In this episode of Euthanasia & Disability, Amy Hasbrouck, Christian Debray, and Taylor Hyatt discuss:
- In memoriam:
- Bill Peace
- Carmela Hutchison
- Sean Tagert dies for lack of home care
- Update on assisted suicide bills in the U.S.
Due to a technical issue, there will be no audio/video available for this week’s webcast.
- For our first webcast of the season, we’ll be catching up on events from the summer. But first, we must pay tribute to two colleagues and disability rights advocates who died recently.
- Writer, activist and professor Bill Peace passed away on July 2nd. Bill was a member of the Board of Directors of Not Dead Yet in the United States, and taught courses at the University of Syracuse, and Yale University. Mr. Peace was also featured in the Euthanasia Prevention Coalition’s documentary “Fatal Flaws,” discussing ableism in the medical system.
- After hearing about the “Ashley treatment” in 2006, Mr. Peace began to speak out against the ways disabled lives are devalued – including euthanasia, assisted suicide, and denial of health care. His blog, “Bad Cripple” ran from 2007 until his death.
- New Mobility Magazine featured a profile of Mr. Peace in 2014, which touched on his experience of acquiring a disability as a child, the lessons he learned about disadvantage and advocating for himself, and how he began to challenge barriers and discrimination in academia. Scholars with disabilities often face economic constraints when traveling to conferences and meetings, in addition to the physical barriers of buildings.
- Bill believed in confrontation and calling discrimination what it was. He told New Mobility that, since academic institutions see disability accommodations as minor and inconsequential even with the Americans with Disabilities Act in place, change would not be possible “until it becomes painfully obvious that it’s far easier to make the accommodation than it is to have the argument.”
- Mr. Peace had sought treatment for multiple pressure sores in the months before his death. Unfortunately, his insurance company would not pay for the expensive therapeutic bed and supplies that would help heal and prevent further wounds. In his blog, he described how it was impossible to comply with wound care protocols without the needed equipment and supplies.
- Bill made a grim prediction: “For me to access a Clinitron bed I would need to become septic. If septic I would be hospitalized and placed in a Clinitron bed. Once sepsis is cleared I would be sent home, and to the same bed that caused my wounds. An obvious pattern would emerge. Bouts of sepsis, an increasing number of wounds and hospitalizations. … My body will weaken, sepsis will become increasingly difficult to treat and recover from. I will likely catch a very bad infection in the hospital and succumb to infection. This is a miserable way to die.”
- Mr. Peace also mentioned that he was using the same insurance – and the same hospital – as Carrie Ann Lucas. Ms. Lucas, another member of the NDY board, died in February after her insurer refused to pay for medication needed to treat an infection. The lives of Carrie Ann Lucas and Bill Peace were cut short by arbitrary and unjust policies that lacked foresight. (We discussed these issues in our May 3rd webcast.) You can read Diane Coleman’s tribute to Bill Peace on NDY’s website.
- We are also mourning the death of Carmela Hutchison on August 19, at the age of 58. Ms. Hutchison worked as a nurse specializing in mental health before acquiring physical and psychological disabilities in the early 1990s.
- Ms. Hutchison was involved with many disability and mental health organizations. She gave workshops and facilitated support groups related to mental illness and disability.
- Ms. Hutchison was a Lifetime Member of the National Network for Mental Health, former president of the Alberta Network for Mental Health, and former vice-chair and treasurer of the Alberta Alliance on Mental Illness and Mental Health.
- Ms. Hutchison became interim president of the Disabled Women’s Network/Réseau d’action des femmes handicapées (DAWN-RAFH) Canada in 2006, and served as president from 2007-2019.
- She was a former board member of the Council of Canadians with Disabilities, as well as a member of CCD’s Ending of Life Ethics Committee. Ms. Hutchison also appeared in a documentary last year: “Not a One-Way Street” by Eva Colmers and Dr Heidi Janz.
- Outside of her many formal roles, Ms. Hutchison provided countless hours of advocacy, information, referral and support to people navigating the healthcare system, both in person and over the phone.
