Words matter when we describe our heart attack symptoms

16 Nov

by Carolyn Thomas     @HeartSisters

When I interviewed Dr. Catherine Kreatsoulas* about the research paper she presented last month in Vancouver at the Canadian Cardiovascular Congress(1), she mentioned her previous heart study that caught my attention.

I was surprised by her explanation from that earlier research on how some women describe their chest pain during a heart attack (2), as she told me:  .   .

“What we found fascinating in that study is that women would use a host of descriptive language to describe their heart attack symptoms, whereas men’s symptom vocabulary was generally more succinct. 

“I cannot count the number of times I observed a physician leaning over a female heart patient prior to going for an angiogram, while asking: ‘So tell me about your chest pain’, and the woman very quick to respond:

Well, I don’t really have chest pain. I have a discomfort, it’s more like pressing. I wouldn’t call it chest pain, I would describe it more as a bad ache.”

“And much to my amazement, I would observe the physician/resident record in the patient’s notes, No CP’ meaning no chest pain! 

“We have no way of accurately estimating just how many patient charts have documented ‘No CP’ – when perhaps a more descriptive term for ‘chest pain’ expressed was used by the patient.”     .

This observation made sense to me, as I have frequently heard female heart attack survivors describe their own chest symptoms as “pressure, heaviness, fullness, tightness, aching, burning”  – rather than with the word “pain”. See also: How Does it Really Feel to Have a Heart Attack? Women Survivors Answer That Question

If there is actually such a person working in medicine, it means we have a lot more work to do to help enlighten them before they misdiagnose us and send us home. 

And if a symptom anywhere in the chest area is worrisome enough to propel a woman to seek emergency medical care, let’s not split hairs if it doesn’t look exactly like this:

Pictures like this in the media are, in my opinion, downright dangerous. They continue to perpetuate the notion that THIS is what a heart attack always looks like – which would be a profoundly false notion.

Some studies suggest that about 8-10% of women experience no chest symptoms at all during a heart attack.(3) This generally translates as no pain, no pressure, no heaviness, no fullness, no tightness, no aching, no burning or any other symptoms of any kind in any part of the chest area. Or it could, as Dr. Kreatsoulous found, simply mean that chest symptoms were not identified/recorded by physicians.

I met a woman during my Mayo Clinic training, for example, whose only symptom during her heart attack had been a persistent cough.

Another whose only symptom was upper lip numbness.

Some whose only symptoms were vomiting and a sore jaw.

And many whose only symptoms were crushing fatigue and upper back pain.

So many weird and wacky heart attack symptom-combos, in fact, that it is simply no longer possible to blithely accept the insistence of some that men and women always experience identical heart attack symptoms that always include chest pain.

And let’s face it, ladies: we know what pain feels like.

I’ve broken bones falling off my bike, survived a near-fatal case of ruptured appendix/peritonitis, was a distance runner for 19 years, and popped out two babies the old-fashioned, drug-free way – which is to say, I know my pain.

And that central chest pain during my heart attack felt nothing like any of those previous examples of “pain” – in the same way that toothache pain is different than the pain of rheumatoid arthritis.  See also: The Freakish Nature of Cardiac Pain (part 1 of my 3-part series on pain)

My own heart attack symptoms felt like a cross between a tractor trailer parked on my chest and severe burning extending right up into my throat. I also had nausea, sweating and dull pain radiating down my left arm. Textbook Hollywood Heart Attack signs.

It was as “painful” as I can possibly imagine any chest symptom to feel, given that I had no clue what heart attack chest pain feels like.

I just knew that something was terribly, terribly wrong. By the way, before that spring morning in 2008, I had never gone to the Emergency Department except to have a cast put on after that cycling accident.  In fact, like most women, it took a lot to force myself to go for help – even with those textbook heart attack signs.

And, unlike the subjects reported in Dr. Kreatsoulas’ 2013 study, I certainly did use the specific words “chest pain” loud and clear to the Emerg doc who still sent me home anyway – misdiagnosed with acid reflux, and apologizing like crazy for having made such a fuss over “nothing” but a simple case of indigestion.

So here’s my question: if I – even in the midst of classic cardiac symptoms – was sent home despite what Dr. Kreatsoulas and other researchers would clearly consider “typical” cardiac symptoms, can you imagine how swiftly such a physician would send home women presenting with weird and wacky “atypical” symptoms? 

I was actually back in my home that first morning barely five hours after the first onset of symptoms – far less time than current cardiac treatment guidelines recommend, particularly for cardiac enzyme blood tests. 

No wonder all my tests that morning seemed “normal”.

Here’s a simple story that sums up for me the alarming differences between how men and women are treated when presenting to Emergency with cardiac symptoms:

A woman attending one of my heart health presentations told me of her recent trip to the Emergency Department of our local hospital, and an overheard conversation between a doctor and the (male) patient in the bed next to hers beyond the curtain:

“Your blood tests came back fine, your EKG tests are fine – but we’re going to keep you for observation just to rule out a heart attack”.

