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Introduction

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 within the Canadian health care system. Many provinces and territories have put in place coordination systems or interprofessional care teams to help individuals seeking information on and assessments for medically assisted dying. Some Canadian jurisdictions have also made legislative and system-level policy changes to further integrate assisted dying as a part of the range of end-of-life care services available to Canadians. The federal government has also contributed to making current information about medical assistance in dying readily available to Canadians through its directory of national and provincial/territorial contacts on its Canada.ca Medical Assistance in Dying web pages.

In virtually all countries that permit some form of assisted dying, public reporting is considered to be a critical component of providing transparency and fostering public trust in the application of the law. The need for public reporting also reflects the seriousness of medical assistance in dying as an exception to the criminal laws that prohibit the intentional termination of a person’s life.

The federal legislation on medical assistance in dying authorizes the Minister of Health to make regulations to support data collection and reporting on requests for, and the provision of medical assistance in dying. Health Canada expects to have these regulations in place in the fall of 2018. More information about the implementation of the permanent federal monitoring and reporting system for medical assistance in dying is provided later in this report.

Until a permanent system is in place, federal, provincial and territorial governments have been working together to produce interim updates using available data. The first update was released on April 26, 2017, providing information on the first six months (June 17 to December 31, 2016) of medical assistance in dying under federal legislation. The second update was released on October 6, 2017 and covered the next six-month period (January 1 to June 30, 2017) providing insight into the implementation of medical assistance in dying in its first year. The data provided in this report, covering the period from July 1 to December 31, 2017, offers the most comprehensive profile of medical assistance in dying in Canada to-date.

Implementation of medical assistance in dying

While the federal legislation sets out a consistent framework under which medical assistance in dying is accessible to Canadians, it is provincial and territorial governments that are responsible for the management and delivery of health care services and for law enforcement, generally. Jurisdictions continue to implement legislative changes or policies related to the delivery and oversight of medical assistance in dying across the country.

To increase awareness among practitioners and improve service delivery, a number of jurisdictions are offering education and training programs on medical assistance in dying for practitioners. For example, Ontario is supporting the implementation of in-person and online sessions of an Advanced Course on Medical Assistance in Dying delivered by Joule, a subsidiary of the Canadian Medical Association (CMA). British Columbia is supporting access to training for physicians in rural communities by implementing the Medical Assistance in Dying Travel and Training Assistance Program. This program provides health authorities with funding to support the delivery of medically assisted dying services in rural communities. Newfoundland and Labrador is also implementing a provincial training initiative for each of its Regional Health Authorities. For registered nurses and nurse practitioners, the Canadian Nurses Association has recently introduced an online education module on Medical Assistance in Dying: What Nurses Need to Know.

In 2017, the Canadian Association of MAID Assessors and Providers (CAMAP) was established to offer peer support, research and advocacy for all professionals involved in medical assistance in dying, as well as for patients and families. CAMAP’s website provides a library of resources. In addition, CAMAP holds annual conferences to share information and engage in discussions about emerging challenges and interpretations of the legislation on medical assistance in dying.

Media reports have also highlighted various challenges encountered in obtaining medical assistance in dying. Some of these reported challenges include: securing access for those living in communities with insufficient providers and/or with limited access to care coordination services; patients seeking this service in faith-based institutions; and situations where providers exercise their conscience rights by refusing involvement in assisted dying. In some jurisdictions, particularly in Ontario, measures have been taken to facilitate access by requiring practitioners who conscientiously object to providing a health service, including medical assistance in dying, to provide an effective referralFootnote 1 for their patients.

The federal legislation clearly states that no individual can be compelled to provide or assist in providing medical assistance in dying. The law does not, however, define where assisted dying should be provided. Provinces and territories as well as health care institutions determine how best to deliver health care services to meet the needs of their residents. They are able to create health-related policies on how and where medical assistance in dying is provided, in so far as those policies are consistent with the federal legislation. It is expected that how this service is organized, delivered, and monitored will evolve as more data becomes available to support the evaluation of existing policies and service delivery models.

Methodology and parameters

As was the case for previous reports, provincial governments provided Health Canada with information available in their jurisdiction on medical assistance in dying. 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 patients and providers involved.

