In one Missouri county, coroner excludes COVID from death certificates if family asks

Macon County Coroner Brian Hayes handles the death certificates for this cattle, corn and soybean region of 15,000 in north-central Missouri, near Kirksville — roughly 130 to 140 deaths each year. That includes certifying the deaths of the few dozen residents who have succumbed to the coronavirus.

And in some cases, it has meant excluding COVID-19 from death certificates.

COVID-19 is as much a political issue as a personal tragedy for some families. They don’t want the virus on any official record for their dead loved one. For others, restrictions on hospital or nursing home visits made death and the grieving process almost unbearable. The word “COVID” had become a cruel reminder of how they couldn’t see their family members as they lay dying and, ultimately, of what they had lost.

So the solution: Leaving COVID-19 off the death certificate entirely — an ethically questionable approach frowned on by much of the U.S. medical community as it tries to ascertain the the deadly extent of the pandemic in rural sections of the country and halt its spread.

The Macon County coroner omitted COVID-19 on at least a half-dozen death certificates in cases where another major factor — pneumonia in an elderly patient or “you know, grandma had one lung and smoked all her life,” for example — could be justified as the sole cause of death.

“A lot of families were upset. They didn’t want COVID on the death certificates,” Hayes said in an interview. “I won’t lie for them, it’s gotta be true, but I do what pleases the family.”

Allowing families to omit COVID-19 on loved ones’ death certificates has changed Macon County’s official coronavirus death toll from upwards of 30 down to 19, according to state and local estimates. The lower death toll is also reflected in statewide figures maintained by the Missouri Department of Health and Senior Services.

The administrator of the Macon County Health Department, Mike Chambers, said that while he doesn’t agree with the coroner’s decision to exclude COVID-19 from some death certificates, he can “see both sides.”

“There are viruses out there that are so similar to COVID, like the flu, and unless you do a test to confirm, you just don’t know,” Chambers said. “If you can link it to a known case, maybe, but we’ve had people that were exposed but their tests turned up negative.””

According to the CDC, a case of COVID-19 started the chain of events that ultimately led to someone’s death in roughly 92% of cases where coronavirus is listed somewhere on a final death certificate. For example, if someone has a terminal illness, such as cancer, COVID-19 is only included as a cause of death if the person would have lived longer without contracting the virus.

In response to questions about its process of reporting COVID-19 deaths and coroners choosing to not include the virus on death certificates, the Missouri Department of Health said in a statement that “there has been substantial misinformation aimed at both understating and overstating the impacts of COVID nationally. As such, Missouri has chosen to remain consistent in our determination process, verify it against a national standards process by CDC’s [National Center for Health Statistics], and report consistently.”

Missouri is one of a handful of states that doesn’t count “probable” COVID deaths — those missing a positive PCR COVID test — on its online dashboard or in official state tallies. The Department of Health said it has sought to not count these to avoid “further mistrust and confusion” among Missourians and works with the CDC to seek corrections to death certificates, as they arise.

The reason for the purposefully limited counting of COVID deaths, according to one state health official, is a decision made by the state health department’s “prior leadership,” alluding to former DHSS director Dr. Randall Williams, a confidant of Gov. Mike Parson, who resigned in April.

“There was some long conversations as case definitions came down … and, at the time under prior leadership, the decision was made not to include probables,” said Ken Palermo, state registrar of vital statistics, during the call, which was recorded and shared with the Documenting COVID-19 project. “Not to indict prior leadership, but that’s how that decision came to be.”

But state health officials did not answer questions about how many probable COVID-19 deaths have been recorded.

‘It’s not up to them. That’s his job’

Macon County, dotted by farms, is bisected by U.S. Highway 63, which passes through an aging downtown featuring a handful of chain stores, auto and boat repair shops and a livestock market. The pandemic, even with a quickly-spreading new variant, is a contentious subject.

Vaccination is so controversial that some Missouri residents got their shots in disguise and asked for anonymity, a pharmacist in the Ozarks said in a video posted to social media. But in most counties, the vaccine hesitant aren’t changing their minds. Just 38% of Macon County residents 18 and older are fully vaccinated, below Missouri’s statewide average of 51.3%.

As residents sat and talked outside their shops in downtown Macon this week, very few wore masks. The select few that do typically work for the county health department.

“I decided to stop wearing the mask and everything after I was vaccinated,” said Gloria Guinn, a retired school teacher. “You can flip flop back all over the place, but I’m just done with it.”

For others, the politics and conspiracy theories surrounding the pandemic are still prime dinner table talk, and have led many to resist calls to wear masks, get vaccinated and to acknowledge that several of those who died over the past 18 months had contracted the virus.

“They think it’s so taboo,” said Cheryl Blaise, 68, who retired from Missouri’s health department and now is a part-time employee for Macon County’s health department. “It’s kind of like, ‘Oh my God, you’ve got HIV and you died from it, we’re not putting that on the death certificate.’ But you would certainly put influenza on there.”

“I think from what they heard, it’s a money thing,” said Charlie Burkhardt, 73, who is a retired auctioneer. “Whether it be money going to the doctors or money going to the hospitals.”

Leaving politically touchy illnesses off of death certificates is not a new phenomenon.

