You might not expect that a person (like me, for example) who has been a longtime advocate for women with heart disease would take any issue at all with the sub-title of this Patients As Advocates document. But ever since I first saw it, something’s been niggling at me. .
I can say without reservation that since 2008, when I was misdiagnosed in mid-heart attack, I’ve tried to be “part of the solution to the misdiagnosis of heart disease in women” – like this document sub-title instructs heart patients to do. By the time I was finally appropriately diagnosed and treated, I knew something was very wrong with a healthcare system that sends female heart patients home from the Emergency Department – even with textbook cardiac symptoms like mine – and I also knew that I wanted to do what I could to make it stop.
Some examples over those 13 years for those who don’t already know me and love me:
♥ -My book A Woman’s Guide to Living with Heart Disease was published by Johns Hopkins University Press.
♥ -I have spoken to thousands of women in their living rooms, luncheon meetings and community centres at my free Heart-Smart Women public presentations (dubbed by one reviewer as “part cardiology bootcamp and part stand-up comedy”) and to countless physicians at their medical conferences.
For the past 13 years, I’ve worked tirelessly to be “part of the solution’. But now, I’m just tired.
Yet the gender gap in cardiology is still alive and well, as reported recently in a compelling commentary published last week in the American Journal of Preventive Cardiology (AJPC), called Addressing the Bias in Cardiovascular Care: Missed & Delayed Diagnosis of Cardiovascular Disease in Women.(1)
Three shocking background facts leaped out at me from this AJPC publication (besides the most discouragingly obvious one – that I’m essentially reading the same conclusions in hot-off-the-press publications that I was reading 13 years ago). For example:
“Only 22% of primary care physicians and 42% of cardiologists felt adequately prepared to assess cardiovascular disease risk in women.
“In women with cardiovascular disease, there are continued sex disparities in their diagnosis, treatment and management, resulting in worse outcomes for women compared to their male counterparts. As a result, we continue to see higher mortality rates and re-hospitalizations in women than in men.”
“And despite almost two decades of national efforts to increase women’s awareness of heart disease as their leading cause of death, awareness has actually DECREASED from 65% in 2009 to 44% in 2019 among all women across race/ethnicities.”
Both the AJPC commentary and the Patients As Advocates document are based on reports from the same event, co-hosted in January 2021 by two respected organizations: WomenHeart: The National Coalition of Women with Heart Disease and the Society to Improve Diagnosis in Medicine (SIDM).
Both groups collaborated on this patient resource document called Patients As Advocates: Being Part of the Solution to the Misdiagnosis of Heart Disease in Women. In it, female heart patients are not only urged to boost their own chances of a correct diagnosis by improving how they communicate with clinicians, but also to step up and become a bigger part of the solution to a much bigger problem.
The document includes three key issues in medicine that are known to contribute to the significantly higher risk of diagnostic error in female heart patients compared to our male counterparts:
1. Symptoms of heart disease and heart attack can be different in women than men. Both women and their doctors may not recognize the risk to their health.
2. Time pressure in the clinic can lead to the omission of relevant information in a patient’s history, an incomplete physical exam, or a breakdown in trust between the patient and clinician.
3. Implicit or explicit bias based on a patient’s age, sex, gender, race, ethnicity or appearance, or beliefs about women’s stress or anxiety, that may discount heart disease as a possible diagnosis.
Here’s what I see when I read this list of factors that contribute to our cardiac misdiagnoses: except for being able to identify my own symptoms as possibly heart-related, the other factors seem far beyond my own control as a heart patient.
I can’t, for example, do anything about a doctor who “may not recognize cardiac symptoms as a risk to health” (which actually happened to me when that Emergency doc misdiagnosed my central chest pain, nausea, sweating and pain down my left arm, pronouncing confidently: “You’re in the right demographic for acid reflux!”)
I can’t do anything about a doctor’s time pressure in the clinic, or if that doc does an incomplete physical exam on me, or when a doctor behaves in a way that somehow makes me lose trust in that doctor.
I can’t do anything about a doctor’s implicit or explicit bias when assessing a heart patient who happens to be female. Or non-white. Or – heaven forbid! – a non-white female.
Those are pervasive societal and/or systemic issues far beyond my pay grade.
Yet the Patients As Advocates recommendations include both simplistic suggestions (e.g. keep track of your medications), as well as direct action tips on how heart patients – you and I – could be out there changing the entire healthcare system as we know it.
According to this document, for example, we could also be volunteering to join our local hospital’s Patient Family Advisory Council, where we could “suggest addressing the misdiagnosis of women’s heart disease’. We could be volunteering to become politically involved by contacting our elected officials “to advocate for policies to support women with heart disease”. We could be volunteering “to look for opportunities to partner in heart-disease related diagnostic research”.
