“I Don't Want Him to Be Scared and Alone”: A Mixed-Methods Examination of the Death Experience of Homebound Patients During New York City's Spring 2020 COVID-19 Surge (S556)

Abstract

Outcomes1. Characterize patients in a home-based medical care (HBMC) practice who died during the spring 2020 COVID-19 surge in New York City2. Identify health service and caregiving disruptions that occurred during the COVID-19 surge3. Identify home-based primary and palliative care practice adaptations to maintain care for homebound patients during the COVID-19 surgeOriginal Research BackgroundMuch COVID-19 research focuses on care in institutional settings, but less is known about the care experiences of homebound patients receiving home-based primary and palliative care in the community. Before COVID-19, these patients faced high symptom burden, multiple comorbidities, and high mortality.Research ObjectivesTo describe characteristics and care experiences of patients in a home-based medical care (HBMC) practice who died during New York City's (NYC) spring COVID-19 surge through a mixed-methods, retrospective electronic medical record (EMR) review.MethodsWe analyzed EMRs for all HBMC patients who died in the initial COVID-19 wave in NYC (March 1-June 30, 2020). We developed an abstraction tool to collect service-related measures (eg, phone calls, televisits), household and clinical characteristics (eg, dementia status), and clinical notes on key disruptions including those related to family caregiving, paid caregiving, medical supplies, and hospice.ResultsDuring the study period 112 patients died, twice the practice's usual monthly deaths. Thirty percent died from confirmed or suspected COVID-19, 73% died at home, and 46% were enrolled in hospice. Medical and service disruptions included medication shortages, delayed hospice enrollment, and suspension of nursing and hospice visits due to personal protective equipment and staff shortages. Caregivers experienced difficulties with long-distance care and frustration over service disruptions. HBMC providers adapted by conducting outreach via phone and telehealth and leveraging relationships with partners such as hospice and medical equipment vendors. Hospital restrictions and fear of infection increased caregivers’ and providers’ commitment to keeping patients at home at the end of life.ConclusionDisruptions in family caregiving and health services such as hospice during COVID-19 complicated the dying experience. HBMC providers were an important bridge between caregivers and supportive community and medical resources.Implications for Research, Policy or PracticeThe COVID-19 pandemic exemplified how home-based primary and palliative care can be an important resource at the end of life. Targeted resources are needed to support families in managing end-of-life care.