AMAD Committee Report

This report is intended to be complementary, but I would like to raise certain questions about the wording of the final recommendation and reservations about the methodology and organization of our work in order to fulfill our task (e.g. sitting and deliberating by extended deadlines) since them beginning of the work of the Joint Special Committee (JSC) on the MA. I would like to pay tribute to the staff of the Library of Parliament for the commitment they have shown and the work they have accomplished during the course of this study, and above all I would like to thank all the witnesses who have participated in this study in whatever way, by giving evidence and/or sending a brief.

• The source of the problem
• 1-      We deplore the fact that, since the Carter decision[1] , the federal government has been dragging its feet when it comes to MA, forcing parliamentarians to work in a hurry to meet often unrealistic deadlines in conditions that are far from optimal from both a methodological and work organization standpoint. Our latest meeting is a clear example of this.

• From extension to extension
• 2-      Extending a deadline without changing the organization of the work once the deadline has been obtained, which was initially unstable due to the lack of time, merely perpetuates an unstable extension of the work. Just think of the requests for extensions of time since the CARTER RULING. On the other hand, throughout the work of the Joint Special Committee, we need only list all the times when, in the closing remarks of a panel or session, the committee chairmen, addressing the witnesses, apologized for the short time we had devoted to them. For example, receiving three specialists in the same hour and giving them just 5 minutes of presentation time, without having received their briefs in advance (sometimes because they had been called in at the last minute, or because there wasn't enough time for translation), in order to better prepare the exchanges. Or placing three expert panellists per hour, some of whom will barely be questioned because the witness is of no interest to the other parties... This is far from optimal. We should have drawn inspiration from the exemplary methodology used by ASSNAT (Quebec's National Assembly) in its work on MA.
• 3-      The other source of the problem is that, unlike ASSNAT, the Canadian Parliament will never see a consensual or transparent approach to the organization of work, because the Conservatives are incapable of being non-partisan when it comes to MA. Any means are good enough to put obstacles in the way.
• 4-      While Ottawa was incapable of proactivity and a transparent approach, in 2012 the Quebec National Assembly (ASSNAT) began transparent work and consultations that would lead three years later to the first "law concerning end-of-life care[2] ". As for the Canadian government and the House of Commons, they refused to be proactive on the subject of MAID, rejecting Francine Lalonde's bills, for example, and failing to introduce any government legislation on the subject.
• 5-      In fact, when it comes to MAID, it was the Supreme Court that forced the House of Commons in 2015 to amend the Criminal Code in response to patients' demands that their constitutional rights be violated.
• 6-      As for our recent work in connection with recommendation 13 of the report of the Joint Special Committee (JSC) on the MAID tabled in February 2023[3] , it is clear that the government's reluctance to reconstitute the committee at the end of September, so that the JSC could sit at the beginning of October, will have had the effect of limiting the timetable of work sessions and adopting a more appropriate methodology. It is regrettable that we did not have access to the briefs of the main expert witnesses directly related to the specific mandate under study, nor did we have access to the additional information requested to establish the relevance of certain testimonies.

• On the substance: the need to open medical aid in dying (MAID) to MD-SUMC
• 7-      The Bloc Québécois is of the opinion that the Carter decision and the Beaudoin ruling[4] justify opening up MAID to people with MD-SUMC whose chronic suffering has become intolerable.
• 8-      The courts (Carter decision, Beaudoin ruling) have established that, on the merits, an absolute ban on MAID for people with a mental disorder as their only claimed medical problem (MD-SUMC) would be discriminatory and unjustified. Why should the State infringe or restrict the right to self-determination of a person with a MD when his or her decision-making capacity is not affected?
• 9-      The role of the State is not to pretend (in a matter as intimate as one's own death) to know better than the person facing intolerable suffering what is best for him or her (beneficence). The role of the State is to ensure the conditions for the exercise of a free and enlightened choice on the part of the individual.  
• 10-  Law and clinical ethics have already recognized the patient's right to self-determination. Free and informed consent, an informed decision, the exercise of the patient's decision-making capacity when it has been properly established according to the rules of the art, is opposed to medical paternalism. Thus, bioethics literature explains that we have moved on from the notion of therapeutic obstinacy to the recognition of the right to die. From that point onwards, curative relentlessness motivated by medical paternalism had to make way for the patient's will and right to avail himself of palliative care, comfort care and, later, MAID. On the other hand, this respect for the suffering patient's autonomy and right to self-determination has led, in clinical practice and in law, to the recognition of the refusal of vital treatment and the cessation of treatment as elements of good medical practice.
• 11-  Why should it be any different for certain patients with a mental disorder whose suffering has become intolerable and whose chronicity has been established over time, and whose medical records show beyond doubt that all available treatments have been given without any permanent improvement or significant alleviation of the suffering that has become intolerable?

