The Frequency and Severity of Hyperactive Delirium Among Home Hospice Care Patients During the Last Week of Life

Hyperactive delirium (HD), characterized by restlessness/agitation, hallucinations, and delusions, and can be very distressing to both patients and their caregivers. Symptoms of HD have been reported to increase at end-of-life (EOL) in palliative care and hospice inpatient settings, but less is known about patients experiencing HD in home hospice settings where care is typically provided by informal caregivers without medical training. Using a mixed methods explanatory sequential design, this study examined the frequency and severity of HD symptoms reflected in caregiver narratives written during 101 hospice patients' last week of life. Results indicated that 23.7% of patients (N = 24) experienced HD, and that caregivers documented behavioral symptoms more often than cognitive symptoms. Severe symptoms of HD were reported in 95.8% of patients. Incidents of HD peaked four days before death with the most severe symptoms occurring five days prior to death. The number of HD symptoms did not differ by gender or cancer diagnosis. Inductive content analysis revealed several caregiver challenges with themes highlighting barriers to quality care and situations placing caregivers at risk for burnout. Results of this study illustrate that incidents of HD can be frequent and severe during the last week of life, challenging caregivers and jeopardizing patient care. Results also underscore the need for additional support when managing symptoms of HD at home.