Quality end-of-life care. Patients' perspectives

Abstract

Context. Quality end-of-life care is increasingly recognized as an ethical obligation of health care providers, both clinicians and organizations. However, this concept has not been examined from the perspective of patients. Objective. To identify and describe elements of quality end-of-life care from the patient's perspective. Design. Qualitative study using in-depth, open-ended, face-to-face interviews and content analysis. Setting. Toronto, Ontario. Participants. A total of 126 participants from 3 patient groups: dialysis patients (n = 48), people with human immunodeficiency virus infection (n = 40), and residents of a long- term care facility (n = 38). Outcome Measures. Participants' views on end- of-life issues. Results. Participants identified 5 domains of quality end- of-life 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. Conclusion. These domains, which characterize patients' perspectives on end-of-life care, can serve as focal points for improving the quality of end-of-life care.