I’m not exactly sure how any of these recommendations will fix “time pressure in the clinic” or “implicit bias” – or any of the factors itemized in the three key issues blamed for disproportionate cardiac diagnostic error rates in women.
Perhaps most niggling to me was was the implication that if you heart patients out there are not “part of the solution”, then you’re clearly part of the problem. Or perhaps it was the apparent pivot away from educating the ones doing the misdiagnosing (while using diagnostic tools that have for decades been designed and researched on white middle-aged men) and toward targeting female heart patients to start improving things, almost as if to say: if the docs won’t do it, maybe you patients will. In other words, women themselves are now being asked to do the heavy lifting that isn’t being adequately done by the medical profession.
The Patients As Advocates document also recommends that when you do see the doctor for your cardiac symptoms, you should“push for more information if you feel that your questions are not being answered.” I always recommend asking clarifying questions when you don’t understand what your doctor is saying, but the word “push” here is troublesome to me, particularly in any setting with language or cultural barriers.(3) Ironically, the physicians studied actually asked patients only occasionally (29 per cent of the time) if they had any questions during medical encounters, but when they did ask, most patients (79 per cent) responded with a question. So instead of urging patients to “push for information”, it seems like we’d see more predictable results if physicians were the ones being urged to act, starting by asking their patients, “What questions do you have for me?” (rather than “Any questions?” )
Speaking of asking questions, I asked only one question after that Emergency doc misdiagnosed my heart attack as acid reflux: (“But Doctor, what about this pain down my left arm?“) Even I knew that arm pain is NOT a symptom of indigestion. But the immediate result of asking that reasonable question was a stern scolding from one of his colleagues: an Emergency nurse who walked up to my bedside and hissed at me:
“You’ll have to stop asking questions of the doctor. He’s a very good doctor, and he does NOT like to be questioned!”
Utterly humiliated at being spoken to like that, I couldn’t get out of that Emergency Department fast enough. This is what can happen in real life, even when a relatively informed person like me (who even worked at the same hospital) “pushes for more information”. See also: “When You Fear Being Labelled a ‘Difficult’ Patient”
The buzzword term ’empowered patients’ is rarely far behind well-meaning suggestions that you ought to be doing far more than you’re doing right now. But patient empowerment is not about the patient taking full control, or shifting the burden of responsibility over to the patient. In Marie Ennis O’Connor’s interesting column on this topic, she reminds us that “not everyone likes to use the term ‘patient empowerment” because it implies that it’s an authority given to someone to do something. She cites the words of Dublin patient advocate, Rachel Lynch: “It can be quite tiring being empowered when all you want to be is well.”
Please don’t misunderstand: I’m happy to see any women (or men) living with heart disease who are well enough and motivated enough to actively pursue “being part of the solution” – in any ways that truly speak to them. But as Marie adds, “Patient empowerment cannot be imposed top down.”
During my WomenHeart Science & Leadership patient advocacy training at Mayo Clinic in 2008, nobody told me that I had to launch a blog, write a book, or speak at medical conferences in order to solve the problem of cardiac misdiagnosis in women. What I learned at Mayo was that there are so many avenues each of us could take to make a difference in our world – small, medium or large steps, every one just as important as the next. My favourite example of this kind of contribution is the WomenHeart “Heart Scarves” project, which recruits volunteer knitters to create beautiful red scarves, gifts to women recovering from a cardiac event, delivered to them either in hospitals or at cardiac rehab classes. No politics, no committees – just a simple donation of pure caring. And to a new heart patient who “needs a hug”, as one volunteer knitter described, that is a lot.
My former public relations colleagues still tease me that everything I have done over the past 13 years was simply what PR folks do when they have a heart attack: we write and speak and look stuff up – because that’s all we know how to do.
This is likely what the late tennis great Arthur Ashe meant when he wisely advised us:
“Start where you are. Use what you have. Do what you can.”
Heather M. Johnson, Celina E. Gorre, Amy Friedrich-Karnik, Martha Gulati, “Addressing the Bias in Cardiovascular Care: Missed & Delayed Diagnosis of Cardiovascular Disease in Women“, American Journal of Preventive Cardiology, 2021,
“Patients As Advocates: Being Part of the Solution to the Misdiagnosis of Heart Disease in Women” – a one-pager for women; WomenHeart: The National Coalition of Women with Heart Disease in collaboration with SIDM.
Menendez ME et al. “Patients With Limited Health Literacy Ask Fewer Questions”. Clin Orthop Relat Res. 2017 May; 475(5):1291-1297. doi: 10.1007/s11999-016-5140-5.♥
NOTE FROM CAROLYN: I wrote more about how women are at significantly higher risk than men to be under-diagnosed and (worse) under-treated even when appropriately diagnosed 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 bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher – and use their code HTWN to save 20% off the list price.
Q: Should women be expected to do the ‘heavy lifting’ to help address diagnostic error in cardiology?