Time course and characteristics of symptom distress and quality of life at the end of life.

This study sought to describe the characteristics and correlates of symptom distress and quality of life (QOL) among persons receiving hospice/palliative care. English-speaking adults (n=86), their nurses (n=86), and family caregivers (n=49) from 11 hospice/palliative care organizations completed the Memorial Symptom Assessment Scale (MSAS) and McGill Quality of Life Questionnaire (MQOL) at hospice/palliative care enrollment, at one week, two weeks, then monthly until death or discharge. Mixed effects modeling using proxy reports to impute missing patient-reported data were used to describe predictors of symptom distress and QOL. Given study population attrition due to death, analyses are limited to the first 17 days following hospice/palliative care admission. While lack of energy and pain were the most prevalent and distressing symptoms (prevalence 92% and 82%, respectively; mean MSAS scores 3.27 and 2.71, respectively), pain was identified as the most distressing symptom based on its contribution to MSAS summary scores and responses to a single-item "most distressing symptom" question. Pain, nonpain symptom distress, and MQOL scores remained fairly stable throughout the study period. Distress from all other physical symptoms was significantly associated with distress due to pain. There were no significant associations between patient characteristics and distress due to pain. While greater psychological symptom distress had a negative association with QOL, neither pain nor other physical symptom distress was associated with QOL. The persistence of significant symptom distress, particularly due to pain, argues for the need for enhanced evidence to guide care provided in the last days and weeks of life.