Anita Cameron: Not Dead Yet Supports the Disability Integration Act

July 13, 2019ADAPT, aid in dying, Anita Cameron, assisted suicide, congress, Disability Integration Act, legislation, Our News & Commentary BlogADAPT, aid in dying, Anita Cameron, assisted suicide, Disability Integration ActDiane Coleman

Head and shoulders photo of Anita Cameron, an African American woman with long dreadlocks and brown sweater.

Not Dead Yet strongly supports the Disability Integration Act (HR 555 and S 117) which would give people with disabilities and seniors the civil right to receive attendant services and other supports at home, instead of in nursing facilities and other institutions.

It addresses many of the concerns of those who would feel they have no option but assisted suicide by assisting people to live, for whatever time they have, rather than assisting them to die.

The main reasons reported for people seeking the suicide drugs in Oregon were loss of autonomy, feelings of being a burden, loss of the ability to engage in activities, loss of the ability to control bodily functions and loss of dignity. These are disability issues, not just “end of life” issues. Attendant and other services and supports in one’s home are the solution to this, not doctor assisted suicide!

The Disability Integration Act would make it a requirement that insurance that pays for services in institutional settings must pay for them at home as well. For example, if one needs hospice services that are normally paid for in a hospital or nursing facility, the Disability Integration Act requires that insurance pay for people to receive that service at home. This would apply to both government and private insurance.

The Disability Integration Act would address the feelings of being a burden on one’s family by allowing people to receive services and supports they need in their own homes, thus taking pressure off of the family for the day to day care of someone deemed terminal. They can receive help to maintain independence and to do things that they enjoy so that they can keep their sense of dignity.

As assisted suicide spreads to states with diverse populations, Blacks, people of color and poor people will be increasingly vulnerable to assisted suicide due to disparities in healthcare delivery, including discrimination in prevention, treatment and pain relief.

ADAPT logo: Free Our People top, wheelchair access symbol with arms up breaking chains center, ADAPT below

The Disability Integration Act had 42 cosponsors when it was reintroduced in the House in the 116th Congress on January 15, 2019, the 90th anniversary of the birth of Rev. Dr. Martin Luther King, Jr. At this writing, there are 232 cosponsors. The bill has a majority in the House, as well as the committees and subcommittees of jurisdiction. Over 850
national, state and local civil and human rights, faith based, justice reform, housing and disability organizations support this bipartisan, bicameral legislation. The bill has more than the 218 required cosponsors in the House, per the rules set forth by House Speaker, Nancy Pelosi.

Despite this, the Disability Integration Act has been blocked by Rep. Frank Pallone (D-NJ), Chair of the Energy and Commerce Committee. Neither he, nor his staff will give ADAPT a clear reason why he is doing this.

Please call your representative and ask that they support the Disability Integration Act. If they are already cosponsors, ask that they contact Rep. Pallone and ask for a hearing. The freedom and liberty of disabled people of all ages hangs in the balance.

For more information about the Disability Integration Act, visit www.disabilityintegrationact.org.

Lisa Blumberg: Assisted Suicide California Style

July 8, 2019"death with dignity", aid in dying, assisted suicide, california, Lisa Blumberg, Our News & Commentary Blogaid in dying, assisted suicide, California, death with dignity, Lisa BlumbergDiane Coleman

John L’Heureux was a prolific writer and former Stanford professor who died April 22nd in California. His wife, Joan L’Heureux, initially told the New York Times that the cause was complications of Parkinson’s disease (1). Within a few days, though, the New Yorker published an essay by L’Heureux on why he would die by assisted suicide (2).

The piece, which was somewhat unimaginatively entitled “On Death and Dignity”, may have omitted salient facts. It is conceivable that he may have mischaracterized his wife’s stance. I have even considered the possibility that it was a hoax – one of L’Heureux’s more bizarre bits of fiction – but that seems unlikely since he did die when he said he planned to. The bottom line is that if L’Heureux’s death went down as he recounted, it is almost a textbook study on how these laws in and of themselves encourage suicide.

L’Heureux seems to have been a suggestible guy. He started college intent on becoming an actor but then his roommate out of nowhere said, “Why don’t you become a priest. You’re smart enough.” (3) L’Heureux became a Jesuit priest.

Some years later, he left the priesthood – not because he had problems with doctrine or with the Jesuits – but because he felt it was too hard to be the type of priest he wanted to be. Shortly thereafter, he married Joan, a former nun (4).

