I’m a former death certificate clerk. I’ve spent nearly 7 years in the funeral home industry and processed thousands of death certificates. I’m appalled that death certificate data is codified for use as our national mortality statistics.

Aside from tracking age, gender, and place of death of the deceased, using death certificates for anything beyond closing bank accounts is a disservice to society. With the rare exception of a medical certifier who is especially conscientious and thorough in his certificate completion practices—or the special circumstances of car accidents, overdoses, and suicide and homicide deaths that lend themselves to robust investigation and reporting protocols—the average natural cause of death reporting on death certificates, and the mortality statistics extrapolated from them, are not the product of careful investigation. In fact, natural cause of death reports are known to have a 20 percent to 60 percent inaccuracy rate according to the peer-reviewed literature. They are, by definition, medical opinions, not facts—an uncomfortable truth when you observe a world enslaved by daily COVID mortality tallies.

Most of us assume mortality statistics are exempt from Mark Twain’s saw about statistics being lesser in value to lies and damn lies. But the nature of cause-of-death data capture belies the reliability of mortality statistics as structurally sound. Mortality statistics tabulated from death certificates should not steer public health recommendations or medical decisions. Using them as a metric for scientific research or public policy is about as prudent as building a skyscraper on a sandbox.

Lack of Investigation into Cause of Death

Even though causes of death provided on death certificates are treated like gavel-dropping legal facts, especially with their prima facie status in a court of law, there’s not actually much scientific investigation happening behind the scenes as to what has caused a death.As the middle-woman in the death recording process for nearly 5,000 death certificates, I know the process is not defined by careful, unbiased scientific investigation but rather a demoralizing, bureaucratic game of hot potato.

Funeral home directors want deaths registered immediately so the family they are serving won’t have their burial or cremation services delayed. Next-of-kin want certified copies of the death certificate to start settling the affairs of the deceased. Doctor’s offices, hospices, or hospitals decedent affairs staff want requests for causes of death off their desks and don’t want to deal with multiple rejections from either the mortuary or the vital records registrars if they put causes or contributory factors that don’t fit the narrow allowances under the “natural” manner of death umbrella. The coroner or medical examiner, typically understaffed and up to their ears in car accident deaths, drug overdoses, suicides and homicide death investigations, doesn’t want to take cases they don’t absolutely have to. And the local vital records registrars don’t want to approve a cause of death that will get flagged by their bosses at the state registrar office after the record has been sent for final registration, necessitating a whole mess of paperwork to fix the problem.

This bureaucratic tumbling machine results in the reporting of broad-brushstroke causes of death that are an easy “pass’” in the increasingly automated system of death recording. Any time-intensive investigation is avoided at all costs. The system isn’t built to allow for investigation. In fact, in the state where I worked, doctors are supposed to provide causes of death within 15 hours of the death occurring, and all the multi-step information gathering and verification process between the family, doctor, coroner and state registrar is supposed to be finalized within 7 days after the death.

Towards this end, I was regularly advised by the local registrar’s office to coach the doctors in submitting causes that passed the registrar’s easy filters for natural manners of death, despite the physician’s uncertainty.

The doctor doesn’t know why the person died? Just ask the doctor if the patient was on any medications. If a patient took medicine for a serious condition, such as hypertension, diabetes, or Alzheimer’s, it is easy to assign it as the cause of death.

Oh, the doctor hasn’t physically seen the patient in over six months? They can still sign the death certificate; if they refilled the script in the past six months, then they are still the “attending” physician.

A 60-year-old patient died unexpectedly at home? No autopsy needed, it’ll just be a coroner sign-out case. A “sign-out case,” at least here in Los Angeles County, means that the local coroner or medical examiner just needs to take a couple of pictures of the outside of the body to make sure there’s no evidence of physical trauma. Then, the last doctor to order a prescription refill can sign the death certificate with their best guess as to why the patient died—or, if the doctor won’t cooperate, the coroner/medical examiner will just slap a catch-all diagnosis like “atherosclerotic heart disease” on the death certificate.Causes of death for those in hospice care or in long-term care facilities will typically default to the primary diagnosis for which they were put in the nursing home or on hospice in the first place.

