June 9, 2022 | EXPLAINER
In a previous Explainer, The reasons for having a Representative – No means No, we referred to the current work of the Special Joint Committee (Senators and MPs) on Medical Assistance in Dying (MAID), mandated by Parliament to conduct a Statutory Review of the Provisions of the Criminal Code Relating to Medical Assistance in Dying and their Application.
One of the main deficiencies in the current legislation which came into force in March 2021 is the absence of advance requests by individuals to receive MAID if and when they reach a point where life, on their terms, is intolerable but they are no longer cognitively capable to give informed consent. This legal limbo affects thousands of people who believe they are facing a long gradual deterioration of brain function due to a variety of underlying irremediable pathologies that can lead to advanced dementia. But it also applies to any of us who could find ourselves with a sudden incapacitating brain injury from a motor vehicle accident.
The current session of Parliament is due to end June 23, 2022. The Committee has been meeting regularly since early April, hearing from dozens of ‘witnesses’ and reviewing nearly 300 written briefs.
The Committee is required to present a final report to the House of Commons and Senate by October 17, 2022.
In this article, we focus on the brief submitted by the Canadian Bar Association (CBA) on behalf of Canada’s 36,000 jurists (lawyers, notaries, law teachers and students).
Of particular interest and relevance to our recent reporting are the CBA’s comments and recommendations related to Advance Requests for MAID. They are very specific in their detailed proposal of how Advance Requests would be created, respected and protected.
Rather than paraphrase, we are providing the full text of the CBA’s position paper supporting their summarized recommendations regarding Advance Requests for MAID:
A: Clarification
We use the term “Advance Request” to mean a request for MAID by a capable person (Applicant) who has been diagnosed with a grievous and irremediable medical condition, where the request is triggered in the event of the Applicant’s subsequent incapacity and on the occurrence of specified future circumstances detailed in a written document (Triggering Conditions).
This concept is distinct from the circumstances addressed in section 241.2(3.2) of the Criminal Code where a qualifying individual has already requested and given consent to MAID, but loses capacity before it can be administered. An Advance Request can be viewed as an independent step in planning for incapacity by a capable person following a qualifying diagnosis, since it offers a mechanism to defer MAID until the occurrence of future Triggering Conditions, without risking the inability to proceed at that time should the Applicant lose capacity in the interim.
B: Support for Advance Requests
We believe that Advance Requests respect the fundamental Charter principle of security of the person, and the sanctity of personal autonomy. Advance Requests allow an individual to access MAID later (in accordance with their prior capable wishes) and addresses existing concerns that the risk of future incapacity may make MAID inaccessible, resulting in a person accessing MAID earlier than he or she might want. In other words, if a person must have capacity at the time of requesting MAID, then a person must access MAID while still capable even if the person is not yet ready to die. If they wait and risk incapacity, they will not be able to access MAID at all (unless there is a framework for Advance Requests).
Recent surveys demonstrate an overwhelming support for Advance Requests. For example, 79% of respondents to the 2020 federal government’s questionnaire on MAID were in favour of Advance Requests. Further, 83% of respondents in a 2021 Ipsos poll supported Advance Requests for persons with a diagnosis of a grievous and irremediable condition.
Also, most members of the Canadian Association of MAID Assessors and Providers (CAMAP) were open to Advance Requests. In a member survey, 82% stated that they would be willing to assess patients who had made an Advance Request but had since lost the capacity to make their own healthcare decisions. And 76% of members would be willing to provide MAID to an eligible patient who lacked capacity but had made an Advance Request.
C: Legislative Framework
In our view, Advance Requests for MAID can best be achieved by setting out a specific framework in the Criminal Code. This framework should address all requirements including the necessary documentation to establish and trigger an Advance Request. The regime should also address the protections, indemnification and release of liability for all parties acting in good faith. These protections would be especially important for the MAID Agent (discussed in Section G below).
The existing Criminal Code criteria for MAID, as applicable, should be part of Advance Requests, namely the capacity to make an Advance Request and informed consent requirements.
D: Only After Diagnosis
A person should be eligible to make an Advance Request only after a diagnosis of a grievous and irremediable medical condition, but before their suffering becomes intolerable. This safeguard permits a fully informed consent – requiring discussion on the condition’s trajectory, treatment risks and benefits, and means to relieve suffering.
E: Declaration (prescribed form)
Given the critical nature of Advance Requests, we recommend using a prescribed form (Declaration). The contents of the Declaration should be specifically mandated in the Criminal Code (or regulations) and include:
• naming a person (MAID Agent), including an alternate, where possible, who would initiate an assessment of whether the Applicant’s Triggering Conditions for an Advance Request have been met. The MAID Agent would then make treatment decisions on the Applicant’s behalf in accordance with the terms of the Declaration and applicable law;
• delineating the Triggering Conditions that would constitute intolerable suffering for the Applicant and would require the MAID Agent to act on the Advance Request;
• signature of the Applicant;
• signature of the named MAID Agent (and alternate, if applicable) acknowledging a willingness to act;
• signature of the Applicant’s physician attesting to the communication of the diagnosis and the requisite discussions for informed consent; and
• witness requirements and instructions.