When L’Heureux acquired Parkinson’s disease (PD) as an older man, he was understandably concerned because his father had PD and ended up with cognitive decline and in a nursing home, fates that L’Heureux deemed inevitable. He referred to himself and his father as “parkies”. Yet, his literary career flourished. He continued to write novels and his short fiction appeared regularly in the New Yorker which he took as reassurance that he “was still compos mentis.” He obtained a contract to publish his new and selected stories as a collection subtitled “And Maketh Many Wild Leaps.” L’Heureux said that “my heart indeed made many wild leaps.” (5)

This all sounds like things were pretty good. Yet L’Heureux wrote that after another of his works was published, “I first looked into California’s death-with-dignity law. I found it hard to believe that the state was sanctioning a kind of suicide. Suicide? No, death with dignity.” (6) His focus on the law (which arguably did not even apply to him), the state and buzz words is telling. At another point in his essay, he said he was invoking the law as “justification” for his suicide. My guess is that the law whispered to him suggestively. Instead of “why don’t you become a priest”, it was “why don’t you kill yourself?”

L’Heureux discussed things with Joan and “we came to agree that, in this case, death sooner was better than death delayed.” (7) He did not say that Joan accepted or became resigned to his decision. Instead, they both agreed, he should die. Perhaps you could call it a unilateral suicide pact.

Next came a talk between L’Heureux and his doctor. “I reviewed for him my progress—I liked the irony of the term—from my half-assed stumbling walk to reliance on a cane, and then that sobering moment when I was forced to use a walker. That was where I was now. Next would come the wheelchair…” (8) The doctor told him that he still had enough brain matter to be of sound mind. L’Heureux took this as a compliment, although the practical effect of what the doctor said was that the doctor was not going to request a mental health evaluation.

“Thus my suicide began,” L’Heureux wrote dramatically. “Three home visits by two doctors—my primary physician and my neurologist—officially established my decision to die with dignity… I signed a formal document attesting to my decision, and it was co-signed and witnessed, according to the law.” (9) L’Heureux received his lethal prescription.

What’s wrong with this picture?

The main criteria of California’s assisted suicide law is that a person have a terminal illness which will, within reasonable medical judgment, result in death within six months. Yet, there is no mention in L’Heureux’s essay of his being at all close to death. He was just seemingly a man with a slowly progressive condition who like many people his age – he was 82 – used a walker and had some anxiety about the future. However, there is no clear mechanism in the law for enforcing the requirement that doctors determine that a person be in the end stage of an illness. It is sort of the honor system.

There is also the requirement that a person’s request must not arise from the undue influence of another. However, the doctor must only ascertain if the person “is feeling” unduly influenced. A person who is being influenced may not be aware of it. That is the nature of influence.

It is chilling to read of L’Heureux’s belief – a belief that apparently went unchallenged – that his suicide was “an agreed – upon act of love.” (10)

Many studies have established that people with PD have a higher suicidal ideation rate than the general population. In one study, suicidal ideation was present in 31% of participants with PD, compared with 16% of patients with psoriasis, and 2% of healthy controls. The authors recommended that “clinical assessment of PD patients should include a psychiatric evaluation investigating suicidal ideation and perceived disability”. (11) As with other groups, suicide among people with PD is a preventable tragedy.

Once L’Heureux had his lethal prescription, he and Joan discussed the date for what he called the Event. “Given the strain that all of this put on us…we chose sooner, rather than later. April 22nd, three weeks away.”

John L’Heureux died on that date. There may not have been anyone around with enough sway with him to suggest otherwise.

Footnotes

Massachusetts Legislative Briefing On Assisted Suicide Presents Strong Message

July 3, 2019"death with dignity", aid in dying, Anita Cameron, assisted suicide, john kelly, Massachusetts, Our News & Commentary Blogaid in dying, Anita, assisted suicide, John Kelly, MassachusettsDiane Coleman

Fresh off their strong showing at the June 25 committee hearing on assisted suicide bill H.1926, disability rights advocates were featured in a Statehouse legislative briefing hosted by Rep. Denise Provost (D-Somerville). A few photos from the well attended briefing were posted here last week. Rep. Provost titled the talks “What Could Possibly Go Wrong? Hear What Opponents Have to Say.”

Anita Cameron, Not Dead Yet Director of Minority Outreach, introduced herself as someone with “multiple disabilities, two of which are degenerative, and one which will take my life.”

She said our “inherently racist” healthcare system delivers inferior care to BIPOC (Black, Indigenous and People Of Color), who experience worse outcomes “with heart conditions, diabetes, cancer, and chronic pain.” Disabled BIPOC received even worse treatment.

