Media Release: Danger of Massachusetts Assisted Suicide Bill

This media release was published by Not Dead Yet on June 2, 2020.

For Immediate Release: June 2, 2020
Contact: John B. Kelly 617-952-3302, SecondThoughtsKelly@Gmail.com, @2ndThoughtsMA

Bill Legalizing Assisted Suicide Remains Dangerous, Targets the Vulnerable

Second Thoughts Massachusetts issues the following statement in opposition to the favorable report given by the state legislature’s Joint Committee on Public Health to Bill S.1208/H.1926, legislation that would legalize assisted suicide in Massachusetts.

John Kelly

“I’m amazed and disappointed that as a deadly virus is stalking and killing older, ill, and disabled people, and systemic racism and healthcare disparities lead to disproportionate deaths of Black people, the Public Health Committee decides now would be the time to further endanger the same groups of people. Assisted suicide legislation sends a message of ‘better dead than disabled’ while completely immunizing doctors, heirs, and stressed caregivers who can encourage or even engineer a person’s death without fear of prosecution,” said Second Thoughts Director John B. Kelly.

“It is wrong to move a bill at a time when those who will be harmed are on lockdown due to COVID-19, depriving us of the opportunity to fully address in person this threat to our health and well-being,” Kelly continued.

Anita Cameron, Director of Minority Outreach for Not Dead Yet, said “I am utterly disgusted that as COVID-19 ravages the Black community due to the results of racial disparities in healthcare, the Public Health Committee has decided to try to slip this bill through. COVID-19 has disproportionately affected the Black community; we are dying at frightening rates. This bill promotes death over life, and by pushing it, the legislature is sending a clear message to us Blacks that we are burdens and should die by suicide.”

Diane Coleman, Not Dead Yet’s President and CEO, said “The doctors who decide who’s eligible for assisted suicide are the same doctors who have been perfectly comfortable putting older, ill and disabled people at the back of the line for receiving COVID-19 treatments. Why should anyone think they will move us to the front of the line for other life-saving treatments if assisted suicide is legal?”

Five months ago, Suffolk Superior court Judge Mary K. Ames in Kligler, et al. v. Healey, et al. ruled against any state constitutional right for assisted suicide, holding that at the point of a patient ingesting the lethal drugs, they would be vulnerable to improper persuasion. “In such a situation, there is a greater risk that temporary anger, depression, a misunderstanding of one’s prognosis, ignorance of alternatives, financial considerations, strain on family members or significant others, or improper persuasion may impact the decision.”

“The Massachusetts legislature should heed this warning by the court. If assisted suicide is legal, some people’s lives will be ended without their consent, through insurance denials, mistakes, and abuse. No safeguards have ever been enacted, or even proposed, that can prevent this outcome which can never be undone once it is put into effect,” Kelly concluded. Second Thoughts Massachusetts is a group of disability rights advocates opposed to the legalization of assisted suicide. We testified against the bill S.1208 at the hearing in June of 2019 and held a well-attended legislative briefing a few days after. It is the state affiliate of Not Dead Yet, the national grassroots group opposed to assisted suicide and life and death discrimination against disabled people.

Starvation led to approval for euthanasia in Canada.

This article was published by Toujours Vivant - Not Dead Yet on May 29, 2020.

By Amy Hasbrouck

In June of 2016, just as medical aid in dying (MAiD) was adopted in Canada, a British Columbia woman known as Ms. S. who had Multiple Sclerosis was evaluated for MAiD by Dr. Ellen Wiebe. According to Jocelyn Downie, Dr. Wiebe concluded that Ms. S. met most of the eligibility criteria (incurable condition, advanced state of decline in capability, and enduring and intolerable suffering) but the doctor did not believe Ms. S. would die “in the foreseeable future,” so she was determined ineligible. 

As we reported in March of 2018, the Final Disposition Report of the Inquiry Committee of the College of Physicians and Surgeons of British Columbia, found that Ms. S. was “suffering from … trigeminal neuralgia and gastrin [sic] intestinal symptoms for which treatment had been only minimal [sic] effective.” Elsewhere in the report, another physician said Ms. S. had declined “potentially effective” treatment.

Dr. Wiebe exchanged correspondence with Ms. S. in December of 2016 and January of 2017, to the effect “that the patient’s life expectancy was not short enough to qualify for medical aid in dying.” Then in mid-February of 2017, “Ms. S decided to starve herself to death at home, with the support of palliative-care nursing.”