• Applying does not mean being eligible
• 12-  The Report of the expert group[5] which suggested the conditions under which MAID could be extended to MD-SUMC are clear. Just because a patient applies does not mean he or she is eligible.
• 13-  According to Stephanie Green[6] , a person is ineligible:
• a)      In suicidal crisis
• b)      Newly treated and diagnosed
• c)      Demand based on structural vulnerabilities
• d)      Refuses without justification all treatments that could improve his condition
• e)      If there are accessible and effective treatments
• f)       If the assessors are unable to give an opinion on all or some of the criteria

• 14-  Recognizing that irremediability and incurability are not always as easy to establish for MD as for Track 1 illnesses (although the intensity of suffering may be similar), and that suicidal ideations must be distinguished from a thoughtful and constant desire for MAID, the Collège des médecins du Québec has drawn up guidelines, five conditions to avoid any drift[7] :
• a)      Firstly, the decision to grant medical aid in dying in a case of mental disorder must not be part of a single episode of care, but must be based on a comprehensive and fair assessment of the patient's situation.
• b)      Secondly, there must be no suicidal ideation, as in a case of major depressive disorder.
• c)      Thirdly, intense and continuous psychological suffering, confirmed by severe symptoms and impairment of overall functioning, is present over a long period and deprives the patient of any hope of relief from the severity of his or her situation. It prevents them from realizing a life project, and makes their existence meaningless.
• d)      Fourthly, there must be a long course of care, with appropriate follow-up, multiple trials of available therapies recognized as effective, and sustained, proven psychosocial support.
• e)      Fifth, a multidisciplinary assessment of the request must have been carried out in the essential presence of the physician or specialized mental health nurse-practitioner who followed the person, and a psychiatrist consulted in the specific context of the request for medical assistance in dying.

• 15-      The CMQ concludes:
• a)      We believe that, if these guidelines were respected, people suffering from a serious and irreversible mental health disorder could also benefit from medical assistance in dying. We must avoid a situation where people who do not have access to appropriate care, who do not find the services offered acceptable - for example, prolonged accommodation with no prospect of regaining greater autonomy - opt, in desperation, for medical aid in dying.

• Preparedness for safe and effective application
• 16-  Evidence of de facto accessibility linked to a uniform degree of preparedness across Canada for safe and adequate application of MAID for MD-SUMC has not been demonstrated, because the JSC (Joint Special Committee) did not hear from all regulatory authorities from coast to coast. However, we cannot ignore the fact that Quebec has decided not to go ahead with MAID for MD-SUMC and that the Collège des médecins, while in favour of MAID for MD-SUMC, clearly indicated in response to Senator Mégie's questions that it was still at the conversation stage, and that there was still work to be done in Quebec, while reaffirming that it would be desirable "one day" for MAID for MD-SUMC to be accessible to patients[8] .

