Hospice Care Experiences Among Medicare Decedents With and Without COVID-19, 2020–2021

We describe a cross-sectional observational study comparing care experiences for Medicare hospice patients with and without COVID-19 diagnoses in 2020-2021. Care experiences declined slightly for patients without COVID-19 and by a medium-to-large amount for patients with COVID-19. Differences in care experience between patients with and without COVID-19 narrowed over time. The COVID-19 pandemic affected use of hospice care, limiting in-person visitation by hospice staff and straining the workforce. While some in-person visits were replaced with telehealth visits, these visits may have reduced opportunities to adequately assess patients, train caregivers, and provide support; additionally, not all patients and families had access to the needed technology. High hospice personnel turnover contributed to communication difficulty. Hospice care experiences were poorer for all hospice patients. Patients with COVID-19 diagnoses faced additional unique challenges, including further restrictions on contact with family and hospice staff, and, in some cases, unexpected symptoms, shortages of equipment for symptom management, or more rapid declines. Here, we estimate effects of the pandemic on caregiver-reported experiences of hospice care for decedents with and without COVID-19 diagnoses in 2020–2021, comparing them to experiences before the pandemic.