A male patient is thus kept in hospital for careful 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 just like his, and with our misdiagnoses ranging from indigestion to anxiety, stress, pulled muscles, or menopause.

Consider this, dear heart sisters: just as respected cardiology resources like Mayo Clinic and the Texas Heart Institute do, no less than the world-famous Cleveland Clinic (widely considered the top heart institute in North America) warns:

Women often have different symptoms of a heart attack than men and may report serious symptoms even before having a heart attack, although the signs are not ‘typical’ heart attack symptoms. These include:

  • neck, throat, shoulder, upper back, or abdominal discomfort
  • shortness of breath
  • nausea or vomiting
  • sweating
  • anxiety or “a sense of impending doom”
  • light-headedness or dizziness
  • unusual fatigue for several days

We already do know that women like me are far more at risk of being misdiagnosed in mid-heart attack and sent home from the Emergency Department compared to our male counterparts.

And I’ve often said that if only that first Emerg doc had bothered to simply Google my symptoms, only one possible diagnosis would have popped up in his search: myocardial infarction (heart attack).

Research on cardiac misdiagnoses reported in the New England Journal of Medicine looked at more than 10,000 patients (48% women) who went to their hospital Emergency Departments with heart attack symptoms. Investigators found that women 55 and younger were seven times more likely to be misdiagnosed and sent home compared to our male counterparts. (4)

The consequences of this were enormous, according to researchers: being misdiagnosed and sent away from the hospital doubled the chances of dying.

 

Screen Shot 2016-03-25 at 5.06.28 PM

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* Dr. Catherine Kreatsoulas is a Canadian epidemiologist who is also a Fulbright Scholar and Heart and Stroke Research Fellow at the Harvard School of Public Health.
.(1) Kreatsoulas C et al. The Symptomatic Tipping Point: Factors That Prompt Men and Women To Seek Medical Care. Presented at the Canadian Cardiovascular Congress, October 2014. Canadian Journal of Cardiology Volume 30, Issue 10, Supplement, Page S132.
(2)  Kreatsoulas et al. Reconstructing Angina: Cardiac Symptoms Are the Same in Women and Men. JAMA Intern Med. 2013; 173(9):829-833.
(3) 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 2026.
(4) 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.

Q:  Is it the patient’s responsibility to describe heart attack symptoms in a way doctors can understand?

See also:

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22 Responses to “Words matter when we describe our heart attack symptoms”

  1. Jane R February 20, 2017 at 6:34 pm #

    Descriptive words very much matter as in the anecdote: “Well, I don’t really have chest pain. I have a discomfort, it’s more like pressing. I wouldn’t call it chest pain, I would describe it more as a bad ache.”

    I’m writing tonight to ask why ER personnel, even one’s own primary care physicians, and staff, insist on terming “chest pressure,” and/or “chest heaviness,” as “pain.”

    Pain is pain. Pressure and heaviness are just that. Most of us know what pain is. Being shown yucky faces past the age of three, or reporting “pain on a scale of one to ten,” when you’ve had pain that most would consider unbearable, (as someone else stated), is not only insulting, but it is false. I hope there will be a reply to this question.

    (Incidentally, every time I go to my primary care physician’s office, I am first asked, “Are you having any pain today?” It is meaningless. My blood pressure shoots up. I have a chronic illness that causes pain). But chest pressure, chest heaviness, are just that.

    Thank you.

    Liked by 1 person

    • Carolyn Thomas February 20, 2017 at 6:58 pm #

      Hi Jane – you bring up an interesting point. My take on this “pain” vs “pressure” difference is that, for many women in mid-heart attack, there IS no pain as you describe (just that heaviness or fullness or pressure, etc). In fact, some research even suggests that heart muscle damage during a serious heart attack may actually be worse in patients experiencing very little actual chest pain.

      But the reality for many years has been that the ER doc who doesn’t hear the words “unbearable chest pain” loud and clear from a patient (particularly a female patient) will write “No CP” on the patient’s chart – and there goes any further likelihood of a correct diagnosis of heart attack.

      It’s NOT that docs “insist on terming chest pressure, and/or chest heaviness, as pain”. In fact, it’s just the opposite! Chest pressure, heaviness, fullness, dull ache – they’re not “pain” but they can certainly be signs of a heart attack.

      Like

  2. Sue Ann February 20, 2017 at 1:07 pm #

    It’s a good article. I’m glad to know I’m not the only one who felt talked down to and dismissed. I have had chest pains my entire life. I have a bone spur on my spine and occasionally it will affect my left lung. However I know my pain like you said, and recently went to the ER for a smothering feeling, a fluttering in my chest, inability to breathe fully and a pain under my left arm pit extending down to my elbow where it ached. Two EKGs and a cardiac enzyme test came back normal within an hour. I was given Ativan and told it was anxiety and that I was fine.

