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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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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.”

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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.

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Hearings News

H2381 – Daly Testimony Oct 1, 2021

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

Eighteen months ago, if you’d asked me if I supported a doctor assisted suicide bill I would have answered, sure, why not, choice is good. And I would have believed that I could control whether I opt in or not. 

Since then, I’ve put two and two together and found that an assisted suicide bill does not add up to a choice I can live with. In fact, if the bill is passed, and the trend continues, the odds of my dying prematurely and without my consent are surprisingly high. 

My disability puts me into a category of people who are systematically marginalized by the healthcare system. I share this realm with many poor, elderly, and people of color. I experience inequities in the form of inaccessible exam tables, mammography equipment and weight scales, and discriminatory practices such as when I broke my femur my doctor told me he wouldn’t bother operating because “I don’t walk anymore”; when I didn’t get weighed at my oncologist’s office even though there was a big sign posted on the office wall that read “All patients must be weighed”; I also wasn’t weighed before receiving nine months of chemotherapy even though dosage is determined partially by a patient’s weight. Is this in line with the Hippocratic oath? Take a look at our Crisis Standards of Care to see what’s on the minds of our healthcare industry today.

What does it say when Mass General Hospital, the number 5 rated hospital in the country, after 20 years is still not fully ADA compliant? What does it say about our American culture when it fails to soothe our fears of being left out, not considered, essentially not worth the trouble? 

People have always been afraid of disability and the “perceived” loss of dignity that comes with it. In fact, loss of dignity polls as the number one reason for wanting assisted suicide legalized. If loss of dignity means having to lean on a family member or a home health care worker for eating, bathing, and toileting, if it means being inconvenienced and ashamed by incontinence or memory loss, well then at least all of humanity is in the same boat and we can look forward to losing our dignity together because the very act of living means we are aging, our bodies are breaking down and at some point we will be in the need of care from others. 

You could say we are all becoming more disabled with each passing day. Maybe we should think about normalizing aging and disability by reevaluating the meaning of the term “loss of dignity.” We could embrace those in need of care by extending access to health and palliative care. We could focus in on easing the inevitability of becoming frail in order to rid people of their guilt of being a burden so they won’t conclude that their best option is to be dead. Many doctors discriminate based on their own fears of being in the need of others and we have proof that they can foist those beliefs onto their patients and patient’s families both overtly and surreptitiously. In other words, the decision to die is not actually ever just the patient’s decision. There is always a doctor involved.

Are we going to allow a false notion of upholding dignity push us to the brink of suicide? Are we serving the greater good by granting doctors, whom we might not even know, the right to decide if a life meets their matrix for saving? I believe that doctors should never be in the business of deciding who they will let die. Never, ever. There are plenty of ways of dying in this world without our doctors’ encouragement. Our doctors should remain cleanly on that side of this argument. 

Thank you,

Pamela Daly  Charlestown, MA

Categories
Hearings News

H2381 – Cameron Testimony Oct 1, 2021

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

I’m Anita Cameron, Director of Minority Outreach for Not Dead Yet, a national disability rights organization opposed to medical discrimination, healthcare rationing, euthanasia and doctor assisted suicide.

H.2381/S.1384 is dangerous because though these laws are supposed to be for people with six months or less to live, doctors are sometimes wrong about a terminal diagnosis. My mother, while living in Washington state, was determined to be at the end stage of chronic obstructive pulmonary disease. I was told her death was imminent, that if I wanted to see her alive, I should get there in two days. She rallied, but was still quite ill, so she was placed in hospice. Her doctor said that her body had begun the process of dying.

Though she survived 6 months of hospice, her doctor convinced her that her body was still in the process of dying, and she moved home to Colorado to die.

My mum didn’t die. She became active in her community and lived almost 12 years!

H.2381/S.1384 will put sick people, seniors and disabled people, especially, at risk due to the view of doctors that disabled people have a lower quality of life, therefore leading them to devalue our lives. Now add race and racial disparities in healthcare to this. Blacks, in particular, receive inferior health care compared to whites in the areas of cardiac care, diabetes, cancer and pain management.

As a Black Latina, I didn’t see assisted suicide as part of my culture. This is borne out in a 2013 Pew study that shows Blacks and Latinos are 65% opposed to doctor assisted suicide and in states where it’s legal, rarely use the program. Doctor assisted suicide proponents tend to be white professional and managerial class folks.

What’s especially dangerous is that in states where it’s legal, if you lose access to healthcare, turning your chronic condition into a terminal one, you can request assisted suicide. It’ll be cheaper to kill you than to care for you.

As long as disability discrimination and racial disparities in healthcare exist, assisted suicide laws like H.2381/S.1384 have no place in Massachusetts. Please vote no on H.2381/S.1384.

