Abstract
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.