Good morning and thank you, Mr. Chair.
My contribution to this discussion is as a social science researcher with two decades of experience in palliative care research with both younger and older populations. Specific to mature minors, I was a member of the CCA expert panel working group for mature minors. I also supervised a philosophy student's master's thesis on the topic, which was published in the Journal of Medical Ethics in 2020, and my team recently completed a qualitative study engaging youth in focus group discussions regarding this potential legislation, with results having recently been submitted for publication.
What I want to focus on is how my research team, following the CCA report, has recently positioned itself to help advance the generation of empirical data to move these discussions forward. This position comes from a collective experience we had on the CCA expert panel, an experience of frustration that we were trying to advance policy and practice ideas without having ample evidence from youth themselves on the topic at hand. We continually circled back to the lack of research we could draw upon to help think forward about what MAID for mature minors could and should look like.
On the CCA panel, clinicians could reflect on their personal experiences with members of relevant populations, and lawyers could think about some adjacent case law, but overall it was clear that there was very limited national or international evidence that captured the voices and experiences of young people and their families regarding terminal illness, suffering, grief and bereavement. Evidence was even more scarce on the views and experiences of young people who may be made particularly vulnerable by the current state of practice, such as indigenous youth, young people with disabilities and those in the child welfare system.
As a researcher abiding by tri-council research ethics and community-based participatory guidelines, I take very seriously the ethical stance towards participants of “nothing about them without them”. It is not okay to be advancing research, policy or practices on MAID for mature minors without actively soliciting and listening to youth voices. The United Nations Convention on the Rights of the Child outlines how and why young people have rights to participate in matters that impact their lives and to express their views in any discussion that affects them based upon their own capacities. Given that young people remain ineligible for MAID, a form of end-of-life care that they may be interested in and may benefit from, it is reasonable to consider that their exclusion from conversations about MAID until this point has been in violation of the right to participate.
In the spirit of addressing this gap, with two colleagues, Franco Carnevale and Sydney Campbell, I have put forward a proposal to Health Canada through the health care policy contribution program. We were solicited by Health Canada to develop this proposal. However, it is not yet finalized and the budget has not been approved, so I'm just going to stay at a high level with respect to details about its design.
We have proposed a three-year study that will meaningfully engage with young people to generate data through focus groups, interviews and arts-based methods from which we can put forward evidence-based recommendations on the next steps pertaining to MAID for mature minors. We are starting with the premise that youth are agents with rights and we are proposing to proactively work directly with young people and their caregivers to understand what is important to them regarding clinical and policy discussions around MAID specifically, and also how they want to be involved in palliative and end-of-life policy planning more broadly.
We will spend the first year consulting with youth and caregivers about how the study should unfold. We have proposed including in our sample young people perceived as being particularly vulnerable, such as youth with underlying health conditions like cancer, with mental health conditions or with disabilities, and indigenous young people. We propose to create a coast-to-coast-to-coast sample involving young people throughout, starting at age 12, from design through to analysis and dissemination. Together with youth, we will produce both a descriptive report on the state of the situation and a more theoretical and ethically focused analysis of what should be done and how policy should move forward.
Thank you.