Abstract The Coronavirus Disease 2019 (COVID-19) pandemic has thus far caused 100,000 deaths in the U.S. and has disproportionately impacted vulnerable subpopulations, including those with underlying serious illness and those from racial and ethnic minority groups. As of June 2020, New York City (NYC) has seen 16,000 deaths and remains the global epicenter of the pandemic. Although public health containment and mitigation policies including social distancing, infection control, and self-quarantine are considered to have reduced transmission of COVID-19, they also brought about significant disruption in the way individuals sought and accessed care, particularly those with serious illness. Hospice organizations have played a key role in supporting seriously ill patients in their homes throughout the pandemic by ensuring effective symptom management (e.g., pain and dyspnea); psychological support for patients, caregivers, and healthcare professionals; and support for complex decision-making. Yet there has been scant evidence on hospice practices during COVID-19 and less guidance for hospice organizations throughout the U.S. to improve preparedness. Indeed, at the height of the pandemic, concomitant with the surge in demand for hospice care in NYC, we experienced a shortfall in hospice delivery, exposing latent vulnerabilities in the capacity of the existing system to respond to a crisis that demanded a coordinated, synchronized approach. In this innovative mixed methods study, we seek to gain an in-depth understanding of the challenges of delivering end-of-life care in NYC during the COVID-19 pandemic triangulating the experiences of patients, caregivers, and healthcare providers. Specifically, we will link clinical notes of patient encounters across Mount Sinai clinical programs and community hospice to create longitudinal trajectories of patients’ end-of-life care during the pandemic to elucidate barriers in access to hospice care and care coordination deficiencies experienced by patients and families during this time. We will augment this information with insights from in-depth interviews of key stakeholders including frontline clinical providers, program leadership, staff, and caregivers. Our interviews with interdisciplinary hospice personnel, will identify new policies and practices hospices enacted in response to COVID-19, barriers and facilitators to implementation, perceived impact, and sustainability. Finally, through a national survey of hospices, we will determine how implementation of policy and practice changes varied across the U.S. The proposed project is innovative for its rapid, mixed methods approach to studying a highly vulnerable population during a pandemic to inform current and future care planning and policy, using analyses of retrospective and prospective data in combination with qualitative interviewing. Results will contribute new scientific knowledge as to how hospices adapted care processes to improve patient and family end-of-life care during an emergency, inform the development of educational tools to promote emergency preparedness, and dissemination of guidance for hospices regarding strategies and adaptations to improve end-of-life care.

This proposal is relevant to public health because it examines the impact of public health containment and mitigation policies implemented during the COVID-19 crisis in the United States on the experiences of patients at the end of life and their families. Hospice is the dominant model of home-based care for those at the end of life and the proposed research will elucidate the ways in which hospices adapted their practices and implemented new policies in response to COVID-19 and in preparation for a broad range of future emergencies.