Monitoring System for Medical Assistance in Dying in Canada

Throughout the judicial and legislative process which resulted in the Criminal Code exemption for medical assistance in dying (MAID), the importance of a federal, pan-Canadian monitoring system was clearly stated. Monitoring and reporting aims to provide accountability and transparency into how the legislation is working. It will also foster public trust in the new federal law.

The federal legislation sets out several requirements for the federal government in order to implement a monitoring and reporting system for MAID in Canada.

These include:

• Guidelines for the reporting of medically assisted deaths
• Regulations for the monitoring of medical assistance in dying (in force as of January 1, 2023)

Federal guidelines for reporting of deaths in cases of medical assistance in dying

According to the legislation on medical assistance in dying, the federal Minister of Health must publish guidelines on what information to include on death certificates in cases of MAID.

The federal guidelines offer a clear way to identify and report cases of medically assisted deaths across Canada.

• Federal guidelines: reporting of deaths in cases of medical assistance in dying (April 2017)

In Canada, death reporting and investigation are the responsibility of individual provinces and territories. Some provinces and territories have also already adopted their own approaches to death certification for medically assisted deaths. That is why the federal guidelines are non-binding and respect provincial and territorial oversight for reporting deaths.

Regulations for the monitoring and reporting of medical assistance in dying

According to the federal law, the Minister of Health must make regulations to collect information and publicly report on medical assistance in dying in Canada.

Public reports can give a clear picture of how the legislation is working and help us understand the impact of the legislation.

Consultations on regulations or the monitoring of medical assistance in dying

On December 16, 2017, the Government of Canada published draft regulations in Canada Gazette, Part I, a key step in creating a federal, pan-Canadian monitoring system on medical assistance in dying. During this stage, Canadians and key stakeholders had an opportunity to review the regulations being proposed by the federal government and provide written comments.

The draft regulations set out the reporting requirements for physicians and nurse practitioners, who are authorized to provide medical assistance in dying, as well as pharmacists, who dispense medication for assisted dying. The information collected will be used to publish annual reports on medical assistance in dying in Canada. These reports will include the number of written requests received, the number of medically assisted deaths, and the number of people found ineligible. Any personal information collected will be protected under the federal Privacy Act.

The feedback period on the draft regulations closed on February 13, 2018.

A summary of responses received during the consultation process is found below.

What We Heard: Responses to public consultation on the proposed Monitoring of Medical Assistance in Dying Regulations (2018)

Introduction

On June 17, 2016, the federal Government passed legislation that allows eligible Canadian adults to request medical assistance in dying. This legislation is now part of the Criminal Code and exempts physicians and nurse practitioners from certain criminal offences if they provide or assist in providing medical assistance in dying according to the eligibility requirements and safeguards in the law.

Monitoring is a key component in virtually all jurisdictions that permit some form of assisted death. As is consistent with international regimes, the federal legislation on medical assistance in dying requires the federal Minister of Health to make regulations on the collection and reporting of information relating to requests for, and the provision of medical assistance in dying.

After consulting with the provinces, territories and key stakeholders, Health Canada developed draft regulations for a pan-Canadian monitoring system on medical assistance in dying. The draft regulations were published in Canada Gazette, Part I for a 60-day consultation period (between December 16, 2017 and February 13, 2018). During the consultation period, Health Canada held technical briefings for regulators of practitioners and pharmacists, to explain the reporting requirements and help support them in providing robust feedback.

This report provides a summary of the comments received during the consultation period and outlines next steps in the development of a pan-Canadian monitoring system on medical assistance in dying.

Who provided feedback?

Health Canada received 43 written submissions from individuals and organizations on the Monitoring of Medical Assistance in Dying regulatory proposal. Respondents included:

• practitioners or organizations representing practitioners
• organizations representing pharmacists
• provincial or territorial governments
• Offices of Privacy Commissioners
• research or academic organizations
• advocacy groups
• individuals

What did respondents say?