Her husband called Dr. Wiebe two weeks later, and Dr. Wiebe visited Ms. S. on March 3. At that time, Dr. Wiebe determined that she met all eligibility criteria, and she was euthanized on March 6, 2017.

The Inquiry Committee, in its final disposition report of February 13, 2018, found that:

• “MAiD is intended to be restricted to those individuals who are declining toward death, allowing them to choose a peaceful death, as opposed to a prolonged, painful or difficult one.”
• “In view of the foregoing standard, a patient cannot be forced to take treatment they do not consider acceptable.” 
• “Ms. S. met the requisite criteria and was indeed eligible for medical assistance in dying despite the fact that her refusal of medical treatment, food, and water undoubtedly hastened her death and contributed to its ‘reasonable foreseeability’.” 

Ms. S.’ suicidal act highlights a basic flaw of assisted dying: governments have put their efforts toward the goal of ending lives, rather than ending suffering. 

From the information provided, we don’t know what symptoms Ms. S. had, how her family and friends reacted to her disability, whether she had peer support, whether she’d received specialist care for her multiple sclerosis, what treatment(s) had been tried, and whether she had received effective palliative care and mental health services. But when the government, in the person of a euthanasia provider, puts its thumb on the scale in favour of death, it makes the struggle to live well with a disability just that much harder.

At the same time, the public policy conclusion drawn by this case is that the person asking to die should not be burdened with the obligation of first trying to improve their quality of life. This might make sense if there were no social costs from assisted suicide and euthanasia (AS & E). But there are very significant social costs, not just to those who choose to die, their families and medical practitioners, but to all people whose lives are devalued and put in danger by the practice.

For more information on the subjects we discuss:

Facebook.com/toujoursvivantnotdeadyet
Website – https://tvndy.ca
Email – info@tv-ndy.ca Twitter – @tvndy.

No free choice: Remember four suicides.

This article was published by Toujours Vivant - Not Dead Yet on May 22, 2020.

By Amy Hasbrouck

In the year before euthanasia came into effect in Québec, between April, 2014 and March of 2015, four Québecers with disabilities ended their lives because they didn’t have the supports they needed to remain independent. Despite efforts by advocates, conditions in the province have worsened since then.

• In April of 2014, Mario Beaudoin and his wife were found dead in their home following what was believed to be a suicide pact. Mr. Beaudoin had been injured in a car accident 16 months earlier, and had been unable to get home modifications, medical equipment and personal assistance services they needed. 
• In September, three months after Québec’s National Assembly adopted the province’s euthanasia law, Yvan Tremblay killed himself because he was being forced to move out of his apartment due to new security regulations imposed by the government. Management claimed that it would be impossible to evacuate Mr. Tremblay in case of fire, so he would have to move to a smaller apartment without a kitchen. 
• Two days later, on September 16, Pierre Mayence died of starvation at the nursing home where he lived, after a court ruled that the staff could not force-feed him. 
• Finally, in March of 2015, Gabriel Bouchard died, also of starvation, because he could not get the supports he needed to remain in his own apartment. (You can watch our Interview with him on our website.)
  

What has changed since 2015?

In Québec, from December of 2015 to April of 2019, 2,909 people were euthanized, and 2,947 people received continuous palliative sedation, for a total death toll of 5,856.

Neither Québec nor the Federal government has released reports from the monitoring system for medical aid in dying (MAiD). However in introducing bill C-7, the Department of Justice mentioned that more than 13,000 euthanasia had been performed since June of 2016.

As of May 20, 3,718 people had died of COVID-19 in Québec, most of whom were residents of long-term care institutions. Deaths by COVID-19 in Canada totalled 6,030.

What hasn’t changed in the last five years?

• Public policy still favours warehousing disabled people in institutions, rather than giving them the choice to control their lives by employing their own personal support workers. 
• The public, including progressives, continue to believe in the myth that assisted suicide and euthanasia (AS & E) is a free choice. 
• Disability groups remain timid about opposing AS & E.

While we’ve focused on events in Québec, the same problems apply in the rest of Canada. People talk about the health care workers who are the “front-line heroes” of the COVID-19 pandemic, and that’s absolutely true; many are going above and beyond the call of duty. But most of these workers get to leave the heartache behind when they go home at the end of the day. Disabled activists don’t stop being disabled when their shift is over, just as single parents, women, people of colour and poor people can’t leave behind the discrimination that affects their lives.  

