Not fit for purpose: Model Practice Standard for MAiD

“Not fit for purpose: Model Practice Standard for MAiD”

(Expanded) Brief[1] submitted to the

Special Joint Committee on Medical Assistance in Dying

Toujours Vivant-Not Dead Yet

November 16, 2023

In March of 2023, Health Canada released Model Practice Standards (MPS) for Medical Assistance in Dying (MAiD). The MAiD providers and promoters who made up the MPS Task Group broadened the mandate of the Expert Panel on MAiD and mental illness to apply to all MAiD requests after March 17, 2024, including where the requester’s only medical condition is a mental disorder. An analysis of the MPS reveals incongruities, errors, missing elements, policy changes outside the legislative process, low compliance standards, and insufficient guidance for MAiD assessors and providers to competently carry out their responsibilities under the program.

Presented in three documents – a Background document (BD), the Model Practice Standard (MPS), and an “Advice to the Profession” (A-to-P) FAQ – the MPS offers an inconsistent approach to the information. This is most apparent in problems accompanying terminology and definitions, which are often contradictory, self-referential, imprecise, and inadequate:

Definitions

Some terms are not explained or defined, but simply restate the statutory language, e.g. “Disability support services,” (MPS § 10.3.5.1) “External pressure,” (MPS § 9.1.3) “Palliative care,”[2] “Reasonable Knowledge Care and Skill,” (MPS § 3.0) and “voluntary request” (MPS § 9.1.3).
Some concepts are introduced without definition or reference to the statute. See e.g., MPS § 8.7 “Providers must ensure safe prescribing, use, storage, and return of substances related to the provision of MAID.”
Some terms should be synonymous but are not; MPS § 9.1.2 refers to capacity to make decisions with respect to health” while MPS § 9.3.1 and § 9.3.2 refer to “decisions with respect to MAiD.”
Different terms are used to express the same idea, e.g. “Collateral information” (MPS § 10.3.4.2) versus “Collateral History” (A-to-P #8).
As well, the Practice Standard uses multiple variants on “the means to relieve suffering”:
- “reasonable and available means to relieve [the person’s] suffering,” is found in MPS § 8.10, 10.2.9, and 10.3.6, but is not defined.
- “means available to relieve suffering” appears at MPS § 9.11.2, 10.2.8 10.3.5, and in A-to-P #s 9a) and 9b),
- “means available” occurs at MPS § 9.7.2(a) and is defined at § 10.3.5.3 as “available means that are reasonable and recognized.”
MPS §§ 9.4 through 9.7 explain what constitutes a “Grievous and irremediable medical condition,” without defining terms such as “grievous,” “irremediable” and “recognized, available, and potentially effective treatments.”
- Where terms are defined, (such as “incurable” (MPS § 9.5.2, A-to-P 3a), 3b)) “capability” (MPS § 9.6.2), “advanced state of decline” (MPS § 9.6.3) and “Irreversible” (MPS § 9.6.4)), they appear not in the Glossary, (which would indicate global applicability) but only in the section that explains eligibility.
- In addition, the definition of ‘incurable’ mentions “reasonable treatments” without specifying whether this includes promotive, preventive, curative, rehabilitative and/or palliative care. Nor does the MPS address whether a treatment not covered in the person’s provincial health plan (or another province), would be considered “reasonable,” or if the cost (to the province or to the individual), the travel burden or wait time would render them “inaccessible;” (as described in A-to-P # 3b).
The (ambiguous and undefined) phrase “person requesting MAiD” appears 13 times.[3] The phrase is probably supposed to indicate the person who is asking to die; it is ambiguous because substitute decision makers, family members and medical providers sometimes ask for MAiD on a person’s behalf. Nor is the ambiguity resolved by cautions against “conduct[ing] an assessment for MAID” (MPS § 8.8) or “provid[ing] MAID on the direction of anyone other than the person requesting MAID,” (MPS § 8.4) or even the requirement that “[p]roviders must obtain informed consent directly from the person requesting MAID, not the substitute decision-maker of an incapable person” (MPS § 9.10). The term should be clearly defined in the Glossary, with reference to each section where it occurs in the Practice Standard documents.
The Glossary (MPS § 17.0):
- Includes terms not used in the MPS (such as “Health Professional Association”)
- Omits terms that are in the statute, the MPS and “Advice to the Profession” documents, such as “Counseling services” and “mental health services,” (MPS § 10.3.5.1) “serious consideration,” (MPS § 10.3.6, A-to-P # 9b) “structural vulnerability,” (A-to-P #13) and “safely and competently” [assess eligibility for or provide MAiD] (MPS § 4.2).[4]
- Omits terms that are defined in their statutory context but that also have global application, such as: “advanced state of decline,” “consult with,” “incurable,” “irreversible,” and “voluntariness”/”voluntary request”
- Omits the terms “Should” and “Must” which “articulate the regulatory authority’s expectations”[5] and are defined in the preamble. The word “May” is used in a similar manner[6] but is not defined in the preamble or the Glossary.