Under the province of Quebec’s Act Respecting end-of-life care, physicians and 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. The Commission is required to submit annual reports to Quebec’s Minister of Health and Social Services. Additionally, all health and social services institutions in Quebec are required to publicly report on three specific data points: the number of requests for medical aid in dying received, the number of requests completed and the number that were declined (including reasons why). In this report, Quebec’s data for the period of July 1 to December 31, 2017 was compiled from available public reports posted on the websites of individual health and social services institutionsFootnote 2 in the province, as well as the Collège des médecins du QuébecFootnote 3. While these public reports do not represent an official record of the Government of QuébecFootnote 4, they do provide a reliable source of data.

Table 1 provides the number of medically assisted deaths in Canada during this reporting period when all of these parameters are considered. Table 1 also provides the total number of Canadians who have received medical assistance in dying since legislation came into force on December 10, 2015 in the province of Quebec, and on June 17, 2016 in the rest of Canada.

Table 1. Number of Medically Assisted Deaths in Canada Footnote 1 Timeframe Total assisted deaths Footnote 1 Due to small numbers and associated privacy concerns, data from the Yukon, Northwest Territories, and Nunavut was not included. Return to footnote 1 referrer Footnote 2 Number includes data compiled from publicly available reports posted on the websites of Quebec’s health and social services institutions and the Collège des médecins du Québec, but does not represent official numbers from the Government of Quebec. Return to footnote 2 referrer Footnote 3 Number includes provincial data (excluding official numbers from Quebec) as reported in past federal interim reports and the number of medically assisted deaths in Quebec as reported by Quebec’s Commission on End-of-Life Care for the period between December 10, 2015 and June 9, 2017. This number also includes two cases that were initially unreported in Ontario during the production of the first interim report. Return to footnote 3 referrer Medically assisted deaths provided between July 1 and December 31, 2017 1,525 Footnote 2 Total number of medically assisted deaths in Canada since enactment (between December 10, 2015 and December 31, 2017) 3,714 Footnote 3

Towards a Profile of Medical Assistance in Dying in Canada

This third interim report provides further insight into the profile of medically assisted deaths and the characteristics of those Canadians who choose medical assistance in dying. A brief discussion on this topic can be found in the Summary of Findings section below.

National Profile of Medical Assistance in Dying

For this reporting period, most provincial governments were able to provide basic demographic information on persons receiving medical assistance in dying, the settings in which medically assisted deaths occurred, and the most common underlying medical condition of those receiving medical assistance in dying. Table 2 presents nationally-aggregated data on these elements. In instances where there were fewer than seven cases on a particular measure, the data has been suppressed to protect the privacy of the patients and providers involved.

Requests for Medical Assistance in Dying

In addition to the core data elements presented in Table 2, Alberta, Saskatchewan, Manitoba, Quebec (as required under its provincial legislation), and some of the Atlantic provinces were able to provide additional details about the number of requests for medical assistance in dying, and the number of requests that were declined, withdrawn or unfulfilled. There is a growing interest in better understanding those instances where medical assistance in dying was provided, as well as where it was not provided, as it may offer insight into the medical circumstances of those requesting this service across Canada.

Table 3 provides a profile of requests for medically assisted deaths where comparable measures exist. Due to the variations in the collection of data in these provinces, the number of requests declined and those that were withdrawn are not presented numerically in Table 3. However, they are provided in the Provincial Profiles found in Tables 4a and 4b (where available) and are broadly discussed in the Summary of Findings.

Table 3. Profile of Requests for Medically Assisted Deaths in Select Provinces (AB, SK, MB, QC, NL, PEI, NS) Profile of Requests January 1 to June 30, 2017 July 1 to December 31, 2017 Footnote 1 This data point does not include information from the province of Quebec. While the public reports issued by Quebec’s health and social service institutions and the Collège des médecins du Québec provide data on the reasons why requests for medical aid in dying were declined, they are not easily categorized according to the criteria in the federal legislation and have not been accounted for in this data element. Return to footnote a referrer Total number of requests for medical assistance in dying reported in these provinces 832 1,066 Most frequently cited reasons for why requests for medical assistance in dying have been declined (in order of frequency) Footnote a Loss of competency Death not reasonably foreseeable Other Loss of competency Death not reasonably foreseeable Other Number of cases where the individual died prior to the completion of the assessment process 202 (24%) 149 (14%)

Summary of Findings

As has been the trend in previous reports, the number of medically assisted deaths in Canada has increased over the most recent reporting period. Between July 1 and December 31, 2017, 1,525Footnote 5 Canadians receiving medical assistance in dying, an increase of 29.3% since the last reporting period. As shown in Table 1, based on currently available data, 3,714 Canadians have received medical assistance in dying since both Quebec’s law and the federal legislation came into force.

