Conversations about End of Life: Perspectives of Nursing Home Residents, Family, and Staff

Background: Care in nursing homes (NHs) often overlooks individual values and preferences. Residents' voices are critical to discussions about preferences, yet there remains limited research on conversations about the end of life (EOL) from the perspective of older adults who reside in NHs. Objective: The aim of this study was to describe the communication, content and process, related to EOL conversations among residents, family, and staff. Methods: We used semistructured interviews in this qualitative, descriptive study to describe conversations about EOL preferences. We examined participants' conversation, when it occurred, and what was discussed. We queried about barriers to and facilitators in discussing EOL care in the NH setting. We interviewed residents (n=16), family (n=12), and interdisciplinary staff (n=10) from four NHs. Results: The overarching theme-missed conversations-describes EOL-related communication. Residents, families, and staff rarely talked about EOL care preferences, nor did they pass along information about preferences or initiate conversations about EOL care with each other. Three categories explained missed conversations: inquiry ("No one asked"); assumptions (presence of an advance directive [AD], "They know me"); and conveying (lack of conveying information or wishes). Existing barriers and lacking facilitators resulted in missed opportunities to hold conversations about EOL preferences. Conclusions: Not all residents wanted to have conversations, but many wanted to be asked about their preferences. Missed conversations may adversely affect the quality of EOL care. Conversations with residents can be initiated by asking residents who they would like involved in the conversation and drawing upon the experience of others.