Abstract
Summary: Medical error has been reliably identified as among America’s leading causes of death. Yet it never appears in “top ten causes of death” charts that periodically appear in the literature, and this author has never heard medical error mentioned during end-of-life public panels where providers address citizens interested in planning for peaceful demises. Death cause data and medical error incident reporting data seem to exist separately in public records. Accounting for medical error as among the leading causes of death would require these data sets be integrated in a way that would force error to appear in causal compilations. Including fatal medical error in “top ten causes of death” charts and disclosing it during public end-of-life informational presentations would be an act of participatory medicine on several counts: for medicine, ownership, transparency, and disclosure; which would offer citizens the opportunity to factor error into our risk/benefit calculations as we ponder what we must do to increase our likelihood of dying in peace.
Keywords: Medical error, fatal, causes of death, top ten, death, dying, end-of-life planning.
Citation: Windrum B. It’s time to account for medical error in “top ten causes of death” charts. J Participat Med. 2013 Apr 24; 5:e17.
Published: April 24, 2013.
Competing Interests: The author has declared that no competing interests exist.
Medical error has been reliably identified as one of America’s leading causes of death. The Institute of Medicine’s (IOM) landmark report, To Err is Human: Building a Safer Health Care System, concluded in 1999 that 44,000 to 98,000 annual deaths resulted from medical error. Starting in 2003, HealthGrades’ Patient Safety in American Hospitals showed that about 195,000 annual deaths result from medical error. In 2010 the U.S. Department of Health and Human Services Office of Inspector General report, Adverse Events in Hospitals: National Incidence Among Medicare Beneficiaries, found up to 180,000 deaths annually attributable to medical error.
I have been attuned to medical error issues ever since my parents’ terminal hospitalizations in 2004 and 2005 — first my mother’s, after 3 weeks of intubation in a callously-run ICU, then my father’s fifteen months later for elective pacemaker eligibility testing that devolved to a fatal hospital-acquired MRSA infection. As I learned more about medical error reporting, I came to realize that despite having been repeatedly identified as among the leading causes of death in America, the presence of fatal medical error wasn’t accounted for where it matters most: where and when medicine and people come together to explore end of life issues. Medical error has never been mentioned in any provider- or university-sponsored public end of life panel discussion I’ve witnessed, and it never appears in those “top ten causes of death” charts that pop up periodically such as the one published in the New England Journal of Medicine’s 200th anniversary issue (June 2012).
I’m less interested in the data per se than I am in its potential utility for end-of-life planning by families with a declining or terminal loved one who need to assess risk. I think that understanding the risk of fatal medical error is more likely when it’s presented in relationship to other major causes of death rather than solely as a gigantic number as in the landmark reports.
It’s past time for medical error to appear in “top ten” charts and also to acknowledge it during public end of life discussions that often are citizens’ first exposure to providers offering end-of-life guidance. I’m a layperson; neither a scientist, a doctor, nor a statistician, but as I understand things, medical error is underestimated and unacknowledged because:
- Reporting is incomplete;
- Deaths due to medical error have been and are still attributed to other causes.
How are we to know how many medical error deaths should be added independent of other categories of dying, and how many need to be included in death statistics that compound inaccurate analysis by being attributed to other causes?
We have to start somewhere.
My exposure to medical error began during Mom’s terminal hospitalization. The errors were small and mundane. Items dropped on the floor put into service; an air mattress ordered for her very low internal temperature and as a bedsore prophylactic took a day to arrive — we found it under Mom but neither plugged in nor inflated (that took another 12 hours). Although these were not fatal errors they certainly didn’t help a patient described to me as the most critically ill in the facility.
Dad’s MRSA error was fatal. However, his death wasn’t ensured by acquiring MRSA; that required a range of communication failures around a scheduled surgery to drain the wrist infection where the MRSA lodged, which required general anesthesia due to his previously weakened heart. We all agreed, feeling that this was not a heroic treatment choice. Dad had one stipulation: no intubation. The anesthesiologists refused it but failed to inquire what lay behind the stipulation (Dad’s experience of Mom’s terminal hospitalization) or to offer us any options whatsoever.
