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

Click here for a PDF image scan of the article and the page it appears on in the Quincy Sun. The full, screen reader accessible text of the article is below.]

by John B. Kelly for The Quincy Sun, August 18, 2022

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.

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

Not Dead Yet also published the article.

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Actions Events News

Webinar: The Deadly Ableism of Assisted Suicide and Its Impacts on Marginalized Communities

Please join a zoom webinar on the dangers of assisted suicide, and the specific problems with Massachusetts Bill S.1384.

Saturday July 16, 2pm-3:30pm.

Register for the Assisted Suicide Webinar

Hear from members of Second Thoughts MA: Disability Rights Advocates against Assisted Suicide, and from the staff of Not Dead Yet, the national disability rights group long opposed to assisted suicide as a form of deadly discrimination against disabled people.

IMAGE DESCRIPTION: Full width cartoon, a pen and ink drawing of a power wheelchair user with shoulder length hair sitting on a sidewalk with their chair facing a ramp marked by an access symbol along the side of a building. The ramp leads to an open side doorway with an overhead sign "Assisted Suicide." Their head is turned left to look at the front of the building, where a long flight of steps juts out into the sidewalk. The door is closed at the top of the steps, and there is an overhead sign  "Suicide Prevention Program."  TEXT: Saturday, July 16, from 2 PM to 3:30 PM on Zoom
You Will Learn:
• The specifics of the current Massachusetts assisted suicide bill, S.1384
• Why assisted suicide is dangerous for disabled and BIPOC communities
• Why buzzwords assisted suicide supporters use, like "choice" and "dignity," are not honest terms
• How safeguards fail to protect patients
• Solutions to patient suffering
• How to take action!
Presented by Second Thoughts MA and Not Dead Yet


You Will Learn:
• The specifics of the current Massachusetts assisted suicide bill, S.1384
• Why assisted suicide is dangerous for disabled and BIPOC communities
• Why buzzwords assisted suicide supporters use, like “choice” and “dignity,” are not honest terms
• How safeguards fail to protect patients
• Solutions to patient suffering
• How to take action!
Presented by Second Thoughts MA and Not Dead Yet

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Actions News

Action Needed! Oppose Bills S 1384 / H 2381

June 6, 2022

Oppose S.1384/H.2381, which would legalize assisted suicide and risk the lives of disabled people. Use this FORM to Protect Disabled Lives to send the message to the MA Joint Committee on Health Care Financing that these bills must not pass! To help us alert more people to this issue and encourage them to take action, please use our Social Media Action Guide (docx)

From John B. Kelly, Director of Second Thoughts, MA

Hello disability rights advocates and allies!

I wish I could write each of you individually, to encourage you to send the linked letter to the Massachusetts legislature’s Joint Committee on Health Care Financing, to urge the committee to REJECT assisted suicide bills S.1384/H.2381 as a threat to the lives of disabled people, including people disabled by their serious illness.

Here is the link which will enable you to send the letter to every committee member. At the bottom of the letter, you can make your own personal message.

And attached is an Action Toolkit (docx) to using social media, complete with preprinted messages, to get the point across the assisted suicide is too dangerous for disabled people! Letter and Action Guide developed by newly hired Assistant Director/Policy Analyst Jules Good (they/them).

Thanks so much!

John

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Hearings Information MA News

Statement against S.1384 by John B. Kelly

Opponents for legalized assisted suicide held a virtual legislative briefing on Tuesday, May 10, which prompted news outlets to seek a statement from Second Thoughts director John Kelly.

Download John Kelly’s statement against S.1384, or scroll down to read.

Over the last 15 years, the Mass legislature and, in 2012, the people of the state, have wisely rejected the legalization of assisted suicide as too dangerous. The legislature should likewise reject S1384, which despite its name does not provide dying people “end-of-life options.”

The tragic reality is that under legalized assisted suicide, some people’s lives will be ended without their true consent, through misdiagnosis, persuasion, coercion and abuse, insurance denials and depression. No safeguards have ever been enacted or proposed that can prevent this outcome, which can never be undone.

NPR reported five years ago that up to 20% of people who enter hospice outlive their six months prognosis. In Oregon, 4% of people who enter the assisted suicide program are alive at the end of six months. The difference between 4% and 20% is the percent of people and their families who may have lost months, years, and in some cases decades of meaningful life.

There is no way to contain eligibility to a narrow set of people. Anorexia nervosa and diabetes now qualify as terminal conditions in other states. Disabled people like me are eligible in Canada, and some predict disabled people will be eligible here.

Proponents always talk about pain and suffering, but the end-of-life concerns in Oregon show that people are upset about depending on other people and are feeling like a burden.

Just as many people disqualify me from full humanity because of my disability, some people disqualify themselves and are disqualified by others when they need help.

The state of Massachusetts 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.

