"There is no dignity in this": Understanding the experience of families facing death of a loved one during the COVID-19 pandemic

Abstract

The COVID-19 pandemic changed every aspect of how families managed the experience of dying loved ones. This Canadian study enrolled 24 immediate family members of patients who died of any cause during the COVID-19 global pandemic. Participants were interviewed, exploring their experiences from before hospitalization to death and bereavement including dignity related concerns. A qualitative study design rooted in constructivist grounded theory methodology resulted in a unique grounded theory framework. Three critical stages related to experiences of death and dying were identified: navigating community support and healthcare services, end-of-life care and experiences, and living with down-stream effects of dealing with death. Four cross-cutting core themes emerged, including impacts of public health restrictions, overwhelmed healthcare system, emotional burden on family members, and navigating family relationships. In anticipation of future global health crises or circumstances that preclude family presence, our study informs strategies to support and care for those whose loved ones are going to die.