by Lori Etheridge Nerbonne
Have you ever seen a United States Standard Death Certificate? If you haven’t, you may not know they contain two sections: one for the immediate cause of death and another for any contributing factors.
Couples contemplating a pregnancy might need to review one to research family members’ medical history. An executor of a Will needs a death certificate when filing paperwork to close out an estate. Some of us may want to know the cause(s) of death to bring understanding and closure for the loss of a beloved family member. Death certificates are important legal and medical documents.
In our case, we were reviewing our mother, Dorothy Fortune Etheridge’s death certificate because she died of something completely different from what she was admitted to the hospital for. We were curious, and what we read has lead to years of complex angst and grief.
Today, October 6th, is the 17th anniversary of her death, and our long struggle to get her death certificate corrected.
Mom’s Cause of Death
Our sweet mother’s cause of death was listed as ‘intracranial hemorrhage’ (accurate) and secondary to that was listed ‘years of hypertension’ (inaccurate & completely false).
This was puzzling because we understood that ‘years of hypertension’ could be a logical and natural cause of a brain bleed or stroke for some people. But mom never had hypertension, was never treated for it, and nowhere in her years of medical records did it indicate a diagnosis of hypertension. And because the doctor certifying her death certificate had never cared for her before this hospital admission, we were perplexed as to why he would enter this.
Then came the bigger shock when we obtained and read her medical records. Right there in black and white on her medication sheet was the unraveling of what really happened: The antidote for an anticoagulant overdose (Protamine Sulfate) was administered soon after after a CT scan confirmed the hemorrhage.
We were asked by a nursing supervisor if we wanted an autopsy but had declined because we didn’t know at that time what had actually happened. We were simply told she had ‘a devastating stroke’ and had lapsed into a coma. There was never any mention of the flurry of activity that followed a long list of physician’s orders glaring at us from the page: ‘STAT Protamine Sulfate, Vitamin K, Platelets, stop aspirin, Heparin, Lovenox…’ and more. It was clear there had been a futile, long-delayed attempt to rescue her. As a result, we never got to comfort her in those final hours or say goodbye.
She had been admitted for a community acquired pneumonia and died eight days later of a brain hemorrhage. That alone should trigger an audit of a death certificate.
If we knew then what we know now, the red flags would have been raised, because we have come to learn that hospitals don’t generally offer an autopsy unless someone dies of unknown causes or injuries. The only ‘comfort’ we received from this horrible tragedy was a letter of apology from the hospital that arrived five years later. Attached to it was a long list of the changes and programs they had implemented to correct all the things that had gone wrong, in hopes that it would prevent it from happening to another patient.
How Accurate Are They?
In the U.S., death certificates are usually completed and signed or ‘certified’ by medical doctors. In some states, nurse practitioners, or physician assistants complete them. In Texas, a Justice of the Peace with no medical training can certify them. The information collected from a death certificate is electronically entered by state vital statistics staff, and then transmitted to the Center for Disease Control’s (CDC) National Center for Health Statistics (NCHS). Causes of death and their contributing factors are then tallied in databases that help guide state and national lists we often see published like the CDC’s Leading Causes of Death.
But what if a doctor enters only ‘respiratory failure’ for the cause of death for a young victim of an opioid overdose, and doesn’t mention the opioids? What if only ‘pneumonia’ is listed as the cause of death for someone who had COVID19? Or there’s our mother’s example; omission of a medical care injury, which is not unique.
Omissions and inaccuracies wouldn’t be a big issue if they were uncommon. However, studies point to disturbing projections of up to 50% of death certificates having errors. During the Pandemic, this problem gained national headlines when the CDC held special trainings for physicians to improve the accuracy of COVID19-related death reporting. To quote The LA Times article by Melody Petersen: “The CDC’s guidance in essence, reminded doctors to ask a basic question: Why did the patient die when they did? If the doctor believed COVID-19 had cut the patient’s life short, the disease should be written on the death certificate as the underlying cause of death, the rules said.”
If this important self-query ‘Why did the patient die when they did?’ is good for doctors to ask themselves for accurate reporting of COVID19 deaths, wouldn’t it be good for all deaths?
The U.S. lacks a robust system for auditing death certificates to ensure accuracy. It would seem now that we have electronic medical records and medical billing codes, this would be fairly easy to implement. The last CDC Physician Training Manual was issued in 2003. Hospitals used to be required to perform an autopsy on at least 20% of patients who died in their facilty to confirm causes of death. Since that requirement by hospital accreditation agencies was dropped in 1970, autopsy rates have plummeted.
Medical Care Injury Deaths Remain Elusive
The CDC doesn’t list medical care injuries in their leading causes of death. They are not listed anywhere in vital statistics death counts. And yet, multiple studies estimate their toll to be between 250,000 and 440,000 deaths per year, which would make them the third leading cause of death. Tragically, these deaths tend to get lumped into other causes like heart failure, cardiac arrest, respiratory failure and others. Just think of the implications this has.