NPR – Nearly 1 in 5 hospice patients discharged while still alive.

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Actions

MA Legislators Shouldn’t Take the “Bait and Switch” on Assisted Suicide

Download this new information from the Patients Rights Action Fund (No Suicide MA.pdf) to use when talking to legislators and constituents.

Assisted suicide proponents in Massachusetts are using bait to convince legislators to pass S.1384/H. 2381 to legalize assisted suicide by claiming there are sufficient “safeguards” to protect patients from coercion and abuse. But, once the bait is taken and the law is passed, proponents switch to stripping away the “safeguards” just a few years later.

  • A challenge filed in federal court in California would eliminate the requirement that the lethal drugs be self-administered which would result in euthanasia. With lethal injection available in the home, vulnerable people would be at even greater risk of being killed with-out their consent.
  • Proponents successfully removed by court settlement the requirement in Oregon that only residents of the state be eligible for lethal drugs by claiming it is unconstitutional. Now, they are essentially asking Massachusetts legislators to support a bill with an unconstitu-tional residency requirement and are urging other legal states to remove their residency requirements.
  • In Colorado, at least two patients in their early 30s with anorexia nervosa received lethal assisted suicide drugs. In Oregon, at least one patient with anorexia nervosa received the drugs. This is a broad expansion into mental illness, even though neither state through their elected officials or by public vote anticipated that the assisted suicide laws they passed would allow such expansion.
  • The Massachusetts bills require a 15-day waiting period as did bills from other legal states. Since enacting assisted suicide laws, Oregon and California have drastically reduced their waiting periods to mere hours and Hawaii is following suit. The “safeguard” of a legitimate waiting period to allow patients to fully comprehend the enormity of the decision to end their lives is now claimed to be a “barrier”.
  • Physicians are often wrong in their prognoses that patients have only six months to live. In New Mexico, Nurse Practitioners and Physician Assistants are allowed to prescribe lethal drugs, even though Medicare prohibits them from qualifying patients for hospice which is also based on a six-month prognosis. Washington and Hawaii are two legal states now pro-posing to allow these less-qualified medical professionals to have prescription authority.
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Information

Shavelson v. California Department of Health Care Services

DREDF Opposes Elimination of Fundamental Protections in California’s End of Life Options Act

“In a pending legal case, Shavelson v. California Department of Health Care Services, a terminally ill plaintiff contends the self-administration requirement of California’s End of Life Options Act (ELOA) violates existing anti-discrimination laws on the basis of disability. While the plaintiff is eligible for physician assisted suicide and has the ability to self-administer lethal medication at present, they’d prefer to utilize the option later in the dying process, when self-administration is no longer possible.

The lawsuit seeks to pressure California into eliminating the state’s most essential safeguard and, in doing do, sanction a dangerous practice not allowed in any of the state’s where assisted suicide is legal. Today, District Judge Vince Chhabria heard arguments in the case, which the State of California has moved to dismiss. DREDF supports the motion and is actively monitoring the case.

Here’s why disability rights advocates strongly oppose granting the waiver requested by the plaintiff.

Assisted suicide doesn’t exist in a vacuum. It must be considered against the backdrop of the United States’ tragic history of state-sanctioned discrimination against people with disabilities and chronic illnesses in health care settings. This sordid history includes nonconsensual experimentation, forced sterilization, the denial of essential medical care based on biased and/or inaccurate quality of their life assessments, issuing of “Do Not Resuscitate” orders without patient consent, and most recently, employing COVID crisis standards of care and health care rationing systems that explicitly, openly devalue disabled lives.

This long, violent history of discrimination is the result of common, largely unspoken biases in society and in the medical profession that assume (without evidence) that the quality of life and inherent worth of people with disabilities is beneath that of their non-disabled peers. Countless studies have consistently revealed the disturbing revelation that health care providers hold negative views of people with disabilities that too frequently translates in failures to equitably protect, serve, or support disabled people.

In 2019, the National Council on Disability – an independent federal agency – released a series of reports exploring how people with disabilities are harmed by these biases in several critical areas of health care delivery including organ transplantation, assisted suicide and determinations of medical futility. The report details a deadly double standard in providing suicide prevention services or support where disability communities are concerned. Under grave circumstances like these, existing safeguards in California’s law must be preserved, especially when other key safeguards in ELOA have already been rolled back.

When it enacted ELOA in 2016, California’s legislature rightfully drew a clear line between assisted suicide and euthanasia in an attempt to preserve the integrity of unqualified consent inherent in the self-administration requirement. Or so they claimed at the time.

Yet in October 2021, California enacted Senate Bill 380, eliminating the very protections the Legislature championed only a few years before, including (1) reducing mandatory 15-day waiting periods between requests for assisted suicide drugs to 48 hours; and (2) eliminating the requirement that an individual affirm their decision before lethal drugs are administered. These requirements were critical guardrails against erroneous or coerced requests for assisted suicide; without them, the risks of abuse and coercion to people with disabilities increase exponentially.

