Distress Due to Prognostic Uncertainty in Palliative Care: Frequency, Distribution, and Outcomes among Hospitalized Patients with Advanced Cancer

Background: Prognostic uncertainty is common in advanced cancer and frequently addressed during palliative care consultation, yet we know little about its impact on quality of life (QOL). Objective: We describe the prevalence and distribution of distress due to prognostic uncertainty among hospitalized patients with advanced cancer before palliative care consultation. We evaluate the association between this type of distress and overall QOL before and after palliative care consultation. Design: Observational cohort study. Setting & Participants: Hospitalized patients with advanced cancer who receive a palliative care consultation at two geographically distant academic medical centers. Measurements: At the time of enrollment, before palliative care consultation, we asked participants: Over the past two days, how much have you been bothered by uncertainty about what to expect from the course of your illness? (Not at all/Slightly/Moderately/Quite a Bit/Extremely). We defined responses of Quite a bit and Extremely to be indicative of substantial distress. Results: Two hundred thirty-six participants completed the baseline assessment. Seventy-seven percent reported being at least moderately bothered by prognostic uncertainty and half reported substantial distress. Compared with others, those who were distressed by prognostic uncertainty (118/236) reported poorer overall QOL before palliative care consultation (mean QOL 3.8 out of 10 vs. 5.3 out of 10, p=<0.001) and greater improvement in QOL following consultation (Adjusted difference in mean QOL change=1.1; 95% confidence interval=0.2, 2.0). Conclusions: Prognostic uncertainty is a prevalent source of distress among hospitalized patients with advanced cancer at the time of initial palliative care consultation. Distress from prognostic uncertainty is associated with lower levels of preconsultation QOL and with greater pre-post consultation improvement in the QOL.