Factors considered important at the end of life by patients, family, physicians, and other care providers

Context A clear understanding of what patients, families, and health care p ractitioners view as important at the end of life is integral to the succes s of improving care of dying patients. Empirical evidence de fining such fa ctors, however, is lacking. Objective To determine the factors considered important at the end of life by patients, their families, physicians, and other care providers. Design and Setting Cross-sectional, stratified random national survey condu cted in March-August 1999. Participants Seriously ill patients (n = 340), recently bereaved family (n = 332), physicians (n = 361), and other care providers (nurses, social work ers, chaplains, and hospice volunteers; n = 429). Main Outcome Measures Importance of 44 attributes of quality at the end of life (5-point scale) and rankings of 9 major attributes, compared in the 4 groups. Results Twenty-six items consistently were rated as being important (>70% r esponding that item is important) across all 4 groups, including pain and s ymptom management, preparation for death, achieving a sense of completion, decisions about treatment preferences, and being treated as a "whole person ." Eight items received strong importance ratings from patients but less fr om physicians (P<.001), including being mentally aware, having funeral arra ngements planned, not being a burden, helping others, and coming to peace w ith Clod. Ten items had broad variation within as well as among the 4 group s, including decisions about life-sustaining treatments, dying at home, and talking about the meaning of death. Participants ranked freedom from pain most important and dying at home least important among 9 major attributes. Conclusions Although pain and symptom management, communication with;one's physician, preparation for death, and the opportunity to achieve a sense of completion are important to most, other factors important to quality at th e end of life differ by role and by individual. Efforts to evaluate and imp rove patients' and families' experiences at the end of life must account fo r diverse perceptions of quality.