Caregivers' perceptions of illness severity and end of life service utilization in advanced heart failure

Objectives To assess perceptions of illness severity and terminality in caregivers of advanced heart failure (HF) patients and how these perceptions influence utilization of palliative care and end-of life services. Background HF is a terminal disease; yet patients and caregivers do not understand the severity of HF or acknowledge disease terminality. Methods This study was conducted using a qualitative design with in-depth interviews and content analysis. Results Most caregivers did not understand the severity of HF (68%) or disease terminality (67%). Patients were more likely to receive services when their caregivers expressed an understanding of illness severity and/or terminality. Conclusions Inclusion of caregivers in discussions of goals of care, advance care planning, and palliative care and end-of-life services with patients and providers is imperative.