• Resistance in care settings and patient suffering
• 17-  Psychiatrists are divided on the question of MAID for MD-SUMC, practically into two groups, mainly on the question of irremediability and irreversibility. Patients cannot be left to grapple with the potential consequences of this field resistance. For example, let's not forget the lessons of the Morgentaler ruling[9] , the Badgley and Powel reports on provincial and institutionnal limitations on access to exculpatory measures, which became illusory in practice, and the harm this could cause patients. The Committee did not have the opportunity to explore the concrete clinical and practical consequences that its resistance would have on patients.
• a)      It has to be said that the «social consensus » that may or may not be necessary to move forward is clearly not there when compared to degenerative neurocognitive problems (dementia, Alzheimer's...).
• b)      In both medical circles and the general public, there is a consensus in favor of for advance requests for degenerative cognitive diseases.
• c)      Yet to date, the government has given no indication that it intends to table a bill by the end of this legislation to go ahead with early applications, despite the fact that Quebec's ASSNAT has just passed a law and that from coast to coast there is a broad consensus on the matter, with approval rates, depending on the poll, ranging from + or - 87 to 60%. This was an important recommendation in the previous CSM report. Is the government still dragging its feet? Will we have to wait for patients to commit suicide and end their lives prematurely?

• The CSM report
• 18-  So, while the report does indeed reflect what we heard and what was available to us (testimony at the hearings) to arrive at recommendations, the shaky wording of the final recommendation and the vagueness it introduces as to the timeframes required to make the MAID available to MD-SUMC accurately reflect the Committee's inability to decide the issue. However, it remains an inescapable fact that, while it must be acknowledged that some work has been done, even if the federal government has had work done upstream, with the establishment of the Task Force on Standards of Practice in accordance with the recommendation of the Expert Panel, it has not been able to give the Joint Ad Hoc Committee the time it needs to carry out rigorous, methodologically sound work to settle the issue, beyond the conviction that the degree of preparation is not uniform across the country, and that there is still work to be done.
• a)      The unfortunate consequence of this situation is that in the meantime, in real life, it is likely that MD patients like SUMC will once again find themselves before the courts to assert their constitutional rights.
• b)     Why leave this burden on the shoulders of suffering patients? Why not ask the Supreme Court right now to clarify and specifically rule on this issue.

• 19-  Reservations regarding the wording of the CSM's sole recommendation
• “Whereas the Committee concludes that the medical system in Canada is not prepared for Medical Assistance in Dying where mental disorder is the sole underlying medical condition (hereafter “MAID MD-SUMC), the committee recommends:
• a)      The MAID MD-SUMC should not be made available in Canada until the Minister of Health and the Minister of Justice are satisfied, based on recommendations from their respective departments and in consultation with their provincial and territorial counterparts and with Indigenous peoples, that it can be safely and adequately provided; and
• b)      That one year prior to the date on which it is anticipated that the law will permit MAID MD-SUMC, pursuant to subparagraph (a), the House of Commons and the Senate re-establish the special Joint Committee on Medical Assistance In Dying in order to verify the degree of preparedness attained for a safe and adequate application of MAID MD-SUMC.”
• a)      There isn't "one health care system"; there are many health care systems in Canada, each under the responsibility of the territories, the provinces and Quebec.
• b)      The Criminal Code falls under federal jurisdiction, but health care is provided by Quebec, the provinces and territories. There's no escaping this reality.
• c)      It is up to the legislator and the House to decide on the MD-SUMC MAID. However, the wording of the motion refers this responsibility to the discretionary power of the executive via the Ministers of Health and Justice and their departmental officials. This makes it unclear, to say the least, whether the law will be applied by March 17, 2024. What are the time frames involved here?
• d)      And if, by any chance, the Ministers of Health and Justice (before or after the next election?) decide that the fruit is suddenly ripe, the special joint committee should be reconstituted at least a year before the implementation of this decision, to measure the state of preparation of the ground for a safe and adequate application of the MAID for MD-SUMC. How many years would this mean?
• e)      The wording of the recommendation testifies to the committee's inability in three working sessions to make a serious decision on anything other than the fact that we are not in a position to make a decision or recommend anything to the House. Aside from one conviction, the ground is not uniformly prepared throughout the territory.
• f)       In this sense, the Bloc considers that the ground is not ready. The degree of preparation is not the same from coast to coast. In fact, as far as Quebec is concerned, the testimony of the Collège des médecins, as the regulatory body responsible for producing not only guidelines in line with the standards of practice produced by the federal working group, but also guidelines for practice, clearly indicated that there was still work to be done, and that we were still at the discussion stage, even if we did hope one day to make MAID possible for MD-SUMC.