Quality End-of-Life CarePatients’ Perspectives (DRAFT)
This chapter summarizes Singer and colleagues’ 1999 “Quality End-of-Life Care: Patients’ Perspectives,” which investigates elements of quality end-of-life (EOL) care from patients’ perspectives. The study uses content analysis of previously conducted interviews with 126 dialysis and HIV patients and long-term care residents to identify five domains of quality EOL care: receiving adequate pain and symptom management, avoiding inappropriate prolongation of dying, achieving a sense of control, relieving burden, and strengthening relationships with loved ones. The authors compare these with three other, non-patient-derived taxonomies, finding the study’s domains to be simpler and more specific, less conceptually driven (e.g., “processes of care”), and more outcome-focused. This study pioneered patient-centered research into quality of EOL care, which has since expanded to many other populations