Inaccurate death certificates hide the true toll of COVID-19
The Documenting COVID-19 project and USA TODAY Network
In late January, the official death toll from COVID-19 in Lafayette Parish, Louisiana, stood at 210.
At a makeshift memorial at a local Episcopal church, friends and relatives planted small, white flags representing how many people had died. Some inscribed flags with the names of those they had lost.
But a couple hundred flags were missing. Those people almost certainly died from COVID-19, according to an examination of newly released data from the Centers for Disease Control and Prevention, but their death certificates don’t mention it. Instead, they list conditions with symptoms that look a lot like COVID-19, such as Alzheimer’s disease, hypertension and diabetes.
Nationwide, nearly 1 million more Americans have died in 2020 and 2021 than in normal, pre-pandemic years, but about 800,000 deaths have been officially attributed to COVID-19, according to the CDC data. A majority of those additional 195,000 deaths are unidentified COVID-19 cases, public health experts have long suggested, pointing to the unusual increase in deaths from natural causes.
An investigation by Documenting COVID-19, the USA TODAY Network and experts reveals why so many deaths have gone uncounted: After overwhelming the nation’s health care system, the coronavirus evaded its antiquated, decentralized system of investigating and recording deaths.
Short-staffed, undertrained and overworked coroners and medical examiners took families at their word when they called to report the death of a relative at home. Coroners and medical examiners didn’t review medical histories or order tests to look for COVID-19. They and even some physicians attributed deaths to inaccurate and nonspecific causes that are meaningless to pathologists. In some cases, stringent rules for attributing a death to COVID-19 created obstacles for relatives of the deceased and contradicted CDC guidance.
These trends are clear in small cities and rural areas with less access to health care and fewer physicians. They’re especially pronounced in rural areas of the South and Western United States, areas that heavily voted for former President Donald Trump in the 2020 presidential election.
Lafayette Parish, Louisiana; Hinds and Rankin counties in Mississippi; and Cape Girardeau County, Missouri, are four of the 10 counties with the greatest spike in deaths not attributed to COVID-19. In those communities, official COVID-19 deaths account for just half of the increase in deaths in 2020.
If official figures are to be believed, in Lafayette Parish deaths at home from heart disease increased by 20% from 2019 to 2020. Deaths from hypertensive heart disease, or heart ailments due to high blood pressure, doubled and are on track to remain that high in 2021.
These sudden, unexplained jumps in deaths at home – from diseases with symptoms similar to COVID-19 – point to a substantial undercount of the pandemic’s toll, said Andrew Stokes, a professor in the Department of Global Health at the Boston University School of Public Health.
Lafayette Parish’s chief death investigator, Keith Talamo, acknowledged that most people who die at home are pronounced dead over the phone. He said his office lacks the resources to test every death for COVID-19. And, in a significant departure from widely accepted death investigation practices, Talamo said he typically writes down “what the families tell us” and doesn’t push further.
In and around Jackson, Mississippi, deaths from heart attacks at home doubled in 2020 and are on pace to hit a similar level in 2021. The Rankin County coroner said he wrestles with family members who first argue against citing COVID-19 on death certificates, then reverse course when they learn that the federal government pays for burials of people who die from the coronavirus.
And in Cape Girardeau County, Missouri, coroner Wavis Jordan said his office “doesn’t do COVID deaths.” Jordan does not investigate deaths himself. He requires families to provide proof of a positive COVID-19 test before including it on a death certificate.
So far in 2021, he hasn’t pronounced a single person dead from COVID-19 in the 80,000-person county.
Errors on death certificate errors aren’t limited to COVID-19. For example, the CDC puts the number of drug- and alcohol-induced deaths in Maryland 21% higher in 2020 than state figures. Nearly a third of all deaths in the U.S. from “senility” in 2020 and 2021 were registered in four counties in and around Tampa, Florida. The regional medical examiner said his office isn’t responsible.
The nation’s struggle with recording COVID-19 fatalities underscores a truism about death in the United States: Where people live and die has a lot to do with the accuracy of their death certificate. Some deaths are investigated with state-of-the-art technology and expertise. Others don’t go beyond a phone call from the family.
“Our death investigation system urgently needs both oversight and standardization of training and procedures,” Stokes said. “It’s hampered our ability to respond to the COVID-19 pandemic, and leaves us unprepared for future public health emergencies.”
The essential, yet unreliable death certificate
When people die, their death and its causes must be certified and registered according to state laws. A death certificate is the last legal document someone leaves behind, and one of the most important. But they can be as unreliable as they are essential.
In Lafayette Parish, COVID-19 was listed as the underlying cause of death in just 134 fatalities in 2020, even though there were 419 “excess deaths” – the number of deaths that exceed a normal, pre-pandemic year. The gap between these two numbers means hundreds more people likely died of COVID, researchers say.
Meanwhile, deaths attributed to diseases that are often tied to COVID-19 increased. Deaths at home from hypertensive heart disease, diabetes and Alzheimer’s all increased 30% or more in 2020. Those deaths, especially those that weren’t properly investigated, make up at least some of Lafayette’s missing COVID deaths, according to experts. Especially concerning are deaths in the community attributed to nonspecific causes, known as “garbage codes.” For example, 40 people in the parish who died at home since 2020 have been certified as dead of “heart failure, unspecified.”
“If a clinician is certifying a death this way because they truly do not know what caused the death, they should get an autopsy to find out,” said Dr. James Gill, president of the National Association of Medical Examiners and Connecticut’s chief medical examiner.
Heart failure, cardiac arrest and senility are all garbage codes. They should rarely, if ever, be cited as an underlying cause of death, said Gill, who reviewed causes of death listed on death certificates during the pandemic.
These three codes appear more frequently on death certificates in places with the largest jumps in deaths not attributed to COVID-19.
Talamo, Lafayette Parish’s chief medicolegal investigator, said he doesn’t think COVID-19 deaths are going uncounted, instead blaming suicides or drug overdoses.
But the CDC data, collected from his own office, and data he provided the Documenting COVID-19 project undercuts that. In 2020, deaths from accidents, homicides, suicides and drug overdoses exceeded the prior year by 45. Deaths attributed to natural causes jumped by 260.
Talamo, a full-time, trained death investigator, said he checks with a state registry to see if people who died had a positive COVID-19 test. If so, he includes COVID-19 on the death certificate.
But he’s the only full-time employee in the coroner’s office in Lafayette Parish, one of the largest in the state. His office handles a lot of deaths at home, and most are pronounced dead over the phone.
“We don’t have the infrastructure to go and check everybody for COVID,” Talamo said. He acknowledges that, because of a lack of testing, his office likely missed COVID-19 deaths that could’ve been identified with enough time and resources.
Ken Odinet, the Lafayette Parish coroner, said he thinks the current system of confirming COVID-19 deaths works.
Contributing: Jennifer Borresen, Janie Haseman and Javier Zarracina