Pandemic Creates Push for Increased Hospice Caregiver Respite

A national study of hospice social workers indicated that the coronavirus pandemic has led to challenges of isolation, barriers to communication, and issues related to grieving among patients and the caregivers who support them. As hospice providers absorb the lessons of COVID-19, these issues have illuminated a growing need to allow in-home respite care, with social workers playing a key role in bolstering support.

The World Health Organization has reported that one in five people have fallen seriously ill to COVID-19 thus far, with recent data showing more than 1.5 million confirmed deaths globally. More than 280,000 have died in the United States alone since January, according to the U.S. Centers for Disease Control and Prevention (CDC). The deadly pandemic has overwhelmed the health care system at large, with serious implications for end-of-life care.

“Hospice patients are a tremendously vulnerable population, and one of the things we know about COVID is that in-home transmissions are rampant,” said study co-author, Megan Kale-Cheever, manager of quality and safety at Hospice and Palliative Care at Mount Carmel Health System in Columbus, Ohio. “Hospice teams are working with families to establish back-up caregiving plans or in-home isolation plans, should someone become ill. Everything is more complicated.”


The study, conducted between May 15 and June 15, 2020, examined the trajectory of the pandemic during what researchers called a period of transition for hospice providers. Study authors surveyed more than 200 hospice social workers who are members of the National Association of Social Workers listserv, as well as social media sites associated with Social Work Community, Hospice Social Workers, the Society for Social Worker Leadership, Social Workers in Nursing Facilities and Health Care, and the Social Work Hospice and Palliative Care Network.

Findings suggest that increased access to respite care would benefit patients and families strained by the pandemic. The COVID-19 pandemic has complicated hospices’ ability to provide respite care. Limited access to nursing homes, fears of spreading the virus and rising demand are throwing wrenches into providers’ respite programs.

Medicare typically allows respite care to be provided on an inpatient basis for as long as five days when their caregivers become sick themselves or otherwise need a rest or address other priorities. Providers typically offer this care in a hospice facility, hospital or nursing home. Respite is one of four levels of hospice care that Medicare covers, along with routine home care, continuous home care and general inpatient care.


“Expansion of respite benefits will be important,” said co-author Erika Gergerich, a licensed clinical social worker and associate professor at New Mexico State University. “During a time when hospitals and nursing homes are overburdened due to dealing with COVID-19 and precautionary measures, being able to take home loved ones so that they may die near family in peace is a blessing. In this, hospice may have the ability to offer an ‘out’ to concerned families with a patient in an institution. However, without respite, care may be overwhelming for family members already isolated as they care for their loved one.”

Congress is currently considering legislation that during any federally declared national emergency would increase the maximum length of stay for hospice respite care to 15 days, up from five days. If enacted, the bill would also allow hospices to offer respite care in the patient’s home. For the time being however, many hospices are between a rock and a hard place when it comes to respite care, in part because of the tremendous need spurred by the COVID-19 outbreak.

Survey respondents also cited isolation as a leading issue for patients, their families and caregivers in both facility and community-based settings, with some reporting a lapse of 10 to 12 weeks for patients seeing loved ones due to COVID-19.

Isolation has been a growing hurdle as the virus continues its spread, with many hospice providers facing the challenge of keeping patients and families connected, often at a distance through telehealth and other forms of virtual communication. According to Kale-Cheever, for families of patients who reside in congregate care settings subject to visitation restrictions, hospice provides a crucial bridge between the sick individual, the facility and the family. The hospice team provides updates, facilitates video chats and advocates for the patient on behalf of the family.

The study’s findings suggest that a focus on virtual communication, emergency planning by social workers and evidence-based interventions for persistent complex bereavement disorder are necessary to help hospice patients, families and staff weather the storm. While expanded telehealth flexibilities granted by the U.S Centers for Medicare & Medicaid Services (CMS) during the public health emergency allow providers to connect with patients from a distance, concern has been mounting over the quality of virtual emotional and spiritual support as thousands of families say goodbye to loved ones through screens.

Hospice social workers will have to play a key role in supplementing support for patients and families struggling with isolation, limited communication and grief, according to the study’s researchers.

“Hospice social workers have a lot of working knowledge about grief and complicated grief that needs broader application,” said Gergerich. “As our world enters a state of bereavement, hospice could take the lead in ensuring appropriate care for those grieving losses. Losses will be compounded by many variables, such as being unable to visit a loved one in their final days in an institution.”

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