For more information on the subjects we discuss:

• Facebook.com/toujoursvivantnotdeadyet
• Website – https://tvndy.ca 
• Email – info@tv-ndy.ca Twitter – @tvndy.

Jacques Campeau did not get the care that he needed.

This article was published by Toujours Vivant - Not Dead Yet on May 15, 2020, with an article on pandemic policies. (Link)

No Free Choice: Jacques Campeau

By Amy Hasbrouck

In July of 2019 several Québec media outlets reported on the suicide death of Jacques Campeau, who had Multiple Sclerosis. The stories focused on his family’s anger over the fact that he was denied euthanasia several times because he was not at the “end of life;” the family brought his death to the attention of the media in order to put pressure on politicians and the courts to loosen this eligibility criteria. But details from the articles show that Mr. Campeau really needed help to live, not to die.

According to his daughters, Mr. Campeau was “increasingly despondent and withdrawn” and his wife said he had talked about suicide for a year. “I would come home every evening afraid he had done it.” Depression is a well-known problem associated with MS, both as a reaction to flare-ups, and as part of the disease itself. It can be made worse by pain and fatigue that often come with MS. If Mr. Campeau was not being treated for depression, he was not getting the care he needed.

The articles not only showed that Mr. Campeau had low self-esteem, but also reinforced those beliefs about people living with MS and other chronic diseases. According to the Journal de Montréal, he told his family that he was nothing more than a digestive tract. The reporter described his «suffering» by saying he used a wheelchair and incontinence products, and “hadn’t seen the light of day since November.” His daughter said he had “no quality of life,” and that he was a “prisoner of his body.” Rather than asking if Mr. Campeau had received peer support or “dignity therapy” to deal with his existential distress, the journalists repeated negative stereotypes of life with a disability as a fate worse than death.

Media reports suggested Mr. Campeau was losing autonomy, but there was no mention of in-home assistance. His daughter told of receiving a call at work “telling her [Mr. Campeau] had fallen at home and had been lying on the floor for two hours, waiting to call when he knew she was on break.”

Mr. Campeau’s family expressed disappointment over not getting a chance to say good-bye. “We would have preferred to have a last moment with him ... to have a dinner with him, tell him that we love him. We would have liked to talk to him before he did this." They believe a planned death would have met their need for closure.

The only other sources cited by the journalists were spokespeople for “Dying with Dignity” and a pro-euthanasia doctor. The reporters included a link to the family’s petition to change the “end-of-life” eligibility criterion. The articles did not quote people living with MS or experts in palliative care or suicide prevention. The Journal de Montréal included information on how to obtain MAiD and the suicide prevention telephone number.

The tragedy here is not that Mr. Campeau didn’t die by euthanasia, or even that he committed suicide. The tragedy is that those who surrounded him seemed to think that MS, a chronic illness that includes flare-up and remission, was a terminal illness, and that his life was not worth living because of his disability. The tragedy lies in the fact that he did not have the services and supports he needed to adapt to his changing condition, feel good about himself, maintain his independence, and get peer counseling and suicide prevention services that could have improved the quality of his life, and ultimately saved it.

Amy Hasbrouck is the President of the Euthanasia Prevention Coalition and the founder of Toujours Vivant - Not Dead Yet (TVNDY) a non-religious organization by and for disabled people.

As the Threat of Triage Grows, Disability Rights Advocacy Is Needed More Than Ever

This article was published by Not Dead Yet on April 6, 2020

Diane Coleman, Not Dead Yet.

On Friday, April 3rd, six leading disability rights attorneys and their respective organizations issued a statement entitled Applying HHS’s Guidance for States and Health Care Providers on Avoiding Disability-Based Discrimination in Treatment Rationing. The statement, which helps to interpret the federal bulletin issued a week earlier, was joined by over 90 organizations, including NDY.

One of the most critical parts of the statement focuses on the following language in the federal bulletin:

“[P]ersons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities. Decisions by covered entities concerning whether an individual is a candidate for treatment should be based on an individualized assessment of the patient based on the best available objective medical evidence.”

