Hyperactive Delirium During Hospice Patients’ Last Week of Life in a Home Care Setting

Symptoms of hyperactive delirium (HD) including restlessness, agitation, hallucinations, and delusions, can be very distressing to patients and their caregivers. HD has been shown to increase as death approaches in inpatient care settings, but less is known about HD in home hospice settings where care is often provided by informal caregivers. Objective: Characterize instances and severity of HD symptoms during home hospice patients’ last week of life. Using a mixed-methods approach, care records chronicling 24/7 care decisions of 101 hospice patients were reviewed to gain a deeper understanding of HD and caregivers’ experiences with HD symptom management and care provision. Using the Confusion Rating Scale (CRS) and Nursing Delirium Screening Scale (NDSS) as guides, patient records were reviewed to identify incidents of HD. HD incident severity was assessed both quantitatively via frequency of symptoms per day and total incidents in the last week of life and qualitatively through thematic analyses of caregiver descriptions of incidents. HD symptoms were referenced in 32.6% of patients (N = 29). Among those who received care for at least 7 days prior to their death (N = 19), a total of 133 HD incidents were recorded. HD symptoms increased steadily in the last week of life and caregiver narratives described challenges with symptom management. The frequency and severity of HD symptoms described illustrate significant challenges to caregivers, underscoring the need for additional caregiver support in the last week of life to improve quality care for home hospice patients experiencing HD.