The first annual report on medical assistance in dying (MAiD) (2019)<\/b><\/p>\n
In July of 2020, Health Canada issued the first annual <\/span>report<\/span><\/a> 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.<\/span><\/p>\n Before we talk about the substance of the report, it\u2019s important to remember that, in the 2015 <\/span>Carter<\/span><\/i><\/a> decision, the Supreme Court of Canada said that protecting vulnerable people required \u201ca carefully-designed system imposing stringent limits that are scrupulously monitored and enforced.\u201d Yet as <\/span>Alex Schadenberg<\/span><\/a> 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.\u00a0<\/span><\/p>\n Further, Health Canada has denied any responsibility to ensure compliance with the MAiD law\u2019s safeguards.\u00a0 In <\/span>the final regulation<\/span><\/a>, Health Canada says: \u201c[Monitoring] is fundamentally distinct from a process that seeks to assess individual medical or nurse practitioners\u2019 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.\u201d If Health Canada offloads compliance onto local law enforcement, how does Health Canada propose to ensure that the law is \u201cscrupulously monitored and enforced\u201d?\u00a0<\/span><\/p>\n On page 17 of the report, Health Canada says that \u201call cases of MAiD are captured.\u201d But that\u2019s not the same thing as saying that all euthanasia deaths were reported. The report doesn\u2019t include deaths by Continuous Palliative Sedation (CPS), euthanasia that doctors didn\u2019t 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. <\/span>Studies<\/span><\/a> 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.\u00a0 As well, Qu\u00e9bec\u2019s monitoring system, which has a two-track verification design, has <\/span>consistently shown<\/span><\/a> that doctors are not reporting all euthanasia procedures they perform.\u00a0 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\u2019t count all euthanasia deaths.<\/span><\/p>\n At the same time, Health Canada admits there remain \u201cdata gaps.\u201d They point out that, because an oral request can start the eligibility determination process, \u201cmany 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.\u201d 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.\u00a0 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.<\/span><\/p>\n The report uses two different figures for the number of MAiD deaths being reported, which creates some confusion. In footnote 1, Health Canada says: \u201cWhen 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).\u201d\u00a0 A clarification is provided on page 16.\u00a0 \u201c[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.\u201d 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\u2019s reporting requirements.\u00a0 This was the case for 242 people.<\/span><\/p>\n *These numbers are estimates based on the percentage of 571 people found ineligible. The report did not provide the exact figures.<\/span><\/p>\n The annual report reflects corrections and adjustments to the statistics given in the interim reports. The number of MAiD deaths has increased each year.\u00a0<\/span><\/p>\n On page 19, Health Canada explains the small number of assisted suicides by saying \u201cproviders are less comfortable with self-administration due to concerns around the ability of the patient to effectively self-administer the series of medications.\u201d They do not talk about the individual\u2019s 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.\u00a0 This is important because, according to <\/span>Statistics Canada<\/span><\/a>, intentional self harm (suicide) was the 9th leading cause of death in Canada in 2018,**<\/span> accounting for 3,811 deaths, whereas MAiD accounted for 4,467 deaths in 2018.\u00a0 But because MAiD isn\u2019t counted either as suicide or as a separate \u201ccause of death\u201d it doesn\u2019t take its place as the 9th leading cause of death in the country.\u00a0 In 2019, MAiD accounted for 2% of all Canadian deaths.<\/span><\/p>\n **The 2019 statistics are not available.<\/span><\/p>\n 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\u2019s race, ethnic background, income, indigenous status, sexual orientation, disability status, first language, or other grounds of discrimination.\u00a0 <\/span>Indigenous<\/span><\/a> and <\/span>racialized<\/span><\/a> 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 <\/span>comments<\/span><\/a> on the draft monitoring regulations. As well, though the monitoring system collects data on where euthanasia was performed, it doesn\u2019t ask about the person\u2019s living situation when the request is made.\u00a0<\/span><\/p>\n There are three \u201ccatch-all\u201d categories in the section on underlying medical conditions (4.1) that total 19.8% (or 1,067) of all cases; \u201cMultiple Comorbidities,\u201d \u201cOther Condition\u201d and \u201cOther Organ Failure.\u201d An explanatory note says that: \u201cother conditions\u201d includes \u201ca range of conditions, with frailty commonly cited.\u201d When \u201cmiscellaneous\u201d medical conditions make up 20% of cases, and include non-terminal conditions such as frailty, something smells fishy.<\/span><\/p>\n 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.\u00a0 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\u2019s needs.\u00a0 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: \u201cseem to suggest that requests for MAiD are not necessarily being driven by a lack of access to palliative care services,\u201d (p. 24) though they admit that \u201cthe data \u2026 [do] not speak to the adequacy of the services offered.\u201d<\/span><\/p>\n Without suicide prevention intervention, or effective palliative care and disability support services, a person\u2019s consent to euthanasia cannot be voluntary, capable, and free of external pressure.\u00a0<\/span><\/p>\n A few items worth noting about who provided MAiD, and where it occurred:<\/span><\/p>\n In its introduction to data on the kind of suffering reported by people asking to die (Section 6.1), Health Canada claims: \u201cIt is not the practitioner\u2019s interpretation of the intolerability of an individual\u2019s suffering; only the individual requesting MAID can determine whether their suffering is unbearable.\u201d Yet there is <\/span>ample evidence<\/span><\/a> that medical professionals\u2019 negative views of disability <\/span>do<\/span><\/i> 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.<\/span><\/p>\n \u201cNature of suffering\u201d<\/span><\/p>\n The medical practitioner is responsible for ensuring compliance with the law\u2019s safeguards; the only \u201cproof\u201d that safeguards were met is the clinician\u2019s 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?\u00a0 One telling statistic is that only 14% of practitioners based their determination of the voluntariness of the person\u2019s 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.\u00a0<\/span><\/p>\n The questions and concerns raised by this first annual report lead us to believe that Canada has not met the Supreme Court\u2019s mandate to create \u201ca carefully-designed system imposing stringent limits that are scrupulously monitored and enforced.\u201d<\/span><\/p>\n ","protected":false},"excerpt":{"rendered":"\n
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