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How COVID-19 deaths are reported, and why there's so much misinformation about the process

Thomas Gilson
CDC Cause of Death Report Example 1
CDC Cause of Death Report Example 2
Posted at 5:00 PM, May 19, 2020
and last updated 2020-05-19 17:36:12-04

CLEVELAND — As part of News 5’s coverage of the coronavirus pandemic, we regularly update the number of new cases of COVID-19 and deaths related to the disease, as reported by the Ohio Department of Health and county medical boards. While we provide context and analysis of these numbers, some who view our reporting on Facebook continue to question their veracity.

These statistics, understandably, are difficult for some to accept. As of Tuesday, coronavirus has caused the deaths of over 321,000 people around the world and over 91,000 in the United States, according to data from Johns Hopkins University To contrast, the CDC estimates from Oct. 1, 2019 to April 4, 2020, there were 24,000 to 62,000 flu-related deaths in the U.S.

View the John Hopkins Coronavirus Tracker here.

In Ohio, as of today, over 1,700 residents have died as a result of COVID-19.

The data in this chart above is updated daily. After 24 hours, it may not reflect the statistics on the date this story was published.

Despite what you may read in comments sections and on some questionably-sourced websites, health agencies are not conspiring to over-report or under-report COVID-19 deaths; their goal is to accurately report the disease’s impact on our communities.

“It's very important for people to know that this disease is causing deaths in our community,” said Dr. Heidi Gullett, Medical Director for the Cuyahoga County Board of Health. “And the deaths are real and there are grieving families. And we need to really be respectful of that, but also recognize the very serious toll that a new novel virus that our immune systems haven't seen can really wreak on different, different people.”

Dr. Thomas Gilson, Cuyahoga County’s Medical Examiner, addressed those skeptical of how COVID-19 deaths are reported on Friday at a county coronavirus briefing.

There isn't any pressure on me as a certifier, or colleagues that I talked to, at least, that there is a desire to over-report how many people have died to make the crisis look worse, or to under-report it, to mitigate whatever agenda that might favor," he said.

“We're not hiding deaths,” Gilson said. "We're not over-reporting deaths.”

CDC guidance informs local reporting

The Centers for Disease Control and the National Center for Health Statistics have given guidance on what constitutes a coronavirus death. The Cuyahoga County Medical Examiner’s Office follows that federal guidance.

“They were pushed out to all health care practitioners in the county and in the state of Ohio,” Gilson said. “They are good, reasonable and fair, and they're a good way to track the extent of the epidemic on mortality.”

There are a few reasons for the ambiguity around this reporting, Gilson said.

The first is that while some who contract COVID-19 die as a direct result of the disease, others have other conditions, and their death is considered associated with COVID-19.

“There's people who die very obviously from coronavirus,” Gilson said. “It's a respiratory infection, and if someone has pneumonia and they're COVID-19 positive, well, that's a very obvious death related to coronavirus."

“Many of the people who have passed away have underlying illnesses," Gilson said. "So, if someone had COPD (chronic obstructive pulmonary disease), for example, they already have a compromised respiratory function and many people will die from COPD. But the coronavirus certainly is not a help in any of those situations. These are associated deaths.”

The CDC guidance states: "If COVID–19 played a role in the death, this condition should be specified on the death certificate. In many cases, it is likely that it will be the UCOD [underlying cause of death], as it can lead to various life-threatening conditions, such as pneumonia and acute respiratory distress syndrome (ARDS). In these cases, COVID–19 should be reported on the lowest line used in Part I with the other conditions to which it gave rise listed on the lines above it."

The CDC provided two examples of cause of death reports when COVID-19 is an underlying cause of death. The first example is a 77-year-old male with a history of hypertension and COPD who tested positive for COVID-19:

CDC Cause of Death Report Example 1

The second example is a 34-year-old female with no significant medical history who tested positive for COVID-19 and developed acute respiratory distress syndrome:

CDC Cause of Death Report Example 2

Because not everyone who gets COVID-19 dies from the disease, Gilson said that a repeated stumbling block in the county's testing has been getting the public at large to understand the extent of the disease.

“It would be foolish, I think we would all agree, if somebody died in a car accident who had tested positive for COVID-19, and we would say that's a COVID-19 death. That's a car accident death," he said. "That's not a COVID-19 death at all. And we're not hiding the prevalence of the disease by saying, yes, they had COVID-19, but this wasn't a COVID death.”

The CDC guidance states: "When COVID-19 is reported as a cause of death on the death certificate, it is coded and counted as a death due to COVID-19. COVID-19 should not be reported on the death certificate if it did not cause or contribute to the death."

How deaths are reported in Cuyahoga County

Dr. Gullett said there are a variety of mechanisms for reporting deaths in the county.

