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The number of deaths reported to the office of Connecticut’s chief medical examiner, James Gill, MD, spiked 137% in April, mostly due to COVID-19.

Now, Gill sees a handful of cases each day, but there are more nuances to his investigations, with some patients experiencing lingering COVID-19 symptoms for weeks, or even months.

Although most COVID-19 deaths are identified by frontline providers on death certificates, medical examiners investigate suspected COVID-19 cases in deaths taking place in the home or nursing homes. Their task is to determine which deaths are from versus with COVID-19 — that is, which are indeed caused by COVID-19 itself and which are caused by underlying conditions unrelated to COVID-19.

Such investigations have important implications for national policy, especially following the chaos in March and April when many hospitals could barely keep their heads above a flood of extremely sick patients, and testing capacity could not keep up. In all likelihood, some deaths were erroneously recorded as COVID-related, while others that were indeed from COVID-19 were not recorded as such.

Having an accurate picture of COVID-19’s lethality is vital as politicians determine how far to go in trying to halt the infection’s spread. Current estimates of the mortality rate vary by an order of magnitude or more, not only because the denominator (the number of infections) is unknown, but also because the numerator (actual COVID-19 deaths) is as well.

Most epidemiologists and infection disease specialists believe the official COVID-19 death toll is an undercount. But whether that’s the case, and if so, by how much, are hotly debated.

“It’s easy to make a diagnosis when the person dies in the hospital and has respiratory complications and so forth,” Gill told MedPage Today. “But some of these delayed deaths, the question is, are they dying from a complication of COVID-19 or are there underlying health problems they are dying from without any relation to COVID-19?”

And the mere presence of a positive SARS-CoV-2 test result, while necessary, is not sufficient to make a diagnosis of death from COVID-19.

Gray Zone

The National Vital Statistics System (NVSS) guidelines for death certification require providers to include COVID-19 on death certificates if the virus “played a role in the death,” but the extent of that role is not always clear.

Medical examiners must take into account nasopharyngeal swab results taken before or after death, but also clinical symptoms decedents had, like fever, cough, or chest pain.

“If a person just puts dementia on the death certificate, that is a common cause of death that wouldn’t trigger an investigation,” Gill said. “If they put respiratory complications or pneumonia due to dementia, then that may trigger me to look into it a little more to see if they had COVID testing in this case.”

When COVID-19 leads to lethal phenomena such as pneumonia or acute respiratory distress syndrome, COVID-19 will typically be listed as the underlying cause of death, per the guidelines.

But some deaths, such as those due to cardiovascular events, may be inconspicuously caused by COVID-19 infection, creating a diagnostic “gray zone,” said Benjamin Tolchin, MD, MS, of the Yale School of Medicine in New Haven, Connecticut.

In the beginning of the pandemic, when testing was limited and clinicians were less familiar with what the COVID-19 illness looked like, the distinction was less clear. COVID-19 can affect the heart, and can also exacerbate underlying conditions such as asthma or chronic obstructive pulmonary disease.

In determining whether the cause of death was related to COVID-19, “it may not always be possible to determine,” said Lauren Ferrante, MD, MHS, also of Yale, although she noted this is probably a minority of cases.

If a patient dies from a heart attack or arrhythmia, a provider can usually determine whether the patient had evidence of cardiomyopathy that was pre-existing or new in the setting of COVID-19, Ferrante explained.

But let’s say the patient died from heart disease and also had an asymptomatic SARS-CoV-2 infection. In that case, the heart disease would still be listed as the primary cause of death, although providers can note COVID-19 on the death certificate, forensic pathologist Judy Melinek, MD, wrote in an op-ed for MedPage Today.

The amount of information provided on death certificates is left to providers’ discretion, with some using them strictly to report the cause of death, and others including a range of other factors, said Jonathan L. Arden, MD, board chair of the National Association of Medical Examiners.

He said he operates under the former definition because, while the latter can be a data collection device to identify potential infections, it raises the possibility of falsely attributing deaths to COVID-19.

“The practitioners who signed the death certificate are not medical examiners in most jurisdictions and they may not understand that [distinction] or apply that consistently,” Arden told MedPage Today. “I worry about using death certificate data as a data collection source for non-death related factors, but some places are doing that.”

The accuracy of death certificates is important not only for family members of the deceased, but from a public health standpoint, Gill said.

“Whether they are positive or not, you want to make sure to do an investigation to get the proper cause of death, first as a responsibility towards family members who may have been exposed, but also for the public health benefit of testing the person that died,” Gill said. “It may help the living.”

Filling in the Gaps

In Connecticut, Gill and his team identified over 60 deaths attributable to COVID-19 while investigating decedents in funeral homes, he said.

One way to measure the pandemic’s comprehensive mortality rate is by comparing recent death totals to years past, providing an estimate of “excess” deaths. Although official death statistics are often delayed by a year or more, two recent studies used provisional mortality data to generate such an estimate for the pandemic.

From March 1 to May 30, “excess” deaths totalled just over 122,000 in the U.S., of which 78% had been officially attributed to COVID-19, according to a paper in JAMA Internal Medicine.

That left roughly 27,000 excess deaths potentially related to COVID-19.

Those might have been COVID-19 cases missed in traditional reporting, as well as deaths from delays in care for other conditions, said the study’s first author, Dan Weinberger, PhD, of the Yale School of Medicine.

Similar findings emerged from a separate study published in JAMA, with data from March 1 to April 25. In that paper, states with the highest rate of COVID-19 deaths also experienced large increases in deaths due to other diseases, like diabetes and heart disease, said lead author Steven H. Woolf, MD, MPH, of Virginia Commonwealth University.

“It’s important for cities and states getting overwhelmed by COVID-19 now to be prepared for those spikes,” Woolf told MedPage Today.

Those data covered the period when New York and New Jersey were experiencing peak mortality rates and testing was less widespread; thus, some deaths may have involved undiagnosed COVID-19.

“I would not be surprised if some of those increases in stroke and dementia deaths are probably COVID-19,” Gill said.

In the study by Weinberger’s group, which extended into May, “excess” deaths that had not been classed as COVID-related declined as time went on — as would be expected if diagnoses and certifications were getting better.

Although excess mortality rates “would represent an upper bound for the number of deaths that might have been missed,” they are also “the most complete accounting of the toll of the epidemic in the U.S.,” Weinberger told MedPage Today in an email.

In contrast, how health officials distinguish between deaths with versus from COVID-19 has been criticized by some on social media as a means of exaggerating the pandemic’s death toll. Republican leaders have also accused health officials of inflating the numbers.

Woolf pushed back against that sentiment.

“That’s clearly not the case,” he said. “In fact, it’s the other way around.”