Canada: Medical Assistance In Dying: Canadian Registry Recommendations

I. INTRODUCTION

Medical assistance in dying (MAID) became the law of the land in Canada on 17 June 2016.1 The term "MAID" encapsulates this newly legal medical practice: first, MAID encompasses two distinct types of acts, including where a medical professional directly administers a substance that causes the death of a patient (traditionally known as voluntary euthanasia) and where a medical professional prescribes to a person a substance they can self-administer to cause death (traditionally known as physician-assisted suicide); second, MAID is legal in a medical context only; third, physicians and nurse practitioners are able to provide MAID; and fourth, the words "in dying" suggest that eligibility is limited to patients who are dying, that is, nearing a natural death.2

Over one year following implementation of legislation legalizing MAID, it remains difficult to obtain comprehensive data — in terms of number of variables and frequency of reporting — on how many Canadians have applied for MAID, how many were denied, reasons for rejection, and other relevant variables. This is due to an absent streamlined collection mechanism, inconsistency amongst provinces and territories in collecting data, and expressed confidentiality concerns by provinces and territories with a low rate of MAID cases.

Comprehensive data collection is critical as Parliament analyzes and attempts to improve the Canadian approach to this medical procedure. Maintaining data through a streamlined collection system has the promise of coalescing a wide range of medical and legal functions, such as clinical support, preventative health management, and ensuring that statutory requirements across the provinces and territories are being adhered to.

The objective of this article is to highlight the need to establish a national Canadian standard for data collection, without which researchers, the federal government, and others are prevented from conducting comprehensive research and analyzing trends in basic and reliable information that could otherwise improve preventative initiatives, societal understanding, and end-of-life care across the country. The first section will discuss the value that comprehensive data collection brings to understanding MAID in Canada. The second section will provide an overview of the legal framework in which MAID operates in Canada, as well as a brief discussion on where data collection is currently failing, as evidenced by the first three interim government reports on MAID.3 Finally, this article will propose that the federal government should set up a national MAID registry for MAID cases successfully or unsuccessfully carried through, based on the current structure of the Canadian cancer registry system. Setting up a system that assembles valid, consistent, reliable, and uniform data on all known MAID patients in defined populations whose demographic characters are known will ensure that future policies are based on accurate and reliable evidence.

II. MONITORING MAID IN CANADA

With MAID having been initiated in Canada in 2016, the provinces and territories have been tasked with tracking cases that have occurred.4 This is due to the practical implication of the division of powers in Canada, whereby the federal government may develop appropriate eligibility criteria and safeguards while provinces and territories are responsible for specific policies pertaining to administration of health services.5 Due to this division of powers, policies relating to implementation and reporting on MAID vary considerably across jurisdictions,6 so it is vital to develop a coordinated mechanism for tracking cases. This is necessary to ensure consistency in data reporting, to monitor patterns and trends, and to provide transparent and reliable information to the Canadian public.7 Unfortunately, formal structures have not yet been standardized. While recent reports issued by the federal government are an important step towards creating a comprehensive data collection scheme, there are noticeable gaps and inconsistencies in data collection variables across provinces and territories.

The essentiality of data collection is well recognized. The Canadian government has explicitly acknowledged this by indicating that: (1) Health Canada must lead a cooperative process with provinces and territories to create and analyze national reports on MAID cases, and these reports are to be tabled annually in Parliament; and (2) a mandatory statutory review of applicable federal legislation must be conducted every four years after the coming into force of applicable legislation.8 Accordingly, within Bill C-14 was the power for the Federal Minister of Health to make regulations establishing a monitoring system. These regulations could allow for collection of data and information relating to MAID, including information provided by medical or nurse practitioners; form, manner, and circumstances in which information was provided; details about how data would be analyzed and reported to the public; and rules for protection and disbursement of such information.9

The federal government recently released draft regulations to establish a federal monitoring system,10 which will come into force on 1 November 2018.11 The proposed regulations "require medical practitioners, nurse practitioners, and pharmacists to file reports containing certain information related to requests for, and the provision of, medical assistance in dying ... within prescribed deadlines."12 These are then sent to Health Canada, with reports published once a year.13 Health Canada is currently "developing an online portal jointly with Statistics Canada that will help make it easy to submit the required information and ensure that ... all personal information is protected."14