We hadn’t gotten close enough to the time of surgery to have been presented with a surgical release form (which, I’m told, would have stipulated the suspension of Dad’s Do Not Resuscitate (DNR) order). Had we encountered the release form we would have asked questions and learned about typical hospital procedures suspending DNRs during surgery and for anywhere from two to forty-eight hours post-op (depending upon the facility’s rules). We would have learned that post-op intubation is rarely required, and I would have advised Dad to go for the surgery. If post-op intubation were in his case, I would have had it stopped after whatever fixed timeframe Dad and the docs might have negotiated (a “time-based trial”). Instead, eighteen months passed before I learned of and heard the phrase — for the first time — in a conversation with medical ethicist Diann Uustal RN, who described it as a standard clinical option whereby a treatment, if necessary at all, proceeds for no longer than an agreed-upon, fixed period of time and, if unsuccessful, is by prearrangement changed or abandoned.
I felt hollow upon learning about these aspects of life support and resuscitation matters so long after Dad died; all of this ought to have been introduced to us at the time. This communication failure, another type of error, led directly to Dad’s death because a failure to disclose meant that options were needlessly foreclosed. So Dad died four days later in the hospice wing. My two consolations are that he, lucidly, made the decision himself; and that this snafu stimulated me to learn an enormous amount about resuscitation matters which has greatly informed my ability to act as a medical advocate or proxy when the need next arises.
I vowed to get to the bottom of all the failures, medicine’s and our own, and to share my findings. I wrote a book (Notes from the Waiting Room: Managing a Loved One’s (End of Life) Hospitalization) which has helped hundreds of people gain insight into advocating medically and re-visioning end of life in order to actualize our universal, yet vaguely-stated desires to die in peace. I speak when and where I’m invited, to both provider and lay audiences. In 2012 I introduced two new works: Windrum’s Never Say Die Rap™, an absurd musical statement of our quandary, and Windrum’s Matrix of Dying Terms™, a linguistic thanatological work introducing new terms that identify and name all sixteen fundamental dying situations, this to replace the sole word “dying” which fails to forecast or describe dying realities in our complex age.
Also in 2012 I took two steps regarding medical error in my presentations. I added a fourth trajectory to Joanne Lynn’s three well-known charts tracing the slope of deaths due to cancer, organ failure, and cognitive decline. I plotted a medical error trajectory based on my father’s history and sent it to Dr. Lynn to let her know that I’d expanded her work. Her email — which she’s given permission to share — was telling: “I had not yet seen someone add the error trajectory. I guess I see it as so commonplace as to be a part of most trajectories, but bringing it out as a specific item has its uses [emphasis mine].”
Figure 1. Updated Dying Trajectories
That fall I associated medical error with a top ten causes chart for the first time, in a metaphorical manner, by adding a picture of a jumbo jet atop the causes stack plus a legend explaining what it signified. You’re probably familiar with the “X number of crashed jumbo jets daily” metaphor used to dramatically convey the number of annual fatal medical errors. It’s a vivid picture made relevant because aviation is rightly held up as a safety model that medicine often fails to emulate; no segment of society would tolerate one or more jumbo jets crashing daily; and the slow-mo image of daily crashes all year long, albeit horrid, makes an absurd point absurdly well. The graphic I made is based on a screen grab of the NEJM article’s chart:
Figure 2.
Wondering how to assess the numbers and present medical error deaths scaled to a chart, the best one can credibly do is float a proportionally sized box and footnote its limitations. In this treatment I divide 180,000 medical error deaths by 2,468,435 (the total number of US deaths in 2010) to yield a 7.3% medical error death rate, then multiply the chart’s 597 per 100,000 deaths (data source CDC.gov) by 0.073, yielding 43.6 medical error deaths—ranking medical error death fourth in the refigured chart (from which I’ve removed the former number ten entry, suicide):
Figure 3.
