Are you a health care worker? We’d love to hear from you. Email editor at northcarolinahealthnews.org
By Hannah Critchfield
How many people have died of COVID-19 in North Carolina?
Consult the Centers for Disease Control and Prevention’s National Center for Health Statistics, and you’ll get one answer. Ask the state’s health department, you’ll get a death count of almost 1,000 more people.
Why the discrepancy? The CDC data relies on each state’s reporting of a document called “death certificates.”
North Carolina is one of just three states to still use a paper-based registry system to complete these official documents, which detail the cause and circumstances surrounding a person’s death.
“We’re getting some [death certificate] data from North Carolina — it just lags by quite a bit,” said Robert Anderson, chief of the Mortality Statistics Branch at the NCHS.
There’s about a six- to eight-week delay from a person’s date of death to when North Carolina submits a death certificate to the federal government, according to Anderson.
“I wouldn’t say that they’re unusually slow for paper-based systems,” he said. ”But they’re a lot slower than those that have electronic systems.”
Which is almost everyone else.
The need for accurate death certificate data during COVID-19
Considered a more “final” determination than the everyday COVID-10 case counts monitored by each state, death certificates are the gold standard for understanding how many people have died from a given disease each year — and how to shape public health measures in response.
They’re designed to get at the sequence of events that led to a person’s passing.
They’re also used to create a broader picture of which populations are disproportionately impacted by COVID-19.
“One of the disadvantages of simple case reporting is we often don’t have good information on the demographic characteristics because that information is often missing,” said Anderson. “Whereas a death certificate is going to have that information — on race and ethnicity, age, and gender. We have a lot more detail in terms of what’s going on with the death certificate data.”
Death certificates are also used to correct inaccurate COVID-19 counts.
“The advantage of the vital records is we’re collecting data on all deaths, not just COVID deaths,” said Anderson. “So then we can look at excess deaths from other conditions, and we can get a sense of how much we might be underreporting the number of COVID deaths.”
Anderson said there are also some states that when a COVID death is reported, they add it to their case count.
“When the death certificate is filed they’ll compare the two reports and see if they match up. And we’re seeing some cases where the cause of death [on the death certificate] is actually something other than COVID-19. So they’ll use the certificate to modify their case counts accordingly,” he said.
The faster a state can process their death certificate, the more accurate their overall case count will be.
“Obviously when we can get timely information, we’ll have a better picture of the last few weeks,” said Anderson.
Prone to error
Yet past studies have shown that death certificates are often inaccurate or incomplete.
COVID-19 death certificates are typically completed by physicians, a physician’s assistant, or a nurse — but there’s often a lack of training around proper death certification.
“When I was a first-year resident in medicine, I learned how to fill out a death certificate from the second-year resident, who learned the previous year from his second-year resident,” said Dr. James Gill, chief medical examiner for the state of Connecticut and co-author of a new report on the importance of accurate COVID-19 death certificates. “So there’s not a whole lot of training.”
One common error death certifiers make involves failing to list “the underlying cause of death.”
“Clinicians often focus on an immediate cause of death — for example, they may just put down ‘cardiac arrest,’” said Gill. “But that just means the heart stopped — everyone who dies has a ‘cardiac arrest.’ It’s not telling you why they died, or what caused it.”
In the case of COVID-19, a physician may put down “pneumonia” as the primary reason for a person’s passing but fail to mention that they also had the virus.
When the certificate is completed and sent to the CDC, their death will not be included in the federal COVID-19 death count.
“I always tell clinicians to have this ‘due to’ mantra in their head,” said Gill, who now trains hospital staff on proper certification. “Cardiac arrest — well what was that due to? A heart attack. And what was the heart attack due to? It was due to coronary atherosclerosis. There you have your underlying cause of death.”
Death certifiers may also fail to complete what’s known as “Part II” of the form, which lists conditions that “contributed to death” but did not result in the underlying cause of death, such as diabetes, hypertension, or obesity.
“That’s a very important part to include because many people get infected with COVID-19, but not everyone dies from it,” said Gill. “Death certificates are really the only information health statisticians have — they don’t get medical records — so by listing these other contributing conditions, they can look for why some people die of COVID, and others don’t.”
“[Accurate] death certificates are a public health issue,” said Gill. “They just want to get a clear picture of who’s dying.”
Benefits of an electronic system
Electronic death registry systems assist with both speed and accuracy of death certificates.
Filling out a death certificate online streamlines the overall process, as health statisticians and medical examiners don’t need to code data from paper documents or wait for certificates to arrive in the mail.
“There’s an improvement in timeliness with an electronic system, but also an improvement in data quality,” said Anderson. “You don’t have to worry about the physician’s handwriting, for example, because you’re typing it directly into the system.”
Many electronic systems have built-in safeguards to ensure certifiers are filling out the information correctly and completely — including requiring that a person fill out all portions of the death certificate before it can be submitted.
“Electronic systems can have a lot of built-in quality assurance functions,” said Gill. “We sometimes see regular hospital doctors trying to certify a death that should be reported to the medical examiner — if somebody died of an overdose, for example. Now the electronic system will catch those — it looks for different keywords, and if a doctor writes ‘overdose,’ it’ll immediately stop, and say, ‘You’ve got to call the medical examiner.’”
In states like Vermont, the state medical examiner’s office reviews all death certificates through their online system to ensure they were properly completed and reported by the appropriate death certifier. In North Carolina’s neighbor Virginia, their electronic system allows out-of-state funeral directors to access and complete death certificates of individuals who died while in the Commonwealth, according to Peter Hunt, data analyst for the Vital Event Statistics Office in the Virginia Department of Health.
North Carolina’s plans
Of the 50 states, 47 of them use an electronic system to track death records for people who die in their jurisdiction.
“I don’t think that there’s anybody in this field that thinks electronic systems aren’t needed or aren’t better with regard to vital statistics,” said Anderson. “It’s just that many states haven’t had the resources to do it.”
North Carolina has plans to adopt its own electronic system.
The state legislature only approved funding for an electronic death registry in 2017, after members of the General Assembly got an earful from former state Health and Human Services Secretary Aldona Wos, who championed the update after a scathing series of articles that ran in the Charlotte Observer about long waits for death certificates and how they held up the settling of estates and wills.
“It’s like providing water for our citizens,” said former Sen. Tommy Tucker (R-Waxhaw) at the time. “The dignity of having a correct medical certificate should be required by the state.”
But getting such a system up and running takes time.
Connecticut, which began moving to an electronic registry in January of this year, is still currently on a hybrid model: one hospital and funeral directors in one area of the state are piloting the program. They’ve additionally prioritized converting COVID-19 deaths from paper death certificates statewide into the electronic system to ensure an up-to-date count.
“So at least they have them electronically available,” said Gill. “Frankly, it was a little embarrassing when the papers were coming out and talking about all the different states, and they’d mention that Connecticut didn’t have any numbers available yet. It just doesn’t look very professional, you know? But it took a while for us to get our ERS online.”
A pilot electronic death registry program began inside the state-level North Carolina Vital Records Office on August 1, according to the Department of Health and Human Services.
Come October 1, they’ll test this system at the local level in eight counties.
“We estimate full statewide implementation to be achieved by June 2021,” said Sarah Lewis Peel, DHHS spokeswoman.
This article has been updated to include information about Virginia’s electronic death registry system.