We mourn the death of the great John Kelly

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

I am shocked and saddened by the loss of John Kelly, the leader of the disability rights group, Second Thoughts an activist with Not Dead Yet and a leader of Progressives Against Medical Assisted Suicide.

John was an amazing disability rights activist leader and tireless in his opposition to medical assisted suicide. John was an amazing leader, advocate, speaker, a warrior for truth.

John was a gifted orator and incredibly funny and witty.

He was a great collaborator, life few others. He worked with everyone.

I remember John coming to Toronto to speak at our Euthanasia Prevention Coalition conference. He was profound, excellent and funny. 

But life with a disability was always present. The next morning he thanked one of the doctors who was attending the conference for saving his life. I can't remember exactly what happened, but in the night he had a medical emergency.

Similar to Diane Coleman, the founder of Not Dead Yet who died last November and Stephen Mendelsohn who died in June, John's death is an incredible loss.

Here are some articles by or about John Kelly.

• Disabilities group has Second Thoughts on assisted suicide (Link). 
• Disability leader speaks out against assisted suicide in Massachusetts (Link).
• Assisted Suicide goes to a vote in Massachusetts (Link).
• John Kelly speaks out on disability and assisted suicide (Link). 
• Disability opposition to assisted suicide helped secure third defeat in New England states this session (Link). 
• Assisted Suicide. Just Too Dangerous (Link). 
• Disability rights organizations oppose assisted suicide (Link).  
• Assisted suicide laws are more dangerous than people acknowledge (Link). 
• John Kelly: Say No to assisted suicide expansion in Oregon (Link). 
• Alex Schadenberg and John Kelly on Radio Sputnik (Link). 
• John Kelly: Testimony opposing Washington DC assisted suicide bill (Link). 
• John Kelly: Second Thoughts testimony against California assisted suicide bill (Link). 
• John Kelly: Assisted suicide laws and bills are "Riddled with Falsehoods" (Link). 
• People with disabilities comment on Me Before You (Link). 
• John Kelly: Testimony opposing New Jersey assisted suicide bill (Link).
• Assisted suicide. Vulnerable to abuse (Link). 
• John Kelly: New Mexico assisted suicide bill deserved to die (Link). 
• Assisted suicide would put pressure on disabled to die (Link). 
• John Kelly's incredible presentation on why the disability community opposes assisted suicide (Link). 
• John Kelly: The case for death with dignity collapses under scrutiny (Link).
• John Kelly: People lose their lives to misdiagnosis, coercion, abuse and depression (Link).
• Assisted suicide: What seems like dignity can turn out to be anything but (Link).
• Disability rights leaders praise Massachusetts court decision (Link).
• John Kelly: Push for assisted suicide raises questions over disability rights (Link).
• Oppose the Massachusetts assisted suicide bills (Link). 
• John Kelly: The answer is not medically assisted suicide (Link).
  

California's assisted suicide deaths surge. People with disabilities steered to death.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Article: California assisted suicide deaths increase by 63% in 2022. (Link)

James Reinl wrote an excellent article that was published in the Daily Mail on August 15 on the 63% surge in 2022 California assisted suicide deaths. Reinl reports on the data but he also received input from myself and several people with disabilities for his report. Reinl states:

Record numbers of people ended their lives in California last year in America's biggest doctor-assisted suicide program, after lawmakers made it easier for residents to get their hands on lethal drugs.

Last year, 1,270 people got fatal prescriptions under the state's End of Life Option Act (ELOA), and 853 people used them to end their lives, the California Department of Public Health said in its annual report.

That's a jump from 863 scripts and 522 deaths the previous year.

The surge in assisted suicides came after California lawmakers in 2021 backed a law that shortened from 15 days to 48 hours the time needed to apply for a cocktail of suicide drugs. That law took effect in January.

Matt Valliere

Matt Valliere, director of the Patients' Rights Action Fund, told Reinl:

'It's no wonder that the number of assisted suicides soared in the year after the California legislature effectively removed the original 15-day cooling-off period,'

'Most Medi-Cal patients cannot get a mental health consult in less than 72 hours and are not guaranteed palliative care, but now, they can get suicide drugs in 48 hours and the state will pay for it every time.'