I can’t integrate the error value into the original chart data (can anyone reading this do so?), although we know of and can further deduce some number of medical error deaths erroneously recorded as due to disease (my dad’s death certificate shows heart failure despite that nosocomial MRSA precipitated his demise). Fully incorporating error data would:
- Require that some or all of the other causes be reduced by the amount they’ve been misreported;
- Increase medical error’s proportionate share by those reductions;
- Probably raise medical error deaths from fourth to third place for the year 2010.
In trying to integrate medical error into the cause of death chart I’m combining fatal medical error incident reporting to Medicare with the Centers for Disease Control cause of death data. I’ve made some strides around end-of-life matters as a lay person, but I’m at the limit of my abilities (and frustration) when it comes to solving how to integrate and correlate these two agencies’ data sets so that anyone citing the data is forced to use the combined, correlated whole.
What would it take to account for medical error deaths while accurately reducing the number of deaths reported due to other causes? Since fatal medical error counts are widely disseminated and believed, why doesn’t this data appear in CDC data used to compile top causes of death charts, automatically causing a medical error category to appear in them? Is it because medical error falls outside the scope of “disease”? Is it because of government silos? Some other reason? If you know, please add a comment to this article.
Casting about a bit more granularly, although it’s unclear what NEJM’s interactive chart’s Accidents category includes, I suspect that medical error is not rolled in; the chart breaks accidents into motor vehicle and non-motor vehicle. Is medical error hiding in the non-motor vehicle accident category?
After writing this I discovered that in The Commonwealth Fund’s July 2005 report, “Medical Errors: Five Years After the IOM Report,” Sara Bleich inserted bars representing IOM’s low and high fatal medical error values in a 1997 top causes of death chart. This work predates mine by eight years, and I’d wager that others have done this, too. Why, then, would an academic professional journal in a 2012 anniversary issue fail to include medical error fatalities when replicating a top ten causes chart using more recent data?
I think a lot about where the tipping points lay that start families on the slippery slope ending up in non-peaceful demises. Participation that supports and leads to peaceful dying is a two-way street, requiring both more and less of providers, and a whole lot from the citizenry (a term I use because I have concluded that dying in peace is so huge a challenge in our complex milieu as to be an act of citizenship).
From medicine, peaceful dying requires more honest causal reporting. Peaceful dying requires more honest answers in public forums where attendees voluntarily come. It also requires less: less catering to the vacuum formed by patient-family denial. Even as medicine persists in error-prone ways, it also valiantly acts to try to fill that citizen void by trying to solve problems for the citizenry that we ought to be solving for ourselves. Yet even this is undermined by a medical system that, to its credit, advises us to arrive with an advocate in tow, but doesn’t really say why (too scary) or how (too complicated).
On the other hand, it’s hard to fathom, in light of growing national end-of-life reporting, the nascent end-of-life conversation, and just how many troubling deaths occur (it seems that everybody has a story), that people don’t realize that dying peacefully in a medically managed milieu is filled with practical impediments even if a family is advance planned. In this regard, participatory medicine would foment public participation by advising, even admonishing, the public to study up about end of life issues. One part of this would be to stop implying that pondering and executing a living will — important as doing so is and will remain — will secure a peaceful demise.
These are admittedly hard steps to take. The easy ones are within medicine’s grasp because they’re factual and the data is readily available: account to the dying public for medical error’s role. Report it. Disclose it. (I know good people are trying to fix it.) Doing so is even in medicine’s interest: it may help shift people away from overmedicalization, relieving providers of a huge burden to usher unsuspecting families through that labyrinth.
Underneath it all is a question rarely if ever heard in public: who owns your dying? I think the best path is for medicine to own what it must and not claim more. If need be, push ownership back where it rightly belongs: on, and to, the dying public. If medicine owns its numbers and acts on them, who knows what we citizens may do for ourselves?