Using Statistics Canada’s available projections of deaths in CanadaFootnote 6, medically assisted deaths accounted for approximately 1.07% of total deaths in Canada during this reporting period. As mentioned in previous interim reports, Canada’s percentage of medically assisted deaths remains consistent with that of other international assisted dying regimes where between 0.3% to 4%Footnote 7 of total deaths have been attributed to assisted death.

Medically assisted death was largely administered by physicians, with only British Columbia, Alberta and Ontario reporting that nurse practitioners in their jurisdictions have provided this service. Of note, Quebec’s legislation only permits physicians to provide medical aid in dying. Nurse practitioners provided medical assistance in dying in 5% of all cases reported during this period, representing a 45% increase since the last interim report.

In 2016Footnote 8, the Netherlands reported that 80.5% of its assisted deaths occurred at home. In Canada, the setting for the provision of assisted dying continues to be primarily divided between a hospital (40.5% of all assisted deaths) and a patient’s home (43.3%), followed by other settings such as long-term care or assisted living facilities. Provision at a patient’s home seems to be increasing slightly over provision in a hospital setting. British Columbia continues to have a higher provision of assisted dying in a home setting than other reporting provinces. Past studies have indicated that a majority of Canadians prefer to die at home rather than in hospital. However, provider preference and availability, and the suitability of the home setting, could be some of the factors limiting access to home-based medically assisted dying.

During this reporting period, no cases of self-administration of medical assistance in dying took place. This option for a self-administered medically assisted death remains less prevalent than that of clinician-administration. Anecdotally, this may be a result of patient or clinician preferences, policies established around this type of assisted dying in some jurisdictions, or the availability of clinical protocols to guide the use of effective drugs. Furthermore, self-administration is not a type of assisted dying that is permitted under Quebec’s legislation on end-of-life care.

In line with past interim reports, the ages at which the majority of Canadians receive assistance in dying remains between 56 and 90 years old. The average age of persons for whom medical assistance in dying was provided was approximately 73 years old.

There were a greater number of cases of medical assistance in dying in larger urban centres (55.9%) versus centres with smaller populations (i.e. less than 100,000) (41.6%), similar to previous reports. As in previous reports, those receiving assisted deaths were almost equally divided among men (49%) and women (51%). While this data may suggest that there is relatively equal interest in medical assistance in dying between men and women, the collection of additional patient and socio-demographic data through the federal monitoring system will allow for more in-depth analysis in the future.

Cancer was again the most frequently cited underlying medical condition associated with an assisted death. It represented approximately 65% of all assisted dying cases by reporting provinces and a 12% increase from the first interim report. In all international jurisdictions that allow some form of assisted dying, cancer is the most frequently cited underlying medical condition among those receiving an assisted death (76.9% in OregonFootnote 9, 69% in BelgiumFootnote 10, and 68% in the NetherlandsFootnote 11). Numbers of assisted deaths for those with neuro-degenerative and circulatory/respiratory conditions did not change significantly since the last interim report.

As outlined earlier in Table 3, some provinces (Alberta, Manitoba, Saskatchewan, QuebecFootnote 12 and some Atlantic provinces) collected and provided information to Health Canada regarding requests for medical assistance in dying, including requests that were either declined, withdrawn, or incomplete. The data found in Table 3 and the additional findings below should be interpreted with caution as they represent only a small proportion of the total number of requests for medical assistance in dying. The findings show that of the 1,066 requests for medical assistance in dying reported by these provinces, approximately 8% were declined. The most commonly cited reasons were loss of competency and that death was not reasonably foreseeable.Footnote 13 Of these 1,066 requests reported, approximately 5% were withdrawn by the patient. Approximately 14% of requests were unfulfilled because the patient died prior to the completion of the assessment process. This could be attributed to requests being made at a late stage in an individual’s illness.

Provincial Profiles

Tables 4a and 4b 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 seven instances reported in a province on any one data element, the data has been supressed in these provincial reports to protect the privacy of patients and providers involved in medical assistance in dying. However, these numbers were included in the national roll-up wherever possible.