On and on it goes. Some of the facilities I worked with had a cause-of-death worksheet sent to me minutes after the death occurred because the worksheet had been pre-filled out and was waiting in the patient’s file weeks or months before the person actually died. Everyone involved in death recording eventually submits to the system..

For very few deceased, some investigation does occur, though that has trended down since the 1940s. Postmortem autopsy investigation has dropped from 20 percent to -50 percent as late as the 1970s to only 4 percent to 8 percent in our current protocols. 

Because of a shortage in those who specialize in this type of investigation, combined with the requirement that a medical examiner or coroner must be involved in the death recording process for any unnatural or iatrogenic factors impacting the death, you shouldn’t expect your loved one’s doctor to include any medical complications after medication or a medical intervention (such as vaccination) as a cause of death on the death certificate.

In fact, if your doctor is bold enough to concede that your loved one’s health deteriorated significantly after a medical intervention, the death certificate process would then come to a halt. That’s an unnatural cause of death, escalating the case to the medical examiner or coroner. But even then, 30 percent of doctors have reported being instructed by the coroner to put an inaccurate cause of death on purpose so the office won’t need to take the case.

If the case is accepted by the coroner, things start getting really messy for the family and the funeral home. The coroner’s office is like the DMV for death recording. The grieving family is likely to experience delays in burying the loved one. Even after the burial, the traffic jam imposed on settling affairs and having closure can last up to a year while the coroner takes the time to determine the manner and cause of death.

A thorough picture of what impacted an individual’s death is de-incentivized in a bureaucratic system, and the carefully investigated truth that ought to guide science research, public policy, and medical decision-making becomes no more reliable than pulling a lever on a slot machine.

Causes of Death are Variable Medical Opinion, not Objective Fact

The causes of death listed on a death certificate were never designed to be the immovable pillars of science, medicine, or law in the first place. As laid out by the CDC, both the physician handbook and medical examiner/coroner’s handbook state that causes of death are a medical opinion, and that these opinions can change from provider to provider.

When I worked as a death certificate clerk, I occasionally would send death certificate worksheets to multiple doctors involved in a patient’s care if we had a rush to bury or cremate. In these situations we needed to cast a wider net to find a rapidly responding doctor to finish the record before final disposition. Many times each physician would report an entirely different cause of death.

In general, if someone died in a hospital, the hospitalist would put the acute condition they treated the patient for while leaving out pre-existing chronic conditions. The primary care or hospice physician would put a chronic condition like heart disease, diabetes, or hypertension that they prescribed regular meds for, with very little information about the past few weeks or days of health decline. And a specialist would put the specific condition they were managing as the cause of death, such as stage 4 kidney disease and any disease-specific complications that, in their opinion, could explain the demise.

Occasionally there was some consensus on the causes of death between the worksheets sent back from different providers, but thoroughness of the contributory factors or the logical sequence of conditions that led to the decline was almost always lacking or inconsistent in the majority of worksheets received.

These data capture “captains,” who are in charge of supplying us with some of the most valuable data, exercise very little care or consistency in how they fill out these records. Yet their output is blindly guiding scientific assumptions, research funding, public health policy, and clinical risk estimation.

Physicians have received little- education on the importance of death certification and most are unaware that this data is simply repackaged and regurgitated back to them in the news media, scientific literature, or public health policy. In medical schools there is not much more than a couple of hours of discussion on death certificate completion, and sometimes the education is as basic as watching this 20-minute slideshow and being quizzed with a handful of questions. 

