Froma Harrop: Pandemic makes end-of-life care harder
Summary: Caring and grieving have always been arduous work. As with so many other life events, the pandemic has made it all that much harder.
I just lost a dear elderly friend to cancer. Home hospice workers kept him comfortable. He spent his final weeks watching spring unfold in the outdoor Eden he had nurtured for decades. He died peacefully at night with me present.
My friend's death had little to do with COVID-19. One can say that he was spared the trauma of getting hit by that deadly virus in the jaws of a pandemic. He wasn't among the tragic thousands who died at home without medical attention. Nor did he pass away alone in a hospital that wouldn't let loved ones in for fear of spreading the virus. His nurses didn't have to FaceTime with loved ones to help them say goodbye.
But even so-called good deaths have been harder to achieve in the age of the coronavirus. When my friend exhibited signs of a stroke, I had to weigh the dangers of sending him to a hospital, where he might have gotten infected, over not attending to a possible health crisis.
I did call 911. As it turned out, he hadn't had a stroke (or COVID). Tests found evidence that the cancer's return affected speech. Reducing his calcium levels cleared up much of the immediate problem.
But during his three days in the hospital, neither I nor other caregivers were allowed to visit. The busy doctors offered us disjointed reports of what was going on — when they bothered (or had the minutes) to call at all.
Upon his return, we immediately signed up for services provided by Visiting Nurse & Hospice of Fairfield County in Connecticut. When you do that, emergency calls no longer go to 911 but to a number answered 24 hours a day by a hospice nurse.
When patients are nearing the end, hospice care emphasizes comfort and quality of life over harsh medical interventions. People in hospice often live longer than those undergoing radical treatments that weaken the body.
It may sound as though home hospice provided an island of calm far from the COVID front lines. It was far preferable to the harried and largely impersonal treatment in a hospital that focuses on keeping people alive at all costs.
But the virus made even home care with superb help complicated. Two appointments with his palliative care doctor had to be done via video calls. She did her best to assess what he needed but could not obtain important information only observable in a face-to-face consultation — things like checking the heart and weakness in the legs.
The hospice workers themselves face new challenges. Some family members are afraid to even have them in the house.
"I have one couple, both elderly," Jennifer Pool, a social worker with Visiting Nurse told me. "The wife is the caregiver right now." The woman asked her, "Should I have the aide come? I don't want to be the one to be responsible" for letting in the virus. And many such spouses are themselves older and medically vulnerable.
Frail elderly people may also fear allowing family to visit. And family members may share their concern.
Social distancing has forced hospices to cancel some of their services. They don't do massages these days, and it's difficult to offer spiritual guidance.
When the person dies, one can't safely hold a funeral if it draws a large crowd. A funeral home director told me that many families are announcing that a service will be held at some future date.
Those left behind may have to mourn their loss in isolation. Bereavement groups can't meet in person.
Caring and grieving have always been arduous work. As with so many other life events, the pandemic has made it all that much harder.
Froma Harrop can be reached at email@example.com or on Twitter @FromaHarrop.