I was questioned by Reinl on the possible under-reporting of assisted suicide in California:

Alex Schadenberg

Alex Schadenberg, director of the Euthanasia Prevention Coalition, warned that many US assisted-suicide programs have unreliable data, as not all doctors accurately report scripts and deaths back to the state health body.

In California last year, doctors wrote 294 prescriptions for which there was an 'unknown ingestion status,' says the 15-page report.

That could mean... that life-threatening drugs are sitting unused in a drawer, or that the patient used them to kill themselves and the death was not recorded.

'This self-reporting system makes it is impossible to know when a doctor does not send in a report or abuses the law,' said Schadenberg.

Reinl commented on the lawsuit that was filed in April to overturn the California Assisted Suicide Act:

Several campaign groups for disabled people earlier this year filed a lawsuit to declare California's ELOA 'unlawful and unconstitutional' because it violates the Americans with Disabilities Act.

In their suit, they complain about the bias they faced trying to get health care during the coronavirus pandemic and say the system is too quick to offer assisted suicides.

People with disabilities often struggle to get the medical care they need and, as a result, may be quick to seek assisted suicide as an option, lawyers in the case say.

Ingrid Tischer (left)

Reinl interviewed Ingrid Tischer and Diane Coleman, from Not Dead Yet, a group representing people with disabilities that are directly involved with the lawsuit:

Ingrid Tischer, one of the plaintiffs in the lawsuit, who lives with a form of muscular dystrophy, says doctors were unwilling to treat her properly when she contracted pneumonia during COVID-19.

'The law gets in your head. That's what happened to me,' says Tischer.

A non-disabled person is steered towards suicide prevention. And the disabled person is steered toward a suicide prescription.'

Diane Coleman

Diane Coleman, a woman with neuromuscular disabilities who has used a wheelchair since childhood, and now heads the national rights group Not Dead Yet, is also involved in the lawsuit.

'Assisted suicide is just one of the many symptoms of an ableist eugenics society that believes life with a disability is a fate worse than death,' she said.

Reinl also includes interviews with disability leaders, Brianna Hammond, John Kelly and Anita Cameron, and an interview with a man named Christopher, whose father died by assisted suicide in Oregon.

Euthanasia: Wrong is wrong, even if people are doing it.

By Meghan Schrader

Meghan Schrader

Meghan is an autistic person who is an instructor at E4 Texas at the University of Texas (Austin) and a EPC-USA board member.

I was reflecting the other day on how I first became aware of the issues of euthanasia  and assisted suicide, and what my experience indicates about a "majority" support for euthanizing people with disabilities. 

Back in 1998, during my last year of middle school, I had to take a class called Creative Problem Solving. It was basically an ethics class where people had to think through our opinions about controversial social issues. Our class studied the death penalty in-depth, but we talked about other issues too, and one of the issues we talked about was whether it was ok to help people with disabilities die by suicide.

John Kelly’s 1998 editorial about the death of 21-year-old, newly quadriplegic African American man Roosevelt Dawson at the hands of doctor Kevorkian was in the Boston Globe at that time; I think that’s what inspired my Massachusetts teacher to lead the discussion. He described the case; telling us that Dawson had been released from the hospital following a paralyzing infection, despite the hospital knowing that he intended to go to Dr. Kevorkian. “Wait, you mean they let him out of the hospital even though they knew that he was planning to die by suicide?” I asked. “That’s a violation of the Americans with Disabilities Act.” One other person agreed. “It’s wrong to kill people,” he said. However, almost everyone else in the class said nothing. I think that one other person said, “Well, I wouldn’t want to live like that either.” As a Special Education student, the connection between what we were discussing and the oppression of disabled people generally was blatantly obvious to me. “But think about all the technology we have nowadays,” I objected. “There are plenty of ways to accommodate people who are quadriplegic to lead fulfilling lives.” At the time, the term “ableism” wasn’t really in the public lexicon, so I used the only words I could come up with: “that’s discrimination,” I said, “it’s wrong to help people kill themselves because they have disabilities.” The lone other objector in the class agreed.

Then the teacher read a poem by Canadian poet Earl Birney. In it, two mountain climbers, Bobbi and David, ascend a peak together. On the way up, David kills a wounded bird. Bobbi notes: “That day returning we found a robin gyrating In grass, wing-broken. I caught it to tame but David took and killed it, and said, ‘Could you teach it to fly?’” Hence, the character David basically has the perspective that utilitarians and often general society has toward disabled individuals: accommodating disability is a hassle and eliminating disabled people is the easiest thing to do.

