Résumés
Résumé
Au Québec, tout tend vers l’intégration prochaine des demandes anticipées d’aide médicale à mourir (AMM) à la loi provinciale. Ce faisant, les personnes atteintes de troubles neurocognitifs pourraient, en amont de la perte d’aptitude, déterminer les conditions justifiant, selon elles, la prestation de ce soin de fin de vie. À partir d’un survol de la littérature, nous soulignons le paradoxe lié au fait d’ouvrir l’AMM à cette population, alors que sa participation aux projets de recherche sur cette problématique demeure limitée. Nous présentons une recherche québécoise sur l’AMM en contexte de demandes anticipées, dans laquelle l’intégration des personnes diagnostiquées avec un trouble neurocognitif est valorisée. Nous exposons la méthodologie initialement envisagée pour inclure cette population à notre étude, ainsi que les enjeux rencontrés pour y arriver. Nous arguons que la perspective du travail social nous a aidées à résoudre ces enjeux. Enfin, nous avançons que la quête visant l’intégration des populations dites vulnérables à la recherche scientifique sur l’AMM devrait être menée avec autant de ferveur que la quête visant l’élargissement de ce soin de fin de vie.
Mots-clés :
- Aide médicale à mourir,
- troubles neurocognitifs,
- demandes anticipées,
- recherche participative,
- éthique clinique
Abstract
In Quebec, everything points to the upcoming integration of advance requests for medical assistance in dying (MAiD) into provincial law. This would allow people with neurocognitive disorders to determine, in anticipation of loss of capacity, the conditions that they believe justify the provision for this end-of-life care. Based on an overview of the literature, we highlight the paradox of extending MAiD to this population, while their participation in research projects on this issue remains limited. We present a Quebec study on MAiD in the context of advance directives, in which the inclusion of people diagnosed with a neurocognitive disorder is valued. We outline the methodology initially envisioned to include this population in our study, as well as the challenges encountered in doing so. Then, we share how the social work perspective allowed us to overcome them. Lastly, we argue that the quest to include so-called vulnerable populations in scientific research on MAiD should be pursued as fervently as the quest to expand this end-of-life care.
Keywords:
- Medical assistance in dying (MAiD),
- neurocognitive disorders,
- advance requests,
- participatory research,
- clinical ethics
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