The disability advocates’ statement explained this, in part, as follows:

• All persons should be eligible for, and qualified to receive, lifesaving care regardless of the presence of an underlying disability or co-morbid conditions, unless it is clear that the person will not survive in the immediate term or the treatment is contra-indicated.
• Treatment allocation decisions may not be made based on misguided assumptions that people with disabilities experience a lower quality of life . . . .
• Every patient must be treated as an individual, not a diagnosis. This means that the mere fact that a patient may have a diagnosis of, for example, intellectual disability, autism, cystic fibrosis, diabetes, spina bifida, spinal muscular atrophy, or schizophrenia cannot be a basis (in part or whole) for denying care or making that person a lower priority to receive treatment.
• Generalized assumptions must be avoided and doctors must instead focus on the most current and best available objective medical evidence available to determine an individual patient’s ability to respond to treatment. . . .
• . . . [V]alue judgments about the fact that a patient may require extensive support in activities of daily living, uses augmentative or alternative communication, uses a wheelchair, or experiences a psychiatric disability are irrelevant to decisions about whether such individuals should receive life-sustaining treatment.
• Protocols which equate survival with “health” or the absence of chronically debilitating symptoms, risk importing quality life criteria on the triage process.

Clearly, a carefully conducted individual assessment will protect many people with disabilities from being assigned a lower priority to receive treatment. Of course, as disability advocates know from decades of experience, individualized assessment, planning and services are easy words to say but much harder to get in practice. Our community must continue to press for this. It will save lives.

An equal or greater concern is that people whose “individual assessment” suggests they may have a lower likelihood of survival from COVID-19, or (under some triage approaches) a shorter predicted life expectancy for other reasons, would be given lower priority for treatment that could benefit them in terms of potential for survival.

One such “model” policy that is receiving a lot of attention is from the University of Pittsburgh. It calls for prioritizing individuals based on a combination of two primary factors. First, the “Sequential Organ Failure Assessment (SOFA) score (or an alternate, validated, objective measure of probability of survival to hospital discharge) is used to determine patients’ prognoses for hospital survival.” The second factor is “the presence of conditions in such an advanced state that life expectancy is very limited” {less than 1 year or less than 5 years), which is used to characterize patients’ longer-term prognosis. This does not inspire confidence in the policy’s objectivity. It provides for the kind of blatant discrimination that worries many of us (see, e.g., Alice Wong’s moving article in Vox.com).

As the potential for implementing triage policies increases, advocacy will be needed more than ever. For more information, one excellent resource is the DREDF COVID-19 page.

Covid-19 reveals a deadly failure of priorities.

This article was published by the disability rights group, Not Dead Yet on March 17, 2020

Diane Coleman

By Diane Coleman
President and CEO of Not Dead Yet

With the looming and imminent threat of insufficient hospital and ICU beds, medical equipment and healthcare staff, I found myself recalling an old favorite TV show from my college years. MASH (mobile army surgical hospital) created both comedy and drama around the reality of having three operating room beds in an army tent on the war front in South Korea. Triage was part of the routine, determining who gets on the operating table first, and who gets the best surgeon (Hawkeye) of the four in the unit. Now and then, when the frontlines had faced a heavy attack and massive casualties poured in, the plot explicitly focused on triage situations. Hawkeye always struggled to do the right thing.

COVID-19 is leading to more and more news reports on the fast approaching reality that the demand for hospital beds and ventilators will exceed supply. New York’s Governor Cuomo was carried on MSNBC yesterday and today, discussing this crisis.

A few years ago, NDY’s research analyst, Stephen Drake (aka my husband, now retired), reviewed New York’s Ventilator Allocation Guidelines, released in 2015. The pandemic guidelines operate on the principles of triage.

The primary goal of the Guidelines is to save the most lives in an influenza pandemic where there are a limited number of available ventilators. To accomplish this goal, patients for whom ventilator therapy would most likely be lifesaving are prioritized. The Guidelines define survival by examining a patient’s short-term likelihood of surviving the acute medical episode and not by focusing on whether the patient may survive a given illness or disease in the longterm (e.g., years after the pandemic). Patients with the highest probability of mortality without medical intervention, along with patients with the smallest probability of mortality with medical intervention, have the lowest level of access to ventilator therapy. Thus, patients who are most likely to survive without the ventilator, together with patients who will most likely survive with ventilator therapy, increase the overall number of survivors.

Within the hospital environment, ventilators would be allocated and, if necessary, re-allocated as the pandemic proceeds. Importantly, the guidelines state:

In its consideration to protect vulnerable populations, i.e., ventilator-dependent chronic care patients, the Task Force determined that these individuals are subject to the clinical ventilator allocation protocol only if they arrive at an acute care facility for treatment.