Getting Cause of Death Wrong

Peer-reviewed literature reveals the extent of the problem. An international study of COPD patients revealed that 42 percent of clinical trial patients whose death certificates were analyzed by an independent committee did not have COPD listed anywhere on their death certificate.  These were patients enrolled in a clinical trial for COPD therapy. In Norway, 17.6 percent of investigated death certificates required amendments to change the underlying cause of death.

A study out of Pakistan shows 62 percent of death certificates have errors that significantly changed the death certificate interpretation, while a Missouri study found 45.8 percent of underlying cause of death reporting inaccurate. A blinded study based on reviewing medical records vs. death certificates in Vermont showed that 60 percent needed a change in the underlying cause of death, and another Vermont study with a similar methodology found that 34 percent of hospital death certificates were wrong in the cause or manner of death.

This meta-analysis comparing clinical diagnoses against autopsy findings states: “At least a third of death certificates are likely to be incorrect and 50% of autopsies produce findings unsuspected before death.”

And how about 25% of adults dying within 30 days of being hospitalized with a Clostridium difficile infection in the UK? According to this study, if you were to die soon after being hospitalized for  a C. diff infection, there’s only  a 17 percent chance C. diff will be listed as the underlying cause of your death, and only a 31 percent chance it will be mentioned on your death certificate at all.

And did you know that even though tuberculosis is believed to be the leading infectious disease killer cited by global authorities to be taking 1.5 million lives every year, this South Africa’s study found 63 percent of decedents who were autopsied after receiving a tuberculosis diagnosis on their death certificate didn’t even test positive for TB by smear or culture. Whichever disease or situation that is killing the people falsely diagnosed with TB is not getting the research funding it deserves.

And the death certificates for infants bring this truth home about the lack of accuracy in causes of death even more:

This study found 48 percent of infant deaths in Mexico were not reported accurately compared to the patient’s medical chart. And 71 percent of those inaccurate death certificates had failed to mention an infectious, parasitic, or respiratory disease as either contributory or underlying factor.

This Ohio study of infant death certificates found 56.5 percent of death certificates were discordant with autopsy findings.

So across the board,reported causes of death are wrong 20 percent to 60 percent of the time. With the exception of a couple of cancer types, studies done on every continent have found an incompetence in death certificate data recording that is so shocking, it’s a wonder it hasn’t taken up enough headlines to actually effect change.

COVID Death Reporting

But there was a change made this past year. Not a data capture reform for all the erroneous death diagnoses, and not even a data capture reform to improve reporting for all the infections that significantly impact our health before death. The CDC’s National Vital Statistics System (NVSS) rolled out the data capture red carpet for one—and only one—disease-causing pathogen: SARS-CoV-2.

On March 24th, 2020, only 11 days after the first pandemic-related lockdown started, and well before widespread testing was available, the NVSS gave hand-holding guidance to the medical certifiers, local registrars, and mortality statistics coders on precisely how they ought to spotlight COVID-19 as the underlying cause of death on death certificates. They boldly declared that COVID should be the underlying cause on a death certificate “more often than not,” even without laboratory confirmation of infection.  When they created this COVID alert in March, and followed up by releasing this COVID death recording guidance a few days later, we couldn’t have possibly had enough country-specific statistics to justify such a drastic departure in coding COVID deaths, compared to how other infectious disease fatalities are recorded.

So the NVSS actually dictated a belief to the community of death certificate medical certifiers and vital records registrars—our cause-of-death approval gatekeepers—before having any reasonable disease surveillance infrastructure established to support their claim of probability of undiagnosed COVID being the cause of death, greatly amplifying the perception of COVID mortality. This may have been against federal law on data collection changes, as this peer-reviewed research paper suggests: “Federal agencies that make changes to how they collect, publish, and analyze data without alerting the Federal Register and OMB [Office of Management and Budget] as a result are in violation of federal law.”