Then, in an ironic twist, David falls fifty feet, leaving him severely injured. Since David can’t feel his legs, he assumes that he will be paralyzed for life, and will need a wheelchair. Bobbi offers to stay with him or go for help, but David wants her to push him off a nearby cliff.

The teacher stopped reading the poem at that point and posed this question to the class: Should Bobbi push David off the cliff?

Again, there was the same pattern, with me and this one other guy objecting. “Of course she should not push him off a cliff,” I said, “she hasn’t even called 911 yet. What if he’s not paralyzed? And even if he was, that doesn’t mean that his life is worthless and she should push him off a cliff.” “Yeah, everyone has the equal right to live,” the objecting young man said.

As with our earlier discussion about Roosevelt Dawon’s suicide, most of the people in the class simply sat silently, looking uncomfortable. But, one of the class’s consummate bullies was more vocal about his perspective: “Of course she should push him off the cliff,” he said. “He’s a useless lump of flesh and he’ll burden everyone around him. What use does he have to society?” (This same bully had contributed to our class discussions about the death penalty by proudly saying that he would be willing to kill his own mother in the electric chair; I hope that he grew out of that type of thinking.)

Unfortunately, the bully’s perspective was the one that prevailed: most of the people in the class who were finally willing to say something agreed that Bobbi should push David off the cliff. And, what do you know, when the teacher finished the poem, we learned that she did just that.

I think that this anecdote from my eighth-grade classroom illustrates that personal choice shouldn’t always be sacrosanct. The Davids of the world aren’t entitled to conscript society into the rule of Bobbi so that the medical system can help them apply their nihilistic views about disability to themselves. Preventing violence and hate means that in equitable societies, majorities are obliged to cede some of their power to protect the rights of minorities.

From what I can tell, that middle school discussion was basically a microcosm of what most of contemporary human society has done in regard to euthanasia and its impact on the lives of disabled people. Most people either ignore it, or they are ok with it. However, this is a clear example of a time when communal support for an evil idea has been wrought from social conditioning and bigotry. Majority support doesn’t make something right, and the majority should not always get what it wants.

Boston Globe articles promote the legalization of assisted suicide.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

The Boston Globe published two articles by Robert Weisman on December 11, 2022 promoting the legalization of assisted suicide in Massachusetts. The articles, which are free advertising for the assisted suicide lobby, are oriented to helping the assisted suicide lobby urge legislators to legalize assisted suicide in the upcoming legislative session. (Article 1) (Article 2).

Based on the tone of the articles, it appears that the Boston Globe plans to strongly support the legalization of assisted suicide in Massachusetts.

The first article begins by quoting Rep James O'Day, a Worcester Democrat and the lead sponsor of the assisted suicide bill, who says that he hopes that the assisted suicide bill can pass in 2022.

The article then quotes Governor Maura Healey who states that she would support the bill under certain conditions.

In the last legislature, the assisted suicide bill passed in the Joint Committee on Public Health but failed to advance in the Joint Committee on Healthcare Financing.

The article does state that opposition to the bill continues. Weisman writes:

House Speaker Ronald Mariano last spring said representatives in his chamber remained “very divided” on the issue. Mariano, through a spokesman, declined a request for an interview for this story. Senate President Karen Spilka similarly declined to discuss the matter. In separate statements, both promised to continue reviewing the bill in conversations with their colleagues in the upcoming session.

But the article continues with promoting assisted suicide by quoting State Senator Joanne Comerford, the Senate sponsor of the past assisted suicide bill as stating:

The idea of government restricting the end-of-life options of people in pain “becomes dangerous,”

The reality is that legalizing assisted suicide is dangerous.

The second article interviews several people who had family members die a difficult death and a few people with terminal and chronic conditions who "want the option."

John Kelly

Nonetheless the second article does create some balance by interviewing John Kelly, the Director of Second Thoughts Massachusetts. Weisman writes:

Disability-rights advocate John Kelly, who lives in Boston’s Fenway neighborhood, is director of Second Thoughts Massachusetts, a group opposing what it calls “assisted suicide.” He’s also a quadriplegic who injured his spinal cord in a sledding accident 38 years ago.

