Webcast archive: Special edition

A commentary on a number of current issues that we think should inform the review of the law – featuring the Nichols family, Jonathan Marchand, Heidi Janz and other advocates

In this episode of Euthanasia & Disability, Amy Hasbrouck & Christian Debray invite a group of advocates to discuss the state of euthanasia in Canada. The text of their remarks is below. Due to the nature of the conversation, the remarks of the other participants could not be captured in our script. However, CART transcription is available in the video.

WELCOME

  • Today’s webcast will be a discussion of some issues related to assisted suicide and euthanasia (AS/E).
  • TVNDY is a non-religious organization by and for people with disabilities and our allies.  We believe that the choice to die is not free as long as old, ill and disabled people don’t have a free choice in where and how they live, and that must change.
  • As we said in our invitation, our goals for this meeting are to:
    • Learn about how the medical assistance in dying (MAiD) law is failing people with disabilities;
    • Look at political and legal options to challenge or modify the MAiD law;
    • Build a supportive community of people who’ve faced pressure to end their lives.
  • We’ll start by giving some case histories, and talk about euthanasia in Québec.  Then we’ll move on to outline some of the political and legal options and finally talk about how to support each other. We’ll invite comments and questions as we go along.
  • Does anyone have anything they’d like to add or a topic to suggest for another meeting down the road?

HOW THE MAID LAW IS FAILING PEOPLE WITH DISABILITIES

  • We are concerned about three trends we’ve observed in how the MAiD law is working in practice:
    • People facing social and economic pressures to request euthanasia
    • Ineligible people being euthanized;
    • Safeguards not being followed.

News stories and case histories

  • We want to start by giving some examples that we’ve collected, and then ask you to comment on your experience.
    • In August we talked about the death of Sean Tagert, a man with ALS who needed 24-hour support to live independently. The British Columbia health authorities would only provide 20 hours/day, and suggested he move into an institution, far from his family. He believed death was preferable to the limitations of institutional life, and was euthanized in August.
    • Alan Nichols was hospitalized in June after several distressing life changes led him to stop caring for himself. 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 find out how he could be deemed eligible for MAiD without a “grievous and irremediable medical condition,” but with a history of untreated depression.
  • As well, we recently discussed three case histories provided by Toronto doctor David D’Souza:
    • Janice’s family asked Dr. D’Souza to euthanize her when he visited her in a nursing home. Dementia had affected her ability to communicate and recognize her loved ones; her family showed him a 10-year-old will to prove she did not want to live with severe cognitive deficits.  Dr. D’Souza told the family that Janice was not eligible for euthanasia, because she must make the request (not her family) and she was not competent to consent when euthanasia was administered.
    • Eddie wanted to be euthanized as a way to “relieve [his] suffering,” after deciding to stop dialysis. Once Dr. D’Souza arranged for palliative care, Eddie “died peacefully and comfortably, and of natural causes.”
    • Jim wanted to be euthanized after discovering hardness in his abdomen, but without a definite diagnosis. After Dr. D’Souza encouraged him to seek further tests and consultations (which he refused), he was found eligible by the MAID team at his local hospital. In a final meeting, Dr. D’Souza found Jim and his family preparing for “the big event;” his death by euthanasia.
  • Would anyone like to make a comment?

A summary of data from Québec

  • Though the interim reports on the federal MAiD law offer little detail, the Commission on End-of-Life Care in Quebec has released four annual reports and a summary of euthanasia in that province since the practice began on December 10, 2015.  (See our coverage of the first report, second report, third report, a summary report, and the fourth report). The Québec reports have provided some information, yet they contain inconsistencies and lack important details. It is also important to note that Québec has a procedure for verifying the number of euthanasia by cross checking doctors’ declarations of euthanasia against reports from institutions; this doesn’t exist in the federal monitoring system.
    • In Québec, 2,909 euthanasia have been reported since December of 2015, while 2,947 Continuous Palliative Sedations have been documented.
    • The Commission has recorded 15 euthanasia of people who were not eligible.
    • In 64 cases, the Commission determined 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 last spring. 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 number of requests was ten times more than anticipated before the program started; 65% were approved and euthanized.
    • The average time between signing the request and administration of euthanasia was 12 days; 40% of euthanasia occurred within 10 days of the request.
    • Euthanasia and CPS each account for 1.9% of deaths in Québec between April 1, 2018 and March 31, 2019, for a total of nearly 4% of all deaths in the province.
  • Would anyone like to add a comment?