Overall, respondents supported the creation of a federal monitoring and reporting regime for medical assistance in dying (MAID), but differed on how best to strike a balance between minimizing reporting burden on practitioners, respecting the privacy of individuals and practitioners, and the need for insight into how the amendments to the Criminal Code are being implemented. Key themes emerging from the comments are presented below.

Reporting requirements:

• Practitioner burden should be a key consideration in developing reporting requirements. Measures to mitigate burden, such as the designation of provincial and territorial recipients of reports, and the use of an online reporting portal, were largely supported.
• Reporting requirements should not be so burdensome that they discourage practitioners from providing MAID.
• Practitioners should not be responsible for reporting in cases where MAID is not provided.
• Timelines for reporting should be extended and aligned with each other to prevent confusion.
• Requiring pharmacists to report is an appropriate regulatory measure; a 30-day reporting deadline for pharmacists is appropriate.
• The regulations should clarify how many reports are required where more than one substance is dispensed for medical assistance in dying.
• For some of the reporting requirements, practitioners should be allowed to provide narrative responses, rather than selection of an option.

Balancing insight into legislation with reporting burden

• Collecting information that a health care practitioner does not typically discuss with a patient, such as their marital status or principal occupation during working life, should be well justified.
• Data collection should be expanded to include reporting on symptoms, suffering, social concerns, and suicide risk.
• Reporting requirements regarding referrals should be revised and clarified.
• Data on the experience of the patient and their family is of research interest.
• The regulations should not require an estimate as to the amount of time by which medical assistance in dying would shorten a person's life. Prognoses are difficult to make and not reliable.

Privacy Concerns

• The proposed regulations do not address all relevant aspects of privacy.
• Measures taken to protect personal information should meet or exceed the requirements of provincial or territorial privacy legislation.

Oversight and compliance:

• Further clarity is needed on measures planned for the oversight of MAID.

Publication of Regulations for the Monitoring of Medical Assistance in Dying

The original federal MAID Regulation came-into-force on November 1, 2018, and required mandatory reporting by physicians, nurse practitioners and pharmacists on the assessment and provision of MAID. With the passage of the new MAID legislation on March 17, 2021, amendments were required to align the regulations with the new legislation.

On November 9, 2022, the final Regulations Amending the Regulations for the Monitoring of Medical Assistance in Dying were published in Canada Gazette, Part II, to allow for a coming-into-force on January 1, 2023.

These amendments allow for expanded data collection and will enhance the federal government's ability to provide Canadians with a more comprehensive and inclusive picture regarding the characteristics of who is requesting MAID and why.

Privacy Practices

Health Canada will only collect the personal information needed to monitor Medical Assistance in Dying (MAID) as outlined in the existing federal Regulations on MAID and will protect it in accordance with the Privacy Act and Treasury Board privacy policies. The department also has internal procedures for assessing risks to privacy of new or existing programs or activities (including the conduct of Privacy Impact Assessments (PIA)) and procedures to manage privacy breaches.

Health Canada's Privacy Management Division works with departmental programs, including the MAID Program, to ensure compliance with the Privacy Act, as well as Treasury Board and departmental policies and processes related to the handling and protection of personal information. In addition, the Privacy Management Division provides training to programs on meeting their obligations when it comes to handling personal information.

In order to assess and mitigate privacy risks, Health Canada conducted a PIA on the Monitoring of MAID.

If you would like more information about Health Canada's privacy practices, please contact:

Health Canada / Public Health Agency of Canada Privacy Management Division
Holland Cross - Tower A
11 Holland Avenue, 5th Floor, Suite 513
Postal Locator: 3107A
Ottawa, Ontario K1A 0K9
E-mail. privacy-vie.privee@hc-sc.gc.ca
Telephone: 613-946-3179
Fax: 613-941-4541
Teletypewriter: 1-800-465-7735 (Service Canada)