Dr. Gullett explains how COVID-19 deaths are reported

Whenever a death is recorded, it could be reported by the facility where the person expired, it would be reported by the medical examiner, and could be reported by the Ohio Disease Reporting System — sometimes is how we find out,” she said.

A death could also be recorded by an emergency department, Gullett said.

“And with every single one of those, we actually go back and verify the lab that confirms the person was positive for COVID-19,” Gullet said. “So when I present the fatality data every Friday, and you see the daily numbers on our website, each of those that are listed under lab-confirmed are somebody who died of COVID-19 infection-related complications. So they all have lab confirmed deaths.”

There is a second group of COVID-19-related fatalities: probable deaths.

“Probable cases are individuals who have an epidemiologic link, meaning there are contacts of someone who is a lab confirmed case,” Gullett said.

To date, there has been one death in a probable case in Cuyahoga County, Gullett said.

“That was somebody who had that confirmed link to a lab confirmed case,” she said. “I suspect in the coming weeks we will see more of these as the deaths really lag behind the case identification. And in some cases, these are deaths of people who were diagnosed weeks ago.”

Gullett said that in the event that someone with a probable COVID-19 case dies and ends up at the medical examiner’s office, the county’s medical team would still collect a nasal pharyngeal swab to test. If a deceased individual ends up at the medical examiner’s office, Gilson and his team would determine if it is a possible COVID-19 case, and, if so, a swab is collected and delivered to MetroHealth for testing.

So that is a standing availability that exists,” Gullett said. “And we do that a few times a week, determined by Dr. Gilson and his team.”

The county health board has also put together a list of recommendations for when someone should be swabbed to be tested if they died either en route to the hospital or in an emergency department.

“When people are admitted to the hospital and it looks like COVID, they're pretty much being tested. So we would know from the hospital if someone expired while admitted,” she said.

Funeral homes, as well, have contacted the medical board, and Gullett said they are able to test the deceased in those facilities.

There are some interesting elements of actually taking swabs when someone has been embalmed, and Dr. Gilson has helped us understand that pretty much uncharted territory there. But most of the time, the swabs are taken before the embalming process.”

Misconceptions about testing and 5G

Gullett said there has been misinformation not just about how deaths are counted, but about the testing process of itself. She said she spoke to a group of individuals at a congregate living facility who had misconceptions about the use of a sterile cotton swab to collect a sample from the nasal cavity or the back of the throat. She said they use a sterile tube, sterile tip and sterile cotton swap that’s right out of the package in every test.

“One of the things that this group of individuals said that they heard, and we're concerned about, is that we were actually introducing the infection to people with these swabs rather than actually testing for it,” Gullett said. “And I want to be very clear that nothing can be further from the truth. We would never, ever do anything we thought could endanger anyone.”

Gullett has also heard another common myth that has circulated on social media: that somehow 5G cell phone towers are the cause of the virus.

"I just want to say that that's not true and that 5G is not causing this," Gullett said. "And this is a virus that is impacting our bodies that have never seen this. So we don't know how to make an immune response to it. And this came through vectors that transmit infection — this didn't come through 5G. And so I want to be very clear about that."

Why is there so much misinformation about COVID-19?

Gullett said the assessment that there is more misinformation being propagated during this pandemic than pandemics past is correct. She said there are a lot of reasons for this rise in misinformation, but one difference is that social media wasn’t the way it is today.

I think the way that information travels now is compared to even 10 years ago or 15 years ago is very different,” she said. “And so we see information travel like lightning speed and, you know, sometimes things that might have some kernel of truth or some plausibility expand like wildfire, because we have the ability to project our message on multiple platforms very quickly.”

Now, elected officials, celebrities and anyone with huge followings become very influential.

“So sometimes this information also can spread via trusted people who maybe don't have the right, truthful message, whether it's intended to be that way or not. Sometimes misinformation, particularly when it comes to medical and health and public health, can spread quickly,” she said.

And while public officials like Gullet and Gilson are working to spread the correct information, they also have to uphold their commitment to privacy.

Social media is a different element than we're used to dealing with pandemics, but we're committed to continuing to provide transparent information, balanced with privacy,” Gullet said. “And we're all about making sure that the community has all the information that they need. But we're never going to compromise the privacy of an individual or an organization as well. So that's a constant tension.”

Both Gullett and Gilson said that the county’s goal is to provide the most accurate possible picture of how coronavirus is impacting our community.

“But as we do know, I want to give you the best information for the public so that we're not overreacting and not under reacting,” Gilson said. “It's a serious disease. Thousands of people in our country have died of COVID-19. I don't think that's an overestimate, and I don't think that's anything that we can treat lightly."

RELATED: Why we stopped publishing Ohio’s case and death numbers immediately

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