Dear Members of the Federal External Panel:
On behalf of the Canadian Medical Association (CMA), I appreciate the opportunity to provide input toward the Federal External Panel's national consultation to support the federal government's legislative response following the Supreme Court of Canada's ruling in Carter v. Canada.
As the national professional association representing Canada's physicians, the CMA has played an important role in leading the public dialogue on end-of-life care, including assisted dying. In 2014, the CMA led a national consultation on end-of-life care which included a series of public and member town hall consultations across the country. This national dialogue focused on three main issues: advance care planning, palliative care, and physician-assisted dying. As highlighted in the summary report (enclosed as Appendix 1), the Canadian public emphasized the need for strict protocols and safeguards if the law on physician-assisted dying were to change.
This initial consultation provided valuable insights to inform the concurrent CMA's in-depth and comprehensive consultation with its membership as well as medical and health stakeholders as an intervener before the Supreme Court and following the Carter decision. This consultation included engagement of the CMA's Ethics Committee, policy debates as part of the CMA's Annual Meetings in 2014 and 2015, in-person member forums across the country, and an online dialogue. The consultation was critical to the development of the CMA's Principles-based Recommendations for a Canadian Approach to Assisted Dying (enclosed as Appendix 2).
These recommendations, guided by a set of ten foundational principles, address patient eligibility for access to and assessment for assisted dying, procedural safeguards for eligibility criteria, the roles and responsibilities of the attending and consulting physicians, and the issue of conscientious objection. Taken together, these recommendations form the CMA's position on the forthcoming legislative and regulatory framework to govern assisted dying in Canada.
In addition to our recommendations, we would like to highlight key points that are of particular relevance to physicians:
NATIONAL, PAN-CANADIAN LEGISLATIVE AND REGULATORY FRAMEWORK
The CMA strongly recommends the establishment of national and coordinated legislative and regulatory processes and systems in response to the Carter decision.
The CMA is deeply concerned that in the absence of federal action to support the establishment of national guidelines for assisted dying, a patchwork of differing and potentially conflicting approaches could emerge across jurisdictions. Legislative action at the federal level is needed to provide further clarity for physicians and their patients and support the promulgation of a coordinated and consistent approach across all jurisdictions in Canada. The CMA has been working with the medical regulatory colleges at the national level to mitigate this risk through the development of the CMA's Principles-based Recommendations for a Canadian Approach to Assisted Dying which has encouraged similar efforts by the regulatory colleges. In addition to these initiatives, federal action is required.
As the Federal External Panel is aware, the Carter decision emphasizes that any regulatory or legislative response must seek to reconcile the Charter rights of patients (wanting to access assisted dying) and physicians (who choose not to participate in assisted dying on grounds of conscientious objection). The notion of conscientious objection is not monolithic. While some conceptions of conscience encompass referral, others view referral as being connected to, or as akin to participating in, a morally objectionable act.
It is the CMA's position that an effective reconciliation is one that respects, and takes account of, differences in conscience, while facilitating access on the principle of equity. To this end, the CMA's
membership strongly endorses the recommendation on conscientious objection as set out in section 5.2 of the CMA's enclosed Principles-based Recommendations for a Canadian Approach to Assisted Dying.
The CMA recognizes, and supports addressing, the need to develop education materials for physicians. To this end, the CMA is actively developing education modules for physicians following an environmental scan of existing courses and discussions with other jurisdictions (e.g., the Royal Dutch Medical Association). The CMA has the support of the Royal College of Physicians and Surgeons of Canada, the College of Family Physicians of Canada, and the Canadian Medical Protective Association to lead this initiative.
Finally, as previously stated, the CMA strongly encourages the federal government to make the report of the Federal External Panel publicly available once final. The CMA urges the members of the Federal External Panel to support this recommendation to the federal government.
Thank you once again for the opportunity to provide input. The CMA looks forward to our meeting with the Federal External Panel on October 20, 2015.