Requiring California to cross that line as the plaintiff in Shavelson seeks to do would compromise the essential nature of the end-of-life program the state created and increases existing threats to the civil rights, and the very lives, of profoundly oppressed and already marginalized communities.

In short, the state’s self-administration requirement reflects a sound legislative judgment that no person’s life should be ended unless they are fully committed to ending it – something that can never be truly clear unless they perform the act themselves. While not ideal, this affirms and secures an essential moral and legislative line between assisted suicide and euthanasia. California’s requirement that individuals must self-administer a lethal prescription remains a necessary barrier to coercion and abuse that must, in good conscience, remain.”

NDY, DREDF and United Spinal Discuss Shavelson Euthanasia Case at Press Briefing

Disability advocacy organizations NDY, DREDF and United Spinal partnered with the Patients Rights Action Fund (PRAF) to hold a press briefing on the Shavelson v. CA Department of Health Care Services case heard on April 14 in the federal District Court of Northern California. Video of the press briefing is available on PRAF’s Facebook page.

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Actions

Action Needed on S 1384!

Friday, March 25, 2022

The assisted suicide bill, S.1384 (An Act relative to end of life options), moved to the Health Care Financing Committee yesterday.   The clock now starts ticking with the committee having 30 days to process the bill.   However, as we know, the deadline can be extended.   If there is no extension and no action by the committee, the bill is dead in 30 days.

Please contact Health Care Financing Committee members to urge them to vote against the bill.   We are working on individual meetings with the Chairs and members. 

Committee members are found here:   https://malegislature.gov/Committees/Detail/J24

Categories
History

Study on Physician Perceptions

Physicians’ Perceptions Of People With Disability And Their Health Care

by Lisa I. Iezzoni, Sowmya R. Rao, Julie Ressalam, Dragana Bolcic-Jankovic, Nicole D. Agaronnik, Karen Donelan, Tara Lagu, and Eric G. Campbell on February 1, 2021

Published in Health Affairs

“In [a] survey of 714 practicing US physicians nationwide, 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.”

Categories
News

Is “Death with Dignity” Really Possible?

November 30, 2021 by Ronald W. Pies, MD for the Psychiatric Times.

Has this slogan crowded out the importance of life with dignity?

…”over the past several decades, death with dignity has become a kind of battle cry. Owing to the lobbying and proselytizing efforts of groups promoting physician-assisted suicide—euphemistically called, “medical aid in dying”—the phrase, death with dignity, has become nearly synonymous with the deliberate ingestion of lethal drugs, prescribed for people with terminal illnesses.2 In the marketplace of ideas, other modes of dignity in dying—and more importantly, in living—have been crowded out.”

Categories
Hearings News

H2381 – Poole Testimony Oct 1, 2021

Download Poole Testimony H2381 2021-10-01.pdf or read below.

My name is Ruthie Poole, and I am the president of M-POWER, a statewide group made up of people with lived experience of mental health diagnosis, trauma, and addiction.

As people with psychiatric disabilities, M-POWER members feel passionately about the right to self-determination. However, that is not what this bill is about.

It is not uncommon for people with disabilities and elders who may not be physically well to feel like they’re a burden on their families. Prescribing doctors in Oregon last year reported that more than half of program suicides felt like a burden on family, friends, or caregivers. Sadly, if physician assisted suicide were to become law in Massachusetts, some people may be coerced, either subtly or more obviously, by their families to agree to this.

The bills have a provision requiring people requesting assisted suicide to have a counseling appointment to determine that the person “is capable and not suffering from a psychiatric or psychological disorder or depression causing impaired judgment.”

Historically, people with psychiatric diagnoses have been subjected to all forms of legal and extra-legal coercion, often abetted by these same professionals. Gatekeeping professionals continue to underestimate our capabilities and block us from living our own lives. Based on these experiences, we cannot trust that counselors will have our best interests in mind when evaluating our motives for requesting assisted suicide.

At the same time, people in the midst of a severe depression can usually present as “unimpaired,” especially in a single meeting with an unknown counselor.

Those of us in M-POWER know that depression is insidious. We know that depression does impair judgment. As a therapist once told me, depression does not cause black and white thinking; it causes black and blacker thinking. Absolute hopelessness and seeing no way out are common feelings for those of us who have experienced severe depression. 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.

We applaud the Joint Committee on Public Health and legislators who have worked to expand funding for suicide prevention efforts. Passing this bill would be a slap in the face of those efforts. Suicide contagion is real. Any assisted suicide program will send the message to people in mental distress – old, young, physically ill or not – that suicide is a reasonable answer to life’s problems.  It isn’t.

We urge you to give this bill an “ought not to pass.”

Thank you.