Good evening.

I'm honoured to have this opportunity to appear as a witness for this special joint committee.

I'm speaking to you as a clinical ethicist who works with young people, including dying children and youth, and their families. I'm also speaking to you as a childhood ethics researcher. I founded and lead a childhood research program called VOICE, which is based at McGill University. I'm here to share what I've learned from working with young people, their families and those who work with them.

My comments this evening are drawn from a report that I was asked to prepare in 2021 by Dr. Michel Bureau, chair of the Quebec end-of-life commission. I'll refer to this work as my 2021 Quebec report.

Dr. Bureau asked me to examine views within the McGill University network regarding the potential inclusion of some minors in the provision of MAID—medical assistance in dying—so that his commission could consider this information in their deliberations. I submitted my report to him on May 27, 2021, and he's given me permission to share that report with this committee, which I've submitted as an addendum to this statement.

Moreover, I was part of a 14-member pan-Canadian expert panel working group on MAID for mature minors convened by the Canadian ministers of justice and health to examine the evidence regarding the inclusion of mature minors in MAID. The results of our analysis are documented within our final report, published in 2018. That report is likely the most comprehensive and robust examination of this topic, which I hope this committee will consider seriously.

A major concern highlighted within that report was that youth input has been largely absent in discussions about MAID for minors. To help redress this problem, I submitted as evidence videorecorded interviews that I conducted with disabled youth leaders at Holland Bloorview Kids Rehabilitation Hospital in Toronto. For details on those interviews, see pages 122 to 123 in the English version of the report. Translation is available in the French version as well.

In preparing my 2021 Quebec report, I conducted consultations with the Youth Advisory Council and the Indigenous Youth Advisory Council of the VOICE childhood ethics program. I also consulted with parent and family representatives within pediatric services, medical and nursing leaders within various clinical services, pediatric palliative care researchers, the clinical ethics committee at Le Phare, Enfants et Familles, which is a pediatric hospice, and the child and youth mental health ethics committee at the Douglas Mental Health University Institute in Montreal. The latter was to examine whether some minors should be considered eligible for MAID solely on the basis of a mental health problem. The detailed results of this investigation are described in the 2021 Quebec report, which I've submitted to this committee.

I'll briefly highlight some of the conclusions and recommendations from that report. They include the following.

There are strong disagreements among clinicians regarding the justifiability of MAID for some minors. Some clinicians described clinical trajectories that correspond with those of adults who could be eligible for MAID. A number of medical conditions are described in my report for which these clinicians considered MAID could be a reasonable option for some minors. In contrast, some clinicians stated categorical objections toward making any minors eligible for MAID.

Clinicians also stated concerns about ways in which potential risks or vulnerabilities associated with MAID could amplify existing inequities for some minors. There was a consensus among the groups that I consulted that MAID should not be made available for youth for whom a mental disorder is their sole underlying medical condition, chiefly because they could not identify any clinical scenarios that they could characterize as irremediable or in an advanced state of decline that could not be reversed.

Given the vulnerabilities that may be a concern for some minors, special attention should be devoted to the safeguards that should be in place to ensure that all minors are treated safely. At the same time, it is important these safeguards do not operate as onerous obstacles that can create discriminatory inequities regarding access to MAID.

While ensuring that minors’ vulnerabilities are adequately safeguarded, we should not perpetuate common tendencies to under-recognize and devalue their capacities, aspirations and concerns as moral agents. Any initiatives to include or exclude minors from eligibility for MAID need to be based on the latest state of knowledge in child and youth studies, working in consultation with youth advisers.

In conclusion, an examination of whether or not some minors should be eligible for MAID should involve meaningful consultations with youth groups as well as youth leaders. Moreover, consultations with indigenous leaders and communities are necessary to ensure that concerns and impacts that may be specific to the experiences and vulnerabilities of indigenous youth are respectfully addressed.

I thank you.

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