The Nation Magazine Features NDY & Disability Opposition To Assisted Suicide Laws

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The In the News page on the NDY website links to print and broadcast news pieces that include interview quotes or other mentions of Not Dead Yet or our disability allies. The vast majority of articles and broadcasts are about assisted suicide laws. The pattern, with rare exception, is that the attention on the disability perspective is a tiny fraction of the total piece.

That said, Sara Luterman’s article in The Nation, a magazine founded by abolitionists in 1865 and described as a “progressive American biweekly magazine that covers political and cultural news, opinion, and analysis,” is an incredible breakthrough. Entitled “Can Americans Really Make a Free Choice About Dying?“, Luterman’s piece tells the story of disability opposition to assisted suicide laws to progressives who have previously almost exclusively heard about conservative opponents. We hope our message will be heard.

Some quotes:

Disabled bodies are regarded with a sort of fetishistic curiosity at best and revulsion at worst. And people with disabilities are frequently not given the resources they need to live or the assistance they need to participate fully in society. The poverty rate for disabled people is more than double that of nondisabled people, and the unemployment rate for disabled people is more than double that of nondisabled people. The responsibility for care that is shirked by the state frequently falls on families, who are overwhelmed. Instead of being given the resources they need to thrive, many, if not most, people with disabilities are treated like expensive burdens.

Considering all of that, advocates ask, how could a disabled person’s decision to die be considered a free choice? It is not the disabilities that ruin lives, they say; it is the system and society that fails to support disabled people. “It’s not religious, nor is it pro-life,” said Diane Coleman, the president of Not Dead Yet, speaking of the advocacy movement. “It’s about going up against a ‘better dead than disabled’ mindset.”

[Anita] Cameron is an out and proud Black lesbian. She shared her thoughts on the “strange bedfellows” that the disability rights movement has made with the religious right on the subject of medical aid in dying. “The people I work with on a regular basis on this issue? A lot of them would not have me in their home,” Cameron said. “They would not eat dinner with me. They are diametrically opposed to my very existence. And yet somehow, we have managed to put that aside.”

The alliance is not without tension, but Cameron … sees it as part of a fight for survival: “We know how the medical community mistreats us. They want to get rid of us. If you’re sick, you can be pushed into assisted suicide…. As marginalized people, we see the discrimination we go through at the hands of the medical establishment.”

Jules Good, 23, is the assistant director of Not Dead Yet. They are autistic, deaf, and have a complex chronic illness. …”When I was 18, I got a pretty rough diagnosis. I was super depressed and attempted suicide. And when I went to my first counseling appointment with a new therapist after that happened, I explained my whole deal. And she looked me in the eye and said, ‘Yeah, I’d probably kill myself if I were you,'” Good told me….

Like Cameron, Good is uncomfortable with the alliance that the movement has built with the pro-life movement. When asked if it was difficult to work with these groups as a trans person, Good said …, “As much as I struggle sometimes with people who would probably prefer I wasn’t around, the goal of protecting people from dangerous legislation outweighs that for me, personally.”…

To read the whole article, go HERE.

 

Excellent Op-Ed by Disability Activist Daniese McMullen-Powell Published in Delaware

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Physician-assisted suicide discriminates against persons with disabilities

Daniese McMullin-Powell

May 23, 2023

Assisted suicide is a dangerous public policy that threatens the most vulnerable in society, especially people like me – people with disabilities. Upon initial consideration, many do not see how assisted suicide is particularly dangerous to the disability community. However, based on the weakening of the already-flimsy safeguards that is going on in other states that allow the deadly practice, the danger of abuse in assisted-suicide laws is real. I urge the Delaware Legislature to take a hard look at the facts of assisted suicide and to propose laws that help address the reasons people seek assisted suicide in the first place.

