Do the Trajectories of Dyspnea Differ in Prevalence and Intensity By Diagnosis at the End of Life? A Consecutive Cohort Study

Abstract Context Breathlessness reportedly worsens as death approaches for many people, but the differences in intensity and time course between underlying causes are not well described. Objectives To determine differences in the intensity of breathlessness by diagnosis over time as death approaches in a consecutive cohort seen by a specialist palliative care service. Methods Patients referred to Silver Chain Hospice Care Service over a period of four years (January 2004 to December 2007) had dyspnea evaluated at every clinical encounter until death. A numeric rating scale (NRS) was used to measure the intensity. Patients were categorized into five clusters (lung cancer, secondary cancer to lung, heart failure, end-stage pulmonary disease, and no identifiable cardiorespiratory cause) at three time points (60–53 [ T3 ], 30–23 [ T2 ], and 7–0 [ T1 ] days before death [ T0 ]). Group differences were assessed using analysis of variance. Joinpoint regression models defined significant changes in mean breathlessness intensity. Results For 5,862 patients, data were collected an average of 20 times (median: 13; 116,982 data points) for an average of 86 days (median: 48). Breathlessness was significantly higher at all three time points in people with noncancer diagnoses. Breathlessness increased significantly at days 10 and 3 before death for people with cancer ( P < 0.001 for both), but remained unchanged, albeit significantly higher for patients with noncancer diagnoses. In the three months leading to death, the prevalence of “no breathlessness” decreased from 50% to 35%, and the proportion of patients with severe breathlessness (>7 out of 10) increased from 10% to 26%. Conclusion Prevalence of breathlessness increases rapidly at life's end, especially for people with primary lung cancer; the levels of breathlessness became close to those experienced by people with noncancer diagnoses despite symptom control measures.