Cindy Forbes, MD, CCFP, FCFP
Jeff Blackmer MD, MHSc, FRCPC
Vice-President, Medical Professionalism
Appendix 1 - Summary Report: End-of-Life Care A National Dialogue (please see pdf for link to document)
Appendix 2 - CMA's Principles-based Recommendations for a Canadian Approach to Assisted Dying
Principles-based Recommendations for a Canadian Approach to Assisted Dying
On Feb. 6, 2015, the Supreme Court of Canada unanimously struck down the law prohibiting assisted dying. The court suspended that decision for 12 months. This has provided an opportunity for the Canadian Medical Association (CMA) to build on its past work and pursue further consultation with provincial and territorial medical associations, medical and non-medical stakeholders, members, legislatures and patients for processes, whether legal, regulatory or guidelines, that respect patients' needs and reflects physicians' perspectives.
The goal of this process is twofold: (a) discussion and recommendations on a suite of ethical-legal principles and (b) input on specific issues that are particularly physician-sensitive and are worded ambiguously or not addressed in the Court's decision. The touch points are reasonable accommodation for all perspectives and patient-centeredness.
For purposes of clarity, CMA recommends national and coordinated legislative and regulatory processes and systems. There should be no undue delay in the development of these laws and regulations. The principles are not designed to serve as a tool for legislative compliance in a particular jurisdiction or provide a standard of care. Rather, the CMA wishes to provide physicians with guidance and a vision of what physicians might strive for to further their professional and legal obligations in a complex area.
The CMA recommends adopting the following principles-based approach to assisted dying in Canada:
The following foundational principles underpin CMA's recommended approach to assisted dying. Proposing foundational principles is a starting point for ethical reflection, and their application requires further reflection and interpretation when conflicts arise.
1. Respect for patient autonomy: Competent adults are free to make decisions about their bodily integrity. Specific criteria are warranted given the finality of assisted dying.
2. Equity: To the extent possible, all those who meet the criteria for assisted dying should have access to this intervention. Physicians will work with relevant parties to support increased resources and access to high quality palliative care, and assisted dying. There should be no undue delay to accessing assisted dying, either from a clinical, system or facility perspective. To that end, the CMA calls for the creation of a separate central information, counseling, and referral service.
3. Respect for physician values: Physicians can follow their conscience when deciding whether or not to provide assisted dying without discrimination. This must not result in undue delay for the patient to access these services. No one should be compelled to provide assistance in dying.
4. Consent and capacity: All the requirements for informed consent must clearly be met, including the requirement that the patient be capable of making that decision, with particular attention to the context of potential vulnerabilities and sensitivities in end of life circumstances. Consent is seen as an evolving process requiring physicians to continuously communicate with the patient.
5. Clarity: All Canadians must be clear on the requirements for qualification for assisted dying. There should be no "grey areas" in any legislation or regulations.
6. Dignity: All patients, their family members or significant others should be treated with dignity and respect at all times, including throughout the entire process of care at the end of life.
7. Protection of patients: Laws and regulations, through a carefully designed and monitored system of safeguards, should aim to minimize harm to all patients and should also address issues of vulnerability and potential coercion.
8. Accountability: An oversight body and reporting mechanism should be identified and established in order to ensure that all processes are followed. Physicians participating in assisted dying must ensure that they have appropriate technical competencies as well as the ability to assess decisional capacity, or the ability to consult with a colleague to assess capacity in more complex situations.
9. Solidarity: Patients should be supported and not abandoned by physicians and health care providers, sensitive to issues of culture and background, throughout the dying process regardless of the decisions they make with respect to assisted dying.
10. Mutual respect: There should be mutual respect between the patient making the request and the physician who must decide whether or not to perform assisted dying. A request for assisted dying is only possible in a meaningful physician-patient relationship where both participants recognize the gravity of such a request.
Based on these principles, the Supreme Court decision in Carter v. Canada (2015)1 and a review of other jurisdictions' experiences, CMA makes the following recommendations for potential statutory and regulatory frameworks with respect to assisted dying. We note that this document is not intended to address all potential issues with respect to assisted dying, and some of these will need to be captured in subsequent regulations.
1. Patient eligibility for access to assisted dying
1.1 The patient must be a competent adult who meets the criteria set out by the Supreme Court of Canada decision in Carter v. Canada (2015.
1.2 Informed decision
* The attending physician must disclose to the patient information regarding their health status, diagnosis, prognosis, the certainty of death upon taking the lethal medication, and alternatives, including comfort care, palliative and hospice care, and pain and symptom control.