“As a Black Latina,” she said, “I could never wrap my head around the assisted suicide phenomenon. I thought that it was some odd thing that privileged White people were into. “

(This quote was picked up by the Cape Cod Times from Anita’s testimony at the committee hearing 2 days earlier.)

Anita told the amazing story of her mother, whom doctors pronounced imminently dying 10 years earlier. Anita’s mom moved back to Colorado to die, but instead revived and is now planning to increase her mobility with knee replacement surgery.

Anita summarized: “Because of the racist nature of our health care system and the tendency of doctors to devalue the lives of disabled and people of color, assisted suicide has no place as an option in Massachusetts.”

John Kelly, Not Dead Yet New England Regional Director, backed up Anita’s talk with slides showing the geographic and class divide evident in the voting patterns for the 2012 ballot question on assisted suicide. Wealthier and whiter parts of the state, such as in Western Mass and Newton, voted strongly yes, while more working class communities, whether majority Latino and black like Lawrence and Springfield, or white like Gardner and Taunton, voted heavily against.

John, who is also the Director of Second Thoughts MA, emphasized that patients under assisted suicide programs are disabled and are reported as desiring death precisely because of their “existential distress” about depending on other people for activities of daily living, which made them feel undignified and like a burden.

John then explained how assisted suicide is like a death penalty, which progressives overall oppose because of the estimated 4% of innocent people sentenced to death. With assisted suicide laws, at least 12%-15% of people who enter six-month hospice will outlive the program. Non-dying people will inevitably get pushed towards death, first by doctor’s mistakes, second by insurance greed, and third by intimate abuse and violence.

Oregonian Jeanette Hall serves as an example of the first group. When Jeanette was diagnosed terminal, she sought assisted suicide, only to be persuaded by her doctor to try more treatment. Alive 19 years later, Jeanette urged Massachusetts in a 2011 letter to the Boston Globe not to make Oregon’s mistake by passing an assisted suicide bill.

A second group of people will get herded toward death because of finances, whether by denial of treatment by insurance companies, or the inability to pay; and a third group will pay the ultimate penalty because of persuasion and bullying, the shame of feeling like a burden, and straight up murder for gain.

John also corrected the falsehood continually pushed by assisted suicide proponents that there have been no abuses in Oregon. He referred to 16 pages of problems included in attendees’ packet of materials, and highlighted the case of Wendy Melcher, whose killers received a tap on the wrist from the Oregon nursing board and no involvement from civil authorities.

Peer Specialist Brian Shea represented M-POWER, a grassroots group of people with lived experience of mental health diagnoses, trauma, and addiction. As someone who has experienced deep depression, Brian described the choice of getting on a bus or driving his wheelchair in front of it. He said that the law’s required mental health consultation would be easy to game by pretending for 50 minutes not to be depressed. There would be no way to remedy mistakes, as the state would descend into “barbarism” by throwing away some of its least valued residents.

Palliative care physician Laura Petrillo, who when living in California had strongly opposed its assisted suicide bill, emphasized that palliative care can control people’s pain and help guide them through a process full of meaning and connection. Laura responded to audience questions about “pain and suffering” with the tenets of palliative care and a call for state expansion of palliative care training.

Rep. Provost began the briefing by inviting Boston University law professor George Annas to discuss the strong role that “substituted judgment” plays in Massachusetts treatment decisions for incapable residents. Once death by assisted suicide is understood as a “benefit,” it will be extended to people who – if they were capable – would reasonably be thought to choose death over treatment.

And a big thanks to disability advocates John Robinson, Don Summerfield, Sandy Durmaskin, and David Rolde, who came out in support of the briefing, and to Patients Rights Action Fund Executive Director Matt Valliere, who helped manage logistics and coordinate speakers at the hearing and a press conference on June 25.

— John Kelly

Bill Peace: A Professor Who Professed Disability Activism

July 2, 2019ableism, activism, assisted suicide, bill peace, bioethics, Our News & Commentary Blogassisted suicide, bill peace, bioethicsDiane Coleman

By now, many who read this message will know that Bill Peace died not long after midnight this morning. In the hours since, the outpouring of both grief over our loss and celebration of his life is nothing short of incredible. He has been one of an increasingly rare breed of academics who embrace disability activism. The countless lives he touched – his students, his colleagues, his friends, his family (his personal family and very extended disability family) – are a testament to his amazing ability to communicate and advocate for our fundamental civil rights.