Kelly, 64, has testified against medical aid-in-dying legislation and organized a rally against the appeal to legalize it through the Supreme Judicial Court. He condemns a “better dead than disabled” mindset he sees in those distressed about loss of control at the end of their lives.

“Proponents say it’s about pain and suffering,” Kelly said. “But it’s relatively privileged people’s response to their own disability and dependence on others.”

Folks with disabilities often grapple with a lack of access to health care and home care services, he said. “Everyone should receive effective palliative care,” he said. “But we also believe people should be able to stay in their home and have adequate care there. This is really a values discussion masquerading as a medical issue.”

Kelly is also highly skeptical of treating a physician’s six-month prognosis as an exact science.

“People have to remember that doctors are often wrong about predicting when someone will die,” he said.

The Massachusetts Supreme Court is deliberating on the Kligler case that asked the court to find a right to assisted suicide in Massachusetts. That decision is expected soon.

The answer is not medically assisted suicide.

This article was published in the Quincy Sun on August 18, 2022.

John Kelly

By John Kelly, Director of the disability rights group Second Thoughts

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.

Take Action Now: Oppose the Massachusetts Assisted Suicide bills.

John Kelly Director, Second Thoughts

Second Thoughts MA is a grassroots group of disability rights advocates from Massachusetts and the region who oppose the legalization of assisted suicide as a deadly form of discrimination against disabled people. We demand social justice against laws, policies, and media messages fueled by a “better dead than disabled” mindset. 

We organized in 2012 to help defeat assisted suicide Ballot Question 2. High turnout among black and Latinx voters made victory certain. Since then, we have successfully advocated against three more assisted suicide bills, led a month-long campaign in 2016 against the disability euthanasia movie “Me before You,” and are now advocating against the assisted suicide bills S.1384 / H.2381 in the legislature.

Please! Take Action NOW and oppose bills S.1384 and H 2381!

Reject Assisted Suicide

Insurer control

Real “choice” belongs to insurers, who can deny prescribed treatments at will, even if lifesaving. In Oregon, you can qualify as “terminal” if you can’t afford your treatment, or if treatment stops for any reason. Legalization makes assisted suicide a “medical treatment,” a so-called “benefit” to be extended to ever more people, and that will always be the most profitable and “cost-effective.”

Persuasion –> abuse

Everyone is vulnerable to suggestion and persuasion. Nothing prevents self-interested family members and medical professionals from pushing for assisted suicide. Meanwhile, it is estimated that 1 in 10 Massachusetts older adults are abused every year, and COVID-19 has only made it worse. Nothing in the law can stop an heir or abusive caregiver from steering someone towards assisted suicide, witnessing the request, picking up the lethal dose, and even administering the drug — no witnesses are required at the death, so who would know? The Oregon law has invited every sort of abuse. 

Misdiagnosis

Studies show that 12%-15% of people entering hospice with a terminal diagnosis outlive their prognosis. In 23 years in Oregon, 1900 people have been prescribed lethal drugs, but the survival rate past six months is only 4%. This suggests that a substantial number died by suicide when they were not dying. Oregonian Jeanette Hall wrote the Boston Globe in 2011 that after a terminal diagnosis she sought assisted suicide, but her doctor persuaded her to try more treatment. “If my doctor had believed in assisted suicide, I would be dead,” she wrote. She has now lived more than 20 years post diagnosis. Any other elective “treatment” with such deadly results would never be tolerated!

Not pain, but distress about disability

The Oregon reports show the first five “end-of-life concerns” deal with not pain, but “existential distress” over the disabling aspects of serious illness, from depending on others for care to grief over lost abilities, loss of social status (“dignity”), incontinence, and feeling like a burden. Proponents speak of “quality-of-life.”

Leading California prescriber Lonny Shavelson says, “It’s almost never about pain, it’s about dignity and control.” Palliative care expert Ira Byock said that almost all pain is controllable, and that marketing bills as all about pain “is a bait and switch.” In the eyes of the state, everyone must be seen as having equal dignity. We champion fully funded home and community-based services, for a caring society rooted in mutual aid and interdependence.