Incomplete / missing elements

The MPS is incomplete and lacks important elements,[7] such as:

Procedures for obtaining or overseeing the waiver of final consent (MPS § 13).
Procedures for implementing advance consent – self-administration (MPS § 14). This applies only to the narrow exception described in § 241.2(3.5) of bill C-7 which allows a practitioner to administer a lethal substance should self-administration (assisted suicide) fail.
Procedures governing self-administration of MAiD (assisted suicide) or for provision of euthanasia (MPS § 15).
Procedures for documenting MAiD (MPS § 16.0) and other outcomes, such as:
- whether the person was advised of MAiD, (MPS § 6.3.3).
- completing required documentation, (MPS § 8.2.3).
- the reasoning and evidence on which a capacity determination is based (MPS § 9.3.6).
Any obligation to provide suicide prevention assessment or intervention EXCEPT where the person making the request is found ineligible for MAiD.
The “Effective referral” requirement of timeliness found at MPS § 5.2.1, and 6.4 are not applied to palliative care, disability supports, and mental health services. This reflects Health Canada’s continuing mission to make access to death ever broader, easier and faster, while relegating services in aid of living well to lower priority. The timely access mandate must be expanded to cover services and supports that reduce requests for euthanasia.

Modifying policy without legislative approval.

Practices that have evolved over the first seven years of MAiD implementation are justified, delimited, and codified by the Practice Standard to legitimize them. Examples include:

broadening MAiD eligibility. BD p. 2 ¶ 3 mentions “cases of mental disorder as a sole underlying medical condition (MD-SUMC) bear many clinical similarities when compared with some other cases already permitted under the new ‘Track 2’” and “persons with mental disorders were already accessing MAID provided they had another qualifying condition.”
Acknowledging the practice of “doctor shopping.” MPS § 10.2 refers to an “eligibility assessment for the current request,” implying that multiple MAiD requests by the same person are expected, tolerated, and accommodated. The A-to-P #8 also refers to doctor shopping in the context of “past MAID assessments.”

The Practice standard also changes policy outside of the legislative process.

Sections of the MPS would limit (the scope and application of) the right to be informed of the means to relieve suffering.
- Bill C-14 § 241.2(1)(e), states that MAiD eligibility requires “informed consent … after having been informed of the means available to relieve their suffering, including palliative care.”
  - The person must be informed of the means to relieve suffering in order to satisfy eligibility criterion, and
  - The section applies to all MAiD applicants, regardless of whether they have a reasonably foreseeable natural death.
- MPS § 6.1 states that practitioners “must take reasonable steps to ensure persons are informed of … treatment options available to relieve suffering.”
  - “Take reasonable steps” is a lower standard than the “informed consent” requirement for eligibility.
- MPS § 8.10, (footnote 15) states that “[w]hile an assessor may discuss the means available to relieve the person’s suffering for persons under Track 1, it is only a Criminal Code requirement that both the assessor and the provider do so for persons under Track 2.”
  - Requirement for eligibility equals “must.”
  - The right to be informed is not restricted to track 2.
- MPS § 8C omits any duty (on assessors) to inform people on track 1 of the means to relieve suffering.
- MPS § 10.3.5 is labeled “Means available to relieve suffering (only Track 2).”
The discrepancy between MPS § 9.1.2 “capacity to make decisions with respect to health” and MPS § 9.3.1 and § 9.3.2, referring to “decisions with respect to MAiD” is either a significant error or an attempt to change policy.

Clarification needed.

