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.”

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.

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

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.

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

Why Not AS

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.

Why Not AS

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. 

Why Not AS

Disability 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.”

Why Not AS

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.

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.