Fourth Interim Report on Medical Assistance in Dying in Canada
Organization: Health Canada
Date Published: 2019-04
Canada’s federal legislation on medical assistance in dying was enacted on June 17, 2016. Since then, governments have been working together to support the integration and implementation of medical assistance in dying (MAID) within the Canadian health care system.
Nearly all countries that permit some form of medically assisted dying consider public reporting to be a critical component to enhance transparency and to foster public trust in the application of the law. The need for the consistent collection of information and public reporting also reflects the seriousness of MAID as an exception to the criminal laws that prohibit the intentional termination of a person’s life.
The legislation on MAID authorizes the federal Minister of Health to make regulations to support data collection and reporting on both requests for, and the provision of, MAID. While these regulations were under development, the federal government collaborated with provincial and territorial governments to produce interim reports on MAID using an agreed upon data set.
Since the implementation of the federal legislation, Health Canada has released three federal interim reports. The first interim report was released on April 26, 2017, providing information on the first six months (June 17 to December 31, 2016) of MAID under federal legislation. The second report was released on October 6, 2017 and covered the next 6-month period (January 1 to June 30, 2017) providing insight into the implementation of MAID in its first year. The third report was released on June 21, 2018 covering the 6-month period from July 1 to December 31, 2017. This fourth and final federal interim report covers a 10-month period from January 1, 2018 to October 31, 2018, which is the period just prior to the commencement of the new reporting regime in accordance with the federal Regulations for the Monitoring of Medical Assistance in Dying.
The Government of Canada acknowledges the excellent collaboration with provincial and territorial partners in producing these interim reports which have given Canadians and interested stakeholders access to important information about the law and how it is being applied across the country.
With the coming into force of the federal Regulations for the Monitoring of Medical Assistance in Dying on November 1, 2018 (described in a further section), the federal government will begin to produce annual reports starting in the spring of 2020 using the more robust MAID data set collected under the authority of these Regulations. This expanded data set will contribute to better understanding requests for MAID, insight into the circumstances under which MAID is administered, and the reasons why requests for MAID may go unfulfilled.
Methodology and limitations
As was the case for previous reports, provincial and territorial governments were asked to provide Health Canada with information on MAID that was available for their jurisdiction. The territories (Yukon, Northwest Territories and Nunavut) could not share any data for this reporting period due to small numbers and associated concerns for the privacy of the patients and the providers involved.
Under the province of Quebec’s Act Respecting end-of-life care, physicians as well as health and social services institutions in the province are required to report information on medical aid in dying to Quebec’s Commission on End-of-Life Care, which submits annual reports to Quebec’s Minister of Health and Social Services. All health and social services institutions in Quebec are required to publicly report on three specific data points: the number of requests for MAID received, the number of requests that resulted in MAID provision and the number of requests that were declined and the reasons why. Past reports produced by the Commission have had some alignment with federal interim reporting periods. However, the Commission modified its last reporting period to align reporting by health and social services institutions with a fiscal calendar. As such, there will be a gap in data for Quebec for this interim report. The Commission’s latest report (PDF: 983.83 Ko, 63 pages) (available in French only) provides data covering June 10, 2017 to March 31, 2018. Therefore, this fourth interim report does not include any MAID activity in Quebec between April 1, 2018 and October 31, 2018 (i.e., 7 months of unavailable data). This will impact comparisons of MAID data during this reporting period and will result in an under-reporting of numbers at the national-level.
