‘There for me’: A qualitative study of family communication and decision-making in end-of-life care for older people
Katrin Gerber, Christel Lemmon, Sue Williams, James Watt, Anita Panayiotou, Frances Batchelor, Barbara Hayes, Bianca Brijnath
Abstract
Background: Communication is an essential prerequisite for good end-of-life care. Yet, there is a need to better understand the unique features of communication regarding end-of-life care for older people. Aim: To gain an in-depth understanding of family communication and decision-making concerning older people’s end-of-life care. Design: Semi-structured interviews were undertaken with four older palliative care patients and seven bereaved family members in Melbourne, Australia. Data were analysed thematically using inductive coding. Findings: Participants preferred not to think about dying as older people trusted others (e.g. medical staff, God) to make decisions for them. This influenced end-of-life communication, resulting in family members making decisions during medical crises. Such decisions were complicated by family conflict and denial of dying. Family members were crucial mediators between older people and health services, helping them to navigate the care system and advocating on their behalf. Being treated with respect, remaining independent and socially connected was integral to participants’ perception of good end-of-life care. Conclusions: End-of-life communication and decision-making is multi-layered, and shaped by families’ histories and roles. While documenting and implementing care preferences is challenging, understanding these challenges may improve communication between services, families and older people as they approach the final stage of life.