I walked out of our local hospital’s Emergency Department after having my textbook heart attack symptoms misdiagnosed as acid reflux. Much later, my increasingly debilitating cardiac symptoms were finally correctly diagnosed (same hospital, different Emerg doc). But after my hospital discharge, my pushy family and friends kept asking me about that first visit to Emergency: “Why didn’t you demand to see a cardiologist? Why didn’t you ask for more tests?”
As I was soon to learn, that is so NOT how most health care systems work – especially for female patients. . .
First of all, as a person who had never given even one moment’s thought to the subject of heart attacks, how would I have known which further diagnostic tests to ask for? As embarrassed as I was about making a big fuss over a little indigestion, how could I possibly be in any position to “demand” to see a cardiologist? And why would I have doubted the confident pronouncements of a man with the letters M.D. after his name?
According to an editorial called “Cardiology’s Problem Women” published in the medical journal The Lancet, women “have historically been evaluated by a protocol geared toward men.”
We know that for decades, most cardiac research on symptoms, diagnostic tools and treatments have been done either exclusively on (white, middle-aged) men, or with women and minorities represented in statistically insignificant numbers.
Yet our current treatment protocol guidelines are largely based on the results of such studies. As the Lancet editorial explained:
“The historic failings of cardiology to take a balanced approach to research have led to fundamental flaws in the care for women with heart disease, and have cost the lives of many women. Many guidelines for the management of the 50% of heart disease that occurs in women are extrapolated from studies that predominantly enrolled men.”
“Even after seeking help, women get consistently worse care. U.S. data has suggested that women with heart attack symptoms were less likely to receive aspirin, be resuscitated, or be transported to the hospital in ambulances using sirens and flashing lights than were men.
“These factors contribute to the disproportionately higher mortality in women with cardiovascular disease than men.”
This issue of women being excluded in cardiac research should no longer be happening anymore, but it is.
According to a 2018 study published in the Journal of the American College of Cardiology, women are still “under-represented in clinical trials for heart failure, coronary artery disease and acute coronary syndrome” when compared to the prevalence of women within each disease population, thus “preventing clear results on gender-specific response.”
We’re often told now that a contributing problem for the shocking outcome disparity between male and female heart attack patients might be the weird “atypical” cardiac symptoms that women present during a heart attack which cause us to be under-diagnosed compared to our male counterparts.
But as my paramedic/filmmaker friend Cristina D’Alessandro likes to ask:
“Why do we call women’s heart attack symptoms ‘atypical’ given that we make up over half of the population?”
Maybe it’s the weird jaw pain or crushing fatigue or vomiting or that “sense of impending doom” (surprisingly common in women leading up to a heart attack) that are confusing to some physicians.
Or the problem might be the weird way that women describe those symptoms. As Harvard researcher Dr. Catherine Kreatsoulas has found, many women don’t even use the word “pain” to describe chest pain to Emergency physicians, instead using words like heaviness, fullness, tightness, pressure or ache). These words are also apparently confusing to some physicians.
In fact, I’d bet my next squirt of nitro spray that, unless you clearly have the words “chest PAIN” recorded front and centre on your medical chart, the likelihood of moving on to the next possible non-cardiac cause of your symptoms will be dramatically increased.
But what if it’s neither the symptoms nor the words you use to describe those symptoms that are contributing to the under-diagnosis and – worse! – under-treatment of female heart patients even when appropriately diagnosed?
What if it’s the cardiac diagnostic tools being used that are part of this problem?
The research of Dr. Karin Humphries and her team in Vancouver, for example, suggests a potential issue with the blood test for the cardiac enzyme called troponin (typically a reliable marker for heart muscle damage caused by a heart attack). But the commonly used troponin threshold in this test is based on a level that’s considered appropriate for men, but may be set too high for women – whose blood tests would be interpreted as “normal”. Dr. Humphries suggests that “setting a lower female-specific troponin threshold would improve the diagnosis, treatment and outcomes of women presenting to the Emergency Department.”
I’m not a physician, but even I knew that my textbook symptoms were pure Hollywood Heart Attack signs (central chest pain, nausea, sweating, and pain radiating down my left arm). More importantly, surely the Emergency physician who clearly told me: “You’re in the right demographic for acid reflux!” knew that pain down your left arm is not a symptom of acid reflux.
That statement was an example of an implicit diagnostic error called “anchoring bias“ (locking on to a diagnosis too early, and failing to adjust to information that contradicts that early assumption).
The trouble was, my diagnostic tests all came back “normal”. And if that happens to you, too, you can likely kiss a cardiac diagnosis goodbye.
In my case, I felt so embarrassed and humiliated for having made a big fuss over nothing but indigestion that it took me two full weeks before the increasingly debilitating symptoms became truly unbearable, forcing me to return to the same Emergency Department – but to a different Emergency physician, who this time called in a cardiologist, who correctly diagnosed my “widow maker” heart attack, which was swiftly and appropriately treated upstairs in Cardiology.
In my book, “A Woman’s Guide to Living with Heart Disease“ (Johns Hopkins University Press), I wrote a lot about about cardiac diagnostic issues plus doctor-patient communication (including more on Dr. Kreatsoulas’s research on how women describe cardiac symptoms). I also included these tips for appropriately and assertively communicating your cardiac symptoms to physicians:
- Adjectives are important. Get right to the point, but use strong descriptive words like dull, throbbing, intense, burning, tingling, heavy or piercing if appropriate.
- Do NOT minimize your symptoms. Don’t be like Elizabeth Banks in this must-see 3-minute film in which she responds to the 911 dispatcher (who has just asked what her symptoms are):“Nothing really. Just a little nausea, jaw tightness, shortness of breath, dizziness, pressure in my chest. . .” If you think you might be having a heart attack, say firmly, “I think I might be having a heart attack!”
Elizabeth Banks (whose mother and sister live with heart disease) wrote, directed and starred in “Just A Little Heart Attack“
- Describe how symptoms change your daily life and ability to function. Don’t just say you feel “tired” – talk about specific changes in your day-to-day life (“No longer able to carry the laundry basket up the stairs.”)
- Describe a location for your symptoms. Point to specific body parts if necessary.
- Start a Symptom Journal to help you track what you’re experiencing. Date/time of day/ what you were doing/eating/feeling in the hours leading up to the onset or worsening of symptoms, e.g. ‘I feel worse whenever I walk up our steep driveway.” A pattern sometimes emerges in such a journal.
- Be insistent about your symptoms if it feels like your physician isn’t getting it. Do not self-diagnose (e.g. “Could this just be a pulled muscle…”)
- If you feel embarrassed (for example, if you fear you may be judged or criticized for smoking), try saying, “This is hard to talk about, but I need your help.”
- IF SYMPTOMS PERSIST/WORSEN AFTER YOU ARE SENT HOME FROM EMERGENCY, do not be like me! Keep going back if things still feel worse. Do NOT be embarrassed to death.
Q: Have you ever experienced surprising diagnostic test results that later turned out not to match the condition?
NOTE FROM CAROLYN: If you’re interested in my book, A Woman’s Guide to Living With Heart Disease (Johns Hopkins University Press), 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 their code HTWN to save 20% off the list price).