Next of kin perspectives on the experience of end-of-life care in a community setting.

Background: Previous studies of end-of-life experience have been conducted primarily in urban medical centers and mostly focused on preferences for rather than experience of care.

Objective: To describe family end-of-life experience and perceptions of care across clinical settings from a semirural community perspective, identifying experiences associated with patient quality of life as rated by next of kin.

Design: Retrospective study using structured interviews with decedents' next of kin and medical chart reviews.

Setting/subjects: Two hundred seven nonsudden deaths (24 hours of medical care immediately prior to death) in Missoula County, Montana, in 1996-1997.

Results: Family respondents rated quality of life for decedents at lifes's end on a 0-10 scale and were grouped according to their rating as good, moderate, or poor quality of life. Significant differences between groups were found for five elements of experience: severity and frequency of pain and other symptoms; ratings of pain management; adherence to care preferences; life enrichment activities; and communication between and among patients, family members, and professional caregivers. Higher family ratings were associated with a member of the health care team being responsible for the patient receiving the best care possible, and having someone familiar with the patient and family available nights and weekends.

Conclusions: Opportunities exist in community health care settings to improve quality of life for people approaching life's end. Clinicians, patients, and patients' families can contribute by engaging in open and ongoing communication about preferences for care, symptoms and their management, activities designed to enrich patients' personal experiences, as well as having patient care coordination and continuity of care on nights and weekends.