Medical Prejudice

In a recent national survey of practicing US physicians, “82.4 percent reported that people with significant disability have worse quality of life than nondisabled people. . . . [T]hese findings about physicians’ perceptions of this population raise questions about ensuring equitable care to people with disability. Potentially biased views among physicians could contribute to persistent health care disparities affecting people with disability.” Do Not Resuscitate orders have been placed in patient files against their wishes. Media messages and movies like “Me Before You” and “Million Dollar Baby” promote the mindset of “better dead than disabled.” 

Racial Disparities

Medical prejudice and neglect results in racial disparities in diagnosis and treatment of diabetes, cancer, and heart trouble. COVID-19 has killed Black, Indigenous, and People of Color (BIPOC) at a much higher rate than Whites. Assisted suicide legalization makes it more likely that Black patients will be “written off” as better off dead, like Black Texan quadriplegic Michael Hickson.

Social Divide

As the voting results from Ballot Question 2 in 2012 show, assisted suicide pits wealthier, whiter districts against those with poorer people and people of color. For long-standing reasons, Black and Latinx people oppose assisted suicide by 2-1 margins. The four most Latinx cities in the Commonwealth – Lawrence, Chelsea, Holyoke, and Springfield – all voted strongly against Question 2. For example, Lawrence voted 69%-31% no. White working-class and more socially conservative towns also rejected the ballot measure by strong majorities. The state must not adopt one social group’s focus on personal autonomy and status over communities that value above all connection and family.

Depression

Assisted suicide laws lead to the denial of suicide prevention services to seriously ill and disabled people, a violation of the Americans with Disabilities Act’s guarantee of equal program access. Assisted suicide laws redefine depression and feeling like a burden as “rational,” rather than as evidence of impairment or need for intervention. Suicide contagion is real and assisted suicide laws send the wrong message that suicide is an answer to personal problems.

Alternative of Palliative Sedation

Anyone dying in discomfort that is not otherwise relievable may legally receive palliative sedation. The patient is sedated to the point where the discomfort is relieved while the dying process takes place. So there’s no need for legalized assisted suicide.

Disability

In a society full of crushing ableism, reported “end of life” concerns all have to do with negative reactions to disability: distress and shame over dependence on others, lost abilities, loss of dignity, feeling like a burden and incontinence. But no one needs to die to have dignity. We champion meaning found in mutual aid and interdependence.

Outside Influence is Unavoidable

In her New Year’s Eve 2019 ruling against a state constitutional right to die, Suffolk Superior Court Judge Mary K. Ames summed up some of the stresses that might hurry the moment when people ingest the poison.

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.

Summary

If Massachusetts legalizes assisted suicide, some people’s lives will be ended without their consent, through insurance denials, medical mistakes, and all the various forms of coercion and abuse. No safeguards have ever been enacted, or even proposed, that can prevent this outcome, which can never be undone.

Defeating Assisted Suicide (January 17) Webinar

EPC - USA and the Euthanasia Prevention Coalition are co-sponsoring a webinar on how to defeat assisted suicide in your state.

We expect that many states will be debating bills to legalize assisted suicide in 2022. 

When: January 17, 2022 (7 pm EST)

Register in advance for this meeting: (Registration Link)

It is likely that Connecticut, Maryland, Massachusetts and New York, among many other states, will debate assisted suicide bills in 2022. We are predicting a strong push by the assisted suicide lobby in the Northeastern US.

This webinar will provide information and strategy for groups and individuals defeat assisted suicide bills in their state.

Presenters include:  

Alex Schadenberg, Executive Director, Euthanasia Prevention Coalition, 

Attorney Sara Buscher, Chair of EPC-USA,

Peter Wolfgang, Executive Director, Family Institute of Connecticut, 

John Kelly, Director of the disability rights group, Second Thoughts Massachusetts.

Register in advance for this meeting: (Registration Link)

After registering, you will receive a confirmation email containing information about joining the meeting.

Push for assisted suicide raises questions over disability rights

This letter was published by the Boston Globe and Not Dead Yet on September 7, 2021

John 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

Previous articles on assisted suicide by John Kelly (Link). 

Second Thoughts CT leader Cathy Ludlum on opposing assisted suicide: “there is no safeguard that can counter the social stigma of needing help with intimate care."

