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

Abstract

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:

Factors associated with pre-loss grief and preparedness in relatives of people with cancer during the COVID-19 pandemic: A cross-sectional study

“…This suggests that the COVID-19 pandemic has a significant impact on the grieving and caregiving process before a loss and represents another stress factor that should be considered in patient care. Therefore, this is the first study to confirm previous theoretical assumptions about the negative effect of the COVID-19 pandemic on the grieving process [ 19 , 20 ]. As COVID-19 related fears also emerged as a significant correlate for preparedness for death, it may further complicate preparation processes for the death of a loved one.…”

“…One example are COVID-19 related fears. While many studies assume negative effects of COVID-19 on the grieving process [ 19 ], studies investigating the effect of COVID-19 on bereavement mostly consist of expert opinions, commentaries or recommendations for research and practice, lacking of empirical studies [see 20 ]. Also, the individual prognosis of the loved ones may play a role in grieving and preparation processes [ 21 , 22 ], however, its relationship with pre-loss grief or preparedness has not been studied yet.…”

Death-coping self-efficacy and its influencing factors among Chinese nurses: A cross-sectional study

“…Studies [ 42 , 43 ] have shown that high self-efficacy can improve the quality of care and ultimately improve individual and organizational performance. Scholars [ 44 ] found that during the coronavirus disease-2019 (COVID-19) pandemic, an assessment by nurses found that the ward nurses experienced higher than normal levels of despair, social isolation, and physical symptoms due to grief. Japanese scholars found that only 27% of nurses performed palliative care family psychological support care [ 45 ].…”

Restricted visitation policies in acute care settings during the COVID-19 pandemic: a scoping review

“…Policies that mandate restricted family member visitation in acute care settings have been commonly enacted throughout the COVID-19 pandemic to help limit spread of the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) virus, reduce use of personal protective equipment (PPE), and organize care [ 7 , 8 ]. These restrictions have been reported to result in consequences for patients and families alike, such as distress [ 9 ], grief [ 10 ], impaired coping [ 10 ], and reduced quality-of-life [ 11 ]. Restricted visitation policies have also been reported to impact mental health and well-being of healthcare professionals, including peritraumatic dissociation [ 12 ], moral distress (when one feels the ethically correct action is different from what one is doing) [ 13 , 14 ], burnout (exhaustion from excessive, prolonged stress and general stressors in the work environment), and compassion fatigue (triggered by continual use of empathy and emotional energy) [ 15 ].…”