    A week later I’m still having the same symptoms but I am too embarrassed to go back to the hospital. PS the Ativan did nothing to ease the symptoms it did however make me feel tired and cared less about the pain.

    Like

    • Carolyn Thomas February 20, 2017 at 6:14 pm #

      I’m not a physician so cannot comment on your specific symptoms, Sue Ann, but I can say generally that *something* is causing your distressing symptoms. But right now, you have no idea if any of them are heart-related or not. Many of them are, in fact, very common in those experiencing anxiety. Try keeping a Symptom Journal listing precise details on day, time, description of symptoms, what you were doing/feeling/eating in the hours immediately preceding, etc. This list can often offer clues to solving the medical mystery…

      Like

  3. Alee Hassan October 22, 2016 at 12:02 pm #

    Very informative article. Must read …

    Like

  4. Melissa Frykman-Thieme July 1, 2016 at 11:05 am #

    Hi Carolyn–
    The heart attack stories above remind me so much of my own, when during my heart attack I was nearly not taken into the emergency room by the ambulance medics, in fact they sent me in the “non” emergency rig, the one that is staffed by volunteers with advanced first aid training. Once in the ER, I was nearly sent home because the ER doc thought that surely a stiff dose of antacids would fix me.

    It was because of my own and my husband’s KNOWING that I was having a heart attack (we are both RN’s) that we were able to refuse to be discharged until they did another troponin (blood test that indicates heart attack). It came back positive, and I was admitted, but too late for intervention in the cath lab or administration of meds that could have reversed or minimized the heart damage.

    Since then, my heart health has been a continuing nightmare. At least I have been able to put together a really fine cardiac team for me. (Most women with heart disease that I know have been through at least four cardiologists before finding one who speaks the right language and has actual listening skills. Oh lordy, I do go on……Thanks for listening.

    Liked by 1 person

    • Carolyn Thomas July 1, 2016 at 11:27 am #

      Hi Melissa and thanks so much for sharing your story here. I couldn’t help but wonder throughout while reading it: what if you and your hubby weren’t trained RNs? What if you didn’t know about the troponin test? What if you hadn’t stood firm and demanded appropriate care? What about all the heart patients out there who just meekly go along with what health care professionals are telling them? Thank goodness you now have a great cardiac team – but it’s a shame you NEED to have such a great team!

      Like

  5. Lin D. February 12, 2016 at 9:12 pm #

    Thank you for your blog! I am new to all of this and have found so much solace just reading and being able to relate.

    I am just home from the (2nd and only helpful) hospital myself. The first E.R. that I went to, the Dr. sent me home saying it was probably just a virus or anxiety, that I was too young to have a heart attack (I’m 36). The nurse even took blood and apparently I did have elevated troponin levels. I didn’t know this information until the following day when I went to an urgent care clinic, and the Doctor there requested the bloodwork from the E.R. the evening before. The Doctor at the urgent care immediately sent me to a new E.R. where they diagnosed me correctly.

    Luckily the 1st E.R. nurse as she was discharging me (after the Doctor had left the room) suggested that I go to another Doctor even if it was just a clinic by tomorrow at latest. Had she not mentioned that, I probably wouldn’t have gone. I was trusting that the 1st M.D. was correct, even though I really felt he wasn’t, even then.

    Unfortunately I thought, who am I to argue the Doctor? He would know better. I should have fought harder for myself.

    I’m so glad I’m not the only one who has been through this. I wish no one else would have to deal with this potentially life threatening misdiagnosis.

    Thanks again for what you are doing here!

    Liked by 1 person

    • Carolyn Thomas February 13, 2016 at 7:28 am #

      Thanks for sharing your story here, Lin. That first E.R. nurse was, literally, a lifesaver for you by telling you to seek out another doctor, no doubt suspecting from your elevated troponin levels in your blood test that you were NOT merely suffering from “a virus or anxiety” as her colleague had decided.

      By comparison, the E.R. nurse who worked with the first E.R. doc who misdiagnosed my heart attack as acid reflux also waited for the doctor to leave my bedside before speaking to me, but what SHE said was much different: a stern warning of “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 humiliated by this scolding – so when my symptoms returned (of course they did!), there was no way I was going to go back to the E.R. because clearly I was just making a fuss over nothing.

      Fascinating how the words/interventions of just one person can influence patients so dramatically! Best of luck to you…

      Like

  6. Kathleen November 29, 2014 at 12:23 pm #

    My anatomy provides a fairly constant level of pain, due to genetic conditions and treatments, so to have any life at all, since I was very young I have had to learn to function through it.