Assisted-suicide laws are inherently discriminatory and target people with disabilities. These laws lead to abuse and harm because the so-called safeguards within assisted-suicide laws are weak. According to a study published by the National Council on Disability, an independent federal agency, the safeguards in assisted-suicide laws are ineffective, and oversight of abuses and mistakes is absent. People with disabilities already face an uphill battle trying to receive fair treatment in a society that equates functionality with worth. It makes no sense to add to the disability community’s list of worries by legalizing a practice that would inevitably lead to abuse.

Alarmingly, in Oregon, where assisted suicide has been legal the longest, the safeguards that proponents used to pass assisted-suicide legislation are now being weakened and characterized as barriers. Originally, Oregon had a 15-day waiting period in its law, which was valuable because it gave patients time to reflect and seek a second medical opinion. After all, assisted suicide is not a reversible decision. However, in 2020, Oregon removed the 15-day waiting period for patients whose physicians believed they would die before the end of the 15-day waiting period. Last year, 20% of patients received the waiver, and some even died on the same day that they requested assisted suicide. This same-day suicide assistance doesn’t give patients time to seek a second opinion, or even to change their minds. Once legalized, there is always a push to make suicide more accessible. In truth, there are no safeguards that could adequately protect vulnerable people from abuse and harm due to assisted suicide. Even so, to remove existing safeguards, no matter how flimsy, would be foolish.

Assisted-suicide policy fails to address the primary reasons that drive people to seek it in the first place. Proponents claim that people seek assisted suicide to avoid unbearable pain at the end of life. However, this is simply untrue. According to data from Oregon, people most often cite disability-related concerns as their reason for seeking assisted suicide. Their top reasons include loss of autonomy, decreasing ability to participate in life activities and loss of dignity. These are serious concerns that people in the disability community live with every day. Instead of legalizing assisted suicide, society should focus on educating, and removing the stigma surrounding disability. We should focus on providing better care because the above concerns are all treatable with appropriate, multi-disciplinary care. If legalized, assisted suicide sends the wrong message to people with disabilities: You’re better off dead than alive.

As a result, assisted suicide is a deadly public policy that puts people with disabilities at greater risk for abuse and harm. The so-called safeguards in assisted suicide laws are flimsy at best and have been found ineffective at protecting patients from abuse. In states where assisted suicide is already legal, there are incremental steps being made to lessen what little safeguards are in place. At the end of the day, this confirms what we’ve always known: Assisted suicide is about fear of disability. I want to encourage our Delaware Legislature to educate the public and reduce the stigma around disability. The people of Delaware deserve quality medical care and supports at all stages of life, not a premature death.

Daniese McMullin-Powell is a disability advocate who lives in Newark.

John Kelly’s DE Testimony Deconstructs the Ableism of Assisted Suicide Proponents

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Testimony in Opposition to Delaware House Blll 140

Chair Minor-Brown, Vice Chair Harris, Members of the Committee on Health & Human Development:

My name is John B. Kelly. I am the New England Regional Director for Not Dead Yet, the leading national disability rights group opposing assisted suicide, futility judgments, and “better dead than disabled” policies. We organized in 1996 to help stop Kevorkian, whose client victims were presented in the media as terminal.  But two thirds of them were found by the New England Journal of Medicine to be NOT terminally ill but disabled.

I keep thinking about Canada, where people like me – I’m a quadriplegic paralyzed below the shoulders, but I am not terminally ill – have become eligible for their so-called “aid in dying” program – and by aid in dying Canada means euthanasia 99.9% of the time.

At first, Canada legalized euthanasia/assisted suicide for people whose deaths were “reasonably foreseeable,” but then expanded eligibility. There have been documented cases of disabled people being offered euthanasia instead of services.

In the US, proponents insist they only seek assisted suicide for people labelled “terminally ill,” meaning death is probable within six months, but there have already been calls to expand eligibility beyond six months and beyond people diagnosed terminally ill. For example, New Mexico’s HB 90, the Elizabeth Whitefield End Of Life Options Act, was submitted in 2019 with a definition of terminal illness encompassing all incurable and irreversible conditions that “will result in death within the foreseeable future.” The bill passed in 2021 after switching back to the six-month standard. When proponents testify before committees such as yours, they emphasize “safeguards.” But then they come back the following session and complain about “barriers” to care. So that 15 day waiting period, that becomes onerous, as does the 48-hour delay between written request and prescription.

