What is wrong with end-of-life care? Opinions of bereaved family members

Abstract

Objective: To describe family perceptions of care at the end of life.

Methods: In a representative sample of older people who died from chronic diseases, family members were interviewed about satisfaction with treatment intensity, decision-making, and symptom relief in the last month of life, and gave suggestions to improve care.

Results: Interviews were completed with 461 family members, 80% of those contacted. They reported that 9% of decedents received CPR, 11% ventilator support, and 24% intensive care during their last month of life. Family members could not recall a discussion of treatment decisions in 23% of cases. Presence or absence of a living will did not affect the likelihood of no discussion (22% vs 24%, P = .85). Family informants desired more treatment to sustain life in 8% of deaths. They or the decedent wanted treatments doctors did not recommend in 6% of deaths but refused recommended therapies in 18% of deaths. They believed more care to relieve pain or other symptoms was indicated in 18% of deaths. Asked to make positive or negative comments about any aspect of terminal care, 91% of comments on hospice were positive. Nursing home care received the smallest proportion of positive comments (51%). Family members recommendations to improve end of life care emphasized better communication (44%), greater access to physicians' time (17%), and better pain management (10%).

Conclusion: Bereaved family members are generally satisfied with life-sustaining treatment decisions. Their primary concerns are failures in communication and pain control. Discussions that focus on specific treatment decisions may not satisfy the real needs of dying patients and their families.