Sometimes, people in my Heart Smart Women presentation audiences ask me if I’ve ever gone back to confront the Emergency physician who had misdiagnosed me in mid-heart attack with acid reflux and sent me home from the E.R. – despite my textbook symptoms of central chest pain, nausea, sweating and pain radiating down my left arm. No, my heart sisters, I never did. But what did happen was, I think, even more satisfyingly juicy.
Months after surviving that heart attack, and freshly fortified with Mayo Clinic cred after graduating from their annual WomenHeart Science & Leadership training for women with heart disease, I received an invitation to share what I’d just learned at Mayo to local Emergency Medicine staff. I was offered one hour on the agenda of their annual Staff Education Day to talk about my own fateful misdiagnosis – and how, according to the Mayo Women’s Heart Clinic, that scenario might be avoided for future female heart patients like me: women who present with textbook cardiac symptoms but “normal” diagnostic tests.
And as I once heard a patient advocate tell physicians at a medical meeting:
“The only way to heal a bad experience is to make it better for the next person.”
Dr. Brian Goldman is an Emergency physician and CBC radio broadcaster in Toronto who once observed to his White Coat, Black Art audience that the worst possible words Emergency docs could ever hear is:
“Remember that patient you sent home on Tuesday?”
These words can be particularly fraught with menace when they refer to the heart patient who gets misdiagnosed and sent home from the E.R. instead of being appropriately admitted.
I now believe that successfully navigating the gatekeepers working in Emergency Medicine (and thus being able to go immediately upstairs to Cardiology) may indeed be the most treacherous part of surviving a cardiac event – especially for women.
A woman attending one of my presentations told me of her recent trip to the Emergency Department of our local hospital, and an overheard conversation between the (male) doctor and the (male) patient in the bed next door beyond the curtain:
“Your blood tests came back fine, your EKG test is fine – but we’re going to admit you for observation just to rule out a heart attack”.
A male patient is thus kept in hospital for observation in spite of ‘normal’ cardiac test results. But I and countless other females in mid-heart attack are being sent home from Emergency following ‘normal’ test results like his, and with misdiagnoses ranging from indigestion to anxiety, gall bladder problems or menopause (a good all-purpose misdiagnosis).
We know that heart attack damage takes place gradually, as portions of the heart muscle are deprived of oxygen due to blocked coronary arteries feeding that muscle. Recent internal hospital “door to balloon time” response awareness efforts underscore this heart attack maxim of doctors:
“Time is muscle.”
But the urgency to protect heart muscle actually starts long before we show up in hospital.
And, shockingly, we also know that first-responders like paramedics may be significantly less likely to provide standard levels of care to women who call 911 with cardiac symptoms compared to their male counterparts, according to the disturbing results of a University of Pennsylvania study reported by the Society for Academic Emergency Medicine.(1)
Researchers found “significant differences in both aspirin and nitroglycerin therapy” offered to women vs. men. The gender of the health care provider involved in each of the Pennsylvania cases studied did not appear to change the findings; female ambulance attendants were just as lax in providing appropriate care to their female patients as their male colleagues were. And even after the UPenn researchers adjusted for the possibility that the patients’ age, race and baseline medical risk could have played a role in these apparent disparities, “the gender gaps in adherence to care protocols still remained”.
In fact, this study showed that of the women transported to hospital by ambulance who were subsequently diagnosed with heart attack, not one had been given aspirin by paramedics en route, as recommended treatment guidelines dictate.
Read that last line again. NOT ONE had been given aspirin by paramedics.
This statement is critically important because early standard interventions like aspirin therapy – which helps to reduce clotting within coronary arteries that can block blood flow to the heart muscle – can play an important role in preventing deadly damage to the heart muscle. UPDATE: Research published in the journal Women’s Health Issues reported virtually identical conclusions – and more – in December 2018; see also “Fewer lights/sirens when a woman heart patient is in the ambulance“
Here in British Columbia, I contacted the provincial office of our BC Ambulance Service to find out what standard of care their BC Ambulance Treatment Guidelines specifically recommend for all ambulance attendants in our province when it comes to providing aspirin. They referred me to guidelines that do indeed clearly spell out a protocol for the use of aspirin (ASA) for all patients presenting with “Chest Pain Suggestive of Acute Coronary Syndrome”, a precursor to heart attack (myocardial infarction):
“ASA helps to prevent re-occlusion but will not open the artery. It has been shown to reduce mortality and is one of the most important early treatments the patient can receive.”
