End-of-Life Care During COVID-19: A Mixed Methods Analysis of Homebound Patients Cared for via Home-Based Primary and Palliative Care in New York City (RP510)

OUTCOMES: 1. Characterize patients in a home-based primary and palliative care (HBMC) practice who died during the spring 2020 COVID-19 surge in New York City 2. Identify multiple levels of disruption that occurred during the COVID-19 surge 3. Describe three ways that home-based medical and palliative care practices are positioned to support end-of-life care for homebound older adults during emergencies IMPORTANCE: COVID-19 end-of-life research has focused primarily on patients who died in hospitals and nursing homes. Less is known about homebound patients receiving home-based primary and palliative care (HBMC) in the community. OBJECTIVE(S): To describe characteristics and end-of-life care experiences of patients in an HBMC practice who died during New York City's initial 2020 COVID-19 surge. METHOD(S): Mixed-methods, retrospective quantitative and narrative analysis of demographic, clinical, and end-of-life data from unstructured electronic medical record notes for all patients who died between March 1 and June 30, 2020. RESULTS: 112 (9%) of the practice's 1,300 patients died during this period, with the average monthly mortality rate doubling in April 2020, the peak of the NYC surge. Thirty-four (30.4%) had confirmed or probable COVID-19. 58 (52%) were referred to hospice, and 50 enrolled. Eighty-two patients (73%) died at home. Our qualitative analysis found that COVID-19 disrupted regular caregiving routines, often requiring new or inexperienced caregivers to step in; rapidly evolving COVID-19 knowledge and protocols complicated access to services (e.g., requiring patients to present a negative COVID-19 test to begin hospice despite testing shortages); avoiding hospitals and emergency departments became an urgent concern due to visitor restrictions and families’ fears of loved ones dying alone; and COVID-19 complicated ongoing care for complex conditions (e.g., continuing dialysis for COVID+ patients). Throughout the surge, the HBMC team drew on their collaborative practice and longstanding relationships with patients, families, and hospice and home care providers to navigate service disruptions and provide comfort and emotional support. CONCLUSION(S): Overall, COVID-19 created severe disruptions and barriers to necessary care, further complicating care for this very high-risk, high-needs population. HBMC played an integral role in supporting patients and their families through the pandemic surge. IMPACT: As a model focused on interdisciplinary, whole-person care for medically complex patients, HBMC may be uniquely positioned to support homebound patients at the end of life, both during emergencies and beyond.