It would be helpful if disability advocates determine whether similar guidelines exist in their state and, specifically, what they say, in order to inform their communities and ensure that individuals who use breathing support can make the best decisions for themselves if they get sick. (In my opinion, I should not go to an acute care facility if I get sick.)

It’s hard to disagree with the principle of maximizing the number of pandemic survivors but, nonetheless, a few things need to be said.

First, COVID-19 is not the only cause of the shortages we face. I’m on a New York Medicaid advocacy listserv in which one member quoted Judy Wessler, former head of the NY Commission on the Public’s Health System:

Let’s Remember That Since At Least 2006 There Has Been A Tremendous Push In New York State To Close Hospital Beds And Consolidate Hospitals. We Used To Have 4 Beds Per 1,000 And Now We Have Something Like 2.8 Beds Per 1,000. So Now We Have To Play Catch-Up.

Wessler was also quoted in a NY Post article entitled New York has thrown away 20,000 hospital beds, complicating coronavirus fight.

How many states have taken similar steps as they offload their healthcare responsibilities, letting managed care take over and allowing that industry to suck up around 20% of our healthcare dollars and put profits over people? So our shortage of beds and ventilators is not just caused by COVID-19 but also by unacceptable political and fiscal decisions made largely under the public radar.

Second, how will the idealized triage principles be implemented in practice? The NY guidelines call for a triage committee. It will not be the attending doctor. I don’t think we can count on the committee being composed only of doctors like the caring Hawkeye Pierce. And there will be a time crunch. The situation invites biases like ableism and racism to creep in.

Third, we already know that healthcare resources are denied based on disability bias under futility policies, denial of transplants and other practices reported in the National Council on Disability’s bioethics series. In this crisis, further devaluation of our lives is a real threat.

Not Dead Yet was among many organizations that signed onto a National Disability Rights Call To Action on March 3rd. We are all are trying to impress upon policymakers that our lives are valuable. We are not worth-less and we are not expendable!

This pandemic resource shortage will touch people who previously felt safe from healthcare rationing. How we treat people in need is a reflection of the priorities of the policymakers we elect. All too often, the voices of people with disabilities and other justice communities have been drowned out. Perhaps the unnecessary loss of life from this pandemic due to healthcare capacity limits will cause others to join with us in re-evaluating the priorities that got us here.

Assisted Suicide laws are lethal discrimination against old, ill and disabled people

This article was published on February 24 in connection with a poll on assisted suicide. The rift published a YES and NO assisted suicide article (Link) and then asks you to vote.

Diane Coleman wrote the No to assisted suicide article that I have re-published below.

By Diane Coleman

President of Not Dead Yet

Assisted suicide may understandably be viewed as an easy way to die, but a closer look reveals inherent dangers that should lead to second thoughts.

First, assisted suicide is not needed to ensure that we can die peacefully in our sleep, since we can already do so by receiving palliative care, up to and including full sedation.

So what do assisted suicide laws actually do? They grant civil and criminal immunity to healthcare providers and caregivers who may be involved.

The image of government approved, medically administered assisted suicide is that it only hastens the death of someone who is already dying and voluntarily takes lethal drugs, with “safeguards” preventing abuse. 

Under U.S. laws, an heir or abusive caregiver may suggest assisted suicide, witness the written request, and even give the drug without consent.

In contrast, in U.S. jurisdictions where assisted suicide is legal, Oregon being the national “model”, no authority verifies patients were eligible or procedures were followed. A short form filed by the prescribing doctor is accepted at face value. It’s the “honor” system.

The U.S. laws require a 6-month prognosis, yet Oregon data shows that people far outlived their prognosis. Hospice data shows that 12-15% outlive their predicted expiration date. Oregon also defines someone as “terminal” who simply cannot afford treatment.

Some countries have expanded assisted suicide eligibility to include people with ordinary non-terminal disabilities and even psychological suffering with no physical illness.

So the image that all eligible people are dying soon anyway is not valid. But isn’t it still voluntary?

Unfortunately, under U.S. laws, an heir or abusive caregiver may suggest assisted suicide, witness the written request, and even give the drug without consent. No independent witness is required when the drugs are used, so who would know? Assisted suicide can also hide medical mistakes or malpractice.

