Hospices Help Families Address Disenfranchised Grief

Hospices routinely provide bereavement care to family members after a patient reaches the end of life, but increasingly during the COVID-19 pandemic they are seeing more people afflicted with disenfranchised grief.

Disenfranchised grief is a form of bereavement that is not acknowledged as legitimate by others or even by the families themselves. Research indicates that disenfranchised grief can extend and intensify the grieving experience, interfere with a person’s processing of grief and lead to decreased social support during bereavement, as well as exacerbate sadness, anger, guilt and loneliness.

Some bereaved individuals self-disenfranchise, in which they question the validity of their own experience. This is what hospices are finding during the pandemic.

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“Patients who are kind of caught in the wake of the COVID epidemic where they’re not able to see their family members who may not be COVID positive, but they are sometimes even feeling that their grief isn’t as warranted because they’re not part of this pandemic, but they still have loved ones who are dying. It is a traumatic loss,” Marie Sheedy, nurse practitioner at Jefferson Health Home Care and Hospice said in a U.S. Centers for Medicare & Medicaid Services (CMS) stakeholder call on the pandemic.

Complicating hospices’ response to these situations is the disruption to traditional forms of bereavement care — such as counseling, chaplain services and support groups — due to the need for social distancing and shelter-in-place orders in many states.

As hospices innovate to maintain the continuity of care with also reducing the risk of spreading the virus, many have turned to telehealth to provide interdisciplinary services, including bereavement care. One-on-one or family discussions with chaplains and social workers, or participation in support groups, are moving online along with activities such as face-to-face recertifications and some routine home care visits.

Further complicating bereavement care is the limited access that families have to their dying loved ones, particularly those who live in nursing homes or receive treatment in inpatient facilities. Many families are saying goodbye through a barrier or through a screen or are having to choose only one or two members who can be present with the patient.

“I think it was acknowledged at the beginning of this that many folks are dying alone, their family is limited, unable to visit and that the COVID pandemic has created a novel grief experience,” said Carl Wenzel, M.D, medical director for Jefferson Health System Hospice, in the CMS call.

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