Interestingly, these same treatment guidelines suggest that nitroglycerin (the friend of all heart patients living with the chest pain of angina) has not been proven to improve heart attack outcomes:
“Nitroglycerin may relieve the pain of angina, but will not relieve the pain of myocardial infarction and may well worsen outcomes if it causes hypotension (low blood pressure).”
Note that even the otherwise sound BC Ambulance Treatment Guidelines for aspirin cited above include this protocol in a section called “Chest Pain Suggestive of Acute Coronary Syndrome.”
Read that one again: Chest Pain.
This begs the question, then, that even though the aspirin protocol is clearly recommended in writing as “the most important early treatment” for possible heart attack, will it actually be offered by paramedics if the patient riding in the back of the bus is one of the women who experience no chest pain during a heart attack?(2)
The BCAS guidelines even warn:
“Women have ‘atypical’ pain complaints – or minimal complaints – more commonly.”
For example, what if our heart attack symptoms involve only vomiting, shortness of breath and crushing fatigue (as reported by many women in mid-heart attack)? Are the ambulance attendants who come to our aid even going to look up the page called “Chest Pain Suggestive of Acute Coronary Syndrome” in their treatment manual if we have no chest pain?
These guidelines need to be corrected, and they need to be corrected now. (* See Comments below for a response from the BC Ambulance Service).
January 31, 2016: The American Heart Association released its first ever scientific statement on women’s heart attacks, confirming that “compared to men, women tend to be undertreated“, and including this finding: “While the most common heart attack symptom is chest pain or discomfort for both sexes, women are more likely to have atypical symptoms such as shortness of breath, nausea or vomiting, and back or jaw pain.”
Please note: this was the first ever scientific statement on women and heart attacks from the American Heart Association in its entire 92-year history.
Meanwhile, for those Pennsylvania women in the UPenn study who survived the aspirin-free ambulance ride, they still had to get past the E.R. gatekeepers once they arrived at the hospital.
Unfortunately, they were met by both nurses and physicians working in Emergency Departments who reported to researchers a bias towards looking for women’s heart attack chest pain symptoms, even though a majority later acknowledged that they knew women often present with vague, non-chest-pain symptoms even during a serious cardiac event. And remember that, depending on the study cited, between 10-42% of women patients will report no chest symptoms at all during a heart attack. None. Zero. Zilch. No pain, no tightness, no heaviness, no aching, no fullness, no twinges, no burning. Absolutely no chest symptoms.(2,3)
In the E.R., a raft of standard cardiac diagnostic tests will be ordered for us. Trouble is that tests that have been designed, researched and recommended for (white, middle-aged) male patients have not turned out to be as accurate in appropriately identifying cardiovascular disease in females. This may help to explain why women continue to be misdiagnosed in mid-cardiac event by physicians who send us home from the E.R. with what appear to be “normal” cardiac test results. See also: Those curious cardiac enzymes
Cardiologist Dr. Sharonne Hayes, founder of the Mayo Women’s Heart Clinic in Rochester, Minnesota, offers this informed take on the problem with many cardiac diagnostic tests in women:
“Misconceptions about women’s heart disease grew roots decades ago. In the 1960s, erroneous assertions that heart disease was a man’s disease were widely spread to the medical community and to the public. This led to research almost exclusively focused on cardiovascular disease in men.
“Many clinical trials and research studies in the past excluded women or simply didn’t make an effort to enroll women in sufficient numbers to draw sex-based conclusions.”
This exclusionary practice in cardiac research has had grim ramifications ever since.
A study on cardiac misdiagnoses reported in the New England Journal of Medicine, for example, looked at more than 10,000 patients (48% women) who went to their hospital Emergency Departments with heart attack symptoms.(3) Women in their 50s or younger were seven times more likely to be misdiagnosed and sent home compared to their male counterparts.
The consequences of misdiagnosis were enormous: being sent home from the hospital doubled the women’s chances of dying.
Dr. Hayes also believes that such misdiagnosis in women may be due to existing treatment protocols being ignored:
“Right now, guidelines help women get the care that has been shown to improve survival and long term outcomes in large groups of patients.
“Part of the problem now is that the guidelines are less likely to be applied to women compared to men. We know that when hospitals have systems in place to ensure they provide care according to the guidelines, women’s outcomes improve, even more than men’s.”
