Death certificates have proven 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 principal health statistics agency in the US, and is under the umbrella of 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 primary data sources collected by NCHS for their reports. The CDC’s online database, “CDC WONDER” (Wide-ranging 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 information from death certificates, relying on county-level national mortality and population data from death certificates for U.S. residents.
It is a challenge 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 matters,” but also that obtaining “high quality” data can be challenging. Death certificates should be complete and accurate; if they are not both, the quality of data for the NCHS statistics suffers. They estimate 20-30% of death certificates “have issues with completeness,” (filled out, but not with all requested information) and that nearly 35% of all death records 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 US in January 2020, death certificates became much more important. The location and timing of the virus’ spread affected restrictions, policies, and efforts to contain it. In a September 9, 2021 New York Times article, "When Was the First U.S. Covid Death? C.D.C. Investigates 4 Early Cases," the chief of mortality statistics at NCHS/CDC, Robert Anderson, was informed in late 2020 that, according to a death certificate, someone had died of COVID-19 in January 2020. Unfortunately, there was quite the typo. The person who certified it had meant June 2020, not January 2020. Anderson immediately started checking and rechecking the process of recording the first US COVID-19 deaths.
Identifying the underlying issue was critical.
In the July 7, 2020 issue of the Journal of the American Medical Association (JAMA), Dr. James R. Gill, Chief Medical Examiner of Connecticut and a professor at the Yale School of Medicine, wrote an “Opinion” piece, "The Importance of Proper Death Certification During the COVID-19 Pandemic". Dr. Gill emphasized that, “Public health mortality data are only as good as the quality of the death certificates, but proper death certification has been a long-standing challenge in the US. The COVID-19 pandemic has highlighted shortcomings that may compromise an accurate count of COVID-19 deaths.” Dr. Gill provided an example of potential issues:
A 70-ish female nursing home resident with prior health conditions. She developed a respiratory tract infection with fever, shortness of breath, and cough, but her family did not want further testing on her and she died a few days later. Several of the residents in her facility had been diagnosed with COVID-19, but the original 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 that it was due to COVID-19 so a nasopharyngeal swab was done on the deceased woman. It tested positive for COVID-19 and a revised death certificate was issued.
In a December 2021 article, "Uncounted: 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 evaded its antiquated, decentralized system of investigating and recording deaths.”
Knowledge is power when fighting a global virus – but did it help?
The World Health Organization (WHO) published standards on certifying a COVID-19 cause of death. 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 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.” [emphasis in original]
Even after government entities published standards, there were still questions about the reliability of reported COVID-19 deaths. As the NCHC noted, certifying physicians “may be faced with heavy workloads, may not have access to complete information about the death, or may not be well trained in how to prepare good quality cause-of-death statements.” COVID-19 testing wasn’t even available is some rural areas, and in pandemic epicenters, exhausted doctors likely prioritized saving lives over paperwork.
The chief death investigator of Lafayette Parish, Louisiana, acknowledged in the USA Today article 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 the families tell us’ and doesn’t push further.”
A December 16, 2021 article in MedPage Today highlighted the pressure on physicians to either add or remove COVID-19 from a family member’s death certificate. A family may want it added in order to receive FEMA money for funeral services (~$9,000). Others have asked for COVID-19 to be removed because they didn’t believe it was a real illness, or they were in denial, thinking they should have done more to prevent the death. Some of these family requests have been granted. Strangely, it is likely that COVID-19 deaths have been both under-reported and over-reported across the US.
Here’s the good news.
The CDC and NCHS actually have multiple tools to help improve the cause of death data, especially for death from COVID-19.
- A Vital Statistics Reporting Guidance report, Guidance for Certifying Deaths Due to Coronavirus Disease 2019 (COVID–19), is quite helpful for guiding certifiers and provides answers to key questions they are likely to have, like “Is a positive COVID-19 test required to certify a death due to the virus?” (The answer is no.) While it would be ideal to have a positive COVID-19 test for every death due to the virus, we don’t live in an ideal world so, “In cases where a definite diagnosis of COVID–19 cannot be made, but it is suspected or likely (e.g., the circumstances are compelling within a reasonable degree of certainty), it is acceptable to report COVID–19 on a death certificate as ‘probable’ or ‘presumed.’”
- And since there is an app for everything, yes, there is a Death Certification Quick Guide app from the CDC – it’s free, easy to understand and provides multiple additional tips, guidelines, links and resources.
- On the on the CDC website there are links to additional guidance that include online training in coding and classification of death certificates and reports; instruction manuals that provide technical details on classification and coding specifications for death certificates; handbooks and guides that detail the operation of the registration system with item-by-item instructions for completing each item on a death certificate, as well as the rationale for collecting the information; and finally, continuing education seminars.
When we face the next pandemic, which experts are expecting, we should be better prepared. Physicians have more experience completing death certificates (over a million since the pandemic began), and the publicity around COVID-19 has made medical facilities and personnel more aware of available tools and strategies to complete death certificates more accurately. Public health agencies and officials can then use the more accurate data to guide public policy decisions, such as when and where to mandate masks or close venues; to ramp up production of critical items like hand sanitizer or hospital equipment; and to focus on preventive measures, like test kits, vaccines, and medicine.