- Carmela was passionate and tenacious in advocating for the interests and needs of all people subject to oppression, while building bridges between people of diverse perspectives. Ms. Hutchison embodied integrity. She spoke truth to power and demanded accountability, even as she provided loving, unquestioned support to those who needed it.
- Her loss is a tremendous blow to all social justice movements. We send our condolences to Carmela’s husband Bob, as well as her family, friends, and colleagues.
SEAN TAGERT DIES FOR LACK OF HOME CARE
- Sean Tagert was a 40-year-old man with ALS living in British Columbia. He needed 24-hour in-home assistance in order to live independently. Local health authorities would only cover 20 hours of care per day, and suggested that Mr. Tagert move into long-term care if he needed more. The only available facility was in Vancouver, 4.5 hours’ drive from Mr. Tagert’s Powell River home and family. He refused, saying death was preferable to the isolation of institutional life and being far away from his son. After relying on aging relatives to fill gaps in his care over a few weeks, Mr. Tagert died by euthanasia on August 9th.
- This is exactly what we feared would happen when Bill C-14 was introduced. Although news reports have said that Mr. Tagert “chose” to end his life, it was not what he truly wanted. He made it clear that death would be an escape from difficult circumstances. Dr. Leonie Herx, a palliative care physician from Toronto, called for “a public outcry around peoples’ right to access care, to support them in choosing … life rather than just a right to death. A person should have the resources provided to live at least in their community, not to have to move … to another city.”
- Mr. Tagert’s situation is similar to several legal cases that were brought in the 1980s where people with spinal cord injuries who were stuck in nursing homes won the right to have respirators turned off. These rulings, sometimes referred to as the “Give me liberty or give me death” cases, resulted in the deaths of David Rivlin and Kenneth Bergstedt. Larry McAfee, who won a similar case, was contacted by disabled activists from a Georgia independent living center, who helped him obtain funding for personal care attendants and move into an apartment. The families of Rivlin and Bergstedt rejected approaches from the disability community.
UPDATE ON ASSISTED SUICIDE BILLS IN THE US
- Bills that would legalize assisted suicide were on the docket in 20 American states this year. As of June, bills have been defeated in the following jurisdictions: Arkansas, Arizona, Connecticut, Indiana, Iowa, Kansas, Maryland, Nevada, New Mexico, Virginia, and Utah.
- The outcome of bills in the following states is still uncertain: Delaware, Massachusetts, Minnesota, New Hampshire, New York, and Rhode Island.
- Two states adopted assisted suicide – Maine and New Jersey. However, the New Jersey law has been put on hold in order to give state agencies time to craft necessary regulations. Doctors cannot write prescriptions for lethal substances until at least October 23.
- A new bill has been passed in Oregon. At the end of July, state governor Kate Brown signed a bill allowing people with less than 15 days to live to waive the 15-day waiting period between the first and second assisted suicide requests. A second bill (HB2232) will be reviewed in committee when the state legislature resumes. If passed, two terms related to the assisted suicide process would be given new definitions. A “terminal disease” is currently defined as an “incurable and irreversible disease that has been medically confirmed and will, within reasonable medical judgment, produce death within six months.” The definition would be changed to: “a disease that will, within reasonable medical judgment, produce or substantially contribute to a patient’s death.” The Patients’ Rights Council says this goes beyond the current broad interpretation. “It doesn’t mean that the disease is incurable or irreversible. It doesn’t mean that the patient has a short time to live. It doesn’t mean that the particular disease will eventually cause death. It only means that it is expected to contribute to a patient’s death in days, months, years or decades.”
- HB2232 would add a new term to the definition section; “‘Self-administer’ means a qualified patient’s physical act of ingesting or delivering by another method medication to end his or her life.” According to the Patients’ Rights Council, the person can take the substance by mouth, via injection, or through a feeding tube. The Council is concerned that there is no way to prove the person took the drug by themselves, without coercion.