Palliative care and symptom burden in the last year of life: a population-based study of patients with gastrointestinal cancer

Introduction — The symptom profile in cancer patients and the association between palliative care (PC) and symptoms has not been studied in the general population. We addressed these gaps in gastrointestinal (GI) cancer patients in the final year of life.

Methods — Patients dying of esophageal, gastric, colon, and anorectal cancers during 2003–2015 were identified. Symptom scores were recorded in the year before death using the Edmonton Symptom Assessment System (ESAS), which includes scores from 0 to 10 in nine domains. Symptom severity was categorized as none–mild (≤ 3) or moderate–severe (≥ 4–10). Adjusted associations between outpatient PC and moderate–severe ESAS scores were determined, and the effect of PC initiation on ESAS scores was estimated.

Results — The cohort included 11,242 patients who died (esophageal [17%], gastric [20%], colon [38%], and anorectal [26%] cancers). Fifty percent experienced moderate–severe scores in tiredness, lack of well-being, and lack of appetite earlier (weeks 18 to 12 before death), whereas 50% experienced moderate–severe scores in drowsiness, pain, and shortness of breath later (weeks 5 to 2 before death) in the disease course. Outpatient PC was associated with an increased likelihood of moderate–severe scores in all domains, with the highest score in pain (odds ratio [OR] 1.86, 95% confidence interval [CI] 1.68–2.05). In PC-naïve patients with moderate–severe scores, initiation of outpatient PC was associated with a 1- to 3-point decrease in subsequent scores, with the greatest reductions in pain (OR − 1.91, 95% CI − 2.11 to − 1.70) and nausea (OR − 3.01, 95% CI − 3.31 to − 2.71).

Conclusion — GI cancer patients experience high symptom burden in the final year of life. Outpatient PC initiation is associated with a decrease in symptoms.