Background Communication about the end of life is especially important in the family context, as patients and their families are considered as the care unit in palliative care. Open end-of-life communication can positively affect medical, psychological and relational outcomes during the dying process for patient and family. Regardless of the benefits of end-of-life conversations, many patients and their family caregivers speak little about relevant end-of-life issues.
Aim To identify barriers that hinder or influence the discussion of end-of-life issues in the family context.
Design A systematic mixed-method review according to Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines.
Data sources A systematic search of PsycInfo, CINAHL, PubMed and Web of Science was conducted and extended with a hand search. Peer-reviewed primary studies reporting on the barriers to or difficulties in end-of-life conversations experienced by terminally ill patients and/or family caregivers were included in this review.
Results 18 qualitative and two quantitative studies met the inclusion criteria. The experiences of n=205 patients and n=738 family caregivers were analysed qualitatively; n=293 patients and n=236 caregivers were surveyed in the questionnaire studies. Five overarching categories emerged from the extracted data: emotional, cognitive, communicative, relational and external processes can hinder end-of-life communication within the family. The most frequently reported barriers are emotional and cognitive processes such as protective buffering or belief in positive thinking.
Conclusions Research on end-of-life communication barriers in the family context is scarce. Further research should enhance the development of appropriate assessment tools and interventions to support families with the challenges experienced regarding end-of-life conversations.
- family management
- psychological care
- end of life care
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Contributors KN, PvB, WR and CS contributed to the study design. KN and PvB designed the search strategy. KN and PvB screened abstracts, extracted data and assessed evidence quality. KN and PvB analysed and interpreted the data. KN and PvB drafted the manuscript. NL, CS and WR provided critical feedback and revisions on the manuscript. All authors approved the final draft for submission. KN and PvB are responsible for the overall content of the manuscript.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.