto SB 380.

Sincerely,

Diane Coleman, JD

President & CEO

In Mourning At the Passing of Marilyn Golden

The disability community is reeling from the heartbreaking news of the passing of Marilyn Golden, Senior Policy Analyst at the Disability Rights Education & Defense Fund (DREDF) yesterday (Sept. 21). Anyone who follows NDY knows that Marilyn has been a mission critical partner in our work opposing assisted suicide laws. That can be seen on both the NDY and DREDF websites.

What is less obvious is the decade of behind the scenes communications, brainstorming, analysis and companionship in the fight that we shared for so long. I have more than 10,000 emails from Marilyn reflecting invaluable and ongoing dialogue.

I can’t express my sense of loss and am not yet focused enough to share thoughts on her incredible contributions to NDY, but her bio is here.

head and shoulders photo of smiling woman with brown curly hair and wire rimmed glasses, a dark top and brick wall behind her
Marilyn Golden

 

John Kelly Letter Published In Boston Globe

Push for assisted suicide raises questions over disability rights

September 7, 2021

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

In response to an essay on the Victorian fantasy of a peaceful death, two letter writers (“Beyond the fantasy of a gentle death,” Aug. 29) called on the state Legislature to pass the proposed assisted suicide bill.

Paula Bacon and Molly DeHaas Walsh describe the circumstances of difficult deaths and believe that assisted suicide would bring them control, choice, and dignity when their pain and suffering become unbearable.

But when doctors misdiagnose people as terminal, the possibility of real choice disappears. Studies show that 12 percent to 15 percent of people outlive hospice, but in Oregon, with its Death With Dignity Act, only about 4 percent of people have lived past six months. This suggests that as many as 1 in 10 people ended their life prematurely. No one would tolerate any other elective treatment this deadly.

The Oregon reports show that the main “end-of-life concerns” stem not from physical pain but from “existential distress” over the disabling aspects of serious illness, such as dependence, status loss (“dignity”), incontinence, and feeling like a burden on others.

As someone paralyzed below the shoulders, I am terrified of the prospect of a state law sponsoring people’s suicides as rational responses to disability. Massachusetts should instead fully fund home care and provide world-class palliative care. Equality under the law depends on it.

John B. Kelly

Boston