As Audre Lorde once warned us:
“My silences have not protected me. Your silences will not protect you. Only one thing is more frightening than speaking your truth. And that is not speaking.”
I am exquisitely aware that when I write or speak about the subject of diagnostic error in medicine, some people will feel uncomfortable. It’s difficult to talk about being misdiagnosed in mid-heart attack and sent home from Emergency while somehow making that story sound flattering to the medical profession. . .
And when the topic is misdiagnosis – and in my specific area of concern, misdiagnosis of women’s heart disease – it’s almost impossible to report on emerging research or current stats without making physicians feel defensive. I know this because of the names that certain Emergency docs have openly called me when I quote cardiac researchers whose conclusions they can’t accept.
When I was writing my book (“A Woman’s Guide to Living With Heart Disease”, my publisher Johns Hopkins University Press arranged for an (anonymous) cardiologist to review my initial draft outline before signing our official book contract. When the cardiologist saw that Chapter 3 was called “Diagnosis and Misdiagnosis”, the immediate feedback was:
“Sounds like doctor-bashing to me.”
I could not write a book about women’s heart disease if it were missing a chapter covering the known cardiology gender gap in research, diagnostics and treatment that emerging studies have been warning us about for years. (Happily, the senior JHUP editor agreed with me, and that important chapter remains).
Let me get this straight, however: what that cardiologist seemed to be saying was that we can’t even say the word “misdiagnosis”. We can’t talk about misdiagnosis of women’s cardiovascular disease because physicians might be offended, which would mean that we can’t address how to solve this gender disparity.
If even the word “misdiagnosis” is to be reflexively interpreted as “doctor-bashing”, how can we ever address the reality that female heart patients are significantly more likely to be misdiagnosed compared to our male counterparts? That question, by the way, is also why I wrote“Saying The Word ‘Misdiagnosis’ Is Not Doctor-Bashing“.
Yet I have also learned what so many other patients before me have had to learn, too: we are often told to tread lightly.
When I was invited to speak about my own cardiac care at a fundraising campaign launch for our local heart hospital, for example, the event organizers requested that I NOT mention being misdiagnosed in mid-heart attack – and instead focus my presentation on the wonderful care I received upstairs after I finally made it past the Emergency Department gatekeepers. In other words, tread lightly. Don’t say the word “misdiagnosis” out loud when talking about our hospital.
Another example: in 2019, I was a panelist at the first public screening in Canada of the documentary called “A Typical Heart”, a short film about the “deadly disparity in research, diagnostics, treatment and outcomes between male and female heart patients”. (If you haven’t yet seen this remarkable 22-minute film, please watch this).
Our discussion panel (one of the physicians and three of the heart patients interviewed for this film) knew that there would be local clinicians in our sold-out audience for this screening. We decided to tread lightly during our presentations, and be careful not to offend these doctors. We would not criticize the medical profession. We could not be perceived as being angry. We could quote researchers, we could cite randomized control trials, but we should not sound as if we were saying what we really wanted to say about this diagnostic gender gap, which was, of course:
“THIS. MUST. STOP!”
And really, how is it even possible to talk about a “deadly disparity” in diagnostic error without feeling angry? How is not talking about misdiagnosis, or not asking the questions that must be asked, going to somehow improve rates of appropriate cardiac diagnoses in women?
After my own cardiac misdiagnosis in 2008 (“You are in the right demographic for acid reflux!”), I felt terribly embarrassed for having made a fuss over nothing. Yet my symptoms were clearly Hollywood Heart Attack-level symptoms: central chest pain, nausea, sweating and pain radiating down my left arm.
But after my diagnostic tests in Emergency were misinterpreted as “normal”, I was about to feel even worse, when an Emergency Department nurse came up to my bedside and sternly scolded me:
“You’ll have to stop asking questions of the doctor. He is a very good doctor, and he does NOT like to be questioned.”
I felt like I’d just had the air kicked right out of me. Yet the only question I’d had the temerity to ask that doctor had been this:
“But Doc, what about this pain down my left arm?”
I’m not a physician, but even I know that pain down your left arm is rarely a symptom of acid reflux. Yet I couldn’t say anything to this nurse. I had to tread lightly. I felt so humiliated, I couldn’t get out of there fast enough. And when my symptoms worsened, there was no way I was going back to that Emergency Department – until two unbearable weeks had passed and I felt utterly desperate for help. My silence did not help me back then, and in fact, it almost killed me.
Well, I now have good news. There exists out there an entire field of health care professionals whose career focus is on reducing diagnostic error in medicine.
They openly learn, speak and write about the problem of misdiagnosis, and work hard to improve how they and their colleagues can improve diagnostic accuracy. They know that without an accurate diagnosis, patients can’t get an appropriate treatment plan, and without that treatment, we will face the complications, hospital re-admission, suffering and even death that diagnostic errors can cause.
Later this week, an impressive line-up of some of these physicians, nurses, and cardiac researchers will spend an entire day talking about misdiagnosis – specifically in cardiovascular conditions like acute coronary syndrome, stroke, and pulmonary embolism.
I’ll be joining some of them in a panel discussion called “A Vision for the Future of Diagnosis of Acute Cardiovascular Events”. This panel is part of a virtual workshop hosted by the National Academies of Sciences, Engineering and Medicine called“Achieving Excellence in the Diagnosis of Acute Cardiovascular Events.” It’s open to all, it’s free, and if you’re interested in watching us from the comfort of home, you can register here.
Our specific panel begins at 4:15 p.m. EST on Friday, April 23rd. During the rest of the day, here’s what’s on the agenda:
- challenges and opportunities in diagnosis
- system improvement strategies for diagnosis
- disparities in diagnosis and strategies to promote equity
- diagnostic pathways
- novel tools for diagnosis
I know it wasn’t so long ago that inviting a patient to speak at a professional event rarely happened. I recall the words of one physician who was asked how he felt about about seeing a patient speaking onstage at a conference:
“I listen to patients all day long in my clinic. Why do I have to listen to patients at my medical conferences?”
I’m honoured and thrilled to be included on this workshop panel, and grateful to the organizers and participants who are listening. Our silence has not protected us so far. We can no longer be silent, and can no longer tread lightly.
Flower image: Sonyworld, Pixabay
Q: How have you come to terms with your own misdiagnosis experience?
NOTE FROM CAROLYN: I wrote more about cardiac misdiagnoses (see Chapter 3!) in my book, “A Woman’s Guide to Living with Heart Disease” (Johns Hopkins University Press). You can ask for it at your local library or favourite book store – please support your locally owned bookshop! – or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from Johns Hopkins University Press (and use their code HTWN to save 20% off the list price).
–Words matter when we describe our heart attack symptoms