MPS § 4.2 and A-to-P #10 state that practitioners must have “sufficient training and experience to safely and competently” assess eligibility or provide MAiD.
- Despite the fact that every person who asks for MAiD has a disability – whether or not they self-define as “disabled” – Health Canada and Parliament have thus far refused to recognize the prevalence of disability and the effects of disability discrimination among people asking for help to die. “Sufficient training, experience and qualifications” should therefore include a grasp of the (medical, social and disability justice) models of disability, and the role of barriers and discrimination in limiting the life options available to disabled people.
- The “special training” recommended for Assessors and Providers (“trauma-informed care, and cultural safety and humility”) does not mention ableism; though the definition of Cultural Safety does refer to racism and gender bias. Nor does it take into account that disabled people share a legacy of language and cultural deprivation, eugenic practices, poverty, medical abuse and health disparities, exclusion, forced institutionalization, disenfranchisement and physical or sexual violence (and thus disproportionate rates of trauma) similar to that experienced by other oppressed groups.
At MPS § 6.5, the practice standard requires practitioners to “take reasonable steps to ensure the person does not perceive coercion, inducement, or pressure.”
- There is no indication whether this caution is meant to govern the practitioner’s own behaviour, or whether they are charged to prevent coercion, inducement or pressure from other sources, such as the medical team, the person’s family, or entourage.
- Also, a cynical view would point out that the caution is against the person “perceiv[ing]” coercion or inducement; does that mean if the person is unaware that they’re being coerced, no violation has occurred?
MPS § 9.3.2 states that the person must have capacity “at the time of the MAID assessment.” This ‘snapshot’ approach is seemingly contradicted by MPS § 9.3.3 which provides that “As capacity is fluid …, practitioners must be alert to potential changes” and recommends that “assessors and providers should undertake serial assessments of … capacity.”
The definition of “incurable” (MPS § 9.5.2) mentions “reasonable treatments” without specifying whether a treatment not covered in the person’s provincial health plan, would be considered “reasonable,” or if the cost, travel burden, wait time or other factors would render them “inaccessible;” (as per A-to-P # 3b).

Capacity determination

It is unclear whether the guidelines for capacity assessment contained in MPS § 9.3 are meant to satisfy “clinical standards and legal criteria” referred to, but not described, in MPS § 9.3.5.
MPS § 9.3.2 proposes a modified Appelbaum standard for determining capacity, where the abilities to understand, appreciate, reason and express a decision are whittled down to the ability to “understand and appreciate,” and applied to three topics; the history and prognosis of the medical condition, treatment options, risks and benefits, and that the outcome of MAiD is death.
- This requires that the person be given information that is not statutorily mandated for people whose natural death is “reasonably foreseeable … without a prognosis necessarily having been made as to the specific length of time that they have remaining.” If a prognosis has not been made or communicated, how can the person’s capacity be determined based on their ability to understand and appreciate the implications of the prognosis?
- Also, as Dr. Madeline Li pointed out in the expert report she submitted in the Lamb case, the Appelbaum criteria “focus only on the cognitive aspects of capacity – which represents a low bar that only those with significant cognitive impairment would fail to reach.” (at ¶ 15).
The Practice Standard recommends that “where appropriate, assessors and providers should consult with clinicians who have expertise in capacity assessments (MPS § 9.3.4) but fails to mention how such experts would be identified, or what circumstances would make such a consultation “appropriate” or necessary.
No guidance as to format, deadline or recipient/audience is provided for assessors and providers to “document the reasoning and evidence upon which their assessment of capacity is based” (MPS § 9.3.6).

Low compliance standards

The MAiD statute (at § 241.1(d)) says that a voluntary request is one that “in particular was not made as a result of external pressure,” but “external pressure” is not defined in the statute, the regulations, or the Model Practice Standard. The MPS Task Group excludes socio-economic pressures from its discussions of “external pressure,” limiting it to “undue influence” (with no mention of abuse or coercion, despite the high rates of abuse documented against elders and disabled people). This shifts the focus away from poverty, discrimination, and other systemic causes that prompt people to ask for death.
- The discussion of suffering at MPS § 9.7.2 limits “all dimensions” of suffering to “physical, psychological, social, [and] existential,” emphasizing that “the person’s illness, disease, or disability and/or state of decline in capability … is the cause of the person’s suffering,” without reference to “external pressures.”
- The explanation of Voluntariness at MPS § 9.8 also omits “external pressure,” saying that “assessors and providers must be satisfied that the person’s decision to request MAID has been made freely, without undue influence … from family members, health care providers, or others.” Nor does the section explain how practitioners should determine whether the person has been subjected to interpersonal pressure.
- The section on involuntary hospitalization (MPS § 9.9) says nothing about institutionalization due to lack of home-based services.
- A-to-P #13b) says that practitioners should “strive to be aware of structural vulnerability and how associated systemic barriers and biases against MAID requesters may have affected their interactions in the healthcare system and their ability to access appropriate resources” not whether their request was voluntary. Imposing a de minimis obligation (that practitioners “strive to be aware” of “barriers and biases”) absent any obligation to remediate the effects of discrimination and exclusion, makes the statutory protection against “external pressure” meaningless.
Health Canada has failed to correct the low priority given to communication access in the procedural safeguards, which remain at the end of the checklist (MPS § 10.1.7, 10.2.11). This despite studies showing that 33-53% of people using mechanical ventilation need communication access,[8] and that failure to ensure effective communication can lead to patients feeling helpless, anxious, and frustrated, and contribute to medical errors, unnecessary pain, confusion about medication regimes, and human rights violations. The MPS should mandate that effective and impartial receptive and expressive communication is ensured from the first interaction between the person and MAiD assessors and providers.
MPS § 10.3.4 states that “[f]orming an opinion about MAID eligibility may require the provider or assessor to undertake certain actions.” This sets a very low standard for compliance because, unlike “Should,” and “Must,” the word “may” is not defined in the preamble, and so does not articulate any expectation on the part of the regulatory authority.
Practitioners’ assessments of potentially suicidal persons (MPS § 11.1) are also subject to low standards.
- they must take steps to ensure that the person’s request is:
  - Consistent with the person’s values and beliefs,
  - Unambiguous and enduring,
  - Rationally considered,
  - Made during a period of stability, and
  - Not made during a period of crisis.
- … (which may require serial assessments).
- This mandate sends mixed signals:
  - “Must” implies an obligation, but “take steps” suggests that minimal action is required.
  - “May require serial assessments” indicates a low expectation by the regulatory authority.
- “Take steps” plus “ensure” puts the action at a second degree of remove from certainty of being carried out.
- Also, mandating referrals for suicide prevention only where the person has been deemed ineligible for MAiD makes no sense (MPS § 11.3). By definition, a person requesting MAiD is expressing a desire to end their life and is therefore suicidal; everyone who asks for help to die should receive suicide prevention services, not just a referral for such services.