Assisted suicide is being marketed as a new “civil right”

Finally, perhaps the greatest concern should be healthcare cost cutting pressures. As cofounder of the Hemlock Society Derek Humphry wrote, “…economics, not the quest for broadened individual liberties or increased autonomy, will drive assisted suicide to the plateau of acceptable practice.”

Assisted suicide is being marketed as a new “civil right,” but will we fall for it? Will we offer suicide prevention to most suicidal people, but carve out those who are old, ill and disabled? How long before a so-called option turns into an expectation, then a duty?

The real civil rights are nondiscrimination and equal protection of the laws. This is why every major national U.S. disability organization that has taken a position on assisted suicide laws opposes them.

Assisted suicide laws are the most egregious form of discrimination against disabled and "terminally ill" people.

Published in the New Hampshire Union Leader on February 14, 2020

By Mike Reynolds, Not Dead Yet

For over two decades the independent people of New Hampshire have been solidly against assisted suicide. Since 1996, the New Hampshire legislature has studied or voted down this proposed law so many times it takes two hands to count them all.

Assisted suicide laws are the most egregious form of discrimination against severely disabled and “terminally ill” people. How can we call suicide a public health crisis for most people while facilitating the suicides of older, ill and disabled people? Should we not be doing everything we can to support such persons in having the best possible health care and home care so they have quality of life for however long they have?

With the experience of the laws in Oregon as a guide, the question of assisted suicide becomes, quite frankly, incompatible with New Hampshire values. [The] state motto, “Live Free or Die,” means we reject government interference in our daily lives. Oregon state government’s promotion of an assisted suicide program administered by the health care system means pushing people towards assisted suicide through denials of coverage for treatment and in-home care, covering up abuses, and ignoring incorrect prognoses that lead people to think they are dying when they are not.

The numerous flaws in HB 1659, the “Death with Dignity Act,” are so obvious that New Hampshire should reject this absurd legislation again. With HB 1659, the government would be promoting suicide for what in the preamble it calls “mental anguish over the prospect of losing control and independence, and/or embarrassing indignities.” This is a direct attack on the thousands of disabled Granite Staters who maintain their independence and dignity by directing aides to perform their care.

While assisted suicide proponents depict assisted suicide as only a last resort for people with advanced cancer, Oregon’s doctors have written lethal prescriptions for individuals whose qualifying medical diagnosis for assisted suicide was reported as chronic conditions like diabetes, gastrointestinal disease, arthritis, arteritis, sclerosis, stenosis, kidney failure, and musculoskeletal systems disorders.

As in Oregon, under bill HB1659 a person can be considered “terminal” and therefore eligible for assisted suicide simply by refusing medication they need. By that definition, people who have epilepsy, ongoing infections and other illnesses that can be managed with medication can qualify. This legislation is not limited in scope and is actually far more dangerous than the proponents want to admit.

A report released in May 2018 by the Centers for Disease Control and Prevention reveals that from 1999-2010, suicide among those aged 35-64 increased 49% in Oregon as compared to a 28% increase nationally. In Oregon, the rate of suicide is 21 percent above the national average and their rates of teen suicide have even been higher. There is a clear problem of suicide contagion.

While the bill proponents claim there are safeguards, there is absolutely no oversight once the medication is picked up from the pharmacy. Under the Oregon law and the proposed legislation, a “friend” can encourage an elder to make the assisted suicide request (“just in case”), sign the forms as a witness, pick up the prescription, and even administer the drug (since no independent witness is required). To be perfectly clear, the current bill being debated only discusses “self-administration” of the lethal drugs in the bill’s preamble; nowhere in the substantive provisions is the word mentioned.

This law is also vague about who can access it, but it would be far easier for an eighteen year old with a serious medical condition that could be controlled with medication to access this law than it would for the same eighteen-year-old to access cigarettes or alcohol.

There is nothing compassionate or caring in this bill. Instead it could serve as a template to encourage and even pressure the most vulnerable in our society, our older and critically ill populations, to hasten their deaths. And by giving legal immunity to everyone involved, it creates a legal framework where elder abuse (up to and including homicide), which nationally impacts about 10% of elders, gets a free pass. Please contact your legislators and have them oppose this very dangerous legislation.

Mike Reynolds is a member of Not Dead Yet, a disability rights group opposed to assisted suicide.

No Free Choice To Die for Archie Rolland

Toujours Vivant - Not Dead Yet (TVNDY) is a non-religious organization by and for disabled people. (Link).

