Résumé
En Suisse, différentes dispositions légales sont prévues pour gérer les décisions médicales en cas de perte de capacité de discernement ou d’incapacité à s’exprimer (représentant-e thérapeutique, directives anticipées, mandat pour cause d’inaptitude). Ces outils, sur lesquels la Suisse a légiféré en 2013, redéfinissant ainsi le droit national de protection de l’adulte, ont pour but de promouvoir et de garantir l’autodétermination des patients et la solidarité familiale. Cet article revient sur les conditions d’émergence de tels outils, sur leurs fondements moraux et sur les applications concrètes qu’en font les proches de patient-e-s. Sur la base d’une recherche par entretiens, les auteurs réfléchissent sur la façon dont la place et le rôle des proches se concrétisent dans les situations de fin de vie. Si la délégation aux proches de certaines décisions participe d’une « démocratisation » de la prise de décisions, elle génère également des incertitudes susceptibles d’en remettre en question l’efficacité. Plus largement, les auteurs questionnent la place des proches dans l’institution médicale.
In Switzerland, there are different legal provisions to manage medical decisions in the event of the loss of decision-making capacity or the inability to express oneself (patient-appointed proxy, advance directives, power of attorney). These tools, which Switzerland has legislated on in 2013, and that redefine the national adult protection law, aim at promoting and ensuring patients’ self-determination and familial solidarity. This article examines the conditions for the emergence of such tools, their moral rationales and the way proxies implement them practically. Based on a research conducted through interviews, the authors reflect on how the place and role of informal care-givers unfold in end of life situations. If the delegation of certain decisions to proxies is a sign of a certain « democratization » in decision-making, it also generates uncertainties that question its effectiveness. More generally, the authors question the place of proxies in the medical institution.
In Switzerland, there are different legal provisions to manage medical decisions in the event of the loss of decision-making capacity or the inability to express oneself (patient-appointed proxy, advance directives, power of attorney). These tools, which Switzerland has legislated on in 2013, and that redefine the national adult protection law, aim at promoting and ensuring patients’ self-determination and familial solidarity. This article examines the conditions for the emergence of such tools, their moral rationales and the way proxies implement them practically. Based on a research conducted through interviews, the authors reflect on how the place and role of informal care-givers unfold in end of life situations. If the delegation of certain decisions to proxies is a sign of a certain « democratization » in decision-making, it also generates uncertainties that question its effectiveness. More generally, the authors question the place of proxies in the medical institution.