Special Communication
January 13, 1999

Quality End-of-Life CarePatients' Perspectives

Author Affiliations

Author Affiliations: Toronto Hospital and the Department of Medicine (Dr Singer), Joint Centre for Bioethics (Drs Singer and Martin), and the Institute of Human Development, Life Course, and Aging (Dr Kelner), University of Toronto, Toronto, Ontario.

JAMA. 1999;281(2):163-168. doi:10.1001/jama.281.2.163

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.