From the first Oregon report in 1998 regarding its “Death with Dignity Act,” it’s been clear that use of assisted suicide has been most associated with perceptions of individual control and autonomy, not the experience or fear of physical pain. The reported “end of life concerns” in Oregon  hinge largely on people’s “existential distress,” as one study termed it, in reaction to the disabling features of their illness: “losing autonomy” (90%), “less able to engage in activities” (90%), “loss of dignity” (72%), “burden on others” (48%) and “losing control of bodily functions” (44%). These are all disability related concerns.

The best article on this issue is by Washington Post reporter Liz Szabo. In 2016, she reported that where assisted suicide has been legalized, proponents have succeeded in “convincing voters, lawmakers and courts that terminally ill patients have the right to die without suffering intractable pain in their final days or week.”

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.

No less an authority than Lonny Shavelson, first Chair of the American Clinical Academy on Medical Aid In Dying, told Szabo, “It’s almost never about pain, it’s about dignity and control.”

Szabo also quotes ethicist Ezekiel Emanuel on the social factors that motivate usage of the suicide drugs.

“The dominant reasons for wanting euthanasia or assisted suicide are psychological and involve control factors,” said Ezekiel Emanuel, chair of medical ethics and health policy at the University of Pennsylvania’s medical school. He noted that most of those who have used aid-in-dying laws are white, well insured and college-educated. “These are people who are used to controlling every aspect of their lives, and they want to control this aspect of their lives.”

Szabo reports on a 2009 study on 56 Oregon patients, who were found not to be concerned about current pain, but “quality-of-life” issues such as loss of autonomy and dependence on others.

Then she talked to leading opponent Dr. Ira Byock:

“It’s a bait-and-switch. We’re actually helping people hasten their deaths because of existential suffering. That’s chilling to me.”

Although right-to-die campaigns suggest that excruciating pain is often unavoidable, Byock said that “we can relieve the suffering of almost everyone that we care for if we have the time to prepare.”

Szabo spoke with Barbara Coombs Lee, co-author of the Oregon bill and former director of Compassion & Choices, who admitted that there are many kinds of suffering. In her book, Lee describes one person with incontinence saying that “I like doing things for myself, and 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.”

Advocate Dan Diaz, widower of Brittany Maynard, stressed as a point of pride the ableist prejudice fuels the movement.

Diaz said people shouldn’t underestimate how devastating it can be to lose one’s autonomy.

“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.

We disability rights advocates view the assisted suicide movement as a reaction to disability, especially dependence on other people. In September 2020, I debated bioethicist Thaddeus Pope, who conceded 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 February 2021, Pope said that the US is alone in limiting eligibility for assisted suicide to people diagnosed as terminal and predicted that eligibility will be extended to non-terminal disabled people. He said then that the focus was on expanding eligible prescribers to include advanced practice nurses and physician assistants, and reducing the waiting period between request and prescription. This strategy has succeeded in both areas in a number of states.

There is no way to contain eligibility to a narrow set of people. Especially when thousands of disabled Americans now live with conditions that in some states are seen as “worse than death.” Anorexia nervosa and diabetes now qualify as terminal conditions.

The problem for us disabled people is that we are already treated badly in the medical system.

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 nonverbal Oregonian Sarah McSweeney and Black Texan quadriplegic 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 supposed low quality-of-life.

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, Massachusetts, voted 69% against the 2012 Argos question, while white working class towns like Taunton and Gardner also opposed. Wealthier 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. Virtually no black people have used the program.

Black patients under legalized assisted suicide will be more likely to be “written off’ as better off dead, just as has happened with medical responses to COVID-19.