How someone dies matters. It matters most to their family and loved ones. But it also has enormous implications for the health of our nation. When not documented on death certficiates and recorded as vital statistics, it misguides our public health priorities. This should matter to public health leaders, lawmakers, researchers and the medical profession. It should matter to the many organizations who receive funding to improve patient safety and reduce preventable medical harm injuries and death. It should matter to state government, municipalities and private employers who lose valuable employees and shoulder the added healthcare costs these injuries result in.
How can we optimally improve patient outcomes and patient safety if we don’t know how many actually die of medical injuries, and what those injuries are? There is a popular saying in patient safety that goes ‘You can’t improve what you don’t measure’. Deaths from medical care injuries are not being accounted for. They are an invisible national vital statistic and yet, there are billing/claims data codes for them to be counted. Does this imply they are under reported? Just imagine if we shunned deaths from COVID, car accidents, smoking or breast cancer this way. Where would we be?
In 2003, the CDC’s NCHS added a simple check box to death certificates to improve data collection for maternal deaths. This one little checkbox (asking if a woman was pregnant in the last year) has resulted in vital information that is now helping to drive public policy, funding and changes in maternal care across the U.S.; that black mothers are dying at 2.5 times the rate of white women.
Notable to adding this one little checkbox is that it took over fourteen years for all states to fully implement because there are no federal laws that govern death certificates. Instead, their final design and training requirements for who and how they are completed are dictated by 50+ different state laws, which are influenced by local politics and budgets.
Imagine if public health leaders and legislators worked together to mandate a checkbox that asked: ‘Was this death related to a medical care injury or accident?’ This would ensure they are listed as the cause of death or itemized as a contributing factor.
A death certificate’s worth is incalcuable, and it should be measured by it’s accuracy. It’s worth the potential of preventing hundreds of thousands of precious lives lost. When we don’t document and count causes of death accurately, we are making a conscious choice to turn a blind eye to a correctable and preventable public health threat. We are better than that. We have to be.
Note: Here are two important follow up references that developed from this blog:
- David Lind from Heartland Health Research Institute wrote a follow up blog post: https://hhri.net/author/david-lind/
- Panel Discussion Video: Health Tech Views and Voices: How is Cause of Death Death Data Colleted and Is It Trustworthy? sponsored by the Ethical, Legal & Social Issues Working Group of the American Medical Informatics Association https://www.youtube.com/watch?v=Tw-drt8jSys
- A U.S. Standard Death Certificate from the CDC, 2003: https://www.cdc.gov/nchs/data/dvs/death11-03final-acc.pdf
2. Rx List, Protamine Drug Description
An Inquest Into the Texas Way of Declaring Death by Terri Langford, The Texas Tribune, February 16, 2016 https://www.texastribune.org/2016/02/16/texas-death-inquests/
Death Certificate Accuracy. Why It Matters and How to Achieve It, Emily Carter, MD, Holt, & Haskins, Vol. 10 №5 P. 26
CDCs Physician Handbook on Medical Certification of Death, 2003 https://www.cdc.gov/nchs/data/misc/hb_cod.pdf
The Accuracy of Death Certificates Has Never Been More Important, Melody Petersen, LA Times, October 22, 2020 https://www.latimes.com/business/story/2020-10-22/death-certificates-covid-coronavirus-infections
Autopsy 2018, Still Necessary, Even if Occasionally Not Sufficient, American Heart Association Journals, Lee Goldman, MD, MPH, 2018:
The CDC’s National Center for Health Statistics, Leading Causes of Death, 2019: https://www.cdc.gov/nchs/fastats/leading-causes-of-death.htm
STAT News 1st Opinion, Use Systems Redesign and the Law to Prevent Medical Errors and Accidents, Michael Saks and Stephen Landsmen,
August 4, 2021: https://www.statnews.com/2021/08/04/medical-errors-accidents-ongoing-preventable-health-threat/
Journal of Patient Safety, A New Evidence Based Estimate of Harms Associated with Hospital Care, John James, PhD, September, 2013
Using ICD-9-CM Codes in Hospital Claims Data to Detect Adverse Events in Patient Safety Surveillance, A research project funded by The Agency For Healthcare Research and Quality & The CDC: https://www.ahrq.gov/downloads/pub/advances2/vol1/advances-hougland_26.pdf
The US Finally Has Better Maternal Mortality Data. Black mothers still fare the worst, NBC News Report, Elizabeth Chuck, January 2020: https://www.nbcnews.com/health/womens-health/u-s-finally-has-better-maternal-mortality-data-black-mothers-n1125896
Effectiveness of Check Boxes on Death Certificates in Identifying Pregnancy-Associated Mortality, Maryland Public Health Reports, March-April 2011, Isablelle Horon, DrPh & Diana Cheng, MD, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3056032/
Pro Publica’s Investigation, Post Mortem: Death Investigation in America, https://www.propublica.org/series/post-mortem
Frontline’s Documentary on Death Investigation in America, from PBS & Pro Publica: https://www.pbs.org/wgbh/pages/frontline/post-mortem/
How Many American Women Die From Causes Related to Pregnancy or Childbirth? No One Knows. Pro Publica, Robin Fields & Joe Sexton, October 23, 2017: https://www.propublica.org/article/how-many-american-women-die-from-causes-related-to-pregnancy-or-childbirth