Enjeux éthiques potentiels liés aux partenariats patients en psychiatrie : état de situation à l’institut universitaire en santé mentale de Montréal Issues, dilemmas and managerial strategies of potential ethical risks associated with the implementation of patient partnership practices in psychiatry: a case study

Résumé

La participation des usagers des services au profit de l’amélioration de la qualité du système a été érigée en priorité par le Plan d’action en santé mentale de 2005. Dans ce cadre, l’Institut universitaire en santé mentale de Montréal a développé des dispositifs innovants autour du principe de pleine citoyenneté, grâce aux patients partenaires et aux pairs aidants.

Cet article a pour objectif d’interroger, d’un point de vue éthique, à la fois ces pratiques en tant que telles mais également leurs encadrement et accompagnement institutionnels. Cette étude a été réalisée au moyen d’une revue de la documentation scientifique, d’un examen des dispositifs institutionnels associés et d’entretiens axés sur les conditions d’exercice de cette participation.

L’analyse a permis de mettre en lumière la pluralité de réalités que recouvre ce dispositif de participation des usagers. S’il y a consensus sur le potentiel offert par une participation des patients au système de santé, certains facteurs et zones de risque peuvent néanmoins être identifiés : isolement, fatigue émotionnelle, rechute possible, précarité, enjeux d’intégration. Pour éviter de tels écueils, l’étude a souligné la nécessité de préparer, d’accompagner et de soutenir les usagers dans leurs nouvelles fonctions, ainsi que l’importance d’une gouvernance globale de cet ensemble d’activités. Au terme de cette étude, certaines recommandations sont formulées, en particulier celle consistant à réactualiser les valeurs éthiques institutionnelles à la lumière des nouveaux paradigmes de partenariat patient.

Mots-clés :

• partenariat patient,
• pairs aidants,
• pleine citoyenneté,
• valeurs éthiques,
• gestion des risques

Abstract

Objective: In terms of health and social services, the territory of the province of Quebec is covered by four large “integrated university health networks,” which are involved in the coordination of care delivery and medical training. The francophone components of the public mental health system for Montreal are thus primarily linked to the Integrated University Health Network of University of Montreal. In 2010, the Faculty of Medicine of the University of Montreal has included in its development strategy a firm commitment to the development and implementation of the “patient partner expertise” in research, training and care in order to make this expertise no less than the brand of the Faculty. This commitment applies to all medical specialties that are taught at University of Montreal, including in psychiatry. More recently, the Institut universitaire en santé mentale de Montréal (IUSMM) has endorsed a new clinical vision that promotes full citizenship, which implies that service users and carers are considered as full partners with a specific expertise to be fully deployed. The objective of this paper is to examine, from an ethical point of view, the challenges that may be associated with involving such lay persons in various levels of mental health care planning and delivery, and in research.

Methods: This study is mainly based on a review of the institutional processes that are in place at the IUSMM to promote service users’ participation in care planning and delivery, and in research. The focus is on the practicalities and conditions for the exercise of such an active participation, as some questions and concerns emerged through a series of interviews with different stakeholders. These issues are addressed and discussed through the lenses of the ethical values that were formalized at IUSMM.

Results: Despite a firm institutional commitment at IUSMM to implement its new citizenship-oriented clinical vision through greater service users’ involvement, little is known about the possible negative impacts of their participation, on themselves and for regular employees. There is a consensus on the symbolic value of recognizing the potential of service users as contributors, as a peer workers or peer research assistants. This is an historic advance compared to a time when they were considered only as more or less passive recipients of services or as a simple research subjects. Some risk factors were nonetheless identified: isolation, emotional fatigue, possible relapse, insecurity, sometimes tensed relations with health or research professionals and misunderstanding. In organizational terms, among the pitfalls, the study highlighted the need for more cautious preparatory steps, guidance and support for service users and for professionals as well, and the importance of a global and integrated governance strategy.

Conclusion: This study points to three main recommendations to better anticipate and manage possible risks associated with more or less improvised service users’ active participation, as lay persons, in complex planning and service delivery and in research. The first would be directed towards professionals for them to reflect on the quality of the doctor-patient relationship in their facility as to see how service users can help to improve this relationship, but among a variety of stakeholders and without being the sole responsible for such an improvement, or for the lack of improvement thereof. The second recommendation would propose to draw an objective evaluative assessment of participatory approaches at the organizational level, promoting a real return of experience and in light of the issues raised by these practices. The third would recommend an update of the organizational ethical values when introducing practices that change the current paradigms of the provision of care and services and of research.

Keywords:

• patient partnership,
• peer workers,
• full citizenship,
• ethical values,
• risk management