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

Nov 16, 2020

Contributor: Diane E Holland,Catherine E Vanderboom,Ann Marie Dose,Derek Moore,Kelly V Robinson,Ellen Wild,Carole Stiles,Cory Ingram,Jay Mandrekar,Bijan Borah,Erin Taylor,Joan M Griffin

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

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 settings include home health care, hospice, hospital discharge planning, case management, and primary care.
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.
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About The Expert

Diane E Holland

Diane E. Holland, PhD, RN, is a researcher at the Mayo Clinic, Rochester, Minnesota. Her program of research is focused on improving the transitions of adult patients from the hospital to the community and includes identifying early in the hospital stay patients who will benefit from specialized discharge planning resources. Catherine E. Vanderboom, PhD, RN, is a researcher at the Mayo Clinic, Rochester, Minnesota. Her research is focused on community-based interventions to assist adults with chronic health conditions and caregivers providing at end-of-life care. Ann Marie Dose, PhD, RN, is a researcher and palliative care nurse at the Mayo Clinic, Rochester, Minnesota. Her program of research is focused on psychosocial interventions for individuals facing the end-of-life and their families. Derek Moore, MPH, MN, RN, is a PhD candidate at the University of Minnesota, School of Nursing, with his research area of focus in hospice and palliative home-based care. He has worked as an RN in both long-term and home care settings, in addition to previously serving as an epidemiologist for a county health department. Kelly V. Robinson, BA, RN, is a nurse care coordinator for Westat Research supporting research participants through Rise, Inc. She is also President of Black Nurses Rock-Twin Cities Chapter. She began her career in Atlanta, Georgia. Kelly has 26 years of nursing experience including postoperative care, orthopedics, oncology, pain management, operating room, and behavioral health. Ellen Wild, RN, CHPN, is a certified palliative care and hospice nurse. Her current role is as the intervention nurse for the Technology-enhanced Transitional Palliative Care for Family Caregivers in Rural Settings study. She is a certified hospice and palliative care nurse. Carole Stiles, MSW, LICS, is a clinical social worker whose current focus of work is with hospice and palliative care. She previously served as Director of Social Work, Mayo Clinic, Rochester, Minnesota. Cory Ingram, MD, is a consultant physician faculty member in the Center for Palliative Medicine at Mayo Clinic serving as the Medical Director for SEMN with research and quality improvement efforts focused on the delivery of palliative medicine to patients and families across various settings. Jay Mandrekar, PhD, is a biostatistician with research interests in applications of statistical techniques to clinical trials, retrospective studies, etc. He works with diverse groups of researchers, which include nurse scientists, clinicians, surgeons, laboratory scientists, and other data scientists. Bijan Borah, PhD, is a Professor of Health Services Research, Mayo Clinic College of Medicine, Rochester, Minnesota. He also leads the Economic Evaluation Service Program at the Kern Center for the Science of Health Care Delivery. His research focus is in the area of comparative effectiveness research. Erin Taylor, MSW, LICSW, is a Social Worker on the Technology-Enhanced Family Caregiver Study. Her prior work experiences include nursing home social work, hospice, mental health, and addictions. Joan M. Griffin, PhD, is a Professor of Health Services Research, Mayo Clinic College of Medicine, Rochester, Minnesota. She studies how to engage caregivers to improve transitions in care, assure care recipient’s safety, health outcomes, and quality of life, all while reducing the health risks associated with caregiving.

Catherine E Vanderboom

Ann Marie Dose

Derek Moore

Kelly V Robinson

Ellen Wild

Carole Stiles

Cory Ingram

Jay Mandrekar

Bijan Borah

Erin Taylor

Joan M Griffin

References

PubMed