Copyright: © 2013 Bart Windrum. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.
Awesome article on a topic that needs to be exposed and responsibility taken for. I am sorry that both your parents were victims of this topic
Thanks, Brenda! For the record, I would characterize the error/s and subsequent cause of death mis-recording only in Dad’s demise as the “big” ones this article refers to; the errors in Mom’s demise I’d characterize as “snafu’s,” to use that acronym—very troublesome, to be sure, but not fatal.
Cause of medical error will never be accurately reflected because of the efforts of hospitals now part of cooperations, to cover up. Hospitals will hire expensive defense firms to defend blatant gross negligence. Anything to avoid taking accountability. Most injured parties I have worked with have said they would not have litagated if the hospital would have just told them the truth and apologized. Cooperate takeover of hospitals has only worsened this as cooperations have one agenda and that is to make money. The cult of silence in healthcare is very real and enforced with intimidation towards those who dare to speak up.
First congratulations!
I can not possibly add to your segment except to say. As you have done so eloquently here,
“Better to light a candle, than scream at the darkness”
Understanding the emotional compartmentalizing it would have taken. I tip my hat sir.
Danny, thank you for the hat tip. Metaphorically, I describe keeping the memory of my parents’ demises alive to continually gnaw over what went wrong and how to, possibly, improve things is like standing on a dock in a gray world, holding the chain of an ocean liner’s rusting hulk. It’s been 8-9 years since the events that triggered my involvement in end-of-life reform, yet it’s ok; I made vows to get to the bottom of our failures and to bring forth the solutions that occurred to me if they were not already in the world. I offer what I can.
It is good to see deeper thought being brought to this subject by someone with a passion for it. My one comment would be that I wish that the subject were labeled with a term that included more of the problems besetting patients than the word “Error” does, as is discussed on the web page at this link:
http://patient-safety.com/errors-medical.html
Everybody: Joel’s work is among the most excellent and lucid I have encountered. Now that you’ve read this article go immediately to his on re-labeling medical error. Especially as someone to whom words matter and who tries to employ language to clarify our end-of-life miasma, I’m sort of shocked that it never occurred to me to explore what Joel has, the language around the problem of medical error’s existence. I was truly blown away upon reading the piece he links to here.
Bart
Continue on your path. You’re doing something that’s really important. We are all proud of you!
This article pretty well summed up for me what we as patients need to know and equally what physicians, in particular, as well as nurses need to know and begin to deal with. On a personal level I can tell you I “ordered” the two physicians involved with my mother’s care to ensure the death certificate actually reflected her cause of death…SEPTICEMIA. I asked to see the death certificate at the funeral home to see, in in fact, if the doctor did as he was “ordered” to do! He did!
Bart, you have written and presented your experience well. I only wish only we had professionals sharing these stories inside these journals and all professional journals maybe progress would be made. The best we can do at the moment is to find a blog site member forum such as the SOCIETY FOR PARTICIPATORY MEDICINE.
Elizabeth Rankin BScN [member SPM]
Elizabeth, I wish I would have known and had the presence of mind to do what you did regarding Dad’s recorded cause of death. It would have been a small defiant act of some satisfaction (that we fired two nurses during his demise was not satisfying…). And: I know I buck every shred of common expression when I say that I no longer use the term “care”; I use “treatment”. But, the topic of medicine’s claim to and ownership of “care” is another slice for dissection.
I have an article in press in the Journal of Patient Safety showing that preventable adverse events, aka medical errors, are associated with the deaths each year of about 440,000 Americans that have been hospitalized. My estimate includes errors of comission, omission, diagnosis, context, and communication as well as hospital acquired infections. It also includes a factor for errors that are masked in medical records. As soon as I get reprints, I’ll send anyone a free copy if I have their home address. I cannot distribute it electronically.