Virtual safeguards

Section 12 (Virtual care) establishes a new, lowered standard of protection without benefit of legislative approval. The Task Group would allow capacity assessments to be done “virtually,” via remote contact. Several potential problems emerge:

Assuming that “virtual care” and “virtually” are synonymous and agree with the glossary definition (“encompasses all means by which healthcare providers remotely interact with their patients using communications and digital technology”)
- “Virtual Care” would include phone calls, video conferences, emails and text messages.
- Section 12.1 says practitioners “may assess a person’s request for MAiD … virtually.”
  - Presumably this means assessing the person’s eligibility, including whether they have a grievous and irremediable medical condition or are in an advanced state of irreversible decline.
  - Would it therefore be permissible to make such assessments over the phone, or via email or text message?
MPS § 12.2 applies restrictions to virtual MAiD eligibility assessments. The provider must:
- “confirm the person agrees with the assessment proceeding virtually.”
  - “Confirm” assumes a starting point of accord.
  - Given the power imbalance between provider and petitioner, and the requester’s sense of urgency, it is unlikely the person will object to an expedited, if less thorough, evaluation.
- “Determine[s] that a valid conclusion can be drawn about the person’s eligibility for MAID.”
  - The phrase “valid conclusion” is not defined or explained in the MPS.
  - If the practitioner has elected to do a remote assessment, the validity of that assessment’s conclusion was probably not a factor in their decision to do it virtually.
- “Ensure that the assessment aligns with the provisions of other relevant College Standards.”
  - Presumably this refers to the manner and process by which the assessment is performed, rather than to the outcome of the assessment.
  - The MPS does not provide guidance on what information exchange, examinations and assessments can be effectively carried out via text message, by email, by phone call, or which require an in-person consultation.
In what universe would Virtual Care (or any part of the Model Practice Standard, for that matter) satisfy the Carter mandate of “a carefully designed system imposing stringent limits that are scrupulously monitored and enforced?”

[1] This is an extended version of the brief submitted on November 16, 2023, available at https://www.dropbox.com/scl/fi/3k618xzrh8qshvkb7lqdb/ParlAMADCommBrief1K1123EN.docx?rlkey=ur16tg49gfctev459tbe8c9zf&dl=0.

[2] MPS §§ 9.1.4, 9.11.1, 9.11.2, 10.2.8, 10.3.5.1

[3] MPS §§ 5.3, 8.1, 8.4, 8.8, 8.9, 8.10, 9.1, 9.3.1, 9.10, 9.11.1, 9.11.4, 10.1.3 fn 17, 10.3.4.3 (a) and three times in the glossary, but never with its own definition.

[4] See also (related) terms “knowledge and experience” in A-to-P#1 ¶ 5, #10 #11a) ¶ 2.

[5] MPS § 1.0 ¶ 3.

[6] See, e.g. MPS §§ 8.10 fn 15, 10.3.4, 10.3.5.4, 11.1, 12.1.

[7] The explanation in the note before § 13 – stating that “sections 13.0 to 16.0 are intentionally left blank…” is inadequate to justify providing, or promoting the use of, an incomplete practice standard.

[8] Hurtig, Richard R et al. “The cost of not addressing the communication barriers faced by hospitalized patients.” Perspectives of the ASHA special interest groups vol. 3,12 (2018): 99-112. doi:10.1044/persp3.SIG12.99 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6402813/pdf/nihms975159.pdf

This document can be viewed at: https://docs.google.com/document/d/1Prq4y0JhiEGS0rPTLbmDiZppso2gZg3DSiKik7-Uf8g/edit?usp=sharing