The Data Collection Form

  • Last summer we developed a data collection form to record people’s stories in a more organized way, to get ready for the the five-year review of Canada’s euthanasia law that was supposed to start next June. Since then, of course, the Truchon decision means Parliament will be modifying the MAiD law before then, and the study may be postponed indefinitely.
  • Besides problems with the MAiD program, we’re also looking at related life-ending practices, such as continuous palliative sedation (CPS), refusal to provide necessary medical care, and rushed judgments that continued care is futile.
  • Would anyone like to comment?

POLITICAL AND LEGAL OPTIONS

  • As you know, a Québec Superior Court judge declared the “reasonably foreseeable” natural death eligibility criterion unconstitutional in September.  Since the attorney general did not appeal the Truchon decision, Parliament has until March 11, 2020 to modify the federal MAiD statute.  The “end-of-life” requirement in the Québec law was also struck down, and the provincial government has already announced plans to expand eligibility.
  • The Council of Canadians with Disabilities (CCD) and the Canadian Association for Community Living (CACL) are meeting with the Attorney General’s staff, Minister for Disability Inclusion Carla Qualtrough and the Health Minister about the AS/E statute.  Among the ideas being considered are:
    • Preserving an “end-of-life” criterion as a way to protect the equal right to live with dignity and respect;
    • Defining “external pressure” to include socio-economic and other factors that lead to vulnerability;
    • Making the Vulnerable Persons Standard (VPS) part of a formal capacity assessment process.
  • At the same time, Parliament and Québec’s National Assembly are facing a lot of pressure from pro-euthanasia activists to expand eligibility, specifically to:
  • Are there any other political initiatives people would like to mention?
  • On the legal front, there are a couple of claims still pending.
    • The best-known was brought by Roger Foley against the Ontario government and others when he was denied self-directed personal assistance services, was endangered by the negligence of home-health agency workers, was “offered” euthanasia and harassed by hospital staff.  Mr. Foley also filed a complaint under the UN Convention on the Rights of Persons with Disabilities, which led to a meeting with the Special Rapporteur in April of this year.
    • In a related case, nursing home residents in Québec led by Daniel Pilote have filed a class action over unsafe and inhumane conditions in long-term care facilities.
    • Other possible legal actions we’ve heard about:
      • A wrongful death claim, brought by the family of Alan Nichols;
      • A demand for access to palliative care, brought by Ing Wong Ward and her husband;
      • A claim for access to self-directed personal assistance services (with Heidi Janz).
  • The United Nations Convention on the Rights of Persons with Disabilities guarantees certain rights that are directly related to AS/E.
    • Article 10 – Right to life. States parties:
      • “reaffirm … the inherent right to life”
      • “and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.”
    • Article 19 – Living independently and being included in the community. “(b) “Persons with disabilities have access to a range of in-home, … services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation.”
    • Article 25 – Health. “Persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination,” including:
      • “(b) … those health services needed by persons with disabilities specifically because of their disabilities,”
      • “(f) Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.”
    • Palliative care is addressed in other UN human rights documents.
    • The Optional Protocol allows individuals to bring complaints (called “communications”) under the Convention.
  • Does anyone have anything they’d like to add?

BUILD A SUPPORTIVE COMMUNITY

  • Despite the best intentions, the message “better dead than disabled” is very damaging.
  • The message is everywhere.
  • It helps to talk about it sometimes, to hear about what others are doing, to commiserate and share the occasional success.
TVNDY