RÉSUMÉCette étude qualitative canadienne rapporte les résultats de 19 groupes de discussion comprenant 117 participants, incluant des bénéficiaires, des familles et des membres du personnel. Elle avait pour objectifs : 1) d’explorer les soins palliatifs offerts en soins de longue durée (SLD) en vue de faire face aux tensions associées à la prestation de soins aux personnes qui sont encore bien vivantes et celles en fin de vie dans une même communauté de soins et 2) d’identifier des améliorations qui pourraient être apportées aux pratiques en soins palliatifs afin de mieux répondre aux besoins de tous les bénéficiaires en vie ou mourants dans les établissements de SLD, ainsi que celles des familles et du personnel qui leur apportent du soutien. Notre étude a montré que les perspectives liées au confort en fin de vie du personnel en SLD, celles des bénéficiaires et de leurs familles étaient appliquaient à ceux qui se trouvaient en fin de vie ou aux familles qui les soutenaient. Cette compréhension du confort limitait l’intégration des principes de soins palliatifs lors des derniers jours de vie des bénéficiaires. Les résultats de notre étude ont aussi suggéré que le fait de recueillir les perceptions des bénéficiaires liées au confort en fin de vie, de partager l’information à propos de la mort d’un bénéficiaire d’une manière plus personnelle, et de s’assurer que les bénéficiaires, leurs familles et le personnel aient des occasions de participer dans les soins de confort pour les bénéficiaires mourants pouvaient accroître le confort en fin de vie et soutenir une plus grande intégration des principes de soins palliatifs en SLD.

Objective: This article explores whether access to illness trajectory pamphlets for five conditions with high prevalence in long-term care (LTC) can encourage residents and families/friends to openly engage in advance care planning (ACP) discussions with one another and with health providers. Method: In all, 57 residents and families/friends in LTC completed surveys and 56 participated in seven focus groups that explored whether the pamphlets supported ACP engagement. Results: Survey results suggested that access to pamphlets encouraged residents and families/friends to reflect on future care (48/57, 84%), clarified what questions to ask (40/57, 70%), and increased comfort in talking about end of life (EOL) care (36/57, 63%). Discussions between relatives and friends/families (32/57, 56%) or with health providers (21/57, 37%) were less common. Focus group deliberations illuminated that while reading illness-specific information was validating, a tendency to protect one another from an emotional topic, prevented residents and families/friends from conversing with one another about EOL issues. Discussion: Having access to pamphlets with information about EOL care provides important and welcome opportunities for reflection for both residents in LTC and their families/friends. Moving residents and families/friends from reflecting on issues to discussing them together could require staff support through planned care conferences or staff initiated conversations at the bedside.

Communication around the end of life in LTC can be supported through the use of FCCs. Description of content and FCC processes provides guidance to persons implementing FCCs. Recommendations for tailoring conferences to optimize communication include use of specific conference forms, increased bereavement discussion, and further engagement of PSWs and physicians.

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This interpretative, qualitative study explored residents’ and families’ perspectives on advance care planning (ACP) in long-term care (LTC). Perspectives on when, how, and with whom ACP discussions should be introduced and barriers and solutions to improving ACP engagement were examined. Fifty-one residents and families participated in seven focus groups. The findings revealed that residents and families prioritized caring connections over professional rank when reflecting on staff involvement in ACP. The findings further revealed that the caring and compassionate environment considered to be a critical pre-condition for ACP engagement was more typically enacted at end of life when ACP was no longer an option. Our findings suggest that work practices and organizational structures within LTC play an important role in inhibiting ACP engagement.