Quality end-of-life care: patients' perspectives

JAMA. 1999 Jan 13;281(2):163-8. 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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Advance Care Planning
  • Aged
  • Aged, 80 and over
  • Communication
  • Decision Making
  • Female
  • HIV Infections / therapy
  • Humans
  • Kidney Failure, Chronic / therapy
  • Long-Term Care
  • Male
  • Middle Aged
  • Pain Management
  • Patient Advocacy
  • Patient Satisfaction*
  • Qualitative Research
  • Quality of Life*
  • Renal Dialysis
  • Research
  • Stress, Psychological
  • Terminal Care*
  • Terminally Ill / psychology*
  • Withholding Treatment