Listening to the lost voices: a qualitative study reflecting on medical assistance in dying for mature minors in Ontario.

Abstract

Background: Medical Assistance in Canada (MAID) has been decriminalized in Canada since 2016. Mature minors-or individuals younger than 18 deemed legally capable to provide consent-remain ineligible. While there have been numerous spaces for adults to share their reflections on MAID, mature minors have not had the same opportunities, especially those with critical, complex illnesses. Thus, this study aimed to provide the first exploration on how the lived experiences of mature minors with critical, complex illnesses, and their parents, contribute to their views on MAID for mature minors and their participation in end-of-life policy development and evaluation.

Methods: We conducted an interpretive phenomenological study with an integrated community-engagement approach. Semi-structured interviews were used to explore the experiences and perspectives of a purposive sample of mature minor participants with critical, complex illness experiences and their parents. Analysis followed an interpretive framework.

Results: Participants' perspectives were complex and revealed similarities and differences across experiences and reflections. Participant narratives were centred on three macro-themes: their cancer journeys, their reflections on death, dying, and MAD (as informed by and filtered through the lens of their illness experiences), and policy and process reflections.

Interpretation: Our study offers new insights into filling gaps related to mature minors' and parents' perspectives on MAID. Consideration of suffering was central within the participant's narratives, highlighting important takeaways for clinicians. Moreover, the sensitivity that mature minor participants applied to discussions related to MAID, along with the diversity of their perspectives, affirms the significance and value of their engagement.