End-of-life care conversations with heart failure patients: a systematic literature review and narrative synthesis

Background Current models of end-of-life care (EOLC) have been largely developed for cancer and may not meet the needs of heart failure patients. Aim To review the literature concerning conversations about EOLC between patients with heart failure and healthcare professionals, with respect to the prevalence of conversations; patients' and practitioners' preferences for their timing and content; and the facilitators and blockers to conversations. Design of study Systematic literature review and narrative synthesis. Method Searches of Medline, PsycINFO and CINAHL databases from January 1987 to April 2010 were conducted, with citation and journal hand searches. Studies of adult patients with heart failure and/or their health professionals concerning discussions of EOLC were included: discussion and opinion pieces were excluded. Extracted data were analysed using NVivo, with a narrative synthesis of emergent themes. Results Conversations focus largely on disease management; EOLC is rarely discussed. Some patients would welcome such conversations, but many do not realise the seriousness of their condition or do not wish to discuss end-of-life issues. Clinicians are unsure how to discuss the uncertain prognosis and risk of sudden death; fearing causing premature alarm and destroying hope, they wait for cues from patients before raising EOLC issues. Consequently, the conversations rarely take place. Conclusion Prognostic uncertainty and high risk of sudden death lead to EOLC conversations being commonly avoided. The implications for policy and practice are discussed: such conversations can be supportive if expressed as 'hoping for the best but preparing for the worst'.