* The attending physician must be satisfied that:
- the patient is mentally capable of making an informed decision at the time of the request(s)
- the patient is capable of giving consent to assisted dying, paying particular attention to the potential vulnerability of the patient in these circumstances
- communications include exploring the priorities, values and fears of the patient, providing information related to the patient's diagnosis and prognosis, treatment options including palliative care and other possible interventions and answering the patient's questions
* If either or both the attending physician or the consulting physician determines that the patient is incapable, the patient must be referred for further capacity assessment.
* Only patients on their own behalf can make the request while competent.
* The attending physician must be satisfied, on reasonable grounds, that all of the following conditions are fulfilled:
- The patient's decision to undergo assisted dying has been made freely, without coercion or undue influence from family members, health care providers or others.
- The patient has a clear and settled intention to end his/her own life after due consideration.
- The patient has requested assisted dying him/herself, thoughtfully and repeatedly, in a free and informed manner.
2. Patient eligibility for assessment for decision-making in assisted dying
Stage 1: Requesting assisted dying
1. The patient submits at least two oral requests for assisted dying to the attending physician over a period of time that is proportionate to the patient's expected prognosis (i.e., terminal vs non-terminal illness). CMA supports the view that a standard waiting period is not appropriate for all requests.
2. CMA recommends generally waiting a minimum of 14 days between the first and the second oral requests for assisted dying.
3. The patient then submits a written request for assisted dying to the attending physician. The written request must be completed via a special declaration form that is developed by the government/department of health/regional health authority/health care facility.
4. Ongoing analysis of the patient's condition and ongoing assessment of requests should be conducted for longer waiting periods.
Stage 2: Before undertaking assisted dying
5. The attending physician must wait no longer than 48 hours, or as soon as is practicable, after the written request is received.
6. The attending physician must then assess the patient for capacity and voluntariness or refer the patient for a specialized capacity assessment in more complex situations.
7. The attending physician must inform the patient of his/her right to rescind the request at any time.
8. A second, independent, consulting physician must then also assess the patient for capacity and voluntariness.
9. Both physicians must agree that the patient meets eligibility criteria for assisted dying to proceed.
10. The attending physician must fulfill the documentation and reporting requirements.
Stage 3: After undertaking assisted dying
11. The attending physician, or a physician delegated by the attending physician, must take care of the patient until the patient's death.
3. Role of the physician
3.1 The attending physician must be trained to provide assisted dying.
3.2 Patient assessment
* The attending physician must determine if the patient qualifies for assisted dying under the parameters stated above in Section 1.
* The attending physician must ensure that all reasonable treatment options have been considered to treat physical and psychological suffering according to the patient's need, which may include, independently or in combination, palliative care, psychiatric assessment, pain specialists, gerontologists, spiritual care, and/or addiction counseling.
3.3 Consultation requirements
* The attending physician must consult a second physician, independent of both the patient and the attending physician, before the patient is considered eligible to undergo assisted dying.
* The consulting physician must
- Be qualified by specialty or experience to render a diagnosis and prognosis of the patient's illness and to assess their capacity as noted in Stage 2 above.
3.4 Opportunity to rescind request
* The attending physician must offer the patient an opportunity to rescind the request at any time; the offer and the patient's response must be documented.
3.5 Documentation requirements
* The attending physician must document the following in the patient's medical record:
- All oral and written requests by a patient for assisted dying
- The attending physician's diagnosis and prognosis, and their determination that the patient is capable, acting voluntarily and has made an informed decision
- The consulting physician's diagnosis and prognosis, and verification that the patient is capable, acting voluntarily and has made an informed decision
- A report of the outcome and determinations made during counseling
- The attending physician's offer to the patient to rescind the request for assisted dying
- A note by the attending physician indicating that all requirements have been met and indicating the steps taken to carry out the request
3.6 Oversight body and reporting requirements
* There should be a formal oversight body and reporting mechanism that collects data from the attending physician.
* Following the provision of assisted dying, the attending physician must submit all of the following items to the oversight body:
- Attending physician report
- Consulting physician report
- Medical record documentation
- Patient's written request for assisted dying
* The oversight body would review the documentation for compliance
* Provincial and territorial jurisdictions should ensure that legislation and/or regulations are in place to support investigations related to assisted dying by existing provincial and territorial systems
* Pan-Canadian guidelines should be developed in order to provide clarity on how to classify the cause on the death certificate
4. Responsibilities of the consulting physician
* The consulting physician must verify the patient's qualifications including capacity and voluntariness.