It’s important to know that most deaths are caused by a combination of factors. For example, the third man to walk on the moon, Pete Conrad, was injured in a motor cycle accident in 1999. A doctor in the ER where he was taken failed to realize that he was bleeding from internal injuries, and he died. His wife, Nancy, was a strong patient safety advocate for years afterward.
In any case, medical errors are the third leading cause of death, but most are undisclosed.
John, thank you for this. What’s your article’s title?
I sent you my address for when you have copies and am eager to read your work.
And from an entry on the Facebook Truth in Medicine group, this link to a CDC article on a study of NYC death certificate cause of death recording; interesting statistics:
http://www.cdc.gov/pcd/issues/2013/12_0288.htm
UPDATE AFTER QUERYING THE CENTERS FOR DISEASE CONTROL ABOUT FATAL MEDICAL ERROR STATISTICS
After publishing this article I read a piece by Beth Howard in AARP that cited the Centers for Disease control as a source for fatal medical error statistics she used in her article. I sent Beth an email using her blogsite’s form; I received no reply. I then sent the following query to Barbara S. Reynolds (CDC/OD/OADC) after EOL author/reporter Katy Butler suggested that I contact their press relations office:
“In the JoPM article I try to correlate cause of death data and integrate a medical error category into the NEJM’s summer 2012 “top ten causes of death” chart which cites its data as coming from CDC. My own research seems to indicate that CDC supplies disease cause of death data whereas Medicare supplies medical error incident reporting which IOM and OIG reports have extrapolated for their landmark reports on fatal medical error.
A new AARP article by Beth Howard cites CDC as a fatal medical error data source: “Five to 10 percent of patients get a preventable infection in the hospital, and nearly 100,000 people die from one each year, reports the Centers for Disease Control and Prevention. ” Is Howard’s citation accurate? If so, can you provide a link to CDC source material?
Going a step further, does CDC have US annual cause of death data that (fully) integrates fatal medical error into the several “major” causes of death?”
Below is the condensed email chain that occurred over a month’s time. The third and fourth persons in this daisy chain replied.
Barbara Reynolds, Ph.D., Director, Division of Public Affairs sent my query to Jeff Lancashire, Press Officer for the National Center for Health Statistics, who queried their Mortality Statistics branch after which I receive a reply from Sharon KD Hoskins, MPH, Senior Press Officer, CDC/Division of Public Affairs:
“Information below is from CDC Division of Healthcare Quality Promotion (DHQP):
Rather than word it as a percentage, we usually say, “Approximately 1 out of every 20 hospitalized patients will contract a healthcare-associated infection.” The stat “nearly 100,000 people die from an HAI each year” comes from old 2002 data (see: http://www.cdc.gov/HAI/pdfs/hai/infections_deaths.pdf). We’re going to be updating these numbers this year, but for now, that is the most current estimate we have for deaths. We do not have any annual death data that incorporates all medical errors in general.”
And finally, from Karen Hunter, Senior Press Officer, CDC Media Relations:
“CDC does not collect data on medical errors – that is outside our scope. You may wish to contact another HHS agency – Agency for Health Care Research and Quality (www.ahrq.org) to see what if any data along these lines they may have. With respect to your question about CDC’s mortality data – that information comes from death certificates – i.e., whatever is listed as the cause of death on the death certificate. CDC receives its death certificate (and birth certificate for that matter) data from state health departments.”
In the article “Death by Medicine” (Hull, Dean, Feldman, Rasio, & Smith, 2003), citing over 150 references, it says, “As few as 5% and no more than 20% of iatrogenic acts are ever reported. This implies that if medical errors were completely and accurately reported, we would have an annual iatrogenic death toll much higher than 783,936. In 1994, Leape said his figure of 180,000 medical mistakes resulting in death annually was equivalent to three jumbo-jet crashes every two days. Our considerably higher figure is equivalent to six jumbo jets falling out of the sky each day.” http://www.webdc.com/pdfs/deathbymedicine.pdf. That was a decade ago.
