WHAT IS WRONG WITH END-OF-LIFE CARE - OPINIONS OF BEREAVED FAMILY MEMBERS

OBJECTIVE: To describe family perceptions of I:are at the end of life. METHODS: In a representative sample of older people who died from chr onic 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: Intervie ws were completed with 461 family members, 80% of those contacted. The y 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 t reatment to sustain life in 8% of deaths. They or the decedent wanted treatments doctors did not recommend in 6% of deaths but refused recom mended therapies in 18% of deaths. They believed more care to relieve pain or other symptoms was indicated in 18% of deaths. Asked to make p ositive or negative comments about any aspect of terminal care, 91% of comments on hospice were positive. Nursing home care received the sma llest proportion of positive comments (51%). Family members recommenda tions to improve end of life care emphasized better communication (44% ), greater access to physicians' time (17%), and better pain managemen t (10%). CONCLUSION: Bereaved family members are generally satisfied w ith life-sustaining treatment decisions. Their primary concerns are fa ilures in communication and pain control. Discussions that focus on sp ecific treatment decisions may not satisfy the real needs of dying pat ients and their families.