Death and Grieving for Family Caregivers of Loved Ones With Life-Limiting Illnesses in the Era of COVID-19 Considerations for Case Managers

Purpose: Family caregivers of a loved one with a life-limiting or terminal illness are often overwhelmed by, and underprepared for, their responsibilities. They often need help from family members and friends to provide comprehensive care. When death occurs, funerals and other death-related rituals bring family and communities together to honor the life and mourn the death of a loved one and provide needed support to family and caregivers. These collective rituals are often deeply rooted in culturally-bound values and can facilitate grief and help make sense about loss. Rituals act as bridge-building activities that allow people to organize and appraise emotions, information, and actions after a loss. With the emergence of the coronavirus disease-2019 (COVID-19) pandemic and the recommended restrictions to reduce infection and transmission, family members and caregivers are often faced with weighing options for honored rituals to help them grieve. Grieving during the pandemic has become disorganized. The purpose of this article is to provide case managers and other clinical staff with recommendations on guiding caregivers/families through safety precautions when a loved one dies either because of a life-limiting illness or from COVID-19 during the pandemic using guidelines from the Centers for Disease Control and Prevention (CDC). The authors also present information about complicated grief and ways to support coping with death and suggest safe alternatives to traditional death-related rituals and funerals in a COVID-19 era. Primary Practice Setting(s): Primary practice settings include home health care, hospice, hospital discharge planning, case management, and primary care. Findings/Conclusions: Precautions necessary in a COVID-19 era may add anxiety and stress to an already difficult situation of caring for loved ones at end-of-life and grieving with their loss. Utilization of CDC guidelines lessens the risk of infection while honoring loved ones' wishes and cultural traditions surrounding death and burial. Recognition of social and spiritual connections that comfort mourners must also be considered. Implications for Case Management Practice: Safety precautions are necessary for families and informal caregivers when death occurs during the COVID-19 era. We need to understand the various constraints of existing resources associated with the death of a loved one (capacity limitations at funeral home, delayed memorial services) and devise creative alternatives. We must acknowledge the increased potential for delayed/prolonged/complicated grief. Identification of resources to support caregivers/families in coping with grief and loss during the pandemic restrictions is needed-mobilizing support in novel ways.