For the witness requirements, we recommend requiring two witnesses and that they be of the age of majority. We also recommend adding restrictions on who can be a witness. For example, we do not believe that the following individuals should be witnesses: i) MAID Agent; ii) spouse, partner or child of the MAID Agent; and iii) spouse, partner or child of the Applicant.
Consideration should also be given to which parties (including institutions, such as a long-term care or retirement facility) should be entitled to a receive or request a copy of the Advance Request (and any Revocation by the Applicant or Renunciation by the MAID Agent).
We also recommend that the Declaration include suggestions on the following points to ensure they are considered by the Applicant when making an Advance Request:
• whether to consult a lawyer; and
• whether to inform relevant parties (such as family) that an Advance Request has been created and where the document is located.
F: Revocation of Declaration (prescribed form)
A Declaration should be revocable by using a prescribed form (Revocation). The requirements for a Revocation should be included in the governing framework in the Criminal Code (or regulations). We recommend that a lower level of capacity be required to revoke an Advance Request than the level of capacity required to make an Advance Request.
G: MAID Agent
We contemplate a process where the Applicant names a MAID Agent (including an alternate whenever possible), who would initiate an assessment of whether the Applicant’s Triggering Conditions for an Advance Request have been met. When an Applicant has lost capacity and it appears the Triggering Conditions may have been met, the MAID Agent would initiate an assessment to determine if the Triggering Conditions are in fact satisfied.
For consistency with the existing MAID qualification process, the assessment should be conducted by two physicians or nurse practitioners (their qualifications mirroring existing requirements). A key question in framing a regime for Advance Requests is, once these assessments have been made, who can then request that MAID be administered? In our view, it should be the MAID Agent.
An Advance Request can be viewed as an independent step in planning for incapacity by a capable person following a qualifying diagnosis, since it offers a mechanism to defer MAID until the occurrence of future Triggering Conditions, without risking the inability to proceed at that time should the Applicant lose capacity in the interim.
End of Life Working Group of the Canadian Bar Association, May 09, 2022.
If the assessing physicians or nurse practitioners determine that the Applicant is refusing MAID or may have changed their mind (see Section J below), even in the absence of a formal Revocation, there must be safeguards to ensure that the MAID Agent does not proceed with a request for MAID.
Consideration should also be given to the situation where the Triggering Conditions are determined to be satisfied but a MAID Agent refuses to make the request for MAID, and whether this should trigger a right of review (see Section K below).
To prevent abuse, we recommend adding restrictions on who can be a MAID Agent, for example, a minimum age and a prohibition against naming a paid caregiver or other person providing health care services to the Applicant. These limitations could be similar to existing restrictions on the appointment of an attorney for personal care in certain jurisdictions.
Consideration should also be given to other restrictions. For example, should entitlement to inherit on the Applicant’s death disqualify someone from being a MAID Agent? If so, could there be exceptions (with or without additional safeguards) for the Applicant’s spouse, child or other person?
We also recommend permitting a MAID Agent to renounce the appointment and suggest a prescribed form (Renunciation) that would include related requirements.
H: Independent of Existing Legislative Regimes for Substitute Decision-making
Most provinces and territories have a legislative regime for substitute decision-making about health care. Given that an Advance Request would name a MAID Agent with a specific and narrow mandate, we propose that the MAID process for Advance Requests be outside the existing legislative regimes for health care decisions (which typically have default provisions for substitute decision-makers). However, a MAID Agent could be the same individual as the Applicant’s named substitute decision-maker.
I: Triggering Conditions
The Triggering Conditions constituting intolerable suffering to the Applicant would be subjective – as is the case in the existing Criminal Code MAID regime. However, for Advance Requests, the conditions must be described with sufficient clarity and specificity to allow an objective assessment of whether the Triggering Conditions have been met, underscoring the need for a full discussion as an essential part of the Applicant’s prior informed consent. While Triggering Conditions will be very personal, examples could include:
• inability to recognize family or friends consistently for a defined period;
• inability to speak or to communicate by any other means;
• permanent confinement to bed;
• inability to attend to one’s activities of daily living (as specified) with no reasonable prospect of a reversal of this condition.
J: Demonstration of Refusal by Applicant
The Criminal Code prohibitions on administering MAID to an individual who demonstrates refusal or resistance by words, sounds or gestures should also apply to MAID by Advance Requests, despite a determination that the Triggering Conditions have been satisfied. In other words, current wishes of the Applicant (whether capable or incapable) should prevail over the Advance Request.
K: Rights of Review
The legislative framework should address rights of review for the MAID Agent and other persons in any of the following situations:
• whether the Triggering Conditions have been satisfied;
• whether the circumstances dictate that the MAID Agent is required to request MAID;
• whether the Applicant has demonstrated refusal or resistance by words, sounds or gestures If rights of review are granted, the appropriate process and forum must also be determined.
L: Default Authority
If a MAID Agent is unable or unwilling to act, there should be a default authority (such as a legislative appointee or government body) empowered to act as a last resort to give effect to an Applicant’s Advance Request. Consideration could also be given to having this appointee or body also serve as the review body discussed in Section K above.