During routine surgery in 2009, a very distracted pre-op anesthesiologist induced my intraoperative respiratory arrest. The surgical resident was gaunt when he told me; the surgical site later hemorrhaged in five places; the attending surgeon said, “It wasn’t me!” There was never any record of the medical error or event entered in the chart; no discharge summary was ever written; complaints to the hospital for documentation went unanswered. The only proof I had was medical bill that listed the antidotes Narcan and flumazenil.
Five of the top 16 lobby groups, one-third, are in the health industry, including the top two: drugs and insurance. They spend $465,235,087 a year to just keep their job, not do their job. http://www.opensecrets.org/lobby/top.php?indexType=i&showYear=2013
Excellent article and fascinating, educational comments. I echo the thanks and hat tips of others.
As a practicing primary care clinician, I would like to add a comment about a facet of this I see as rarely mentioned: the need for individuals WITHIN the system to recognize that every system is perfectly designed to give the results it gives (Bataldan) and that we are obligated to speak up about all the glitches we see and insist that they be evaluated and addressed as systemic problems rather than individual failures.
We should be using our institutions’ error and incident reporting tools to report every late lab test, every lost message, every incorrect entry on a medication list, every communication failure, every scheduling error, every lab or x-ray report that makes it hard to find or understand the results, every aspect of our systems that inhibits or distracts from care.
Unless and until all clinicians own this part of the problem and speak up, the culture will continue to accept error as part of the cost of doing business. Like they say: if you see something, say something.
The problem: errors, mistakes, and accidents causing patient harm and death are simply not reported by corporate medicine and its physicians, administrators, and coders…virtually all “quality initiative/improvement systems” rely on self-reporting where lying by omission is standard…
Bart, to answer your question about why they medical error deaths are not counted, it’s because death certificates do not record medical errors as causes or contributing factors. My mother died of an anticoagulant overdose and failure to rescue in 2004 in a hospital ICU. Her death certificate is fraudulent, plain and simple. It says she suffered from high blood pressure (absolutely not true) and there is absolutly no mention at all of the three anticoagulants she was given on the day of her death from a massive brain hemmorhage. It never mentions the protamine sulfate or Vitamin K that was administered to try to reverse the effects of the anticoagulants. It never mentioned the six hour delay in ordering a CT scan and the failed, long-delayed emergency treatment to try to reverse the damage. I raised this issue at a meeting at the CDC in 2010 (Consumers Union Safe Patient Project Meeting). I asked to be included in a CDC Vital Statistics Dept. committee that was working to revise death certificates. In spite of reaching out to them repeatedly, they never contacted me about membership. I was told that membership included only those with PhDs and medical doctors. I have a letter from the then head of the CDC Dr. Thomas Frieden saying they were aware of my concerns and planned to begin discussing this and addressing the issue. Death certificates are what statisticians at the CDC use to track data and publish the leading causes of death. They simply look the other way and have not done anything (to my knowledge) to address the many issues that contribute to this. And there are many: 1. Medical Residents who have never cared for the patient or even funeral home directors are known to complete death certificates 2. Certificates do not require MDs to enter medical errors or other contributing factors (medication overdoses, sepsis, HAI’s, falls, or other iatrogenic causes). What is very disturbing is the CDC knows this and has not acted to correct this problem. Even with maternal mortality, we don’t have accurate stats. I pointed out to the CDC staff we met with that this has significant implications for research and funding because we know dollars get poured into preventing the leading causes of death. I believe that until we have vast reform at the CDC level with death certificate reform, we will never have the accurate data, research, funding, accountability and prevention of medical errors/medical harm that is required to save precious lives.
The link to Sara Bleich’s report no longer works. This new one links directly to a downloadable pdf with no paywall as of this writing:
https://pdfs.semanticscholar.org/b132/d78f82d6a8f8f724069f6fbe4bdb85181b2e.pdf