title: Caregivers' perceptions of illness severity and end of life service utilization in advanced heart failure.
abstract: OBJECTIVE
  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.
authors: Pennsylvania State University College of Nursing, 1300ASB/A110 90 Hope Drive, Hershey, PA 17033, USA. Electronic address: wwa103@psu.edu.
authors: Windy
authors: W
authors: Alonso
authors: Pennsylvania State University College of Nursing, 1300ASB/A110 90 Hope Drive, Hershey, PA 17033, USA.
authors: Judith E
authors: JE
authors: Hupcey
authors: Penn State College of Nursing, 307H Nursing Sciences Building, University Park, PA 16802, USA.
authors: Lisa
authors: L
authors: Kitko
mesh_terms: D017028:Caregivers / Q000523:psychology*; D006333:Heart Failure / Q000175:diagnosis* / Q000628:therapy; D006801:Humans; D010465:Perception; D011788:Quality of Life; D012720:Severity of Illness Index; D013727:Terminal Care / Q000706:statistics & numerical data*
keywords: Advanced heart failure; Caregiver perceptions of illness severity; End-of-life services; Palliative care; Service utilization