During the AIDS epidemic, families requested that AIDS and HIV be left off final death certificates because of the perceived stigma it would bring to both the memory of the dead and to the surviving family. By the mid-1980s, the practice had become routine.

‘We do it all the time. We routinely honor the request of the family and don’t put it on,’‘ an AIDS researcher associated with Harvard Medical School told The New York Times in 1986. ‘‘I feel a moral obligation to protect the patient and his or her family.”

In 1990, as AIDS-related illness was spreading fast in rural counties, the Missouri Health Department estimated that 1,301 people in the state had contracted the virus in the preceding seven years, resulting in 719 deaths. The true case and death tolls were considerably higher, they acknowledged at the time.

Today, public health experts say Macon County’s approach flies in the face of a coroner’s duty — and could ultimately make it harder to fight the virus.

While it’s unclear how widespread the practice of leaving COVID off of death certificates is in Missouri, the CDC’s Dr. Anderson said Macon County’s deference to families’ wishes concerned him “a lot.”

“It should be the medical examiner, the coroner’s decision as to whether COVID-19 goes on the death certificate or not. And it shouldn’t be left up to the family,” he said.

Pettis County Coroner Robert “Skip” Smith, an elected official in the west central Missouri county of 40,000, said he was also asked to add or remove COVID-19 as a cause of death by families but refused.

“Now everybody wants it on the death certificate because they get (money) from FEMA, where before, nobody wanted COVID on it,” Smith said. “In my personal opinion, a coroner shouldn’t be asking a family what they want on it. It’s not up to them. That’s his job...To me, that’s unethical.”

A former U.S. Marine, Hayes is an elected official in Macon County, having successfully run for office six times over the past 20 years. In 2020, he ran unopposed in the Republican primary and general election for a new four-year term. He also is a partner and funeral director for the Greening-Eagan-Hayes Funeral Homes, a group of funeral home offices in the region.

In a few cases in both Pettis and Macon counties, families have requested COVID-19 be added back on after rumors circulated that FEMA was going to give away money to people whose family members died of COVID. (FEMA has a government assistance program that can reimburse up to $9,000 per funeral for those who died of the virus.)

Figures that don’t match

The deliberate undercounting of COVID-19 deaths in Macon County speaks to a larger truism in Missouri:

Since the beginning of the pandemic, the state has taken a markedly conservative approach in counting COVID-19 deaths. It does not count probable COVID-19 cases without a positive PCR test, including those with documented symptoms and confirmed exposure to the virus, as federal guidance allows.

The process for linking a death certificate with a positive COVID test in Missouri is both complicated and lengthy, taking up to five weeks if each step goes smoothly. And it can create significant discrepancies between local health departments and state data.

Missouri data shows 80,000 fewer cases and 1,000 fewer deaths than local health departments, mostly due to local departments counting probable cases and those with antigen tests. Like Missouri, New York has also undercounted COVID-19 deaths — the federal government lists 11,000 more victims with death certificate data than the state dashboard. That’s because the state excluded probable cases and those with only a positive antigen test from its death counts.

Missouri is also one of five states that doesn’t count antigen tests in its COVID-19 state case count, alongside California, Colorado, Maryland and Nevada.

Christopher Prener is an assistant professor of sociology at Saint Louis University and runs a website that tracks COVID-19 data across the state. He said that leaving out deaths with positive COVID-19 antigen tests, coupled with the state’s slow reporting, creates a gap between hospital and death statistics, especially in rural counties that favored antigen tests because they are less expensive.

“At first it wasn’t a big deal because antigen tests made up like a really tiny share of the overall testing regimen. But by Christmas, it was becoming clear that the antigen tests were a bigger and bigger chunk of the tests that were being used,” he sai.

The undercounting of COVID deaths can lead to a number of issues, on top of the noticeable gap in a state’s overcrowded hospitals versus its surprisingly low death rate.

Unintended consequences

The undercounting of COVID-19 deaths can also lead to other unintended issues, said Dr. Georges Benjamin, the executive director of the American Public Health Association, a nonprofit organization for public health leaders.

“It has fiscal implications. It has implications around infectious diseases, and for the science … We make a lot of decisions about how we distribute resources based on the incidence of a disease in a community,” he said.

Through the CARES Act for coronavirus aid, the federal government pays an additional 20% on top of traditional Medicare rates for COVID-19 patients during the public health emergency. The government also reimburses hospitals for treating uninsured patients with the virus.

But if those patients are not ultimately listed as being a confirmed COVID case, the reimbursements might not be paid. That can create a missed financial opportunity for frequently overburdened rural hospitals.

The Macon County Samaritan Memorial Hospital, a nonprofit facility, has just 25 beds and, last year, reported just $538,000 in net revenue from patients. The hospital applied for and received between $1 million and $2 million in federal COVID loans.

At various points this year, more than 80% of Macon’s beds have been filled.

What Chambers and the Macon County Health Department are seeing now: A new mix of COVID symptoms, including surprisingly low oxygen levels in younger, unvaccinated patients. Of the 34 new cases in Macon County this week, just four are vaccinated, and five people are hospitalized.

“Those cases are not well, they are really sick, and that bothers me,” Chambers said.