Covid-19 losses call into question the reliability of death certificates
Death certificates have been found to be notoriously inaccurate for a variety of reasons, usually because they are incomplete and/or the certifier doesn’t really know the patient’s medical history. (See our previous article, “Death certificate only? Not the death of your case“.) Even so, national and state agencies still use death certificates for mortality statistics.
US mortality data is rooted in death certificates.
The National Center for Health Statistics (NCHS) is the main agency for health statistics in the United States and reports to the Centers for Disease Control and Prevention (CDC). The NCHS compiles statistical information to help guide public health and health policy decisions, and provides data to identify and address health issues, indicators and trends. Death certificates are one of the main sources of data collected by the NCHS for their reports. The CDC’s online database, “WONDER CDC(Wide-range Online Data for Epidemiologic Research), provides access to a variety of health information to public health professionals and the general public. This database is also based on death certificate information, drawing on national mortality and county-level population data from the death certificates of US residents.
It is difficult to obtain high quality data in the normal course.
In Understanding Death Data Quality: Cause of Death from Death Certificates, the NCHS notes that “getting it right is important”, but also that obtaining “high quality” data can be difficult. Death certificates must be completed and exact; if they are not both, the quality of data for NCHS statistics suffers. They estimate 20 to 30% of death certificates “have completeness problems”, (completed, but not with all the requested information) and that almost 35% of all death certificates in 2018 had an unsuitable UCOD (underlying cause of death) listed.
Throw a global pandemic into the mix…
When COVID-19 was first identified in the United States in January 2020, death certificates became much more important. Where and when the virus spread has affected restrictions, policies and efforts to contain it. In a September 9, 2021 New York Times article, “When was the first Covid death in the US? CDC is investigating 4 early cases”, NCHS/CDC Chief of Mortality Statistics Robert Anderson was told in late 2020 that, according to a death certificate , someone had died of COVID-19 in January 2020. Unfortunately, there was quite a bit of typo. The person who certified it meant June 2020, not January 2020. Anderson immediately began checking and rechecking the process for recording the first COVID-19 deaths in the United States.
Identifying the underlying problem was essential.
In the July 7, 2020 issue of Journal of the American Medical Association (JAMA), Dr. James R. Gill, Connecticut’s Chief Medical Examiner and Yale School of Medicine Professor, wrote an “Opinion” article, “The Importance of a Proper Death Certificate During the COVID-19 PandemicDr. Gill pointed out that “public health data on mortality is only as good as the quality of death certificates, but proper death certification has been a long-standing challenge in the United States. The COVID-19 pandemic has exposed gaps that could compromise an accurate count of COVID-19 deaths. Dr. Gill gave an example of potential problems:
A 70-year-old nursing home resident with previous health issues. She developed a respiratory tract infection with fever, shortness of breath and cough, but her family did not want any further tests on her and she died a few days later. Several of the residents at his facility had been diagnosed with COVID-19, but the underlying cause of death on the death certificate was “acute respiratory failure.” When her death was reported to the medical examiner’s office, it was suspected to be due to COVID-19, so a nasopharyngeal swab was taken from the deceased woman. He tested positive for COVID-19 and a revised death certificate was issued.
In a December 2021 article, “Not counted: Inaccurate death certificates across the country hide the true toll of COVID-19“, a USA Today Network investigation noted that “after overwhelming the nation’s health care system, the coronavirus escaped its antiquated, decentralized system of investigation and death registration.”
Knowledge is power in the fight against a global virus – but has it helped?
The World Health Organization (WHO) has published standards for certification of a cause of death related to COVID-19. In addition to the WHO, the NCHC urged certifiers to only list the virus as a cause or contributor to death when it actually was. “When COVID-19 is reported as the cause of death on the death certificate, it is coded and counted as a COVID-19 death. COVID-19 should not be reported on the death certificate if it did not cause or contribute to the death.” [emphasis in original]
Even after government entities released standards, there were still questions about the reliability of reported COVID-19 deaths. As the NCHC noted, certifying physicians “may face heavy workloads, lack access to complete death information, or may not be well trained in preparing good cause of death statements. quality”. COVID-19 tests weren’t even available in some rural areas, and in the epicentres of the pandemic, exhausted doctors likely prioritized saving lives over paperwork.
The chief death investigator for Lafayette Parish, Louisiana, acknowledged in the Article from USA Today above that, “most people who die at home are pronounced dead over the phone…his office lacks the resources to test every death for COVID-19…he typically writes down” what families tell us “and push no further.”
December 16, 2021 article in MedPage today highlighted the pressure on doctors to add or remove COVID-19 from a family member’s death certificate. A family may want to add it in order to receive FEMA money for funeral services (~$9,000). Others asked for COVID-19 to be removed because they didn’t believe it was a real disease, or they were in denial, thinking they should have done more to prevent the death. . Some of these family requests have been accepted. Strangely, it is likely that deaths from COVID-19 have been both underreported and overreported in the United States.
Here is the good news.
The CDC and NCHS actually have several tools to help improve cause-of-death data, especially for COVID-19 deaths.
A policy report on vital statistics reporting, Guidance for certification of deaths from coronavirus disease 2019 (COVID-19), is very useful in guiding certifiers and provides answers to key questions they are likely to have, such as “Is a positive COVID-19 test necessary to certify a death from the virus?” (The answer is no.) While it would be ideal to have a positive COVID-19 test for every death from the virus, we don’t live in an ideal world, so, “In cases where a definitive diagnosis of COVID -19 cannot be made, but is suspected or probable (for example, the circumstances are compelling to a reasonable degree of certainty), it is acceptable to declare COVID-19 on a death certificate as “probable” or “presumed “.
And since there’s an app for everything, yes there is. Application Death Certificate Quick Guide from the CDC – it’s free, easy to understand, and provides plenty of additional tips, guidelines, links, and resources.
On the CDC website, there are links to additional tips which include online training on coding and classification of death certificates and reports; instruction manuals providing technical details on death certificate classification and coding specifications; manuals and guides that detail how the registration system works with step-by-step instructions for completing each element of a death certificate, as well as the rationale for collecting the information; and finally, continuing education seminars.
The next step ?
When we face the next pandemic, which the experts are waiting, we should be better prepared. Physicians have more experience filling out death certificates (over 1 million since the start of the pandemic), and publicity around COVID-19 has made medical facilities and staff aware of the tools and strategies available to fill out death certificates more accurately. Agencies and public health officials can then use the more precise data to guide public policy decisions, such as when and where to mandate masks or close places; to speed up the production of critical items like hand sanitizer or hospital equipment; and to focus on preventive measures, such as test kits, vaccines and drugs.
Copyright © 2022 Womble Bond Dickinson (US) LLP All rights reserved.National Law Review, Volume XII, Number 158