Webcast archive: 2019 – Year in Review

A look back at the very eventful year we had…

In this episode of Euthanasia & Disability, Amy Hasbrouck, Christian Debray & Taylor Hyatt discuss:

  • 2019 – Year in Review

Please note that this text is only a script and that our webcast contains additional commentary.

2019: YEAR IN REVIEW

  • It’s hard to believe that December is already half over. That means it’s time to review the important events from 2019.
  • In January and February, we looked at the Council of Canadian Academies reports, including an overview and one webcast for each of the three reports. We called the series “something about us, without us” because people with disabilities were not included in the working groups that drafted the reports, resulting in a flawed understanding of the role of disability discrimination in encouraging assisted suicide and euthanasia (AS/E).
    • The report on euthanasia for people with dementia (via advance requests) included several disturbing assumptions, including the idea that death is preferable to life with dementia or other severe disability, or to using a feeding tube. We also pointed out errors that led us to disagree with one of the report’s conclusions; that advance directives have “occasionally positive, mostly equivocal, and no negative effects on patient outcomes.”
    • The report on mature minors ignored two important problems that would have a great impact on expanding eligibility for AS/E to adolescents:
      • suicide and risky behaviour among teenagers; and
      • abuse and “mercy killing” of disabled children.
    • Nor did the report take into account the combined effect of barriers to decision-making for disabled youth, such as: dependence on loved ones for personal care; the impact of negative views of disability on self-esteem; isolation; painful and invasive medical procedures; peer pressure and bullying; and the usual problems of adolescence.
    • Finally the working group studying AS/E for people with mental disorders ignored the impact of mental illness on people with disabilities, because the committee’s mandate was limited to people whose only reason for the euthanasia request was a mental disorder. Nor did the working group challenge the “better dead than disabled” foundation  of the AS/E law, where some suicides will be prevented while others will be made possible by euthanasia. The report discounts real problems, like inadequate access to palliative care and being forced into an institution, as the cause of hopelessness and despair.
  • The United Nations Special Rapporteur on the Rights of People with Disabilities, Ms. Catalina Devandas Aguilar, visited Canada in April to gather first-hand information about the status of people with disabilities, to determine whether disability rights are being respected, and to make suggestions to improve compliance with the Convention on the Rights of Persons with Disabilities (CRPD). She was “extremely concerned” that disabled Canadians have been pressured to seek MAID, and don’t have viable alternatives.
  • In a May webcast we provided details from Health Canada’s fourth interim report on the federal MAiD law. The average number of deaths per month increased from 85 during the first reporting period to 261 deaths per month during the final interim reporting period. The total number of people who had received MAiD as of October 31, 2018 was 6,749, excluding the Territories and euthanasia in Québec after March 31, 2018.
  • We posted on our blog regarding the death of Vincent Lambert in July, after the removal of his feeding tube. Like Terri Schiavo, Mr. Lambert’s parents and spouse disagreed about whether he would want to live with a severe brain injury, requiring constant support.
  • This summer we also launched a data collection project to prepare for the five-year review of Canada’s euthanasia program, and to try to capture information we believe will be missed by Health Canada’s monitoring system. The project is meant to track social and economic pressures that cause people to request AS/E, the deaths of ineligible people, and non-respect of safeguards.
  • This year the disability rights movement lost several activists, artists and leaders who will be sorely missed. They include: Carrie-Ann Lucas, Katherine Araniello, Denise Karuth, Bob Liston, Bill Peace, Carmela Hutchison and Marca Bristo. Both Carrie Ann Lucas and Bill Peace died due to complications of “cost-saving” treatment decisions.
  • We highlighted several individual cases of problems with AS/E this year.
    • In August, we reported the death of Sean Tagert, a man with ALS who needed 24-hour support to live independently. British Columbia health care authorities would only cover 20 hours per day of personal assistance, instead offering to place him in a nursing home, far from his 10-year-old son. Mr. Tagert believed death was preferable to the limitations of institutional life, and when his efforts to advocate for the needed coverage failed, he died by euthanasia.
