"Now I Don't Have to Guess": Using Pamphlets to Encourage Residents and Families/Friends to Engage in Advance Care Planning in Long-Term Care

Tamara Sussman, Sharon Kaasalainen, Matthew Bui, Noori Akhtar-Danesh, Susan Mintzberg, Patricia Strachan, Tamara Sussman, Sharon Kaasalainen, Matthew Bui, Noori Akhtar-Danesh, Susan Mintzberg, Patricia Strachan

Abstract

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.

Keywords: advance care planning; comfort; end of life; nursing homes; palliative care.

Conflict of interest statement

Declaration of Conflicting Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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