Table 1 provides the number of medically assisted deaths in Canada during this reporting period when all of these limitations are considered. Table 1 also provides the total number of Canadians who have received MAID since the legislation came into force on December 10, 2015 in the province of Quebec, and on June 17, 2016 in the rest of Canada. It totals all information in the federal interim reports, taking into consideration the 7-month gap in Quebec’s available data.
|Timeframe||Total assisted deaths|
|Number of medically assisted deaths in Canada provided between January 1
and October 31, 2018 (not including Quebec, NWT, YK, and NU)
|Number of medically assisted deaths in Quebec between December 10, 2015
and March 31, 2018Footnote 1
|Total number of medically assisted deaths in Canada since legislative
enactment (between December 10, 2015 and October 31, 2018) including
available data for QuebecFootnote 2 (not including NWT, YK, and NU)
National Profile of Medical Assistance in Dying in Canada
This fourth interim report continues to highlight trends around the provision of MAID and the characteristics of Canadians who request MAID. A brief discussion of these trends can be found in the Summary of Findings section below.
For this reporting period, most provincial governments were able to provide basic demographic information on persons receiving MAID, the settings in which medically assisted deaths occurred, and the most common underlying medical condition of those receiving MAID. Table 2 presents nationally-aggregated data on these elements for all four interim reports that have been published. In instances where there were fewer than 7 cases on a particular measure, the data has been supressed to protect the privacy of the patients and providers involved.
|Reporting period||June 17 to December 31, 2016
(6 months)Footnote a
|January 1 to June 30, 2017
|July 1 to December 31, 2017
|January 1 to October 31, 2018
|Total number of medically assisted deaths||510Footnote b||875||1086||2614|
|Number of clinician-administered deaths||506||874||1086||2613|
|Number of self-administered deaths||4||1||0||1|
|Number of medically assisted deaths by clinicianFootnote c|
|Physician||N/A||837 (96%)||1031 (95%)||2421 (93%)|
|Nurse Practitioner||N/A||38 (4%)||55 (5%)||193 (7%)|
|Settings in which MAID occurredFootnote c:|
|Hospital||249 (50%)||368 (42%)||440 (41%)||1148 (44%)|
|Patient’s home||182 (37%)||350 (40%)||470 (43%)||1107 (42%)|
|Long-term care facility or nursing home||30 (6%)||78 (9%)||58 (5%)||140 (5%)|
|Hospice||Footnote d||Footnote d||32 (3%)||103 (4%)|
|Other Footnote e/UnknownFootnote f||37 (7%)||79 (9%)||86 (8%)||114 (4%)|
|Age range of persons receiving MAIDFootnote c:|
|18-45||N/A||18 (2%)||16 (1%)||49 (2%)|
|46-55||N/A||39 (4%)||51 (5%)||140 (5%)|
|56-64||N/A||150 (17%)||159 (15%)||362 (14%)|
|65-70||N/A||144 (16%)||171 (16%)||406 (16%)|
|71-75||N/A||124 (14%)||144 (13%)||401 (15%)|
|76-80||N/A||119 (14%)||156 (14%)||351 (13%)|
|81-85||N/A||102 (12%)||145 (13%)||324 (12%)|
|86-90||N/A||88 (10%)||135 (12%)||305 (12%)|
|91+||N/A||68 (8%)||76 (7%)||265 (10%)|
|UnknownFootnote f||-||23 (3%)||32 (3%)||11 (less than 1%)|
|Average age of persons receiving MAID:||72||73||73||72|
|Proportion of men and womenFootnote c:||49% Men
|Proportion of persons receiving MAID in large urban centresFootnote g versus smaller population centresFootnote c||66% Large centres
34% Smaller centres
|57% Large centres
43% Smaller centres
|56% Large centres
42% Smaller centres
3% UnknownFootnote f
|56% Large centres
44% Smaller centres
|Most common underlying medical circumstances of those who received MAIDFootnote c:|
|Other causes/UnknownFootnote f||10%||7%||9%||9%|
Requests for Medical Assistance in Dying
There are a number of data points that, if collected, could contribute to a better understanding of the circumstances surrounding and the outcomes of a request for MAID. Previous interim reports have included information on: the number of requests received for MAID and the number of requests that were declined, withdrawn or unfulfilled.
