Hospice and Palliative Care During COVID-19 in New York City: Clinician-Reported Patient and Family Experiences and Lessons for Future Crises

Abstract

Objectives

The COVID-19 pandemic complicated hospice and palliative care (HPC) experiences of patients and family caregivers. We sought to understand HPC professionals’ perceptions of patients’ and family caregivers’ HPC experiences during the COVID-19 pandemic in New York City and to make recommendations for improving HPC delivery during future public health crises.

Methods

This was a qualitative descriptive study among a purposive, multidisciplinary sample of HPC team members at two large New York City metro hospice care organizations and one outpatient palliative care practice. Following individual interviews, we analyzed demographic data using descriptive statistics and interview data using inductive thematic analysis.

Results

Participants (n = 30) included nurses, physicians, social workers, chaplains, community health workers, and administrators and averaged 17 years in their profession and 10 years in HPC. Three themes characterized their perspectives on patient and family caregiver HPC experiences. Grappling with Tensions captured strains arising from a time of high patient/family needs and low HPC resources that related to care resources/delivery, patient-caregiver-HPC communication, and hospice policy/guidelines. Managing Dilemmas involved negotiating difficult choices around prioritizing patients for care by diagnosis/need, balancing necessary care and exposure risks, and prioritizing patient visitors (family/professionals). Experiencing Amplifications described intensification of existing HPC challenges including distressing deaths, misconceptions of hospice, family caregiver burden/distress, racial/ethnic disparities, and staff workload and turnover.

Conclusions

To strengthen HPC delivery during crises that disrupt in-person HPC, we recommend enhancing continuity of care, expanding telehealth within hybrid care models, providing structured training and support for family caregivers, improving equitable access to high-quality HPC, and addressing workforce issues.