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Saying the word “misdiagnosis” is not doctor-bashing – Heart Sisters

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Saying the word “misdiagnosis” is not doctor-bashing – Heart Sisters

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Before my cardiac symptoms forced an early retirement, my entire adult career was spent in the field of public relations, in corporate, government and non-profit sectors. Which is to say I’ve had decades of firsthand experience speaking publicly on behalf of all kinds of people. I was paid to both defend the indefensible stupidity of certain industry presidents, and also to pitch engaging human interest stories to help promote good causes.

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But it was only when I started voluntarily speaking out on behalf of other female heart patients that I encountered any real backlash – and that came from the most unlikely sources.       .          . 

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My favourite example was the anonymous cardiologist who reviewed the draft versions of my book before publication (A Woman’s Guide to Living With Heart Disease, Johns Hopkins University Press). Reviews were overwhelmingly helpful and positive – except for two chapters.

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Chapter 3 is called “Diagnosis & Misdiagnosis”. The review comment for this chapter was one line:

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“Sounds like doctor-bashing to me.”

The response to Chapter 7 was more directive:

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“Irrelevant to female heart patients – should be removed.”

Aside from the unintended irony of a cardiologist telling a female heart patient what is or is not relevant to female heart patients, the reality is that Chapter 7 was the most patient-centric chapter in the entire book, with sub-headings like Looking For Meaning in a Meaningless Diagnosis“. 

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I had to enthusiastically lobby my JHUP editor to keep Chapter 7 (essentially, against doctor’s orders)  – but happily, both original chapters remain in the book as submitted!

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But both review comments reveal what I’d been observing since 2008, which is that the differences between how I perceive living with my diagnosis and how a physician perceives that same diagnosis can often be significant. Many studies confirm this common disconnect. (See also: A Patient, a Caregiver and a Doctor Walk Into a Bar).

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It’s why doctors can dismiss a patient’s lived experience as “irrelevant”.

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It’s why even the single word “misdiagnosis” can feel like a doctor-bashing insult to some doctors.

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I don’t ever claim to speak for all women living with heart disease – any more than one physician speaking onstage at a medical conference can claim to speak for all physicians. I typically write and speak about what  becoming a patient can feel like, and about what I wish I’d learned about surviving a misdiagnosed heart attack.

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Back then, I applied and was accepted for the 2008 patient advocacy training called the WomenHeart Science & Leadership Symposium for Women With Heart Disease at Mayo Clinic in Rochester, Minnesota –  a truly life-altering experience, day after day, with the “rock stars of cardiology” speaking onstage generously sharing their immense knowledge of women’s heart disease.

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My first naïve reaction after ‘graduating’ from my Mayo training (in a surreal state of mind that cardiologist and founder of the Mayo Women’s Heart Clinic Dr. Sharonne Hayes has called “gunning for bear”) was this:

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“What can I do now to help other women avoid suffering what I went through?”

When I returned home from Rochester, I started doing free public presentations to other women on what I’d just learned at Mayo about what’s known as the cardiology gender gap. I launched this blog the following year. Johns Hopkins University Press published my book in 2017.

But I soon learned that the more I spoke or wrote about this gender gap, the more pushback I encountered – not from women, but from their physicians. When I was invited to speak onstage to my first medical conference audience, for example, one physician flat out said:

“I listen to patients all day long in my office. Why should I have to listen to patients when I go to my conferences?”

In 2014, when I wrote a blog article about Harvard researcher Dr. Catherine Kreatsoulas and her study on the differences in how men and women communicate their heart attack symptoms in the E.R., a New Jersey Emergency doc responded with a Twitter meltdown.

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In a rapid-fire Twitter avalanche of a dozen angry Tweets (must have been a slow morning in his E.R) – he attacked my “particular style of sensationalism” – as well as accusing me, in separate Tweets, of “myopic, misleading, unhelpful, inaccurate, unfair, uninformed fear mongering.”

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Each time I politely responded to each attack with links to the original Harvard research paper so he could read it himself, his Tweets blew up again. His reactions were so vicious and so personal that I wondered if he was actually aware that Twitter comments are public.

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What he really wanted, of course, was for me to shut up and go away.

That’s what most busy, overwhelmed people in traditional positions of authority want.

This response from what behavioural scientists call the “dominant group” is not surprising. For example, a dominant group holding power in a given society (e.g. physicians) can feel predictably disturbed by those who have historically had little power to dare question that dominance (e.g. patients).

I learned from that experience that attacking a lowly heart patient who’s writing about the misdiagnosis of female heart patients is apparently easier for a bully than attacking the Harvard researcher who is studying the misdiagnosis of female heart patients.

I am concerned (some might say obsessed) about the overall lack of mandatory reporting of diagnostic error in medicine. Medicine is alone among professional workplaces in that, when something goes wrong for the client, the official kneejerk response is to refuse to talk about it.

What happened to me in 2008 should NOT be happening to other women, and yet we know that this cardiology gender gap continues – despite the growing efforts of many cardiologists leading the fight to narrow this gap. The stats on women’s cardiac misdiagnoses are grim. As the U.K. cardiologist Dr. Chris Gale described in 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.”

And since women are far more likely to be the ones misdiagnosed (and worse, under-treated even when appropriately diagnosed), we need to be the ones speaking up about this important issue. See also: Same Heart Attack, Same Misdiagnosis – But One Big Difference

As I wrote in my 2018 “Skin In The Game” blog post, some physicians may feel annoyed by continuing reports of women’s higher misdiagnosis rates, but I need to continue writing and talking about them, and also supporting those physicians, researchers and heart patients who are devoted to raising awareness of such an important imbalance in women’s heart health.

Sue Robins is a Vancouver patient advocate and popular author (“Bird’s Eye View“) who knows about banging her head against a wall. Sue advocates for families of children with Down Syndrome like her teenaged son, Aaron, and writes about health care generally and her own experience as a breast cancer patient specifically.

Like me, she’s also been called names by those who would like her to shut up and go away, too: difficult, hysterical, emotional.

Sue’s recent compelling essay Telling Your Truthcaptures what can happen when patient activists start telling the truth to those who don’t want to hear the truth:

Feeling awkward and unliked is a necessary side-effect of advocacy. The more you speak out for something new, the more people will push back against you.”

Those of us aiming to reduce systemic disparities encounter not only the hierarchy of medicine, but the reality that the only people who can improve the system are basically running the system. The end-users – patients and families – are routinely lauded as “very important to us”, of course, but are in fact mostly powerless outsiders. We see this every day.

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As Sue Robins urges us:

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