Only a few provinces (Alberta, Manitoba, Saskatchewan, QuebecFootnote 1 and some Atlantic provinces) are collecting this information about requests for MAID. For those that have, this information can be found in the Provincial Profiles found in Tables 3a) and 3b). Quebec’s Commission on End-of-Life Care also reported on these data points, which can be found in its latest report.
While this additional data about MAID requests provided to Health Canada is a relatively small sampling upon which to base any solid analysis, it shows that, in these provinces, the most commonly cited reasons a MAID request was declined were ‘loss of competency’ and that ‘death was not reasonably foreseeable’.
With the implementation of the new federal monitoring and reporting regime for MAID, practitioners must now report on a number of possible outcomes following the receipt of a written request for MAID. Those reportable outcomes include where:
- a practitioner administers MAID
- a practitioner prescribes or provides a substance for self-administration of MAID by the patient
- the written request is referred to another practitioner or care coordination service, or the care of the patient is transferred to another practitioner as a result of a written request
- the patient was assessed and found ineligible
- the request is withdrawn by the patient
- the patient dies of a cause other than MAID
This addition to the MAID data set will play a vital role in understanding more about Canadians’ access to MAID and the pathways of a MAID request.
Summary of Findings
Excluding Quebec, the Northwest Territories, Yukon and Nunavut, 2,614 Canadians received MAID between January 1 and October 31, 2018. To note, the reporting cycle for this interim report extends for a period of 10 months, which is longer than the 6-month period used in the past. In light of the introduction of the new federal monitoring regime for MAID on November 1, 2018, Health Canada decided to issue one final interim report which would close the interim reporting period without gaps. The additional months, however, must be considered when comparing the data across interim reporting periods.
As shown in Table 1, based on the available data, at least 6,749 Canadians have received MAID since both Quebec’s law and the federal legislation came into force.
Using Statistics Canada’s available data for deaths per month in 2017Footnote 2, and projecting a 2% average annual increase in overall deaths (based on data trends from 2013 to 2017), we estimate that for the first 10 months of 2018, MAID has accounted for approximately 1.12% of the estimated total deaths in Canada during this reporting period. This means that Canada’s percentage of medically assisted deaths (as a proportion of total deaths) increased only slightly since the last reporting periodFootnote 3. The percentage of deaths due to MAID in Canada also continues to remain within the percentage of medically assisted deaths provided in other countries where 0.4% (Oregon, USA, 2017)Footnote 4 to 4% (Netherlands, 2017)Footnote 5 of total deaths has been attributed to a medically assisted death.
In the same vein, across most data elements, findings remain largely consistent with previous reports:
- MAID was largely provided by physicians (93%), while 7% of medically assisted deaths were provided by nurse practitioners (a 2% increase in nurse practitioner involvement over last period). British Columbia, Alberta, Ontario and the Atlantic region reported MAID provision by nurse practitioners in their jurisdictions. It is important to note that Quebec’s legislation only permits physicians to provide MAID.
- The settings for the provision of MAID continue to be primarily divided between a hospital (44%) and a patient’s home (42%). There were no significant increases for any other reported settings.
- The ages at which the majority of Canadians receive MAID remains between 56 and 90 years old. The average age of persons receiving MAID dropped slightly from 73 years old, as reported in the previous two periods, to 72 years old.
- To further explore the impact of age, analysis was undertaken to compare the age groups presented in Table 2 (excluding Quebec, NWT, NU and YK) to the total number of deaths in Canada for similar age groups.Footnote 6 Findings showed that MAID occurred more often between the ages of 55 and 80; however, the percentage of MAID deaths remained at around 1% of the total deaths in those age groups. To note, nearly 2% of deaths in the age group 65-70 were by MAID – 1% higher than the overall national rate.
- MAID is administered more frequently in larger urban centres (56%) compared to centres with smaller populations (i.e. less than 100,000) (44%), similar to previous reports.
- The proportion of men versus women receiving MAID is still nearly equally divided with only slightly more men (51%) being recipients of MAID than women (49%).
