Skin in the game: taking women’s cardiac misdiagnosis seriously

~ Carolyn Thomas

by Carolyn Thomas   ♥  @HeartSisters 

Our physicians are highly trained experts in providing medical care, but it’s their patients who have “skin in the game”.  This odd phrase is believed to have originated in financial sectors to describe senior investment advisors who demonstrate their confidence in a company by putting their own money (their own “skin”) into the company in order to build investor confidence.  If stock prices fall, they stand to lose – just like their clients will. Advisors who choose not to do this may be every bit as smart, but they have no skin in the game. 

Dave Kansas, the money-and-investment editor at The Wall Street Journal, once offered up his expanded definition of skin in the game:

“It is primarily used to convey financial risk in any kind of venture, but you could stretch it to mean emotional investment. Can you have skin in the game of your marriage? Well, you ought to.”

Emotional (and physical) investment is what patients experience once we are diagnosed with a chronic progressive illness like heart disease. Suddenly, a diagnosis we may have never even thought about becomes a pervasive focus in life. We now have the day-to-day lived experience of illness in a unique and personal way that even the medical experts who care for us likely don’t have. We know what it’s like to feel terrified of every new twinge that might mean another crisis. Is this something? Is it nothing? Should we call 911?

We now have skin in the game.

And that also helps to explain why those of us whose heart disease was originally misdiagnosed are so focused on how that could have happened, on why it happened, and on what needs to change to prevent others from being misdiagnosed in the future.

I have had an intensely personal interest in the topic of cardiac misdiagnosis ever since the spring day in 2008 when my textbook heart attack symptoms (central chest pain, nausea, profuse sweating and pain down my left arm) were misdiagnosed as acid reflux.

Yet the Emergency physician who confidently pronounced “YOU are in the right demographic for acid reflux!” was so convincing (not to mention those impressive letters M.D. after his name) that I apologized profusely before he sent me home, terribly embarrassed about having wasted his very valuable time. And when my symptoms returned (of course they did!), there was no way I was going to embarrass myself further by going back to that Emergency department. My denial was so intense that it took two weeks for that ultimate return. By then my symptoms had become unbearable, and even I knew that being unable to walk more than five steps was not a sign of indigestion. . . 

But this time, a different Emergency physician called in a cardiologist (which hadn’t been done two weeks earlier) and I heard the unforgettable words: “You have significant heart disease” for the first time.

I didn’t know this at the time, of course, but female heart patients are at greater risk of being under-diagnosed, and are also more likely to be under-treated even when appropriately diagnosed.

For example, here’s how Dr. Chris Gale, Professor of Cardiovascular Medicine at the University of Leeds, described the results of his study of nearly 600,000 heart attack patients followed over the course of nine years:(1)

“    This research clearly shows that women are at a higher risk of being misdiagnosed following a heart attack than men.”

He explained that there are two main types of heart attack: STEMI and NSTEMI.  STEMI occurs when there’s a total blockage of the main artery that carries oxygenated blood around the body. NSTEMI, which is more common, is a partial but significant blockage of one or more arteries. Both can result in serious damage to the heart muscle.  See also: “I Take Issue With the Heart Attack Terms STEMI and NSTEMI”

This research found that women who had a final diagnosis of STEMI had a 59 per cent greater chance of a misdiagnosis compared with men. Women who had a final diagnosis of NSTEMI had a 41 per cent greater chance of a misdiagnosis compared with men.

Being appropriately diagnosed is critically important because without a correct diagnosis, there is no correct treatment plan. And Dr. Gale added that women who were misdiagnosed had about a 70 per cent increased risk of death after 30 days compared with those who had received a consistent and correct diagnosis.

Study after emerging study continue to reach similar disturbing conclusions.

The 12 women who wrote Focused Cardiovascular Care for Women(2) published in the journal Mayo Clinic Proceedings, warned their physician colleagues that recognizing women who are in fact at significant risk of heart disease can avoid reflexively blaming women’s symptoms on non-cardiac causes, adding:

“The public health cost of misdiagnosed or undiagnosed cardiac disease in women is significant.”

How can this still be happening?

And more importantly, why do those who are most able to address this problem often seem to be the most reluctant to champion change? 

