This report addresses the following key questions: 1. What outcome variables are valid indicators of the quality of the end-of-life experience for the dying person and for the surviving loved ones? a. What individual outcome measures are most strongly associated with overall satisfaction with end-of-life care? b. What is the reliability and validity of specific instruments for measuring quality of life or quality of care at the end-of-life? 2. What patient, family, and health care system factors are associated with better or worse outcomes at end of life? a. What individual patient factors (e.g., age, gender, race/ethnicity, underlying illness, education, etc.) are associated with better or worse outcomes at end of life? b. What family factors (e.g., relationship to patient, race/ethnicity, etc.) are associated with better or worse outcomes at end of life, including both outcomes reported by the family and how the family affects outcomes experienced by the patient? c. What health care system factors (e.g., site of care, type of provider, support services, etc.) are associated with better or worse outcomes?
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