Friday, April 12, 2019

Summary Report on End-Of-Life Care (euthanasia) In Québec.

The following report was published by the disability rights group, Toujours Vivant - Not Dead Yet on April 12, 2019 and republished with permission.
By Amy Hasbrouck and Taylor Hyatt

Québec’s Commission on end-of-life care issued a summary report of the status of end-of-life care in Québec. The report deals with palliative care, continuous palliative sedation (CPS), euthanasia (administered or not), and the activities of the Commission itself. But the document only includes data up through March of 2018.

The report presents some obvious findings:

  • The number of euthanasia and CPS are increasing. 
  • Some doctors, hospitals, and regions provide more palliative care, CPS, and euthanasia than others. 
  • Most of the people who die by euthanasia and CPS are over 60 years old and have cancer.
The report identifies some problems, such as that the Commission doesn’t have the data necessary to say how many people who need palliative care aren’t getting it. But we are aware of, or can predict other problems that are not addressed by the report, such as:
  • People forced to live in institutions are requesting and receiving euthanasia; 
  • We don’t know how doctors decide if a person is subject to “external pressure” to request euthanasia, and whether psychosocial, economic and discrimination-related factors are taken into account, besides coercion and abuse. 
Palliative care

The Commission admits it doesn’t have data to prove that the gaps in palliative care services observed in a report published in 2000 still exist, but they’re pretty sure that’s the case. The only data available count people who are receiving palliative care services, or who apply for euthanasia.

Service gaps exist in all areas where palliative care is delivered; home-hospice services, hospital-based palliative care units and free-standing hospices.

The report focuses on palliative care as an option only for people at the end of life. This despite the fact that effective pain relief is essential to many people with disabilities, and the authors propose expanding euthanasia to people who are not at the end of life.

The section on palliative care doesn’t address services to prevent institutionalization and requests for euthanasia, which are central to the Truchon/Gladu and Lamb cases.

Continuous Palliative Sedation

Of the people who died by Continuous palliative sedation:
  • The report provides more detail about symptoms that justified CPS than about the kind of suffering that lead to requests for euthanasia: 
    • Psychological / existential distress = 58%; 
    • Physical pain = 28%; 
    • Difficulty breathing = 25%; 
    • Delirium and agitation = 20%.
  • Ninety-four percent filled out and signed the consent form. In the other cases: 
    • The form was not signed, but was in the medical file; 
    • The form was missing from the file; 
    • “oral” consent was given by the person or their family; 
    • The form was not signed because the substitute decision-maker was absent.
  • According to medical records, 83% of people received palliative care before asking for CPS and 6% never had palliative care. Information was not available in the remaining 11% of cases.
  • Eighty-one percent died within three days of when CPS was started.

Euthanasia (administered)