By Amy Hasbrouck and Taylor Hyatt
Toujours Vivant - Not Dead Yet.

Since last summer, TVNDY has been gathering stories of people who have been caught in the gears of the medical aid in dying (MAiD) machinery. Most were people who asked to die, but really needed help to live. Many were euthanized, or had life-sustaining care withdrawn or withheld, or simply pled their case via the media in the court of public opinion.

Over the next few months, we’re going to tell these stories of how and why the system has failed people who needed help to live, not to die, in preparation for the five-year review of the MAiD law that is supposed to begin this summer.

Archie Rolland was a landscape architect who lived with Amyotrophic Lateral Sclerosis for 15 years. From 2007 to 2015 he was treated at the McGill University Health Centre’s Chest Institute. In 2013 he wrote an opinion piece in the Montréal Gazette about his experience of “incarceration” in long-term care, and his fears about upcoming changes in his living situation.

In January of 2015 Mr. Rolland was among 17 people, most of whom used respirators, who were transferred to Lachine Hospital’s Camille-Lefebvre long-term care wing, in advance of Montreal Chest’s move to the newly-built “super hospital.” According to a report in the Montreal Gazette, “only 70 per cent of the nursing staff made the transfer, and fewer than half the hospital attendants.” As well, attendants were put on a rotating schedule, which disrupted continuity of care.

According to the Gazette, problems arose as soon as residents moved to the Lachine facility, and Mr. Rolland documented them in emails to the head nurse, the ombudsman, hospital officials and a patient’s committee representative. He reported long delays after pressing the call button, not being provided water, poor positioning causing bed sores, and more dangerous problems. In one incident, staff failed to remove mucus from his throat, then ignored the respirator alarm until his mother ran to get help. On another occasion, attendants leaned on his bed rail, jamming the call button against his head and “laughed at me in my distress.”

Other families also contacted the media about problems caused by staff shortages and rotating schedules, and multiple reports appeared in the Gazette detailing the problems at the Lachine facility. In the summer of 2016, three doctors resigned because their “pleas for additional support led nowhere.”

By July of 2016, Mr. Rolland had had enough. In emails to the Gazette reporter he emphasized that it wasn’t his illness that was killing him; he was tired and discouraged from having to fight for necessary and compassionate care. On July 4 he left the Lachine facility and made the 10-hour trip to the family’s country home in Métis-sur-Mer. Three days later he ordered that his respirator be turned off.

Though transfer to another facility was mentioned as a potential solution, in none of the reports was the possibility raised that Mr. Rolland could have lived at home with attendant services. The residents of the long-term care facility (referred to as “patients” rather than “people”) and were described as “hooked up to” respirators and feeding tubes, rather than “using” such equipment. 

Where is the choice in that?

The Extreme Ableism of Assisted Suicide

The following article was published by Not Dead Yet on January 28, 2020

By Diane Coleman, President & CEO Not Dead Yet

Diane Coleman

I just came across a brilliant letter that John Kelly sent to the Washington, D.C. Council when they were considering an assisted suicide bill in 2016. I should have posted it here then, but I am doing so now because it’s one of the best discussions I’ve read of the core problem that assisted suicide advocates have with disability.

Let me just highlight one example from the letter, a Washington Post quote from Dan Diaz, who is still working for Compassion and Choices, traveling around the country doing press conferences and testifying on their behalf in favor of these dangerous bills.

“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. 

Although assisted suicide proponents often accuse opponents of fearing death, the letter below demonstrates how profoundly proponents fear and loath disability. Their ableism is so extreme that they want to carve a vaguely defined segment of old, ill and disabled people out of suicide prevention, enlist our healthcare system in streamlining our path to death, and immunizing everyone involved from any legal consequences, thereby denying us the equal protection of the law.

November 1, 2016

Chairman Mendelson, Councilmembers:

John Kelly

My name is John Kelly. I am the New England Regional Director for Not Dead Yet, the national disability rights group that has long opposed euthanasia and assisted suicide. I am also the director of Not Dead Yet’s Massachusetts state affiliate, Second Thoughts MA: Disability Rights Advocates against Assisted Suicide.

I refer you to two recent articles in the Washington Post. Read together, they must lead you to vote against assisted suicide bill B21-38. Assisted suicide isn’t about physical pain at all, despite what proponents have told you. And assisted suicide benefits one specific group in the district and country, wealthier white people, while disadvantaging poorer people, and people of color specifically.