Bill’s Facebook page is full of memories and tributes today, including stories and articles, like this wonderful profile in New Mobility Magazine. Here’s an excerpt concerning his work on bioethics issues:

The Underlying Problem: Devalued Lives
In 2006, Peace’s career took a sharp turn after he read about the Ashley treatment. The treatment was a series of procedures performed, at the request of her parents, on a Seattle child with developmental disabilities named “Ashley X.” The surgeries were intended to stunt her growth, eliminate menstruation and prevent her from developing large breasts.

It was a wake up call for Peace. “It wasn’t what they did that was horrible, it was that there was a 38-person bioethics meeting at one of the leading children’s hospitals in the nation, and they gave it the go-ahead,” he says. “They illegally sterilized a profoundly disabled child.” Soon after, he began work in bioethics and disability studies, while becoming a harsh critic of the cure industry.

Little did Peace know, but his work in bioethics would hit very close to home. In 2010, he was hospitalized with a stage IV pressure sore. After an especially difficult debridement, a hospitalist encouraged him to discontinue the aggressive treatment and pursue end-of-life care. Peace refused the offer but the experience shattered him. “Somebody I had never met determined my life wasn’t worth living,” he says.

It took almost two years to heal the wound, but Peace vowed to advocate against assisted suicide. The reason for doing so was simple. “People are needlessly dying, and there’s no nuanced view of disability within the medical community,” he says. He joined the board of directors of the advocacy group Not Dead Yet, and since then has become a leading national critic of the practice of assisted suicide.

Bill joined the NDY board in 2013. The year before, NDY reported on his groundbreaking article in a leading bioethics journal about that middle-of-the-night visit from a hospital physician recommending that he consider dying rather than receiving antibiotics for his pressure wound. The journal article is now behind a pay wall, but excerpts remain available in the NDY blogs and Bill told the story in his Bad Cripple Blog.

The New Mobility article also included a great example of Bill’s activism following a workshop he did entitled “The Walking Dead and Assisted Suicide”, when he “led a procession of fellow scholars dressed as zombies across the Syracuse University campus.” (Photo by Stephen Sartori.)

Over a dozen people marching on a wide sidewalk pathway, with faces wearing white and/or red makeup, including two using wheelchairs, one with a white cane. Bill Peace is in the lead with a briefcase on his lap.

Recently, complications developed from new pressure wounds, but the hospital that cared for him in these last several days was described by his family as respectful, showing the utmost kindness and trying very hard to save him from the infection that has taken him from us.

Months ago, if insurance had been willing to cover the type of therapeutic bed he needed to help heal the wounds, he might have made it through. I suspect it would have cost insurance much less than a week in an intensive care unit. Outrageous insurance decisions like this are killing people with disabilities. We lost Carrie Lucas in February this year, and now Bill. We’ll never know how many others, but this can never be acceptable and must stop!

Bill repeatedly challenged society’s “better dead than disabled” message. Stephen Drake, NDY’s research analyst, covered examples like these (note: some of the embedded links may not work anymore):

For more of NDY’s blogs featuring Bill’s work, go here.

And for links to some of Bill’s Bad Cripple Blogs on NDY issues, many are listed on our articles page.

One of our favorite pieces is this great video satire:

YouTube: EZ Breezy Assisted Suicide w/ Bill Peace (and Tipsy Tullivan)

Bill Peace has left all of us a rich legacy spanning decades during this critical time for the disability rights movement. He will be deeply missed, and he won’t be forgotten.

— Diane Coleman

Mass. Assisted Suicide Legislative Briefing: “What Could Possibly Go Wrong?”

June 27, 2019Our News & Commentary BlogDiane Coleman

Opponents of the Massachusetts assisted suicide bill ran out after distributing thirty information packets when about forty representative staff members attended a legislative briefing today (June 27). Sponsored by Democratic Representative Denise Provost, the briefing was entitled:

“End of Life Options” bills H. 1926 and S. 1208

What Could Possibly Go Wrong? Hear What Opponents Have To Say

Speakers covered a wide array of critical issues:

Rep. Denise Provost, “Who chooses end of life care? Substituted judgment doctrine in Massachusetts” (and guest speaker Professor George Annas)
John B. Kelly, Director, Second Thoughts MA, “If as a progressive you oppose capital punishment, you must oppose H.1926”
Anita Cameron, Not Dead Yet Director of Minority Outreach, “Impact on and opposition of minority and working-class communities”
Dr. Laura Petrillo, Palliative care physician/researcher, Mass General Hospital, “Suffering at the end of life: the right problem, the wrong solution”
Brian Shea, Peer Specialist, M-POWER, “Disability and depression under a broken, commodified healthcare system”

Below are a few photos from this very successful event.