This article was published by Not Dead Yet on February 24, 2021.

By John B. Kelly, the director of the disability rights group, Second Thoughts.

On January 14, Second Thoughts CT leader Cathy Ludlum joined WPLR host John Voket on his show “For the People” to explain why legalized assisted suicide is simply too dangerous to implement. The full transcript is here.

In the 15-minute segment (beginning at 37:20), Cathy meets Voket where he is, and agrees that on its surface, many people would think it’s “a good idea to put the choice of when and how one dies into the hands of the individual.”

But when you start presenting people with other things to think about, a lot of times people may support the theory, but then the implementation worries them and they cannot support it as they had in the past. In other words, talking to one of us or all of us often gives them “second thoughts.” So that’s where the name of our group came from and we’ve been active and mobilized since 2013, as I said.

Cathy pulls the conversation from a narrow focus on individual autonomy to the realities of a society prejudiced against disabled people, who “already have challenges whenever we go to the hospital or we try to get healthcare.”

What those of us in the disability community are trying to get across is, there is no safeguard that can counter the social stigma of needing help with intimate care, of having to rely on others for support, or of seeing your caregivers tired and wondering if the world would be better off without you.

Indeed, Oregon doctors reported that in 2019 “feeling like a burden” motivated more than half of the patients who were prescribed a lethal overdose. Cathy doesn’t get into the details, but the other top four “end-of-life concerns” also relate to psychological distress about the disabling aspects of serious illness, not physical pain as proponents insist.

There is also no possible safeguard to prevent coercion:

with no independent person there at the time of death, how can we ever know that it was the individual’s choice instead of a person who has been threatened or coerced or feels that they have no other choice than to end their own life?

Whenever disabled people point out the dangers of assisted suicide, journalists and legislators routinely ask, as Voket does, whether “legislation can be crafted to carve out the disability community that is so significantly concerned.”

Cathy patiently explains that the legislation “changes the way healthcare is structured” by codifying in law a medical practice that produces death as a beneficial outcome. “And so it changes the doctor-patient relationship. It changes the way insurance and financial reimbursement and such work.”

If some people are understood in state law and medical practice to be literally “better off dead” than alive, “it involves changing the whole way we look at life and death.” I would add that legalized assisted suicide logically leads to doctors and people in a patient’s orbit recommending, persuading, and instigating that death. We have the examples of Kathryn Judson, who overheard her husband’s doctor telling him that he should commit suicide to spare her the trouble of caring for him, or Kate Cheney’s family that was intent on her death.

There is no way to protect disabled people because

there is a tendency in the medical system already to think of us as terminally ill even though we may all live on for years with the right support. I understand the need to try and create some middle ground, and I wish we could do that, but I don’t see a way of making that happen.

It’s long been known that doctors and medical personnel underestimate the “quality of life” experienced by disabled people, who love our lives as much as nondisabled people.

Voket asks whether the legislation has gone terribly wrong in other places, and Cathy refers to a list of abuses and complications compiled by the Disability Rights Education and Defense Fund (DREDF). Cathy mentions without name the case of Michael Freeland, “with a 40-year history of suicide attempts being given the drug.”

It’s also been true that, once established as a benefit, assisted suicide (or in some other countries, straight up euthanasia) gets extended to more and more conditions, such as non-terminal conditions like diabetes and multiple sclerosis in Oregon, and depression and feeling “tired of life” in other countries. People can become “terminal” because their insurance denies coverage to and people can’t afford necessary treatment, or they stop their life-sustaining treatment.

Voket concludes the interview by asking Cathy if Second Thoughts CT could support “the other potential proposals involving end-of-life legislation that might hit the State House floor this session?”

Cathy affirms Second Thoughts’ support for “palliative care and anything that would support a person as they are nearing the end of life,” and of “good suicide prevention strategies.”

Our question is, how can the State of Connecticut be promoting suicide prevention while possibly at the same time promoting suicide assistance? And the difference is what label you wear, whether you are deemed as terminally ill, elderly, having a “complete” life — which is something they use in other places, or “disabled.”

Cathy loves her life and is upbeat about how supports can meet the challenges of disability. As she stated at the beginning of the interview, the problem isn’t disability but the deadly prejudice against it. And the answer is to remove that prejudice, not the people it targets for death.