  • The number of requests was ten times more than anticipated before the program started. 
  • “According to data gathered by the Commission, 1,632 people received MAiD in Québec between December 10, 2015 and March, 31, 2018.”  
    • Footnote 33 states “the Commission is aware that the total of MAiD (1,632) … does not exactly correspond to the total declared in the reports from institutions and the Collège des Médecins du Québec shown in the latest report of the Commission’s activities,” published in December of 2018. That figure was 1,664, a difference of 32 euthanasia. The Commission does not explain this discrepancy. 
    • It’s unclear whether the 1,632 figure comes from the total reported by institutions and the CMQ, or from doctors’ forms. In fact, nowhere in the 124-page summary report does the Commission explain why the number of euthanasia reported by institutions and the CMQ has been higher in the three annual reports, than the number declared by doctors. 
    • Of the doctors’ declaration forms submitted to the Commission, 84 came in more than six months after euthanasia was provided. 
    • By the Commission’s count, more than 60 euthanasia had not been reported by doctors as of March 31, 2018; 11 doctors’ reports were still missing when the summary report went to press. 
    • As well, footnote 57 mentions “around 20” euthanasia that were not reported by the doctors or facilities, but which came to light following audits by institutions that found the information in their pharmacy records.
  • The average time between signing the request and administration of euthanasia was 12 days. 
  • The Commission describes the reasons for euthanasia request (suffering) in the broadest possible terms; Physical suffering, psychological suffering, or both. Not surprisingly, 89% reported both. The report did not specify how many people had what kind of discomfort (physical pain, breathing problems, nausea, existential suffering, feelings of loss of dignity, problems with self-esteem, grief, etc). 
  • Of note, the Commission appears to have checked off “physical suffering” even where it wasn’t an issue. Footnote 43 states: “In light of the totality of information listed on the forms, physical suffering was determined to be present even if the form indicated that it was well managed or that there was only minor physical discomfort.” 
  • The Commission says that 80% of people were receiving palliative care when they requested euthanasia, and 89% were getting it when MAiD was administered. However the Commission makes no assurances as to the quality or quantity of that service. This percentage of palliative care access is higher than that reported in a study from McGill University we reported on last December. 
  • The authors note that the number of euthanasia performed at home in Quebec (20%) is half that of other parts of Canada (>40%) and Europe. Some people were admitted to hospital just to be euthanized. 
  • The Commission estimates there could be up to 1,500 euthanasia performed in Québec during the fiscal year ending March 31, 2019. That’s almost as many as in the 28 previous months. 
  • The data confirm the theory that there are a few “death doctors” who specialize in medical homicide, plus many other physicians who do one or two euthanasia per year.
Euthanasia not administered
  • Of the 2,462 requests, 830, or just over 1/3, did not result in euthanasia. Such requests are not reported, so the commission had to look at the medical records of the people who made a request to determine the outcome, and to learn why euthanasia did not take place. The reasons fell into three broad categories: 
    • the person was deemed ineligible, 
    • the request was withdrawn; or 
    • the person died before euthanasia can be carried out.
  • The reasons euthanasia was not administered: 
    • The person was not eligible when the request was made (191) because:  
      • They were not at the end of life – 97; 
      • They were incapable of giving consent when the request was made – 58; 
      • They did not have “intolerable suffering” when request was made – 48; 
      • They did not have a “grievous and irremediable medical condition” – 37; 
      • Their medical condition was not in an advanced state of irreversible decline – 35; 
      • (Some people were ineligible for multiple reasons.)
    • The person became ineligible during the evaluation process (164) because: 
      • They lost capacity to give consent – 156; 
      • Their suffering was relieved such that it was no longer intolerable – 3; 
      • Other – 5.
    • The person died before the evaluation was completed – 168; 
    • The person withdrew their request or changed their mind – 167; 
    • The person died before euthanasia could be administered – 67 
    • Other / information not available – 73.
  • The authors note that the variability between different locations comes from diverse interpretations of eligibility criteria, especially “end of life” and “constant and unbearable” suffering. 
  • The Commission suggests that the fact that 51% of people who asked for euthanasia were not at the “end of life” and 30% were incapable of giving informed consent corresponds with the public’s desire to expand eligibility to these populations. Our view is that the fact that some people are excluded means the eligibility criteria are working, at least somewhat.
The application process
  • Oral requests are often not documented on the request form until the evaluation process is nearly completed. 
  • The authors say people are being discouraged from making a written request for euthanasia, and are being told, informally, that they wouldn’t be eligible. 
  • The Commission downplayed problems with delays in receiving form, and numbers of errors and incomplete forms.
The activities of the Commission
  • The report says nothing about what the Commission intends to do about the deaths of people who were deemed ineligible, or where the safeguards were not complied with
    •  In 11 cases, the person was not eligible for euthanasia; 
    • In 10 cases, the doctor didn’t talk with the person to ensure they were giving free and informed consent, and the persistence of their suffering; 
    • In 9 cases, the consulting doctor examined the person before the euthanasia request was even signed; 
    • In 5 cases the form was countersigned by someone who was not a health-care professional; 
    • In 2 cases the doctor did not ensure that the safeguards were complied with.
  • The Commission’s backlog of evaluations is glossed over. They’ve evaluated 1,498 of the 1,632 euthanasia declared (92%), leaving a backlog of 134 cases even a year later. This is especially pressing given the commission’s estimate for the number of euthanasia for the fiscal year just ended. 
  • There are references to improvements promised by the electronic reporting system. But the report skips over problems mentioned in the annual reports related to:  
    • How many forms are incomplete or have errors; 
    • How many letters and phone calls are necessary to correct or complete the forms, or to track down missing forms; 
    • Euthanasia reports that are not transmitted at all.
  • Nor is there any discussion as to how these problems will be dealt with in the future. 
  • The media coverage of the release of this summary report was a frenzy of pro-euthanasia propaganda, criticism of the number of people who are being denied their “right” to euthanasia, and calls to expand eligibility and speed up the evaluation process. We hope that our observations, our sober second thoughts, will not be completely lost in the hubbub.

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