Listening to the lost voices: a qualitative study reflecting on medical assistance in dying for mature minors in Ontario
Bibliographic record
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.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.008 | 0.017 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.002 |
| Science and technology studies | 0.021 | 0.017 |
| Scholarly communication | 0.005 | 0.003 |
| Open science | 0.003 | 0.009 |
| Research integrity | 0.002 | 0.004 |
| Insufficient payload (model declined to judge) | 0.004 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".