    But I certainly know when something is different. Still, I remain stoic through a great deal of pain while describing what I feel with fine distinctions that really matter to me.

    This post underlines how those distinctions are totally lost on people (doctors and nurses, but always men, I now realize) who only want to know whether or not I feel a “sharp” pain. To which I may reply, “No, it’s more of a horrible grinding quality…” and then be astonished to read that I demonstrated “no pain.”

    And the Pain Scale really is my enemy. My 10 is already a football field away from what most people (not on this forum) will ever know, so for me to even mention pain it must already be significant. I will never forget one hospital surgical ward nurse who really got my number: With contorted face and through tears I considered and reported a pain level of 7. “Oh,” she said, “I know YOU,” and shook her head as she added, “A 7…” in a tone that recognized it as the nonsense it was. And she significantly ramped up the pain relief in my IV.

    Liked by 1 person

    • Carolyn Thomas November 29, 2014 at 4:42 pm #

      Bless that perceptive nurse, Kathleen! So many people tell me about having their symptoms minimized by dismissive health care providers. When I worked in hospice palliative care, we used to say “the pain is what the patient says it is” to remind our staff never to minimize (e.g. that patient smiling through her teeth so as not to be a bother or worry her family, or who insists on delaying pain meds now because things might get much worse later).

      Speaking of pain scales, have you seen this one from the brilliant Hyperbole and a Half site? Hilarious, yet strangely useful…

      Like

      • Kathleen November 30, 2014 at 6:41 am #

        Oh thanks, that’s great! Waaaay better than the one they give us at the clinic, but on that miserable tool even those “lalalalala” pics usually will get me to up my level from the initial number. And it’s just because I know how bad it really CAN get.

        Liked by 1 person

  7. jomo November 18, 2014 at 7:25 pm #

    Great post. How long did the heart attack last for? Were you in pain for long? Do you fear another one?

    It’s something I know will happen to me one day (T1 diabetic female) but I can’t imagine what’s it’s really like. However, I know too well the feeling of having my diseases be misdiagnosed and dismissed as “silly timewasting woman” problems – it’s not nice at all.

    Liked by 1 person

    • Carolyn Thomas November 19, 2014 at 5:10 am #

      Hello Jomo – everybody’s heart attack experience is so different (read this for many examples of that truth!) I want to reassure you that just because you have a cardiac risk factor (T1D) does not mean a heart attack is inevitable. T1D is just one of many risk factors; all this means is that you, more than some others, must be diligent in controlling the risk factors you can control (including stress – which is why worrying now about what a potential heart attack will be like is NOT a good idea!) Best of luck to you…

      Like

  8. CuriositytotheMax November 16, 2014 at 12:24 pm #

    This post is really valuable information. For an educated woman I’m soooo guilty of minimizing – (I just did a 24 hour holter monitor and when I felt REALLY uncomfortable burning in my chest I wrote on the symptom sheet that I turned in: “probably my lungs because I was walking really fast”).

    BUT after reading your post the next time I go to the doctor (hopefully not the ER) I’m not going to use my knee-jerk reaction words. I am just going to fall down on the floor and scream . . . maybe I’ll start out with moaning . . . it’s more lady-like.

    Liked by 1 person

    • Carolyn Thomas November 16, 2014 at 2:48 pm #

      Ha! I can just picture your symptom sheet, Judy-Judith! Kind of reminds me of the little Elizabeth Banks film “Just A Little Heart Attack” (just click on the play arrow up a bit higher in the right sidebar ->) in which her character calls 911 and says apologetically: “Sorry to bother you…. I think I might be having a little heart attack….” We could all use a bit more willingness to do some good ol’ screaming!

      Like

  9. Cherilynn Veland, LCSW, MSW November 16, 2014 at 9:44 am #

    I had to post this on my blog, http://www.stopgivingitaway.com. I am all about women’s self-advocacy and how we downplay our struggles. This isn’t helpful. In addition, your article shows how it is harmful!

    Thank you.

    Liked by 1 person

  10. Lorraine Gradwell November 16, 2014 at 5:15 am #

    I had no idea I was having a heart attack and was describing my symptoms as ‘not pain, more like having something sitting in my chest, like a small baking tray . . ‘

    My husband leaned over my shoulder and said ‘She’s got chest pains’ and everyone swung into action!

    Liked by 1 person

    • Carolyn Thomas November 16, 2014 at 5:57 am #

      Hi Lorraine – “a small baking tray”!? I’ll have to add that to my list of “atypical” heart attack signs in women…

      Like

Trackbacks/Pingbacks

  1. Curious to the MAX - October 10, 2015

    […] …that heart attack chest pain must be described as “crushing”, but it’s often frequently described by women with words like pressure, heavy, burning, full or tight … […]

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  2. Curious to the MAX - October 8, 2015

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