No one said he was dying: families’ experiences of end-of-life care in an acute setting

Abstract

Objective: To explore the family’s experience of end-of-life care for their dying family member during the last few days of life in an acute rural hospital. Design: Interpretive design using qualitative methods, including 1:1 semi- structured interviews. Setting: The study was undertaken in a large regional health service in Victoria. Subjects: Twelve relatives who were next of kin of people who died between 1 January 2012 and 30 June 2013 in an acute ward at the health service agreed to participate in the study. Main outcome measure: Families’ perceptions of end-of-life care for their dying family member. Results: Data analysis identified five themes that were grouped into two general dimensions − communication (guidance for family member’s role in end of life care, the family’s preparation for death, the dying experience) and care and support (the hospital care experience, follow-up after death). Conclusion: A lack of open and candid communication hindered family members’ engagement in decision-making and involvement in their loved ones’ last days of life. The absence of formal processes for end of life (EOL) care planning resulted in families being unprepared for what they perceived as their family member’s ‘sudden death’.