Symptom Burden at the End of Life

Abstract

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.

The Relationships among Pain, Nonpain Symptoms, and Quality of Life Measures in Older Adults with Cancer Receiving Hospice Care

“…At T 1 , 22 respondents (31%) rated the highest level of pain in the last 24 hours as severe, 15 (21.1%) rated the highest level of pain as moderate, 19 (26.8%) rated the “worst pain” as mild, and the remaining 15 (21.1%) had no complaints of pain. At T 2 , 19 respondents (26.8%) rated the highest level of pain in the last 24 hours as severe, 15 (21.1%) rated the highest level of pain as moderate, 14 (19.7%) rated the “worst pain” as mild, and the remaining 23 (32.4%) had no complaints of pain. In the past 24 hours, patients at T 1 reported spending an average of 4.82 hours in mild pain, 2.98 hours in moderate pain, and 1.71 hours in severe pain.…”

“…Pain continues to be one of the most common symptoms associated with cancer, with up to 90% of patients experiencing pain during the course of their illness and 50- 80% having poorly managed pain 2, 3 . Additionally, 25-40% of cancer patients ages 65 and older will experience daily pain 4 .…”

Challenge of assessing symptoms in seriously ill intensive care unit patients

“…However, in this study, ICCs were relatively robust for both physical (e.g., SOB, pain, restlessness) and psychological (e.g., anxiety, fear) symptoms, at least between patients and family members. Again, this finding may reflect a measure of closeness between patients and family members (55). …”

Hospice Caregivers' Experiences With Pain Management: “I'm Not a Doctor, and I Don't Know if I Helped Her Go Faster or Slower”

“…Nearly 70% of hospice deaths occur in the patient’s place of residence (7). Distressing pain and symptoms have been documented to affect 76%–90% of hospice patients (8, 9). The home of a dying patient has been compared with a hospital unit in which informal caregivers are expected to manage all aspects of patient care; those lacking formal education are left anxious, exhausted, and burdened (10).…”