The level of distress from fatigue reported in the final two months of life by a palliative care population; An Australian national prospective, consecutive case series

Abstract Context Fatigue is the most commonly reported symptom in life-limiting illnesses, though not much is known about the distress it causes patients as they approach death. Objectives To map the trajectory of distress from fatigue reported by an Australian palliative care population in the last 60 days leading up to death. Methods A prospective, longitudinal, consecutive cohort study using national data from the Australian Palliative Care Outcomes Collaboration between 1 July 2013 and 31 December 2018. Patients were included if they had at least one measurement of fatigue on a 0-10 numerical rating scale in the 60 days before death. Descriptive statistics were used to analyse patients by diagnostic cohort and functional status. Results A total of 116,604 patients from 203 specialist palliative care services were analysed, providing 501,104 data points. Distress from fatigue affected up to 80% of patients referred to palliative care, with the majority experiencing moderate or severe distress. Malignant and non-malignant diagnoses were equally affected, with the neurological cohort showing the greatest variability. The degree of distress correlated with a patient’s functional level; it worsened as a patient’s function declined until a patient became bedbound when the reporting of distress reduced. Conclusions Distress from fatigue is high in this cohort of patients. Interventions to reduce this distress need to be a research priority.