Emerging research confirming a cardiology gender gap is inevitably initially greeted on social media with disdain, or complaints that the study’s methodology was weak, or that (my personal favourite) “further study is required”.

Three examples:

1. When the Institute of Medicine (now called the National Academy of Medicine) issued its landmark 2015 report, Improving Diagnosis in Healthcare, its grim conclusion was: “Urgent change is warranted to address this challenge.” But mandatory reporting of diagnostic errors was not among the eight key report recommendations. Why not? The excuse I heard, voiced by the committee chair at least twice in response to media questions during the launch event, was this:

“Now is not the right time for mandatory reporting of diagnostic errors.”

Not the right time?

NOT THE RIGHT TIME?!

If now is “not the right time”, when might that right time be?

Or, as the award-winning ProPublica journalist Marshall Allen warned his audience at Stanford University’s Medicine X conference that same week:

“Until you start measuring something, you can’t improve it.”

A follow-up to this topic: When I was recently invited to submit an opinion piece to the cardiology journal Circulation (my essay instructions: “should be provocative and stimulate discussion”), I decided to write about the need for mandatory reporting of diagnostic error.

I received two physician reviews of my essay. The first was very positive:

But the second physician/reviewer rejected my essay, calling it “too provocative” and accusing me of leaving out all the “good things” that have been happening to address the problem of diagnostic error (without specifically hinting at what any of those “good things” might be). In spite of the positive response of the first reviewer, Circulation editors rejected my essay, adding that, even if I edited my piece to incorporate all reviewer recommendations, they would NOT consider publishing it.

2. Another example of the systemic dread of the word “misdiagnosis” (smaller in scope but far more personal to me): When I was in negotiations with Johns Hopkins University Press to publish my book (A Woman’s Guide to Living with Heart Disease), one of the requirements before signing the book contract was that a cardiologist had to review my draft table of contents and the sample chapter I was asked to submit.  The (anonymous) cardiologist who completed this review for me strongly endorsed the project (“This book will be an important addition to the literature…”) – except for one chapter. The 4-5 bullet points in the draft table of contents under Chapter 3 (which was all about diagnosis and misdiagnosis of women’s heart disease) were simply assessed like this:

“Sounds like doctor-bashing to me.”

Chapter 3 became a deal breaker for me. As I told the JHUP Executive Editor at the time, it would be a profound disservice to the women reading a book about women’s heart disease if I failed to include the growing weight of evidence suggesting that women are more likely to have their cardiac event misdiagnosed compared to our male counterparts. “I’m not making this stuff up!” was my final stand. (Happily, Chapter 3 remains as it was submitted).

But it seems that even the use of the word “misdiagnosis” can elicit a knee jerk defense. How on earth can we improve it if some in the medical profession feel uncomfortable even acknowledging that it exists, or that it’s a significant problem for women that must be taken seriously?

3. Just this past week, an Emergency physician in New Jersey tore several strips off me on Twitter because he objected to what he called my “particular style of sensationalism” – as well as accusing  me of myopic, misleading, unhelpful, inaccurate, unfair, uninformed fear mongering. He was reacting to a 2014 blog post in which I quoted Harvard researcher Dr. Catherine Kreatsoulas, who studies why female heart patients are significantly more likely to be misdiagnosed in mid-heart attack than our male counterparts are.

The post is called “Words Matter When We Describe Our Heart Attack Symptoms“. He seemed to particularly hate the statement that Dr. K. had made about Emergency docs writing “No CP” on women’s charts when patients don’t actually say the words “chest pain”. For some reason, this quote sparked a meltdown that was so unprofessional, it made me wonder if he realized that Twitter is public…

How can female heart patients talk about misdiagnosis if that word alone cannot dare to be mentioned without us worrying about offending doctors who simply do not want to hear it?

They may not want to hear, but I need to continue supporting those physicians, researchers and heart patients who are devoted to addressing this important issue in women’s heart health.

I need to, because I have skin in this game.