Furthermore, their COVID-19 death certifying guidance changed longstanding death certification protocols when it declared: “…reporting ‘COVID–19’due to ‘chronic obstructive pulmonary disease’ in Part I would be an illogical sequence as COPD cannot cause an infection, although it may increase susceptibility to or exacerbate an infection. In this instance, COVID–19 would be reported in Part I as the UCOD [underlying cause of death] and the COPD in Part II [as the contributory factor].”

The UCOD on a death certificate is what’s reported and tallied in our national mortality statistics as the reason that the death occurred. It is found on the last line of Part 1 on a death certificate.  What needs to be provided for a death certificate is a logical sequence of conditions that explain why the death has occurred, not a logical sequence as to why an infection has occurred. So relegating an important chronic condition that logically explains why someone has died of an infection that most people survive is a drastic departure from previous cause-of-death guidance.

Previously, the pre-existing condition that made a patient susceptible to death from an infection (i.e., quadriplegia, stroke (cerebrovascular accident), HIV or cystic fibrosis) was subsequently tallied in our mortality statistics as the reason for the death. But the new COVID-19 guidance advises the exact opposite: medical certifiers are now to report the infection as the UCOD and tally it in our mortality statistics, while simultaneously demoting the underlying chronic condition (e.g., COPD) into a section of the death certificate that doesn’t impact mortality statistics and holds less sway in science, medicine, public health and law.

Reporting death in this way foregrounds short term COVID illness as the cause of death, instead of reporting the underlying chronic illness as we have done in the past. This is another way how COVID mortality is being artificially amplified over any other cause of death.

Finally, yet another biased standard of boosting COVID mortality specific to this year’s very odd death tallying was PCR testing for SARS-CoV-2 carriage performed after death, including on people whose cause of death was suicide or car accidents and obviously not COVID-related at all. Testing for pathogen carriage after accidental death would have never been performed  in the past. Similarly, any at-home deaths that used to be chalked up to “atherosclerotic heart disease” without any investigation were now presumed COVID deaths. And nursing home clusters of deaths in the elderly—which, by the way, I used to regularly witness multiple times a year in my capacity as a death recording clerk from 2013 to 2019—were now opportunities to swab the dead to contribute to the COVID death toll in 2020, even without evidence of symptoms in the deceased.

As I mentioned previously, deaths that occurred in nursing homes and under hospice care almost always were attributed to the chronic condition that explained their decline in health—regardless of what final infection they suffered from…until now. 

A Call to Action: We Can Fix This

This year has centered one pathogen as a primary cause of death, bolstered by a biased infrastructure of mortality statistics tabulation that has skewed the scientific process of data capture needed rationally to steer medicine, public policy, and public perception. Without consistent guidance from accurately reported cause-of-death information, science and medicine cannot apply their resources and recommendations wisely to save the highest number of lives.

Our rights and freedoms are being lost because public policy and perceptions are being built on a foundation of risk estimation that is so erroneous that it crumbles under even the slightest academic examination. It’s time to have better conversations and create real solutions to the data capture crisis misleading our world. This year has shown us just how horrifically misled we can be by a set of fallacious assumptions.

Families look at the death certificate information of their deceased loved ones to steer their own medical decision-making when it comes to forming their beliefs about genealogical susceptibility to disease and perceptions of risk. Scientific, medical and legislative bodies are influenced by apparent conclusions drawn from the death certificate data and affect the well-being of nations around the globe. Cause of death reporting changes the world on a micro and macro scale for better or worse; thus, accuracy matters.

To this end, I’m personally stepping out of my comfort zone, and into the world of grassroots social impact. Many others are concerned about the issue of accuracy in death certification and we are starting a nonprofit to help families, funeral homes, and medical certifiers amend death certificates to provide an accurate reporting of underlying and contributory health factors that played a role in a patient’s demise. 

Cause of death reporting of the old and sick may seem like an afterthought to most people. But the process has been hijacked and politicized over the last year in what appears to be an effort to spread hysteria and impose mass social controls on the population.