‘There for me’: A qualitative study of family communication and decision-making in end-of-life care for older people

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.

Keywords:

• Communication
• Caregiver
• Decision making
• Nursing staff
• Palliative care
• Patient preference

Acknowledgements

We thank the study participants for their time in discussing this sensitive topic. We thank Drew Aras from the Northern Hospital, Fran Gore from Mercy Health, Carol Perich from Western Health, Sarah O’Leary from the North Western Melbourne Primary Care Health Network, Kerrie Cunningham from Banksia Palliative Care, and Jane Newbound from the Southern Metropolitan Palliative Care Consortium for their clinical input and assistance. We thank Natalie James and Kerry Hwang for their research assistance during the project.

Disclaimer statements

Contributors: BB, FB, SW, JW, AP, and BH designed the study; CL completed data collection, and data analyses; SW contributed to data-analyses; BB supervised the project, supported data analyses, and oversaw the manuscript development; KG lead the manuscript write-up, its submission and dissemination; all the authors endorsed the manuscript.

Funding: Melbourne Ageing Research Collaboration and North Western Melbourne Primary Care Health Network.

Conflicts of interest: None declared.