Meanwhile, terminal diagnoses are often wrong. Jeanette Hall wrote the Boston Globe in 2011 that she voted for Oregon’s Death with Dignity bill, and when she received a terminal diagnosis, sought assisted suicide from her doctor. He persuaded her to try more treatment, and she is still alive 20 years later! The late actress Valerie Harper reported in 2013 that she had been given three months to live. She lived six years, and in that time appeared in a movie and starred in a play.

Two years ago, Oregon revealed that 4% of people who entered the assisted suicide program were still alive after six-months. But NPR reported five years ago that nearly 20% of people who enter hospice outlive their six month prognosis. The difference between 4% and nearly 20% is the percent of people and their families who may have lost months, years, and in some cases decades of meaningful life.

That 4% survival rate in Oregon happens to match the percentage of people sentenced to death row who are estimated to be innocent. Many people, especially progressives, base their opposition to capital punishment at least in part on this unavoidable fact. We believe that people with serious illnesses and disabilities deserve the same level of concern.

In this and other ways, we are making social justice arguments against systemic discrimination against vulnerable communities. Indeed, Not Dead Yet, the national disability rights group I work for (Second Thoughts MA is the state affiliate), just joined a federal lawsuit against the state of California, arguing that its assisted suicide program violates the Americans with Disabilities Act and the Constitution by discriminating against disabled people. While younger, more able people receive suicide prevention services, old, ill, and disabled people all too often experience support for our deaths over support for our lives.

Delaware must not sponsor people’s suicides because other people consider them a burden, because they believe they are dying when they are not, and because they have been denied the treatment and support services that would keep them alive.

At the heart of requests for assisted suicide are unmet disability-related needs, but adequate supports such as a home care benefit could preserve people’s autonomy while relieving the emotional and financial burden on family and caregivers.

NPR’s Joe Shapiro Reports on Disability Discrimination Lawsuit Against Assisted Suicide

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From NPR’s Morning Edition:

Disability groups say California’s assisted suicide law discriminates against them

Heard on Morning Edition

Online article Link

[Note: To listen to NPR’s 3 minute audio, go HERE. Transcript from NPR is below.]

MICHEL MARTIN, HOST:

Disability groups are challenging a California law that allows terminally ill people to get drugs to end their lives. The groups say that people living with disabilities are at greater risk of being coerced into seeking those medications for assisted suicide. NPR’s Joseph Shapiro has this report.

JOSEPH SHAPIRO, BYLINE: People with disabilities often have a complicated relationship with the medical system. Many doctors make their lives better, even save their lives. But sometimes doctors deny care or even question if their lives are worth living. The pandemic heightened the fears of disabled people, people like Ingrid Tischer.

INGRID TISCHER: When I was in the hospital, I was afraid for the first time in my life in a hospital.

SHAPIRO: Tischer has a form of muscular dystrophy. She’s in her 50s now. She’s spent a lifetime around doctors, but something this time, in 2021 in the middle of the pandemic when she had pneumonia, threw her for a loop.

TISCHER: For me, it was a very solid gut punch.

SHAPIRO: At the hospital, a doctor was dismissive. She asked for therapy to regain her strength. In the past, she got care that brought her back from illnesses. This time the doctor said no.

TISCHER: He kind of looked at me and said, well, I mean, look at you. There’s nothing we can really do for you. And you’ve known this is coming for a long time, so why are you surprised?

SHAPIRO: Tischer says she was devastated, ready to go home and die. If a doctor had told her she should apply for California’s assisted suicide law, she says, she might well have said yes. To be clear, no doctor ever suggested that. She never got the pills needed to die. Instead, she got another doctor who gave her a different diagnosis. She got out of the hospital, she recovered, and today she’s working again and doing fine. Now, Tischer is one of the named plaintiffs on a California lawsuit filed this week that challenges the legality of the state’s 7-year-old End of Life Option Act.

MICHAEL BIEN: The law discriminates against people in a very dangerous way and steers and normalizes suicide for a particularly vulnerable part of the population.