Table 4b. Profile of Medical Assistance in Dying by Province/Region for July 1 to December 31, 2017 Elements Manitoba Ontario Atlantic Region (NL, PEI, NS, NB) N/A indicates that this data was not collected by a province. Footnote 1 The category LTC/Nursing homes includes: long term care facilities and extended care facilities. Return to footnote a referrer Footnote 2 Other may include: retirement homes; assisted/supportive living; ambulatory setting; day program space; clinician’s office; funeral home; hotel/motel; undisclosed or suppressed due to small numbers. Return to footnote b referrer Footnote 3 Unknown includes either data not collected by a province or region, or numbers suppressed due to a small number of cases (less than 7) in that province or region. Return to footnote c referrer Footnote 4 According to Statistics Canada, a large urban centre consists of a population of 100,000 or more. Return to footnote d referrer Number of contacts or inquiries about medical assistance in dying 164 N/A 95 Number of requests for medical assistance in dying 75 N/A 92 Number of requests for medical assistance in dying that have been declined 30 N/A 8 Number of requests withdrawn by the individual 15 N/A Less than 7 Number of cases where the person died prior to the completion of the assessment 22 N/A 19 Total number of medically assisted deaths 33 477 70 Number of medically assisted deaths by setting 18 (55%) Hospital

15 (45%) Patient’s home 230 (48%) Hospital

216 (45%) Patient’s home

15 (3%) LTC/nursing home Footnote a

(Less than 7) Hospice

10 (2%) Other Footnote b 24 (34%) Hospital

(Less than 7) Patient’s home

(Less than 7) LTC/nursing home Footnote a

42 (60%) Unknown Footnote c Average age of persons receiving assisted death 73.0 74.2 70.0 Age range of persons receiving medical assistance in dying Age Range # of Cases Age Range # of Cases Age Range # of Cases 18-45

46-55

56-64

65-70

71-75

76-80

81-85

86-90

91+

Unknown Footnote c Less than 7

Less than 7

Less than 7

Less than 7

Less than 7

Less than 7

Less than 7

Less than 7

Less than 7

- 18-45

46-55

56-64

65-70

71-75

76-80

81-85

86-90

91+

Unknown Footnote c >11

24

70

69

68

68

75

57

35

- 18-45

46-55

56-64

65-70

71-75

76-80

81-85

86-90

91+

Unknown Footnote c -

Less than 7

11

11

Less than 7

9

Less than 7

Less than 7

Less than 7

21 Number of men/women receiving an assisted death 15 (45%) Male

18 (55%) Female 222 (47%) Male

255 (53%) Female 40 (57%) Male

30 (43%) Female Number of people receiving medical assistance in dying in large urban centres Footnote d versus smaller population centres 24 (73%) Large centres

9 (27%) Smaller centres 297 (62%) Large centres

180 (38%) Smaller centres 24 (34%) Large centres

19 (27%) Smaller centres

27 (39%) Unknown Footnote c Most common reported underlying medical condition of people who obtain a medically assisted death 22 (67%) Cancer-related

(Less than 7) Neuro-degenerative

(Less than 7) Circulatory/ Respiratory

(Less than 7) Other causes 294 (62%) Cancer-related

57 (12%) Neuro-degenerative

83 (17%) Circulatory/ Respiratory

43 (9%) Other causes 51 (73%) Cancer-related

(Less than 7) Neuro-degenerative

(Less than 7) Circulatory/ Respiratory

(Less than 7) Other causes

8 (13%) Unknown Footnote c

Implementation of a federal monitoring and reporting system for medical assistance in dying

Throughout the legislative process leading to the Criminal Code exemption for medical assistance in dying, the importance of a pan-Canadian monitoring system was recognized as a critical component in permitting this service. To this end, the legislation authorizes the federal Minister of Health to make regulations for the purpose of monitoring medical assistance in dying in Canada. The regulations will establish the conditions for collecting and analyzing data, monitoring trends, and providing reports with nationally aggregated information to Canadians.

On December 16, 2017, Health Canada launched a public consultation on draft regulations through the Canada Gazette Part I. The draft regulations outlined the information and reporting requirements for medical practitioners, nurse practitioners, and pharmacists related to requests for, and the provision of, medical assistance in dying. The public consultation period was open for 60 days and closed on February 13, 2018. Health Canada received 43 responses on the proposed regulations. This feedback is being carefully reviewed and will inform the final regulations. A summary report of the feedback is available on Canada.ca.

Health Canada anticipates that Canadian health care professionals will be required to submit information under the new regime in the fall of 2018, with federal monitoring reports from Health Canada using the data derived from the national monitoring regime starting in the spring of 2019.

The data collected under this new federal monitoring and reporting system will provide a more complete picture of who is requesting and receiving medical assistance in dying. This system will enable Canada to align with the standard of public reporting seen in other countries where medical assistance in dying is available. In addition, collecting more robust, nationally comparable data will create a base of evidence that will inform ongoing discussions about medical assistance in dying in Canada. This data will also 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.