Interim reports released by the federal government are the public's first glimpse at what this system may look like in Canada. While these reports act as a temporary reporting system until the permanent process is fully developed,15 the manner of reporting adopted will likely be similar given that other international jurisdictions with legalized assisted death have implemented similar processes.16 The Oregon Public Health Division is required to collect compliance information from reporting forms and death certificates and issue an annual report to the public.17 Regional euthanasia review committees in the Netherlands gather reports from attending physicians and municipal pathologists to ensure compliance with the legislation, make a record of all reported cases, and submit a joint annual report to the Ministers of Justice and Health.18

The few jurisdictions permitting assisted death — including Canada, as evidenced by the proposed regulations — have yet to move away from this reporting structure to a comprehensive patient registry system that collects and allows for analysis of massive quantities of data essential to improving health care19 even though patient registries can serve as powerful tools. Such registries assist with observing the course or history of a disease, understanding variations in treatment and outcomes, assessing effectiveness and disparities in care delivery, monitoring safety and harm, and improving quality of care.20 Registries have great potential to ensure high standards and quality, and better data will create better policy.21

The authors argue that the potential for a MAID-focused registry is extensive. Registry data analytics could be used to turn large amounts of data into actionable information across a wide range of scenarios, including (but not limited to): identifying those who would benefit from preventative care by analyzing trends within collected patient profiles; identifying and minimizing potentially coercive or negligent behaviour by medical or health professionals; identifying regions where end-of-life care options are limited and investing in necessary improvements could increase access and quality of care; and greatly expanding research and development related to MAID.22

Some criticisms have emerged in relation to patient registries,23 the most relevant to a potential MAID registry being that meta-analysis across registries may be challenging, especially where competing registries are collecting different data from the same patients over a different period, as well as lack of resources and privacy concerns.24 However, the usual problems with patient registry meta-analysis can be minimized in a MAID registry if the core data being collated in each location can be standardized while allowing for a location to collect optimal information as they see fit. While these concerns are discussed further below, it is vital to stress that despite the expressed concerns over registries, such systems yield significant research,25 greatly improve clinical effectiveness and treatment options, and aid in monitoring patient safety.26

Footnotes

1 Bill C-14, An Act to amend the Criminal Code and to make related amendments to other Acts (medical assistance in dying), 1st Sess, 42nd Parl, 2016 (assented to 17 June 2016), SC 2016, c 3 [Bill C-14].

2 Government of Canada, "Questions and Answers: Medical Assistance in Dying," online: <justice.gc.ca/eng/cj-jp/ad-am/faq.html>; Rose M Carter & Brandyn Rodgerson, "Medical Assistance in Dying: Journey to Medical Self-Determination" (2018)

3 Government of Canada, "Interim Update on Medical Assistance in Dying in Canada June 17 to December 31, 2016" (Ottawa: Government of Canada, 2017), online: < https://www.canada.ca/en/health-canada/services/publications/health-system-services/medical-assistance-dying-interim-report-dec-2016.html> [First Interim Report]; Government of Canada, "2nd Interim Report on Medical Assistance in Dying in Canada" (Ottawa: Government of Canada, 2017), online: < https://www.canada.ca/en/health-canada/services/publications/health-system-services/medical-assistance-dying-interim-report-sep-2017.html> [Second Interim Report]; Government of Canada, "Third Interim Report on Medical Assistance in Dying in Canada" (Ottawa: Government of Canada, 2018), online: < https://www.canada.ca/en/health-canada/services/publications/health-system-services/medical-assistance-dying-interimreport-june-2018.html> [Third Interim Report].

4 Carter v Canada (Attorney General), 2015 SCC 5 at para 117 [Carter]; House of Commons, Special Joint Committee on Physician-Assisted Dying, Medical Assistance in Dying: A Patient-Centred Approach, 42nd Parl, 1st Sess (February 2016); Government of Canada, "Legislative Background: Medical Assistance in Dying (Bill C-14)," online: <www.justice.gc.ca/eng/rp-pr/other-autre/ad-am/ , 42nd Parl, 1st Sess (February 2016); Government of Canada, "Legislative Background: Medical Assistance in Dying (Bill C-14)," online: p2.html> [Government of Canada, "Legislative Background"].

5 First Interim Report, supra note 3.

6 Second Interim Report, supra note 3.

7 Carter & Rodgerson, supra note 2 at 802.

8 Special Joint Committee on Physician-Assisted Dying, supra note 4.

9 Bill C-14, supra note 1, cl 241.31(3).

10 Monitoring of Medical Assistance in Dying Regulations, (2017) C Gaz I:151:50, 4917, online: < www.gazette.gc.ca/rp-pr/p1/2017/2017-12-16/html/reg6-eng.html> [Proposed Regulations].