But my question to the UPenn academics (and all other cardiac researchers) is this: so now that you’ve undertaken this research, presented your findings at conferences, maybe even been published in a scientific journal (a considerable boost for your CV, no doubt), what real life changes have occurred as a direct and practical result of your study’s findings?
Did you try to initiate or even recommend immediate retraining and monitoring of emergency medicine personnel, ambulance paramedics and all first-responders in order to ensure established clinical protocols for both male and female patients are being followed?
Or did your study end, as so many do, with a CYA suggestion for further studies at some point by somebody else in the near or distant future someplace else?
Earth to cardiac researchers: What we don’t need is yet another study saying: “Things are bad for women heart patients”. Or as my irreverent heart sister/cardiac survivor Laura Haywood-Cory writes, women no longer need to hear:
“Sucks to be female. Better luck next life!”
Many of us who have actually survived this deadly cardiac event despite being misdiagnosed – sometimes repeatedly – already know this from traumatic personal experience.
Yet emerging research continues to tell us over and over again what we already know.
As important as clinical research may be in developing new diagnostic tests or new treatment protocols to address women’s heart disease, we know that, alarmingly, not all healthcare professionals are currently following even the minimum care guidelines that are already in place to help all patients – male or female – get the appropriate treatment we need.
What to do about this disturbing reality?
Women have to be willing to stand up for ourselves when we know something very wrong is happening. We would do this in a heartbeat if these symptoms were happening to our daughter or our sister or our mother, wouldn’t we? Why are we reluctant to demand good care for ourselves?
At a recent heart talk, one of the women in my audience asked what I might do differently if I now had to chance to replay that first visit to the E.R.
I told her that the most dangerous decision I made back then was to believe that E.R. doctor while choosing to ignore my increasingly debilitating cardiac symptoms (because a man with the letters M.D. after his name had told me quite clearly: “It is NOT your heart!”)
So instead of standing up for myself, I just meekly left my E.R. gurney and the hospital, feeling very embarrassed and apologetic for having made a fuss “over nothing”.
What I should have done instead as soon as the symptoms returned (which they did – again and again and again!) was to immediately go back to that E.R. at the very first episode of repeat symptoms – and then to keep going back no matter how many times they tried to send me home.
I will never forget the heart attack survivor I met during my Mayo Clinic training who did just this. She kept going back to her local E.R., despite being misdiagnosed each time. During each return trip, she told the staff: “I don’t care what you say – SOMETHING is wrong with me!” At her third desperate trip back to the E.R., she was advised to consider taking antidepressant drugs. At her fourth visit, she underwent emergency double bypass heart surgery.
When I do my women’s heart health presentations, I now make my entire audience chant along with me this practice demand:
“I don’t care what you say – SOMETHING is wrong with me!”
That’s also essentially what cardiologist Dr. Sharonne Hayes meant when she offered this advice for women seeking emergency help for heart attack symptoms:
“If you find yourself in an ambulance or Emergency Room, don’t be afraid to say to the paramedic or triage nurse:
‘I think I’m having a heart attack!’
“You want a proper diagnosis, and a straightforward blood test and EKG are the starting points. If the thought crossed your mind that you might be having a heart attack, you need to speak up.”
Remember the patient advocate I quoted earlier here? Here’s what she advised to that conference audience of health care professionals:
“It’s not realistic to have patients drive change on our own. We are sick. We are exhausted.
“YOU [referring to health care professionals] have to ask us. YOU have to listen.”
We do need this change to come from the top – including from E.R. department heads and ambulance managers who must train all staff in women’s unique heart disease presentation.
They must listen – but they must also believe what we say.
(1) Meisel Z et al. Influence of Sex on the Out-of-Hospital Management of Chest Pain. Academic Emergency Medicine Volume 17, Issue 1, 4 January 2010).
(2) S. Dey et al, “GRACE: Acute coronary syndromes: Sex-related differences in the presentation, treatment and outcomes among patients with acute coronary syndromes: the Global Registry of Acute Coronary Events”, Heart 2009;95:1 20–26.
(3) Pope JH, Aufderheide TP, Ruthazer R, et al. Missed diagnoses of acute cardiac ischemia in the emergency department. N Engl J Med. 2000;342:1163-1170.
NOTE FROM CAROLYN: I wrote much more about diagnosis and misdiagnosis in 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 their code HTWN to save 20% off the list price when you order).