Categories
Hearings News

H2381 – Leigh Testimony Oct 1, 2021

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

When I first heard about this type of legislation, I was all for it. It seemed like an option that I would want for myself or loved ones. But as I studied this issue, the more I learned, the more I realized that there were just too many inequities and risks to vulnerable people. I developed second thoughts. I urge all of you to keep an open mind and really look, look hard at the facts of assisted suicide.

I am sure that you want MA policies to work in the best interest of everyone. Before I became disabled, I was a member of the group that advocates for this — the white, well-educated, and well-off. Now that I am a member of the marginalized, I see things very differently. I recognize
the need for the common good. When two-thirds of communities of color are opposed, as well as those of the working class and low-income, and major disability rights organizations, then attention must be paid to this opposition. I am here to say that the interests of a small number
of people who want this option should not outweigh the many people whose lives will be impacted, people like me, people with disabilities. I am part of a community that often doesn’t get considered. We get left out, not included, not even thought of. Except to be used as an example of what it is to live without dignity — to be in a wheelchair, incontinent, dependent on others for care. The presumption that one could not possibly have quality of life. That is a fate worse even than death. And that is false.

These are judgments made by people that result in existential fears about what will happen when they age, become sick, and disabled. This devaluation of life, based on an ageist and ableist view of some perfect checklist of functional abilities, is what lies at the heart of this type of legislation. This is what makes people feel like a burden, that we ought to check out, rather than live out our lives.

I co-led a series on End-of-Life issues at my church and was struck by how many of these good-hearted people, who care about social justice, were filled with worry that they would be a “burden” on their loved ones if they couldn’t completely take care of themselves, as they aged or became sick. Or in other words, became disabled. They didn’t want to “take away” money from their family, or ask for help in taking care of themselves. They didn’t want to be “humiliated” and couldn’t imagine how life would be “worth living”. I hope that my presence, as a wheelchair user who does require care, and has a good quality of life, helped remind them that we are all interdependent at different times and in different ways. And this does not lessen the inherent worth and dignity of our lives.

Instead of assisting people in dying, let’s provide medical assistance in living. Let’s meet the real needs of people who are dying, aging, and are disabled. Let’s offer real choices in treatment and palliative care. Let’s provide home and community based care, not an unsafe, miserable life in a nursing home that people fear (and rightly so, as 40% of the Covid deaths
occured before the vaccine). Let’s correct health inequities and level the playing field in healthcare, not discriminate against people, deny treatment, and then offer assisted suicide. I recall a time when I was severely ill with septic shock and I was questioned whether I would want life support. Why wouldn’t I want to live? Did the wheelchair alongside me in the Emergency Room influence how people viewed me and my quality of life?

And let’s stop pretending that elders and the disabled are not at risk of abuse. Or that there are adequate safeguards. Or that this is always a peaceful death. Let’s stop the euphemisms. This is suicide. This is not dignity.

Dignity means that people are worthy of respect. Everyone that needs care, at the end of life or throughout their life, deserves that care. Not demoralized for needing care. Or a social pressure to die. Imagine how wearing it is to constantly have to justify one’s existence, to prove that your life is worth living. Legalizing assisted suicide sends the wrong message to people with disabilities —that we are better off dead. People with disabilities, like those confronting terminal illnesses, deserve real compassion, not a hastened death.

Codifying this into law is sanctioning assisted suicide, and a way of promoting it. This is a socially dangerous policy, no matter how well-intentioned. Safeguards are simply not practical. How will they be implemented? Paid for? There will be no realistic way that this will be monitored, just as this does not happen in other states.

The Covid-19 pandemic has caused tremendous loss and tragedy. The majority of those killed were people with disabilities, not just by the virus but by biased responses to people with disabilities, such as forced DNR’s and denial of treatment. The initial Crisis Standards of Care for our state would have placed people with disabilities at the back of the line for treatment. Ableism can and has led to death for people with disabilities. And this bill will threaten their lives, no matter how well intentioned.

Please, this committee must not now focus on making death more accessible. This is not the time to move this socially dangerous policy forward. Massachusetts will be less safe for individuals with disabilities if assisted suicide is legalized, and that is not the compassionate and inclusive state we aspire to be. I urge this committee to vote no on assisted suicide.

Thank you,
Ellen Leigh
Arlington, MA
Second Thoughts Massachusetts

Categories
Hearings News

H2381 – Kelly Testimony Oct 1, 2021

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

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.

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

Quotes from Lonny Shavelson and Ira Byock – Liz Szabo, “Death with dignity laws and the desire to control how one’s life ends,” Washington Post, October 24, 2016.

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MA News News

Globe – Push for assisted suicide raises questions over disability rights

Please read John Kelly’s printed letter to the Boston Globe in response to other letters. You can:

John Kelly letter to the Boston globe

Push for assisted suicide raises questions over disability rights

September 7, 2021

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

The writer is director of the disability rights group Second Thoughts MA, which opposes the legalization of assisted suicide.