♥

1. Wu, J., Gale, C. P., Hall, M., Dondo, T. B., Metcalfe, E., Oliver, G.,West, R. M. (2018). “Impact of initial hospital diagnosis on mortality for acute myocardial infarction: A national cohort study.” European Heart Journal: Acute Cardiovascular Care, 7(2), 139–148.
2. Mariana Garcia, Virginia M. Miller, Martha Gulati, Sharonne N. Hayes, JoAnn E. Manson, Nanette K. Wenger, C. Noel Bairey Merz, Rekha Mankad, Amy W. Pollak, Jennifer Mieres, Juliana Kling, Sharon L. Mulvagh. “Focused Cardiovascular Care for Women.”  Mayo Clinic Proceedings, February 2016. Volume 91, Issue 2, 226 – 240.

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NOTE FROM CAROLYN:   I wrote much more about misdiagnosis in women’s heart disease in Chapter 3 of my book, “A Woman’s Guide to Living with Heart Disease” . You can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher, Johns Hopkins University Press (use the JHUP code HTWN to save 30% off the list price).

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♥

Q: How have you developed “skin in the game” for your own diagnosis?

See also:

Why doctors must stop saying: “We are all patients” (my guest post in the British Medical Journal (BMJ)

Must women bring a man along to help doctors believe us?

This is NOT what a woman’s heart attack looks like

“It’s not your heart. It’s just _____” (insert misdiagnosis)

Misdiagnosis: is it what doctors think, or HOW they think?

Seven ways to misdiagnose a heart attack

Misdiagnosis: the perils of “unwarranted certainty”

Cardiac gender bias: we need less TALK and more WALK

Unconscious bias: why women don’t get the same care men do

When you fear being labelled a “difficult” patient

The sad reality of women’s heart disease hits home

How can we get heart patients past the E.R. gatekeepers?

Published by Carolyn Thomas

23 thoughts on “Skin in the game: taking women’s cardiac misdiagnosis seriously”

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  2. I just had an angiogram that showed that my arteries are clear. I would be happy about that if I hadn’t been experiencing all the symptoms and been on all the medications for CAD for the last three months.

    While the medications have lessened the frequency and severity they have not stopped me having to take daily nitroglycerin when attempting a short walk or being breathless and sweating from six steps or making a bed.

    As I lay watching my cardiologist explain to my husband that he really couldn’t say what could be the issue. Maybe anxiety or stomach issues or maybe just maybe Microvascular disease but that was unlikely, I caught a look that said it all.

    I am beyond disappointed with this and disillusioned by the fact that I am obviously going to have to do my own research and fight for my life I am certain my symptoms are not heartburn or anxiety and I can’t stand the idea that I have to prove that I am not malingering.

    But I will. Before I have a heart attack. I’m usually very positive and proactive and tomorrow I will be again but I’m tired. Thank you for letting me talk it out. Any recommendations for a specialist in Microvascular disease in the Seattle Tacoma area.

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  3. I will really appreciate Anyone with personal experience direction. Am currently 42.

    I am in the US these days. I first presented with what I am sure is cardiac pain while in Dubai at around 38-39 years of age – squeezing heart as if struggling to pump, pain radiating to neck, jaw, arm – I straight away got an ECG and enzymes test there. As it was okay I did ignore it.

    Had some incidents here and there with same symptoms…I put up and usually in 3 days I was okay…

    About 1 year ago I started getting short of breath all the time and although i was working extremely long hours – I was never fatigued in the past – I started feeling extremely tired – mornings more difficult. One day the full set of symptoms presented again exactly the same – feeling stupid as by this time I had already gone into ER in Dubai twice and blood and ECG were fine… this time they went away in 2-3days however unlike the past it came back in a few days. This time I was very short of breath and dizzy too, apart from jaw, arm, shoulder, back pain and squeezing heart. The ER here in the US did do an ECG and enzymes. Again all fine.

    Since then I followed up extensively with a cardiologist in Dubai (as it was just very expensive here in the US) My treadmill test was not too bad, had cardiac CT Scan which showed no blockages.

    I really need direction on what else to do – had an episode yet again and even the docs have ruled out acidity, anxiety, I have been asked to do an echo now.

    I just know it’s my heart… not sure what it is…

    Those symptoms have started usually in evenings but could happen anytime – rest or activity.

    I can’t afford to keep doing every test out there – I have worked with 2 cardiologists in Dubai and both said likely the harmless Microvascular disease…

    Is MVD truly harmless – not what the internet says…

    So with no blockages does anyone know what I could be having so I direct or insist for specific tests….