- Cancer-related illness is the most frequently cited underlying conditions associated with those receiving MAID; however the proportion of cancer-related cases did not increase compared to previous reports. In fact, the proportion of cases related to the other conditions that were counted (i.e., neurodegenerative, circulatory, or respiratory) also remained relatively stable.
During this reporting period, only one case of self-administration of MAID was reported. Based on data from all four interim reports, 6 cases of self-administered MAID have been reported in Canada. It is important to reiterate that Quebec’s legislation on end-of-life care only permits clinician-administered MAID. As noted in previous reports, anecdotally, health practitioners seem to be less comfortable with this form of MAID due to concerns around the ability of the patient to effectively self-administer the series of available medications, and the complications that may arise. Some jurisdictions require the medical practitioner to be present during self-administration of MAID. According to the Canadian Association of MAID Assessors and Providers (CAMAP), however, most jurisdictions indicate they have developed oral medication protocols for self-administration of MAIDFootnote 7.
Tables 3a and 3b that follow provide provincial breakdowns on a number of elements (where available) used in the national roll-up (Table 2). Where there are fewer than 7 instances reported in a province on any one data element, the data has been suppressed to protect the privacy of patients and providers involved in MAID. However, these numbers were included in the national roll-up wherever possible.
|Number of contacts or inquiries about MAID||N/A||737||148Footnote a|
|Number of requests for MAID||N/A||407Footnote b||172|
|Number of requests for MAID that have been declined||N/A||8||24|
|Number of requests that were withdrawn by the individual||N/A||21||27|
|Number of cases where the person died prior to the completion of the assessment||N/A||77||36|
|Total number of medically assisted deaths||773||252||67|
|Number of medically assisted deaths by settingsFootnote c||243 (31%) Hospital
354 (46%) Patient’s home
69 (9%) LTC/nursing homeFootnote e
77 (10%) Hospice
26 (3%) Clinician Office
(Less than 7) OtherFootnote d
|90 (36%) Hospital
100 (40%) Patient’s home
25 (10%) LTC
16 (6%) Hospice
21 (8%) OtherFootnote d
|50 (75%) Hospital
14 (21%) Patient’s home
(Less than 7) OtherFootnote d
|Average age of persons who received MAID||76||72||71|
|Age range of persons who received MAIDFootnote fFootnote c||Age
|18-45||12||18-45||Less than 7||18-55||Less than 7|
|81-85||100||81-85||26||86-90||Less than 7|
|86-90||81||86-90||27||91+||Less than 7|
|Number of men/women who received MAIDFootnote c||396 (51%) Male
377 (49%) Female
|131 (52%) Male
121 (48%) Female
|30 (45%) Male
37 (55%) Female
|Number of people who received MAID in large urban centres Footnote g versus smaller population centresFootnote c||380 (49%) Large centresFootnote h
393 (51%) Smaller centres
|144 (57%) Large centres
108 (43%) Smaller centres
|35 (52%) Large centres
32 (48%) Smaller centres
|Most common reported underlying medical condition of people who received MAIDFootnote c||480 (62%) Cancer-related
86 (11%) Neurodegenerative
79 (10%) Cardiovascular
54 (7%) Respiratory
74 (10%) Other causesFootnote i
|174 (69%) Cancer-related
24 (10%) Neurodegenerative
15 (6%) Cardiovascular
22 (9%) Respiratory
17 (7%) Other causesFootnote i
|46 (69%) Cancer-related
7 (10%) Neurodegenerative
(less than 7) Cardiovascular
(less than 7) Respiratory
(less than 7) Other causesFootnote i
(NL, PEI, NS, NB)
|Number of contacts or inquiries about MAID||370||N/A||68|
|Numberof requests for MAID||198||N/A||223|
|Number of requests for MAID that have been declined||20Footnote a||N/A||Less than 7|
|Number of requests withdrawn by the individual||5||N/A||Less than 7|
|Number of cases where the person died prior to the completion of the assessment||57||N/A||30|
|Total number of medically assisted deaths||116||1211||195|
