Context A clear understanding of what patients, families, and health care practitioners
view as important at the end of life is integral to the success of improving
care of dying patients. Empirical evidence defining such factors, however,
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 conducted in March-August
Participants Seriously ill patients (n = 340), recently bereaved family (n = 332),
physicians (n = 361), and other care providers (nurses, social workers, 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% responding
that item is important) across all 4 groups, including pain and symptom 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 from physicians (P<.001), including being mentally aware, having funeral arrangements
planned, not being a burden, helping others, and coming to peace with God.
Ten items had broad variation within as well as among the 4 groups, 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 the end of life
differ by role and by individual. Efforts to evaluate and improve patients'
and families' experiences at the end of life must account for diverse perceptions