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    1. Hello Audrey – I’m not a physician so of course cannot comment on your specific symptoms. I can tell you generally that it seems your distressing concerns have been taken seriously, with many cardiac tests done (and more recommended) as docs try to solve this mystery for you. Your echocardiogram might contain some clues.

      Right now, you just don’t know the specific reason for any of your symptoms, or even if they are heart-related at all, which is a very stressful place to be. It might be reassuring to keep in mind that 85% of those admitted to hospital for what appeared to be cardiac symptoms end up not having cardiac issues at all. Yet something is causing your symptoms – you and your docs have just not yet figured out what the ‘something’ is. Read more about MVD here (this link has a list of appropriate diagnostic tests, as many standard cardiac tests don’t pick up MVD). Good luck to you in solving the mystery…

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  6. From the Huffington Post – an article titled “Many Women Don’t Recognize Their Heart Attack Symptoms. Many Doctors Don’t Either.”

    I saw Dr. Goldberg (quoted in the article) in 2015 after experiencing severe chest pain that left me doubled over. The first (male) cardiologist I saw diagnosed me with anxiety in 5 minutes. I’d had panic attacks and never had chest pain anywhere close to this.

    I went to see Dr. Goldberg and after pertinent questions about my history, i.e. migraines, Raynaud’s, she diagnosed me with Prinzmetal’s Angina and put me on the appropriate medication. I called my PCP – the first cardiologist was in the same medical group, I told her I had gotten a second opinion and what the diagnosis was. She was strangely silent; I don’t know if she was pissed I’d seen another cardiologist, what she thought of the diagnosis or what she thought of either cardiologist.

    It’s been difficult for me to continue to see Dr. Goldberg since I changed jobs and am working farther away from Manhattan (NYC traffic – whatever you’ve heard is true!), but she told me I’m welcome back at any time. She is clearly a champion for women’s heart health.

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    1. Hi Andrea – that first cardiologist you saw must have had magical powers (able to diagnose a patient doubled up with chest pain as merely “anxious” – and in just 5 minutes!) Must have gone to the same medical school my first ER doc went to – just by looking at me, he could conclude: “You are in the right demographic for acid reflux!”

      That is so awesome that you got to see Dr. Goldberg. I’ve been quoting her for years (especially her 2003 book on women’s heart disease, “Women Are Not Small Men: Life-Saving Strategies for Preventing and Healing Heart Disease in Women “) – she is indeed a famous champion for women’s heart health.

      Hellish NYC traffic or not, make your way back to her when you need to!!

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  7. In addition to healing from my medical malpractice on a mental, physical, emotional, and spiritual level, I continue to read and study voraciously. We women must continue to speak up and advocate for ourselves.

    I love your book. Every doctor should read it.

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    1. Excellent point, Roslyn! I now tell women that their only job is to become the world expert on their particular diagnosis. Knowledge is power!

      So glad that you are enjoying my book – much appreciated!

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  8. “Sounds like doctor bashing” is a very telling phrase… Meanwhile we patients are “bashing our heads against a brick wall” or so it seems.

    Heartfelt thanks for your excellent work in giving us a voice! Have a joyful Christmas and all the best for 2019. 🎄💖

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  9. Right on! Doctors treat us like bunnies in a cage, pulling us out by our floppy ears to inject us, test us, treat us without explaining why or what’s going on because they cannot.

    Following a stroke in March, I’ve been seeing a cardiologist who insists that something is wrong with my heart. But she can’t find anything. Now I have a Link monitor inserted; she says she’s waiting for it to show A-fib, but it’s not. Her other tests showed NOTHING. She barely even listens to my heart when I show up and I have to see her every three months.

    Some health things, I believe, are not explainable. I’ve had three things happen to me that doctors cannot explain. I’m willing to let it go (God’s will, I’m guessing), but this doctor . . . and it drives me crazy.