|Number of medically assisted deaths by settingsFootnote b||64 (55%) Hospital
46 (40%) Patient’s home
(Less than 7) LTC
(Less than 7) Hospice
|579 (48%) Hospital
528 (44%) Patient’s home
33 (3%) LTC
8 (1%) Hospice
62 (5%) OtherFootnote c
|122 (63%) Hospital
65 (33%) Patient’s home
(Less than 7) LTC/nursing homeFootnote e
(Less than 7) Hospice
(Less than 7) OtherFootnote c
|Average age of persons who received MAID||72||75||68|
|Age range of persons who received MAIDFootnote fFootnote b||Age
|18-55||Less than 7||18-24||0||18-45||Less than 7|
|-||-||81-85||158||91+||Less than 10|
|Number of men/women who received MAID||64 (55%) Male
52 (45%) Female
|608 (50.2%) Male
603 (49.8%) Female
|111 (57%) Male
84 (43%) Female
|Number of people who received MAID in large urban centres Footnote g versus smaller population centresFootnote b||76 (66%) Large centres
40 (34%) Smaller centres
|726 (60%) Large centres
485 (40%) Smaller centres
|97 (49.7%) Large centres
98 (50.3%) Smaller centres
|Most common reported underlying medical condition of people who received MAIDFootnote b||83 (72%) Cancer-related
9 (8%) Neurodegenerative
14 (12%) Cardiovascular
3 (3%) Respiratory
7 (6%) Other causesFootnote h
|768 (63%) Cancer-related
121 (10%) Neurodegenerative
114 (9%) Cardiovascular
101 (8%) Respiratory
107 (9%) Other causesFootnote h
|128 (66%) Cancer-related
29 (25%) Neurodegenerative
(Less than 10) Cardiovascular
(Less than 10) Respiratory
21 (11%) Other causesFootnote h
Implementation of a Federal Monitoring and Reporting System for MAID
On August 8, 2018, the Government of Canada published final regulations in Canada Gazette, Part II for the implementation of a federal monitoring and reporting system for MAID.
The Regulations for the Monitoring of Medical Assistance in Dying set out reporting requirements for physicians and nurse practitioners who receive written requests for MAID, and for pharmacists who dispense drugs for MAID. The Regulations also establish the conditions for collecting and analyzing data, monitoring trends, and providing public annual reports with nationally aggregated information to Canadians.
The Regulations came into force on November 1, 2018 and Health Canada has been working with provinces and territories, as well as physicians, nurse practitioners and pharmacists to support reporting through this new system. Prior to coming into force, Health Canada engaged with key stakeholders and governments to provide technical briefing sessions on the Regulations and the reporting obligations. These well-attended sessions allowed federal officials to provide clarifications and develop appropriate guidance materials. Since coming into force, jurisdictions have been working hard to bring their MAID policies in alignment with the requirements in the federal Regulations with respect to reporting
Reporting to the federal government can occur in two ways, directly to Health Canada through a federal online portal (the Canadian MAID Data Collection Portal), or to a designated body within certain provinces or territories. Those provinces/territories with a designated body have established an agreement with Health Canada on how and when MAID reports will be submitted to the federal Minister of Health, in accordance with the Regulations. Those provinces/territories that have a designated body to collect MAID reports are: British Columbia, Alberta, Saskatchewan, Nunavut, Northwest Territories, Quebec and OntarioFootnote 8.
Physicians, nurse practitioners and pharmacists from all other jurisdictions (i.e. Newfoundland & Labrador, Nova Scotia, Prince Edward Island, New Brunswick, Manitoba, Yukon and Ontario) are required to report directly to Health Canada through the Canadian MAID Data Collection Portal. The Portal was developed in partnership with Statistics Canada to provide practitioners and pharmacists with a secure, online reporting tool. Health Canada has produced online guidance materials for respondents and manages a MAID Reports support line (phone/email) to assist respondents with questions on completing reports.
