Symptom Burden at the End of Life

To describe symptom prevalence, frequency, and severity among hospice patients, from the perspective of hospice providers, a cross-sectional study was conducted among 16 hospices participating in the Population-based Palliative Care Research Network (PoPCRN). Hospice staff estimated symptom presence, frequency, and severity, using the Memorial Symptom Assessment Scale. Among the 348 patients (median age 78 years, 55% female, 55% cancer diagnosis), the most common symptoms noted by hospice staff were lack of energy (83%), pain (76%), lack of appetite (63%), drowsiness (61%), difficulty concentrating (60%), and sadness (51%). When present, lack of energy was rated by hospice providers as both frequent (75% “frequently” or “almost constantly”) and severe (46% “severe” or “very severe”). Symptoms varied by care setting and by diagnosis. Hospice staff often lacked sufficient information to rate potentially important symptoms, such as problems with sexual interest or activity (63%), change in self image (30%), and worrying (26%). This study identifies a significant burden of unrelieved symptoms among hospice patients, suggesting a need for more widespread institution of symptom management strategies with proven effectiveness and additional investigation into treatment of common symptoms for which few effective treatment strategies are known.