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    1. Hi Linda – your story is so intriguing because it represents the other extreme we worry about. There’s been a lot of controversy among the medical profession about over- and under-diagnosis lately. One doctor has famously declared “Nobody has ever died from over-diagnosis” – which is unfortunately quite untrue. You didn’t mention if you have any symptoms to explain why your cardiologist is intent on running more tests. Overdiagnosis (doing more tests more often, perhaps born of legal protection concerns) has launched a ‘less is more” movement in response to it. Canadian physician Dr. Jessica Otte is very active in this movement and may be of interest to you!

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  10. So well written! Thank you for continuing to champion women in this quest to raise awareness of the seriousness of misdiagnosis of heart symptoms in our gender. Thank you for taking the “hit on the chin” by the ignorant and proudful professionals who are close-minded to factual statistics about the issue, and yet not relenting in your outspoken crusade to probe for answers and change to save women’s lives.

    You are our hero. We all have skin in the game, but you have a platform that most of us do not to contest for women’s heart issues on a public stage.

    Thank you for not giving up. Please know that there are more women for you than those who speak against you. We are here to cheer you on! Our fearless advocate! Bravo! You rock!

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    1. Thank you so much for sharing your perspective, Kelly, and for the little pep talk. I don’t feel fearless – I’m quite worried much of the time about the state of women’s heart disease care, and I often do feel like giving up, frankly – especially when it seems I’ve been writing the same articles over and over for the past nine years. These are the ones that basically conclude, as my friend Laura Haywood Cory likes to say: “Sucks to be female. Better luck next life!’

      We live in hope…

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  11. Unbelievable that his kind of ignorance, arrogance, prejudice continues in the medical profession, Carolyn.

    Surely, we should be past all this by now. What, in your opinion, will it take to make doctors smarten up? Or is the problem simply intractable?

    I sometimes think that part of it’s due to lingering paternalism in medical attitudes towards all patients,and/or even more damning, patriarchal attitudes towards women in particular, although to do so in either case is very damning.

    Am so glad you continue to draw attention to this problem, although it must hurt to be on the receiving end of such comments – keep it coming!

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    1. Thanks for your kind words, Judy. In answer to your questions, I have to tell you that sometimes I feel quite discouraged about doctors. I suspect that’s because of the horror stories my blog readers send me almost daily about being dismissed/insulted/ignored/humiliated/misdiagnosed by their physicians. I think many physicians are also working under very difficult circumstances, burned out, exhausted, and absolutely unable to hear what they see as inappropriate criticism from uppity patients.

      But on other days, when I see the amazing cardiologists I know who are tirelessly leading the way in research, treatment advances, diagnostics and educating their colleagues about women’s heart disease, I feel decidedly hopeful.

      My own physicians (GP, cardiologist, pain specialist) are terrific human beings who make me feel lucky to know them). And I spoke to 450 obstetricians/gynecologists at a big national conference in the summer, where I was moved to tears by meeting healthcare professionals who are working so enthusiastically to raise awareness of the link between pregnancy complications and heart disease. That kind of reality IS hopeful!

      Realistically, I believe we may have to wait until current med school students have graduated and are out in the trenches themselves before a pervasive shift in the medical patriarchy happens. Case in point: I simply couldn’t believe that an experienced physician like the Emergency doc whose Tweets were so deliberately contemptuous and hurtful (aimed at a female PATIENT, not at the author of a research study that he was angry about) is actually the man responsible for treating women who show up in his own ER for help in mid-heart attack. Heaven help them all…

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    1. Thanks so much for that interesting link, Andrea.

      I once had a bizarre exchange with our BC Ambulance Service about their official manuals, in which heart attack treatment protocols are listed under Chest Pain. “What about women in mid-heart attack who call 911 but have no chest pain?” I asked them. Their response was, well, our paramedics are already trained to KNOW that women sometimes have no chest pain, so the manual doesn’t have to include every single exception.

      So why, I asked in return, do you have a manual in the first place if it doesn’t reflect reality?

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      1. Thank you Carolyn. I didn’t have any red flag warning; the only one I ever had before was a sharp piercing pain in my upper left back and the fact that heart disease runs rampant in my family.

        That’s the only thing that led me to the testing, along with my pushing for help.

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        1. Hi Prunie – lucky for you that you kept pushing! I like to remind women that “you know your body! You know when something is just not right!” and not to let anybody talk them out of it, or be too embarrassed to keep “pushing” as you did…

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