Abstract
BACKGROUND: End-of-life communication as part of advance care planning (ACP) aims to support older people to reflect on their values, needs, and wishes regarding the end of life. Previous studies have provided an understanding of the important aspects ("fundamentals") of end-of-life conversations with older people from the perspective of nursing staff. Developing further understanding of the experiences and needs of older people and their family caregivers will help identify gaps in communication, guide nursing staff in providing successful ACP, and ultimately enhance person-centered care. We aimed to explore the experiences of older people and their family caregivers in home, nursing home and hospital settings regarding the fundamentals of end-of-life communication as part of ACP by nursing staff. METHODS: Semi-structured interviews were performed with older people and their family caregivers about their experiences, opinions, and preferences before, during, and after recent formal end-of-life conversations. Data were analyzed thematically. RESULTS: Eight older people and four of their family caregivers participated in three dyadic and six individual interviews between June 2023 and May 2024. Overall, participants felt it was difficult to describe and evaluate their experiences with the end-of-life conversations because they initially had no specific expectations about end-of-life conversations and approached them with an open mind. Three overall themes were composed comprising 11 fundamentals of end-of-life communication: "Navigating conversational phases: probing and reflecting" (e.g., readiness), "Fostering recognition and relational safety: acknowledging the older person" (e.g., feeling at ease, feeling seen while nursing staff attune to the older person, feeling a human connection), and "Engaging with family caregivers: valuing their role and well-being" (e.g., considering their well-being). CONCLUSION: Older people and their family caregivers prioritize feeling comfortable in natural and humane end-of-life conversations. They want to be seen, heard, and acknowledged as individuals with backgrounds, values, and needs, not just as patients with a disease. Nursing staff should be aware of the expectations of an older person and family caregiver in end-of-life communication and adjust their approach accordingly. The results of this study can help in developing effective strategies to ensure that end-of-life communication is tailored to the unique needs of older people and their family caregivers, fostering an informed approach.