Analysis of Canada's 2019 MAiD Annual Report

This article was published by Toujours Vivant - Not Dead Yet on Sept 8, 2020.

By Amy Hasbrouck, Director Toujours Vivant - Not Dead Yet.

Does the MAiD Program shown in the first annual report meet the Supreme Court’s requirements?

In July of 2020, Health Canada issued the first annual report on Medical Assistance in Dying (MAiD) using data drawn from the monitoring system that went into effect in November of 2018. The report covers MAiD provided throughout Canada during the 2019 calendar year.

Before we talk about the substance of the report, it’s important to remember that, in the 2015 Carter decision, the Supreme Court of Canada said that protecting vulnerable people required “a carefully-designed system imposing stringent limits that are scrupulously monitored and enforced.” Yet as Alex Schadenberg of the Euthanasia Prevention Coalition has pointed out, the law has no method for families to appeal a determination of eligibility they believe is wrong.

• Canada's MAiD report: 26% increase in 2019 euthanasia deaths. The hidden story of abuse (Link).
  

Further, Health Canada has denied any responsibility to ensure compliance with the MAiD law’s safeguards. In the final regulation, Health Canada says: “[Monitoring] is fundamentally distinct from a process that seeks to assess individual medical or nurse practitioners’ compliance with the Criminal Code exemptions. Investigating instances of non-compliance with the eligibility criteria and procedural safeguards set out in the Criminal Code falls outside of the scope of the federal monitoring regime, and is under the purview of local law enforcement.” If Health Canada offloads compliance onto local law enforcement, how does Health Canada propose to ensure that the law is “scrupulously monitored and enforced”?

On page 17 of the report, Health Canada says that “all cases of MAiD are captured.” But that’s not the same thing as saying that all euthanasia deaths were reported. The report doesn’t include deaths by Continuous Palliative Sedation (CPS), euthanasia that doctors didn’t declare, or other life-ending acts without explicit request. There are no eligibility criteria, approval process or safeguards to be met for continuous palliative sedation. Studies in jurisdictions where euthanasia is legal which traced the cause of all deaths during a certain period of time have found that many euthanasia deaths were not reported, even when the doctors knew they were performing euthanasia. As well, Québec’s monitoring system, which has a two-track verification design, has consistently shown that doctors are not reporting all euthanasia procedures they perform. Nor does Health Canada discuss how many reports contained incomplete or inaccurate information, or how these were corrected. Thus, Health Canada may have reported all the MAiD declarations they received, but they didn’t count all euthanasia deaths.

At the same time, Health Canada admits there remain “data gaps.” They point out that, because an oral request can start the eligibility determination process, “many assessments for MAID are taking place with the written request only being completed once a finding of eligibility has been determined or a date for MAID has been established.” Thus the number of written requests reported in 2019 (7,336) is probably substantially lower than the real number of people who asked for euthanasia, because those who are determined ineligible upon making an oral request are not counted by the monitoring system. As well, not all requests that pass through MAiD case coordination or referral systems are captured because some employees of such services are not required to file MAiD reports. Nor does Health Canada document the role of euthanasia advocacy groups in facilitating MAiD approvals and procedures.

The report uses two different figures for the number of MAiD deaths being reported, which creates some confusion. In footnote 1, Health Canada says: “When all data sources are considered, there were a total of 5,631 MAID deaths in Canada in 2019. This includes 242 MAID deaths that were reported voluntarily by the provinces and territories. The detailed analysis on requests for MAID (7,336 written requests), and cases of MAID (5,389 provisions), are available only for the reports collected through the federal monitoring system (for requests received on or after November 1, 2018).” A clarification is provided on page 16. “[A]ggregate data for MAID deaths in 2019 is based on two data elements: MAID provisions in 2019 resulting from a written request prior to November 1, 2018, and data collected under the Regulations for the period January 1, 2019 to December 31, 2019.” So if a person asked to die before November 1, 2018, and was euthanized after January 1, 2019, their death was counted in 2019, but was not subject to the new monitoring system’s reporting requirements. This was the case for 242 people.

Of the 7,336 written requests for MAiD in 2019, 1,947 (26.5%) did not result in euthanasia.

• 1,113 (15.2%) died before approval or euthanasia 
• 571 (7.8%) were deemed ineligible due to:
  
  • lack of capacity – 184* (32.2%),  
  • natural death was not reasonably foreseeable – 159 (27.8%),  
  • not in an advanced state of irreversible decline – 134 (23.5%)
    

• 263 (3.6%) requests were withdrawn.

There were 5,631 MAiD deaths in 2019 (including 242 requested before November 1, 2018)

• Accounted for 2% of all deaths in Canada (ranging from .3% of deaths in NL to 3.3% in BC) 
• All but a handful (< 7) were by euthanasia.  
• Total since 2016 = 13,946
  

*These numbers are estimates based on the percentage of 571 people found ineligible. The report did not provide the exact figures.

The annual report reflects corrections and adjustments to the statistics given in the interim reports. The number of MAiD deaths has increased each year.

