Systematic mixed-method review of barriers to end-of-life communication in the family context
Katharina Nagelschmidt, Nico Leppin, Carola Seifart, Winfried Rief, Pia von Blanckenburg
Abstract
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.