New Things to Consider as Risk Factors for Complicated Grief
F. Amos Bailey, MD Mar 30, 2020Dr. Deborah Birx said she remembered the guilt borne by her grandmother who caught the Spanish Flu at school and brought it home. Her grandmother’s Mom fell sick and died.
"My grandmother never forgot that she was the child who innocently brought that flu home from school and passed it to her mother," Birx said. "My grandmother lived with that for 88 years ... this is not a theoretical. This is a reality."
Some version of this story has already occurred with COVID 19 and will keep happening over the next year. “Did I bring COVID home? “ “Did Nana catch Corona Virus from a grandchild?” “Did we transmit this to a colleague or friend?” “Did we... Did we…?”
There is going to be a lot of second guessing. Many are likely to die but many more will live with questions about their role in spreading the disease. This will take serious self-reflection, counseling and discussion with clergy, psychologist and healthcare providers. Palliative Care has unique experience and expertise with grief and bereavement and if we dig deep enough, we have experience with epidemic.
In 1989, as a new Home Hospice Medical Director, I visited a young man dying in his home from HIV/AIDS. I attempted to console the family and checked to see if there were symptoms we could assist with but he was minimally responsive.
Within a few weeks I received a call from a nursing colleague asking me if I would treat him for HIV. As an Oncologist this seemed a strange request and I asked him “Why me?”. He replied “Because you visited someone with AIDS in their home.”
This was the beginning of a 10-year period in which a significant part of my practice was devoted to HIV/AIDS. With HAART therapy, HIV turned into a chronic disease. As I turned my focus to full-time work in Hospice and Palliative Care, I passed my HIV patient list on to a newly minted Infectious Disease doctor.
What I remember most from that experience is the guilt and shame people felt about having passed the HIV virus onto friends and loved ones. Survivors guilt, “Why did I survive but not my partner or friend?” and social isolation from stigma, fear of contagion and the breakdown of family and community connections.
What we can do is listen. We can anticipate that there would be these kinds of responses to the death of a loved one. We can normalize and refer as needed. We can add COVID to our list of issues to consider when screening for Complicated Grief.