When COVID Deaths Are Dismissed Or Stigmatized, Grief Is Mixed With Shame And Anger
Editor's note: A photo in this story contains language that some may find offensive.
Months after Kyle Dixon died, his old house in Lanse, Pa., is still full of reminders of a life cut short.
His tent and hiking boots sit on the porch where he last put them.
The grass that he used to mow has grown tall in his absence.
And on the kitchen counter, there are still bottles of the over-the-counter cough medicine he took to try to ease his symptoms at home as COVID-19 began to destroy his lungs.
Dixon was a guard at a nearby state prison here in rural, conservative Clearfield County, Pa. He died of the virus Jan. 20 at age 27.
His older sister Stephanie Rimel is overwhelmed with emotion as she walks through Dixon's home and talks about him.
"I'll never get to be at his wedding," Rimel says. "I'll never see him old. Like, that was the last birthday in September we got to celebrate with him."
Her grief, however, quickly turns to anger. Rimel recalls some of the misinformation that proliferated last year: Masks don't work. The virus is a Democratic hoax to win the election. Only old people or people who are already sick are at risk.
Rimel says her brother believed some of that. He heard it from other prison guards, from family and friends on Facebook, she says, and from the former president, whom he voted for twice.
These falsehoods and conspiracies fostered a dismissive attitude about the coronavirus among many rural Pennsylvanians, here where she and her siblings grew up. Because of the misinformation, Dixon didn't always wear a mask or practice physical distancing, Rimel says.
Some of those beliefs were even expressed by members of their family — making Rimel's grief more painful and isolating.
Rimel recalls a particularly tough time right after her brother had to be hospitalized. Even then, family members were repeating conspiracy theories on social media and bragging about not wearing masks, Rimel says.
Some of the same people who attended Dixon's funeral are still sharing misinformation related to COVID-19 online, says another sister, Jennifer Dixon.
"They're back to posting their same stuff," she says. " 'It's a hoax' — that sort of stuff."
Jennifer Dixon wishes those people could understand what her brother endured while hospitalized.
"I wish that they could have been there his last days and watched him suffer," she says. "Watch his heart still be able to beat. His kidneys still producing urine because [they were] so strong. His liver still working. Everything. It was his lungs that were gone. His lungs. And that was only due to COVID."
Both sisters wanted their brother's death notice to be unambiguous about what had killed him. It reads, "Kyle had so much more of life to live and COVID-19 stopped his bright future."
The notice also included a warning that the virus is real and can kill.
While these sisters have chosen to be outspoken about what happened, other families have opted to keep quiet about deaths from COVID-19, according to Mike Kuhn, a funeral director in Reading, Pa.
Kuhn's business did not handle Kyle Dixon's funeral, but over the course of the pandemic his chain of three funeral homes has helped bury hundreds of people who died from the coronavirus. He says about half of those families asked that COVID-19 not be mentioned in obituaries or death notices.
"You know, I've had people say, 'My mother or my father was going to die, probably in the next year or two anyway, and they were in a nursing home, and then they got COVID, and you know, I don't really want to give a lot of credence to COVID,' " Kuhn says.
Some families wanted to have their loved one's official death certificate changed so that COVID-19 was not listed as the cause of death, Kuhn adds. Death certificates are official state documents, so Kuhn couldn't make that change even if he wanted to so. But the request shows how badly some people want to minimize the role of the virus in a loved one's death.
Refusing to face the truth about what killed a family or community member can make the grieving process much harder, according to Ken Doka, who works for the Hospice Foundation of America and has written books about aging, dying, grief and end-of-life care.
When a person dies from something controversial, Doka says, that's called a "disenfranchising death." The term refers to a death that people don't feel comfortable talking openly about due to social norms.
Doka pioneered the concept in the 1980s, along with a related concept: "disenfranchised grief." This occurs when mourners feel they don't have the right to express their loss openly or fully because of the cultural stigma about how the person died. For example, deaths from drug overdoses or suicide are frequently viewed as stemming from a supposed "moral" failure, and those who are left behind to mourn often fear others are judging them or the dead person's choices and behaviors, Doka says.
"So for instance, if I say my brother died of lung cancer, what's the first question you're going to ask — was he a smoker?" Doka says. "And somehow, if he was a smoker, he's responsible."
Doka says he saw this dynamic a lot when the AIDS crisis first began in the 1980s. At conferences, doctors often called children with AIDS "innocent victims." Doka hated the term because it implied that the adults, in contrast, were somehow to blame and deserved to have the disease. "To me, anybody who had it was an innocent victim," he says.
These days, Doka predicts, Americans who have lost loved ones to COVID-19 in communities where the virus isn't taken seriously may also encounter similar efforts to shift responsibility — from the virus to the person who died.
Dixon's sisters have experienced that firsthand: When they tell people their brother died of COVID-19, they're often asked whether he had preexisting conditions or if he was overweight — as if he were to blame for his own death.
Countering such attitudes is difficult, Doka says, because people who believe falsehoods about the virus will continue to seek out information that confirms their beliefs. They will work hard to reject or dismiss any information that opposes those beliefs.
Those who criticize or dismiss victims of the pandemic are unlikely to change their minds easily, says Holly Prigerson, a sociologist specializing in grief. She says those judgmental comments stem from a psychological concept known as cognitive dissonance.
If people believe the pandemic is a hoax, or that the dangers of the virus are overblown, then "anything, including the death of a loved one from this disease ... they compartmentalize it," Prigerson says. "They're not going to process it. It gives them too much of a headache to try to reconcile."
Prigerson says trying to fight someone's cognitive dissonance rarely works. People double down on their beliefs when they are challenged, a concept known as the "backfire effect."
She advises that people whose families or friends aren't willing to acknowledge the reality of COVID-19 might have to set new boundaries for those relationships.
Prigerson says she had to cut ties with some of her relatives after her mother died of COVID-19.
As Rimel continues to mourn her brother's death, she has found relief by joining bereavement support groups with others grieving who agree on the facts about COVID-19. In August, she and her mother attended a remembrance march for COVID-19 victims in downtown Pittsburgh, organized by the group COVID Survivors for Change.
And in June, a headstone was placed on Dixon's grave.
The epitaph says "beloved son, brother & uncle" over the dates of birth and death and an engraved portrait of Dixon. Near the bottom, chiseled in the same formal font as everything else, is a blunt message for the public, and for posterity: F**k COVID-19.
The family's motivation for carving that into the headstone? It's simple, Rimel says: Long after they are gone, they want the truth to endure.
"We want to make sure that people know Kyle's story, and that he passed away from the virus."
This story comes from NPR's health reporting partnership with WITF and Kaiser Health News (KHN).
Copyright 2021 WITF