The data collected under this new federal monitoring and reporting system will provide a more complete picture of who is requesting and receiving MAID. This system will enable Canada to align with the standard of public reporting seen in other countries where some form of medically assisted dying is available. In addition, collecting more robust, nationally comparable data will create a base of evidence that will inform ongoing discussions about the delivery of MAID.
Once a critical mass of data is collected, it will be made available to qualified researchers upon request, to support independent research and analysis on end-of-life care in Canada. The federal government’s monitoring activities, which include the collection, reporting, and sharing of data, are subject to applicable federal legislation and policies that relate to privacy and protection of personal information.
Current landscape of MAID in Canada
As a new option, and a highly sensitive issue, MAID has continued to feature prominently in the ever-growing public dialogue about end-of-life care decision-making. Over the last year, many Canadians and/or their families have come forward to share their stories about making a decision to seek MAID, offering advice to others, as well as expressing opinions about the application of the law’s criteria and safeguards by health practitioners and health institutions.
The federal government’s legislation for MAID provides the framework for the provision of MAID without criminal liability for those medical practitioners, nurse practitioners and pharmacists involved in its delivery. However, provinces and territories as well as health care institutions determine how best to deliver health care services, including MAID, to meet the needs of their residents. Provinces and territories are permitted to create health-related policies on how and where MAID is provided, in so far as those policies are consistent with the federal legislation.
During the debates on Bill C-14 (which became the MAID legislation), Parliamentarians recognized that there were three complex and sensitive circumstances of MAID requests which required further review and analysis. As a result, the federal legislation required the federal Ministers of Health and Justice to initiate independent reviews on three specific types of requests for MAID which fall outside the scope of the law. These were:
- requests by mature minors;
- advance requests for MAID; and
- requests where a mental disorder is the sole underlying medical condition.
In December 2016, the Council of Canadian Academies (CCA) was tasked to conduct these independent reviews. The CCA established a multidisciplinary panel of 43 experts who reviewed an extensive body of evidence, including Canadian and international academic and policy research; written submissions from organizations affected by, or involved in, MAID; and discussions with Indigenous Elders. The CCA completed its reviews producing three thorough and thoughtful reports, which were tabled in Parliament and publicly released in December 2018.
The evidence in the reports, along with the knowledge being acquired through the data collected under the new federal monitoring and reporting regime, will serve as a basis for ongoing public and policy dialogue about MAID in Canada.
The MAID legislation requires its provisions to be referred to one or more Parliamentary committees for review at the start of the 5th year after the legislation came into force (June 2016), which will be June 2020. Parliamentarians may be expected to consider the CCA reports in the context of such a review.
Under the federal Regulations for the Monitoring of Medical Assistance in Dying, the federal government is now receiving more consistent and robust MAID data from across the country. This data will be presented in the first report to be released by the federal government using the information collected under the new monitoring system. The report is anticipated to be released in the spring of 2020, once a full year of data has been collected.
- Footnote 1
Quebec’s health and social service institutions and the Collège des médecins du Québec are required to publicly report on the number of requests for medical aid in dying, as well as on requests that were not completed and the reasons why.
- Footnote 2
- Footnote 3
Source: The 3rd Interim Report on MAID reported that medically assisted deaths accounted for approximately 1.07% of total deaths in Canada during the reporting period.
- Footnote 4
- Footnote 5
- Footnote 6
Source: Statistics Canada. Table 13-10-0710-01 Deaths and mortality rates, by age group. Used to calculate total deaths in Canada in 2017 by age groups for all provinces except Quebec, Northwest Territories, Nunavut and Yukon. Note age group distributions were not identical to those reported in the 2017 federal interim reports but were similar.
- Footnote 7
- Footnote 8
Ontario has a hybrid model of MAID reporting.
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