The first article came out last Monday, October 24. Titled “‘Death with dignity’ laws and the desire to control how one’s life ends,” this article exposes the main argument for assisted suicide, “that terminally ill patients have the right to die without suffering intractable pain in their final days or weeks,” as a big lie.

Author Liz Szabo reports that assisted suicide proponent group Compassion & Choices “focuses heavily on the need to relieve dying patients of pain.” One ad has the assisted suicide bill giving “a dying person the option to avoid the worst pain and suffering at the end of life.”

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.

As one California doctor said, “It’s almost never about pain. It’s about dignity and control.”

And that’s what the Oregon and Washington data show. Pain is the least of people’s concerns. Doctors report people requesting the lethal drugs because of psychosocial suffering about becoming disabled through their illness. It’s mental distress about becoming dependent on other people (“losing autonomy” 92%), losing abilities (“less able to engage in activities making life enjoyable” 90%), shame and perceived/actual loss of social status (“loss of dignity” 79%), needing help with incontinence (“losing control of bodily functions” 48%), and believing that suicide would leave loved ones better off (“burden on family, friends/caregivers” 41%).

Dr. Ira Byock, a leading palliative care expert, told the Post, “it’s a bait and switch. We’re actually helping people hasten their deaths because of existential suffering. That’s chilling to me.” As Byock said, almost all pain is controllable. Hospice staff are on call 24 hours a day, and caregivers can be trained in administering emergency pain medication until staff arrive.

The real reasons that people want to commit assisted suicide, proponents admit, are about being dependent on other people for personal care. We disability rights activists have been pointing this out all along.

Barbara Coombs Lee, who as an insurance company executive wrote Oregon’s assisted suicide law, brought up the case of the woman who committed assisted suicide because she was incontinent. The woman wrote that “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.”

Lee described scenarios of disability that she said were “worse than death.” Proponent Dan Diaz emphasized the supposed horrors of disability.

“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?’

This isn’t a public health bill, it’s a death before disability bill.

So this is what some of you are planning to vote for. You are not protecting DC residents from agonizing pain. You are promoting the particular views of one specific group of people, described by Obamacare architect Ezekiel Emanuel as predominantly “white, well-insured, and college-educated.” People who are used to being in control of every aspect of their lives.

So, like so much in the US, assisted suicide is an issue that cuts across class and race. The 2012 election map in Massachusetts shows that wealthier, whiter areas voted heavily for legalization, while working-class whites and people of color voted strongly against. People turning out for Barack Obama and current Sen. Elizabeth Warren defeated the proposal.

The second article, from October 17, by reporter of color Fenit Nirappil, was titled “Right-to-die law faces skepticism in nation’s capital: ‘it’s really aimed at old black people.’” It details the opposition to assisted suicide of Washington’s black majority.

Many in the black community distrust the health-care system and fear that racism in life will translate into discrimination in death, said Patricia King, a Georgetown Law School professor who has written about the racial dynamics of assisted death.

“Historically, African Americans have not had a lot of control over their bodies, and I don’t think offering them assisted suicide is going to make them feel more autonomous,” King said.

District residents told Nirappil of concerns that “low-income black senior citizens may be steered to an early death”, and that in the end, assisted suicide is really all about reducing government healthcare costs.

Derek Humphry, who founded the Hemlock Society (Compassion & Choices’ original name), wrote years ago of the “unspoken argument,” that assisted suicide will gain traction because of “the realities of the increasing cost of health care in an aging society, because in the final analysis, economics, not the quest for broadened individual liberties or increased autonomy, will drive assisted suicide to the plateau of acceptable practice.”

Assisted suicide, like suicide in general, is primarily practiced and promoted by white people. Nirappil reported that national leaders in the assisted suicide movement are all white, and that most of the participants at a recent rally were white. In the 18 year history of the Oregon assisted suicide law, only one black person has used the program. In a state that is now 22% nonwhite, 97% of assisted suicide deaths have been white.

Non-Hispanic whites also commit regular suicide at a rate 2.5 times that of blacks. Rather than importing a predominantly-white practice as a solution for the district, you must say no to this bill and the big lie it hides behind. Assisted suicide is not about protecting suffering people from physical pain, it’s about satisfying the control needs of a group of people, predominantly white, who would rather die than become dependent on another human being.

Please respect your constituents, understand the danger this bill represents, and reject this bill. Thank you.