Find out who is counting the dead — and why that matters

Before COVID-19, many people seemed to have believed that every death in the United States — indeed in the world — was accurately registered in some universally accessible system that would serve as an eternal record of who died from what and when.

Perhaps one of the silver linings of the pandemic has been that it has exposed that notion as fantasy. People in public health rely on a basic assumption: Trends in health are estimates. How many people are contracting a disease. How many people survive a disease. How many people die from a disease. These are all estimates.

And the reason they are estimates is that the underlying data — even data pulled directly from death certificates — are prone to be wrong enough that they can’t be taken by themselves as a true picture of what is actually going on with health. Even a set of pictures — X-rays, MRIs, and bacteria cultures — can be prone to error and misinterpretation.

When I first went to work for the Institute for Health Metrics and Evaluation (IHME) at the University of Washington, I was blown away by how many problems there are in underlying health data. There has been some breathless reporting this year expressing the same kind of surprise I had when I first saw the gaps and mistakes in health data. One NBC story said “Official coronavirus death tolls are only an estimate, and that is a problem.” I wanted to take that headline and insert “colon cancer,” “car crash,” and “suicide” into the same sentence. Death counts are all estimates.

The good news is that among all the problematic sources of health information, death certificates remain the most reliable source of information about fatal diseases like COVID-19. During this politicized pandemic, pundits and politicians are focusing on the problems with death counts and health information as if they were specific to COVID-19.

They’re not.

In Florida, supporters of Gov. Rick DeSantis have been trying for months to say that the state’s death data are unreliable and that they are likely capturing deaths from other causes. Critics of the governor have been saying the opposite, that the death counts are likely lower than what is really happening because some COVID-19 deaths are never reported.

Public health experts know both of these arguments well. It’s why they have spent decades working on ways to overcome such data limitations. Public health officials and organizations like IHME address the problems in death counting by looking at overall trends over large swaths of the population and over long periods of time. By doing this, you can detect patterns over time that tell you whether one part of the country — or the world — is simply overcounting or undercounting. You can also see when there appears to be a genuine spike. It’s how, for example, researchers discovered that painkiller overdose deaths in the United States were being counted as true overdoses in some places and more “unspecified accidental poisonings” in other places.

Part of understanding those trends is figuring out whether deaths are being counted generally in the same way consistently over a period of time.

Reporter Cindy Krischer Goodman works in what may be ground zero for this battle over COVID-19 death data. She’s a health reporter for the South Florida Sun-Sentinel, which covers Palm Beach County, where President Donald Trump recently voted. She showed how simply asking the question of who is counting deaths can help audiences understand whether the deaths may be overcounted or undercounted.

Who is counting?

Contrary to what many people believe, each death is not verified by a medical examiner. Most people’s bodies are not rolled out from a set of freezers in a room with cold, neon lighting like we see in crime shows, and then tested and prodded for clues. When someone dies, it can be a wide variety of people involved in determining what killed them, including: one of the physicians involved in their treatment, a different physician who read through their chart, an entirely different medical professional just trying to work through a paperwork backlog, a medical examiner, a nurse practitioner, a forensic pathologist, a coroner, even a judge in some states.

To find out who is counting in your area, try contacting your local health department or your state health department.

Each of those people might interpret the facts that they have about a death in different ways. What has their past experience told them? What are the typical practices of their peers? How might a physician who has treated the same patient for a week, knows all of their test results, and has followed closely all of their signs and symptoms code a particular death versus a judge who had a one-minute conversation with a family member after someone died at home?

Which brings us to another problem.

In some states, the way in which COVID-19 deaths are being counted has changed midway through the pandemic. Goodman wrote:

Florida in August changed its rules for determining whether someone died of COVID-19, moving that responsibility from public medical examiners to the doctors who treated the patients. The change was meant to relieve medical examiners who were swamped with COVID deaths, but it also created inconsistencies in how COVID deaths are documented and raised new questions about the accuracy and timeliness of the state’s COVID-19 death counts.

How deaths are reporting in your county or state has a ripple effect nationally, too. A subset of deaths — usually those from infectious diseases like COVID-19 — are required to be reported by medical professionals to local health departments and, in some cases, to the U.S. Centers for Disease Control and Prevention. So, in addition to a death certificate, the record of that death may end up in some regular reporting system about infectious diseases.

What you can do for your audiences is walk them through how your local health authorities are counting deaths, whether that has changed, and whether there appears to be any opportunities or motives for political influence along the way. Source after source in Goodman’s story, with the exception of the governor’s pitch men, build the case that the problems with death reporting in Florida are more likely to result in fewer deaths being counted. Not more. The opposite might be true elsewhere. She presents a convincing case, and you can do the same for your audiences.