When COVID-19 deaths aren’t counted, families pay the price

On Sundays, Bishop Bruce Davis preached love. Through his Pentecostal ministry, he organized youth parades and gave computers, bicycles, and food to families in need.

During the week, Bruce practiced what he preached, caring for prisoners at a Georgia hospital. On March 27 he began coughing, and on April 1 he was hospitalized. He’d tested positive for COVID-19. The virus swept through his household, infecting his wife and daughter, and hospitalizing their disabled son. Ten days after landing in the hospital, Bruce died.

But when Gwendolyn Davis received her husband’s death certificate, she was taken aback. The causes of death? Sepsis and renal failure. No mention of COVID-19.

“He wouldn’t have had kidney failure if he didn’t have COVID,” Gwendolyn said.

After Bruce died, his wife applied to two pandemic relief programs seeking help with $1,500 in missed payments on a truck and an electricity bill. But, she said, she was denied because his death certificate didn’t mention COVID-19.

“I think it’s wrong,” Gwendolyn said. “It’s almost like we didn’t count.”

The count has profound implications for families and the country. Omitting COVID-19 on death certificates threatens to undercount the toll of the pandemic nationwide. For Davis’ family and others, it can pile financial hardship onto emotional despair, as death benefits and other COVID-19 relief programs are withheld. Interviews with families across the U.S. shed light on reasons COVID deaths are being undercounted — and the consequences loved ones have endured.

When COVID patients die, the “immediate” cause of death is always something else, such as respiratory failure or cardiac arrest. Residents, doctors, medical examiners, and coroners make the call on whether COVID was an underlying factor, or “contributory cause.” If so, the diagnosis should be included on the death certificate, according to the Centers for Disease Control and Prevention.

Even beyond the pandemic, there is wide variation in how certifiers describe causes of death: “There’s just no such thing as an objective measure of cause of death,” said Lee Anne Flagg, a statistician at the CDC’s National Center for Health Statistics.

Partly because of a lack of training in how to fill them out, “the quality of the death certificates is not good,” said James Gill, vice president of the National Association of Medical Examiners. And in cases in which people had other chronic conditions, it can be difficult to determine whether COVID was a contributing cause of death, he said. That was especially true early on, when reliable testing was not widely available.

Since early in the pandemic, the CDC has encouraged certifiers who suspect COVID as a cause of death to list it on the death certificate as “probable” or “likely.”

Still, some clinicians are “reluctant to certify a death as a COVID death without a test in hand,” Gill said.

It’s not clear how Bruce Davis’ case slipped under the radar. His death was certified by William Ken Garland, deputy coroner in Baldwin County. Reached by phone, Garland said the causes of death were provided by Joseph Coppiano, a medical resident who pronounced Davis dead at Augusta University Medical Center, about 90 miles away. No autopsy was done.

“I did certify the record, but that’s about all I did,” Garland said.

Hospital spokesperson Danielle Harris declined to comment on the case, citing patient privacy. She said the hospital follows Georgia Department of Public Health guidelines.

In the absence of certainty, the CDC has encouraged coroners to document the virus. “We’re not worried that we’re overcounting the number of [COVID-19] deaths,” Farida Ahmad, epidemiologist and mortality surveillance team leader at NCHS, said in April.

Missed cases are one reason that experts agree COVID deaths are being undercounted nationwide. As evidence for that, they point to the vast number of excess deaths — additional deaths compared to what would be expected based on prior-year numbers and demographic trends.

Over the past year, the U.S. had endured up to 431,792 excess deaths as of Jan. 6, with 68% directly attributed to COVID, according to the CDC.

These excess deaths “tend to track pretty closely with COVID cases, trailing by a couple of weeks,” said Daniel Weinberger, an epidemiologist at Yale School of Public Health who has published on this topic. “This strongly suggests that a large proportion of these uncounted deaths are due to COVID but not recorded as such.”

We may never know how many COVID deaths went uncounted: Postmortem tests can detect the virus, but it’s “unlikely that this type of testing will be performed at a [sufficient] scale,” Weinberger said. Early in the pandemic, especially in the Northeast, many of those who were treated clinically for COVID and then died were not tested for the virus — so they never made it into the statistics.

Inaccurate death certificates can make it harder to pursue a lawsuit or win a workers’ compensation case when a loved one dies after contracting COVID on the job. Gwendolyn Davis did win workers’ compensation death benefits from Bruce’s employer, a state psychiatric facility in Milledgeville, by providing medical records. But problems with COVID testing can complicate the process.

Bruce’s supervisor at work, Mark DeLong, also died after contracting COVID, but it did not appear on his death certificate with the other causes: cardiopulmonary arrest, respiratory failure, and diabetes.

The omission on DeLong’s certificate seemed to stem from a delay in test results: His COVID-positive results didn’t arrive until three days after he died, according to his widow, Jan DeLong. She has asked the local coroner to correct the record.

In New Jersey, attorney Paul da Costa represents 75 family members who lost loved ones at veterans homes in Menlo Park and Paramus in April and May. He said he knows of at least five patients whose death certificates did not list COVID-19 despite evidence suggesting it killed them.

The root problem, he said, was a “complete dearth of testing.” Patients were transferred to hospitals, or dying in the veterans facilities, without ever being tested, he said.

The gap between excess deaths and confirmed COVID deaths has “narrowed over time as testing has increased,” Weinberger said.

Early testing inaccuracy may also have led to undercounting, which creates a different burden: hospital bills. Without a diagnosis, families can be on the hook for thousands of dollars in charges that otherwise would have been covered under the CARES Act.

In some cases, families have sought to have death certificates changed to reflect COVID. Dorothy Payton, 95, who lived in the ManorCare nursing home in Denver, first showed COVID symptoms April 5. Five days later, Payton — known as “Nana Dee” — tested positive for it. And on April 13, her husband, Edward Benjamin, received a call that she had died.

The death certificate offered a litany of causes: vascular dementia, atrial fibrillation, congestive heart failure, gait instability, difficulty swallowing, and “failure to thrive.”

But not COVID-19. So it “seemed logical to fight for listing her cause of death under her cause of death,” Benjamin said.

After a few calls, her husband was able to get the certificate amended. ManorCare could not be reached for comment.

For Benjamin, it wasn’t about public health statistics or financial considerations. It simply offers a sense of closure.

“I want her life and death remembered the way it was, and I’m glad we set the record straight,” he said. “It’s the first step towards moving on.”

Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of KFF (Kaiser Family Foundation), which is not affiliated with Kaiser Permanente. This story is part of “Lost on the Frontline,” an ongoing project from The Guardian and KHN.