• 1,015 in 2016 
• 2,833 in 2017
• 4,467 in 2018 = 58% increase over previous year,
• 5,631 in 2019 = 26% increase over previous year.
  

On page 19, Health Canada explains the small number of assisted suicides by saying “providers are less comfortable with self-administration due to concerns around the ability of the patient to effectively self-administer the series of medications.” They do not talk about the individual’s choice, nor the apparent conflict between the idea of MAiD as a form of self-determination, and the small number who choose the more autonomous option of assisted suicide. This is important because, according to Statistics Canada, intentional self harm (suicide) was the 9th leading cause of death in Canada in 2018,** accounting for 3,811 deaths, whereas MAiD accounted for 4,467 deaths in 2018. But because MAiD isn’t counted either as suicide or as a separate “cause of death” it doesn’t take its place as the 9th leading cause of death in the country. In 2019, MAiD accounted for 2% of all Canadian deaths.

**The 2019 statistics are not available.

The monitoring system did not collect crucial demographic information that would show the impact of discrimination, economic and social pressures on requests to die. Health Canada is not tracking information about the person’s race, ethnic background, income, indigenous status, sexual orientation, disability status, first language, or other grounds of discrimination. Indigenous and racialized Canadians have been calling for accurate data collection to document racism in the health care system for decades, and we raised the issue in our comments on the draft monitoring regulations. As well, though the monitoring system collects data on where euthanasia was performed, it doesn’t ask about the person’s living situation when the request is made.

There are three “catch-all” categories in the section on underlying medical conditions (4.1) that total 19.8% (or 1,067) of all cases; “Multiple Comorbidities,” “Other Condition” and “Other Organ Failure.” An explanatory note says that: “other conditions” includes “a range of conditions, with frailty commonly cited.” When “miscellaneous” medical conditions make up 20% of cases, and include non-terminal conditions such as frailty, something smells fishy.

As we observed in our comments on the draft regulations, the monitoring system does not collect data on whether suicide prevention services were provided in response to requests for MAiD. The data in Section 4.3 regarding palliative care and disability support services gives no indication what services were provided, or whether the services met the person’s needs. Health Canada reports that 82% of people received palliative care, and 89% of those who needed them received disability support services. The authors conclude these findings: “seem to suggest that requests for MAiD are not necessarily being driven by a lack of access to palliative care services,” (p. 24) though they admit that “the data … [do] not speak to the adequacy of the services offered.”

Without suicide prevention intervention, or effective palliative care and disability support services, a person’s consent to euthanasia cannot be voluntary, capable, and free of external pressure.

A few items worth noting about who provided MAiD, and where it occurred:

• The monitoring system doesn’t record the medical specialty of the practitioner who provides the written second opinion. 
• While 20.6% of euthanasia were performed in “palliative care facilities” (p. 27) only 9% of MAiD practitioners were palliative care specialists. 
• As Richard Egan pointed out in his analysis of the Canada report, “Despite two thirds of cases with cancer as the underlying condition, only 1.7% of clinicians administering euthanasia gave their specialty as oncology.” 
• Mr. Egan also notes that even though euthanasia is not allowed for psychiatric conditions, 1.2% of euthanasia were administered by psychiatrists.
  

In its introduction to data on the kind of suffering reported by people asking to die (Section 6.1), Health Canada claims: “It is not the practitioner’s interpretation of the intolerability of an individual’s suffering; only the individual requesting MAID can determine whether their suffering is unbearable.” Yet there is ample evidence that medical professionals’ negative views of disability do affect how people value their disabled lives. This is why peer support is so essential to adapting to aging, chronic and degenerative illness and disability.

“Nature of suffering”

• Loss of ability to engage in meaningful life activities – 82% 
• Loss of ability to perform activities of daily living – 78% 
• Inadequate control of symptoms other than pain (or concern about it) – 56%  
• Inadequate control of pain (or concern about it) – 54%  
• Loss of dignity – 53%  
• Perceived burden on family, friends or caregivers – 34%  
• Loss of control of bodily functions – 32%  
• Isolation or loneliness – 14%  
• Emotional distress/anxiety/fear/existential suffering – 5% 
• Loss of control/autonomy/independence – 4% 
• No/poor/loss of quality of life – 3%
  

The medical practitioner is responsible for ensuring compliance with the law’s safeguards; the only “proof” that safeguards were met is the clinician’s opinion and assurance to that effect. Of course, nearly all clinicians said they asked the person what they wanted, but did that conversation take place privately, away from the influence of family or others who might sway the decision? One telling statistic is that only 14% of practitioners based their determination of the voluntariness of the person’s request on prior knowledge of the person. This suggests that few providers had the deeper knowledge that comes of long-standing relationships with the people they were assessing for eligibility to die.

The questions and concerns raised by this first annual report lead us to believe that Canada has not met the Supreme Court’s mandate to create “a carefully-designed system imposing stringent limits that are scrupulously monitored and enforced.” 

Amy Hasbrouck is the President of the Euthanasia Prevention Coalition