11 Government of Canada, "Backgrounder: Regulations for Monitoring Medical Assistance in Dying" (August 2018), online: < https://www.canada.ca/en/health-canada/news/2018/08/backgrounder-regulations-for-monitoring-medical-assistance-in-dying.html> [Government of Canada, "Backgrounder"].

12 Proposed Regulations, supra note 10 at 4918. According to the proposed regulations, reporting requirements would vary based on the type of request (that is, if the request was withdrawn, the patient died of other natural causes, and so on).

13 Ibid.

14 Government of Canada, "Backgrounder," supra note 11.

15 Government of Canada, "Medical Assistance in Dying," online: < https://www.canada.ca/en/healthcanada/services/medical-assistance-dying.html>.

16 The scope of information in the Canadian interim report is limited compared to other data summaries of international jurisdictions, discussed more in depth in Part IV, below.

17 See Public Health Division, Center for Health Statistics, "Oregon Death with Dignity Act: Data Summary 2016" (10 February 2017), online: < www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year19.pdf>. Similarly, the Washington State Department of Health releases an annual summary from data collected from required documents submitted by attending physicians and pharmacies to the Department: Washington State Department of Health, "2015 Death with Dignity Act Report: Executive Summary," online: < https://www.doh.wa.gov/portals/1/Documents/Pubs/422-109-DeathWithDignityAct2015.pdf>.

18 See Regional Euthanasia Review Committees, Annual Report 2015 (The Hague: RTE, 2016), online: < https://www.euthanasiecommissie.nl/binaries/euthanasiecommissie/documenten/jaarverslagen/2015/april/26/jaarverslag-2015/Jaarverslag2015ENG.pdf>.

19 See Wullianallur Raghupathi & Viju Raghupathi, "Big Data Analytics in Healthcare: Promise and Potential" (2014) 2:3 Health & Information Science & Systems 1.

20 See Richard E Gliklich, Nancy A Dreyer & Michelle B Leavy, eds, Registries for Evaluating Patient Outcomes: A User's Guide, 3rd ed (Rockville, Md: Agency for Healthcare Research and Quality, 2014), online: <https://www.ncbi.nlm.nih.gov/books/NBK208616/>. See also Statistics Canada, "Canadian Cancer Registry (CCR)," online: < www23.statcan.gc.ca/imdb/p2SV.pl?Function=getSurvey&SDDS=3207#a1>.

21 Information collected in the national cancer registry system is used to assist and support health planners and decision-makers at all levels of government to identify risk factors; plan, monitor and evaluate cancer-related initiatives; and research. See Statistics Canada, "Canadian Cancer Registry (CCR)," ibid.

22 See Raghupathi & Raghupathi, supra note 19 at 2-3.

23 Many criticisms are not applicable to a potential MAID registry. For instance, patient-generated registries have been criticized because only well-educated and able-bodied patients have meaningful participation. Furthermore, concerns relating to tissue samples submitted to biobanks have proven to be controversial. See Thomas A Workman, "Engaging Patients in Information Sharing and Data Collection: The Role of Patient-Powered Registries and Research Networks" (Rockville, Md: Agency for Healthcare Research and Quality, 2013) at 4, online: < https://www.ncbi.nlm.nih.gov/books/NBK164513/pdf/Bookshelf_NBK164513.pdf>.

24 Ibid.

25 Ibid. There are also ethical concerns surrounding using health information for research purposes. Applicable regulatory requirements can allay these concerns. See European Union Rare Diseases Task Force, "Patient Registries in the Field of Rare Diseases: Overview of the Issues Surrounding the Establishment, Management, Governance and Financing of Academic Registries" (2011) at 15, online: <www.eucerd.eu/?post_type=document&p=1218>. See also Nimi Bassi et al, "Big Data and Data Analytics" (2016) Canadian Health Information Management Association, Professional Practice Brief 0041.16 at 6-7, online: < https://www.echima.ca/uploaded/pdf/emails/0041.16_Big%20Data%20and%20Data%20Analytics.pdf>.

26 European Union Rare Diseases Task Force, ibid at 5-7. Furthermore, the national cancer registry system has internal processes to eliminate duplicate or conflicting information: see Statistics Canada, "Canadian Cancer Registry (CCR)," supra note 20.

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Originally published in Alberta Law Review

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