* The consulting physician must document the patient's diagnosis, prognosis, capacity, volition and the provision of information sufficient for an informed decision. The consulting physician must review the patient's medical records, and should document this review.
5. Moral opposition to assisted dying
5.1 Moral opposition by a health care facility or health authority
* Hospitals and health authorities that oppose assisted dying may not prohibit physicians from providing these services in other locations. There should be no discrimination against physicians who decide to provide assisted dying.
5.2 Conscientious objection by a physician
* Physicians are not obligated to fulfill requests for assisted dying. There should be no discrimination against a physician who chooses not to participate in assisted dying. In order to reconcile physicians' conscientious objection with a patient's request for access to assisted dying, physicians are expected to provide the patient with complete information on all options available to them, including assisted dying, and advise the patient on how they can access any separate central information, counseling, and referral service.
1 Carter v. Canada (Attorney General),  1 SCR 331, 2015 SCC 5 (CanLII)
The Canadian Medical Association (CMA) is pleased to provide input on the proposed regulations of the federal monitoring of Medical Assistance in Dying in Canada.
The CMA fully supports the proposed intent of the regulations, in particular, public accountability and transparency and safeguards for vulnerable patient populations. Tracking trends and carrying out research is very important to monitor the implementation and implications of medical assistance in dying.
The CMA further supports the intent to provide electronic reporting and guidance documents, and to leverage any synergies between the federal and provincial/territorial governments, especially to prevent duplication and to promote consistency in reporting across the country.
The CMA would like to raise the following critical areas for your consideration:
1. Definitions/parameters of terms
There continues to be a need to more clearly define several terms to ensure consistency of reporting. For example:
a. Who constitutes a “practitioner”? One can argue that there is a broad scope of who is “a medical practitioner or nurse practitioner”. Is it the practitioner who provides MAiD? Or he practitioner who first reads a patient’s request for MAiD? Or is the first practitioner? Or second practitioner who assesses the patient?
b. What constitutes a therapeutic relationship (as one of the eight proposed items to be collected about the practitioner)? A therapeutic relationship is not required to access MAiD. This criterion should be removed and if not, given the differences in opinion in the health professions as to what constitutes a therapeutic relationship includes, it should be clearly defined.
c. What constitutes a request, a written request, the receipt of a request? If reporting obligations are “triggered” by a patient’s “written request”, at what point is that request actually triggered? The very first practitioner who receives the patient’s written request? Or the practitioner who conducts the eligibility assessment upon receipt of the written request? Or the practitioner who provides the prescription or carries out the procedure?
d. On a related point, without clear definitions, any future comparative analysis of research or trends will be difficult as there will be no common starting point.
e. There continues to be confusion on how to count or when to start counting the required 10 clear days. There are many reasons why this requires more clarity.
2. Collection and protection of data
We applaud Health Canada for further reducing and revising data requirements. We submit, however, that further reductions are required for several reasons, including adherence to privacy best practices that require the collection of the least amount of data necessary to achieve reasonable purposes. In particular:
a. In view of the quantity and highly personal and sensitive data that will be collected about patients and practitioners, data sharing agreements should be required; for example, agreements between the federal government and provincial/territorial governments or between researchers and others requesting use of the data to facilitate the appropriate sharing of data.
b. Collection of personal information should be limited to what is relevant to the purpose of monitoring medical assistance in dying. Personal information, such as the patient’s full postal code, marital status, or principal occupation is beyond the scope of the eligibility criteria outlined in the legislation and thus beyond the scope of the purpose of monitoring the impact of the legislation.
c. Any “characteristics” of the patient should refer only to the eligibility criteria. If other data will be collected beyond that scope, the justification for doing so, and the characteristics themselves, should be clearly outlined.
d. The scope of the information collected about the practitioner could be narrowed. As is, it is very broad – a list of eight items – while the Quebec regulations, as a comparator, have only three-four items that must be collected in relation to the physician who administers MAiD.