SHAPIRO: That’s Michael Bien, the lawyer who was bringing the lawsuit on behalf of four disability groups. To many disabled people, the danger of subtle medical discrimination is real. In the pandemic, faced with possible shortages of ventilators and other treatments, several states told doctors and hospitals it was OK to deny care to disabled and elderly people. The federal government stepped in and stopped it. People who work with California’s assisted suicide law say there’s not that kind of discrimination in its end of life law. Nathan Fairman is the psychiatrist and palliative care doctor who oversees cases at UC Davis Health in Sacramento.

NATHAN FAIRMAN: Having a disability would not qualify an individual for aid in dying. Someone who’s disabled and has end-stage cancer could potentially qualify, and they would have to step through all of the safeguards that are set out in the law.

SHAPIRO: Fairman says there are plenty of those safeguards to prevent abuse. Two doctors need to confirm that someone is terminally ill and mentally competent to choose to die. A spokesperson for the California Department of Public Health said it does not comment on litigation.

Joseph Shapiro, NPR News.

Press Release: Not Dead Yet Joins Anti-Discrimination Lawsuit To Oppose Assisted Suicide Law

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Los Angeles, CA — April 26, 2023 – Yesterday, the United Spinal Association (“United Spinal”), Not Dead Yet (“NDY”), Institute for Patients’ Rights (“IPR”), Communities Actively Living Independent & Free “CALIF”, and individual plaintiffs, Lonnie VanHook and Ingrid Tischer, filed a lawsuit in the U.S. District Court for the Central District of California, asking that California’s End of Life Option Act (EOLOA) be declared unlawful and unconstitutional.

“This lawsuit is a long-held dream come true for Not Dead Yet,” said Diane Coleman, president and CEO of NDY, a national disability organization. “We’re honored to join our fellow plaintiffs and attorneys to bring this fundamental disability rights challenge to the discrimination inherent in assisted suicide laws.”

NDY’s assistant director/policy analyst Jules Good says, “At a time where our rights are being stripped away, hateful laws are being enacted against LGBTQ+ members of our community, and disabled people of color are facing continued systemic violence, policies that make it easier for disabled people to die with help from their doctors are especially dangerous. Assisted suicide policies are inherently discriminatory, full stop.” 

NDY’s director of minority outreach, Anita Cameron, says, “As a Black disabled woman, I have experienced both racial and disability discrimination in healthcare. Although few Blacks and people of color request assisted suicide, as it becomes normalized across the country, racial disparities and the devaluing of the lives of disabled people will lead to people being forced, or ‘convinced’ to ask for assisted suicide.”

NDY’s New England regional director, John Kelly, says, “Ever since a spinal injury in 1984 left me ‘paralyzed from the neck down,’ I have been confronted by suggestions of death and suicide. People like my father who wished I had died in my accident, the people who said they’d rather be dead than like me, the presentation of suicide as the noble response to my disability in movies like ‘Whose Life Is It Anyway?’”

As NDY stated in our first friend of the court brief on assisted suicide filed 27 years ago in the U.S. Supreme Court:

Discrimination against people with severe disabilities pervades our society. Assisted suicide is the most lethal form of such discrimination. Applied only to people with significant health impairments, assisted suicide is the ultimate expression of society’s fear and revulsion regarding disability. …[P]eople with disabilities,…are discriminatorily denied the protection of suicide prevention laws, medical practice standards, and statutes prohibiting abuse, neglect and homicide that nondisabled persons receive. This double standard based on health status violates the ADA.

Those words are as true today as they were then. Assisted suicide data continue to show that unmet disability-related needs are at the heart of requests for assisted suicide, with inadequate supports leading to feelings of losing autonomy and being a burden.

“This lawsuit is our fight against a society and insurance industry that tells too many of us to hurry up and die,” Coleman says. “For all of us who’ve been denied the help we need to live, we’re not going to lay down and die. We’re Not Dead Yet and we’re fighting back.”