    • In September, the family of Alan Nichols went public with his story. Mr. Nichols was hospitalized after some personal setbacks caused him to become suicidal. While in hospital, he made a request for euthanasia that was approved, and he died in July of this year. Mr. Nichols’ family is trying to learn how Alan, who did not have a grievous and irremediable medical condition in an advanced state of irreversible decline, whose natural death was not reasonably foreseeable, but who did have a history of untreated depression, could be determined eligible for euthanasia.
    • Then in November, we examined three case histories of potential problems with the practice of MAiD presented by Toronto doctor David D’Souza at a conference in Ottawa. One person without a confirmed diagnosis was nevertheless deemed eligible and was euthanized, while a second was not because she was unable to consent to the procedure. A third person was persuaded to use palliative care rather than euthanasia after refusing treatment of his chronic condition.
  • On September 11, a Quebec Superior Court ruled in a case brought by two disabled people who challenged the Federal MAiD law’s eligibility requirement that natural death must be “reasonably foreseeable” and the provincial law’s mandate that the person be at the “end of life.”  The judge in the Truchon case struck down the challenged sections, saying they violated the plaintiffs’ rights. She also said the legislative objectives of not perpetuating negative views of disability and of preventing suicides were too vague to justify the violation.
    • Also in mid-September, the Lamb case in British Columbia was adjourned on request of the plaintiff’s attorney. Mr. Arvay cited an affidavit submitted by cancer psychiatrist Dr. Madeline Li on behalf of the Attorney General stating that Ms. Lamb’s death would probably be considered “reasonably foreseeable,” under current standards of practice of MAiD providers.  (We examined Dr. Li’s report in depth in October)
    • The Truchon court gave Parliament and Québec’s National Assembly six months to modify the statutes to comply with the ruling. Despite efforts by disability rights activists and others during the election campaign, the federal and provincial Attorneys General opted not to appeal.
  • The Commission on End-of-Life Care in Quebec has released four annual reports and a summary report since euthanasia began in December of 2015. In April we highlighted the Commission’s summary report and in November we discussed the latest annual report, which provided statistics on euthanasia and continuous palliative sedation.
    • Between April 1, 2018 and March 31, 2019, 1,331 people were euthanized, while 1,243 people received Continuous Palliative Sedation. Euthanasia and CPS each accounted for 1.9% of deaths in Québec during the 2018-19 period, for a total of nearly 4% of all deaths in the province.
    • A total of 2,909 euthanasia have been reported since December of 2015, while 2,947 continuous palliative sedations have been tallied.
    • The Commission recorded 15 euthanasia of people who were not eligible. In 64 cases, the Commission found that safeguards were not respected.
    • Of the declaration forms submitted to the Commission, 84 came in more than six months after euthanasia was provided.
      • The Commission had to pursue doctors to get 60 euthanasia declaration forms in order to produce its summary report.
      • Eleven declarations were never produced.
      • The summary report mentions “around 20” euthanasia that were not reported by doctors or facilities, but which came to light following audits by institutions; the euthanasia were identified through the pharmacy records.
    • The average time between signing the request and administration of euthanasia was 12 days; 40% of euthanasia occurred within 10 days of the request.
  • Finally, on December 6, we held a special edition of the webcast, inviting people from across Canada to discuss how the euthanasia law is failing people with disabilities, political and legal options for changing the law, and to begin to build a network of support. Participants included: Gary Nichols (brother of Alan), Alex Schadenberg of the Euthanasia Prevention Coalition, Dr. Heidi Janz (chair of CCD’s Ending-of-Life Ethics Committee), and independent living advocate Jonathan Marchand.
  • All of our webcasts and blog posts are available on our website, though some videos are missing, due to technical problems with the transition to YouTube’s new video streaming platform last summer.
  • We will return on January 17, 2020 with news and information on end-of-life and disability issues. In the meantime, we wish you a joyous and peaceful holiday season.
TVNDY