3. Additional requirements
Schedule 4 [section 2(i)] of the proposed regulations requires that the practitioner opine as to whether the patient met, or did not meet, all of the eligibility criteria outlined in the legislation – with two significantly expanded requirements; the requirements that the practitioner: 1) provide an estimate as to the amount of time MAiD shortened the patient’s life; and 2) indicate the anticipated likely cause of natural death of the patient.
These additional requirements are beyond the letter and spirit of the legislation and, in many ways, are in direct contradiction to the legislation. The Legislature was not unaware when it drafted the Act that it did not follow other jurisdictions’ criteria requiring either a terminal illness or a prognosis of time within which the practitioner believed the patient would die, e.g., “within the next 6 months”.
It is specifically the lack of a timeframe that makes the legislation unique and provides flexibility for both patients and practitioners. By adding these two additional criteria for reporting, in effect, they become additional criteria for eligibility which is, as stated above, beyond the scope, and in contradiction to, the legislation.
4. Lack of clarity of reasons for ineligibility
There is a potential for misunderstanding as to whether reasons are required when the patient does not meet the criteria under Schedule 4, section 2(a) – (h). The introduction to section 2 speaks to the practitioner giving an indication as to (a) whether the patient met or (b) did not meet the criteria. However, in the itemized criteria [2(a)-(h)] it only speaks to the practitioner having to provide reasons when the patient meets the criteria (and not when the patient has not met the criteria). It would be helpful to specify that reasons should be required when the patient does and does not meet the criteria. This is also crucial for the publication of the Minister of Health’s annual report requiring that the reasons, and which eligibility criteria were not met, be addressed.
The CMA recognizes the importance of regulations to capture the provision, collection, use, and disposal of information for the purpose of monitoring MAiD. The CMA cautions against introducing reporting requirements that are beyond the scope of the legislation.
As noted in the legislation, practitioners who fail to provide information under the regulations may be found guilty under the Criminal Code and subject to possible imprisonment. It is thus imperative that the federal government drafts clear regulations that respect the legislation, privacy, research ethics, and a de minimus approach.
1. Protection and disclosure of the information
This is a foundational component of any regulatory framework for both practitioners and patients/requestors. The CMA recommends placing greater emphasis on the protection of privacy by
a. conducting a privacy impact assessment, with input from the Federal Privacy Commissioner (if that hasn't already been done).
b. requiring, as part of the regulations, privacy/data sharing agreements in instances when
o data is shared to meet the objectives outlined (p. 2); and
o information collected under the framework will be made available to designated provincial and territorial government bodies for their use (p. 3). This is particularly important given that this involves the collection of identifiable (private) information about practitioners and patients/requestors.
c. using aggregate data where applicable.
d. providing greater detail on how the "Rigorous protection of all personal information (patient and practitioner) will be a paramount feature of the monitoring regime" - such detail is essential even in the preliminary stages of developing a monitoring and reporting system.
2. Further specification of what constitutes a request
As is currently stated, what constitutes a request is not sufficiently defined, i.e., what constitutes a "written request"? Is any written request a request? What about for those who can't (or who can no longer) write? Further specifying what constitutes a request is especially important since the practitioner has to document the circumstances of the request in every instance, including where follow-up is required and a report has to be filed as part of a follow-up.
A timeframe of 10 days to file a report is alarmingly short. It is commonly known that physicians already feel burdened by paperwork and it is highly likely that they would find it nearly impossible to meet this requirement. This could conceivably deter physicians from choosing to provide assistance in dying or participate in an assessment under threat of criminal sanction, potentially significantly impacting patient access.
Information required for this category includes "results of the eligibility assessment". It should be required to explicitly include reasons why the patient/requestor was deemed ineligible.
5. MAiD self-administered
a. The application of safeguards should be a specific category requiring reporting (and not simply used an example).
b. To assess (in)consistency of emerging practices and the variability of provincial legislative or regulatory requirements, it would be worthwhile to require stating whether the practitioner was present during the self-administration.
6. Coroners and medical examiners
When the monitoring regime (periodically) requests information from Chief Coroners or Medical Examiners:
To assess (in)consistency of emerging practices and the variability of provincial legislative or regulatory requirements, it would be worthwhile to gather data on who completes the death certificate and the information included on the death certificate.