by Carolyn Thomas ♥ @HeartSisters
I finally realized that I was in big trouble during a five-hour flight from Ottawa to Vancouver. But I’d been told emphatically by an Emergency Department physician two weeks earlier that my symptoms were just from acid reflux – and had nothing to do with my heart.
So for two weeks, I’d endured increasingly debilitating episodes of chest pain, sweating, nausea and pain radiating down my left arm. But hey! – at least I knew it wasn’t my heart. A man with the letters M.D. after his name had told me so.
I suffered two more identical attacks in the Ottawa airport before boarding, and two more during that endless flight to Vancouver. At no time did I consider saying anything to the Air Canada flight attendants about my growing distress. I sure didn’t want to be one of those passengers they have to turn the plane around for because of a medical emergency. How embarrassing would that be – and all just for indigestion?
It turns out that women like me are far more likely than men to delay seeking treatment despite clear signs of a heart attack, a behaviour pattern that has puzzled cardiologists and contributes to the higher mortality rate from heart attack among women. Researchers even have a name for it: treatment-seeking delay behaviour.
By the way, even when we do seek help immediately, as a study published in The New England Journal of Medicine showed, women are seven times more likely to be misdiagnosed in mid-heart attack and sent home from the Emergency Department compared to men.(1)
An intriguing Oregon Health & Science University study published in The American Journal of Critical Care confirmed women’s treatment-seeking delay behaviour during a heart attack – and also helped me feel less embarrassed about my own treatment-seeking delay decisions back in 2008.(2)
Oregon researchers identified six common patterns of decision-making delays between the time that women first know they are experiencing serious cardiac symptoms and the time when they go for help.
These six patterns are:
- knowing and going(women acknowledged something was very wrong, made a decision to seek care, and acted on their decision within a relatively short time, typically 5-15 minutes)
- knowing and letting someone else take over (women told someone about their troubling symptoms and were willing to go along with recommendations to seek immediate medical care)
- knowing and going on the patient’s own terms (women wanted to remain in control, were not willing to let others make decisions for them, and openly acknowledged that they did not like to ask others for help – these are the women who drive themselves to Emergency!)
- knowing and waiting (women decided that they needed help, but delayed seeking treatment because they did not want to disturb others )
- managing an alternative hypothesis (women decided symptoms were due to indigestion or other non-cardiac causes, and were reluctant to call 911 “in case there’s nothing wrong and I’d feel like a fool” – until their severe symptoms changed or became unbearable)
- minimizing (women tried to ignore their symptoms or hoped the symptoms would go away, and did not recognize that their symptoms were heart-related)
A later study also confirmed these treatment-seeking delay behaviours among younger women with heart attack symptoms under the age of 55.
Ironically, the biggest obstacle to reducing women’s treatment-seeking delays, according to the Journal of Social Science & Medicine, is their lack of awareness in interpreting heart attack symptoms.(3)
Even women in that first ‘knowing and going’ behaviour group admitted being confused about the symptoms of a heart attack.
For example, most female heart attack survivors report feeling like something was terribly wrong over months leading up to an eventual correct diagnosis. Heart attack symptoms can come and go during longer periods of feeling “normal” between symptomatic episodes. And heart attacks can be experienced as “slow onset” events (instead of the dramatic chest-clutching-falling-down-unconscious scenario we picture that’s not actually a heart attack, but sudden cardiac arrest.
Treatment delay is the period of time between the onset of symptoms and actively getting appropriate help, and it can be divided into these three phases:
- decision time – the period from the onset of acute symptoms to the decision to seek care (for example, calling 911)
- transport time – the period from the decision to seek care to arrival at the Emergency Department
- therapy time – the period from arrival at the Emergency Department to the start of medical treatment
Only the first phase is the one YOU have complete control over. Don’t blow it.
Learn more about women’s heart attack symptoms – and then don’t delay seeking treatment.
You know your own body.
You know if something does not feel right.
If you experience unusual (for you) symptoms that may be heart-related, remember the following tips:
- Call 911 immediately.
- Do not drive yourself to hospital, and do not let anybody else drive you unless absolutely unavoidable.
- Chew one full-strength uncoated aspirin while you’re waiting for the ambulance (chewing just dissolves it faster so it’s absorbed faster; you can drink water with it).
Please do NOT do what I did by delaying a decision to get urgent help because of embarrassment. You deserve to put yourself in that ‘knowing and going’ behaviour group.
© Carolyn Thomas http://www.myheartsisters.org
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(1) 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.
(2) Anne G. Rosenfeld, Allison Lindauer, Blair G. Darney. Understanding Treatment Seeking Delay in Women with Acute Myocardial Infarction: Descriptions of Decision-Making Patterns. American Journal of Critical Care. Am J Crit Care. 2005;14(4):285-293.
(3) Nancy E. Schoenberg, Jane C. Peters, Elaine M. Drew. Unraveling the mysteries of timing: women’s perceptions about time to treatment for cardiac symptoms. Social Science & Medicine 56 (2003) 271–284.
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NOTE FROM CAROLYN: I wrote more about women’s treatment-seeking delay behaviour in Chapter 2 of my book, “A Woman’s Guide to Living with Heart Disease“ (Johns Hopkins University Press, 2017). You can ask for this book at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from Johns Hopkins University Press (use their code HTWN to save 30% off the list price when you order).
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Q: Have you ever engaged in any of those treatment-seeking delay patterns during a medical crisis?
See also:
The symptomatic tipping point during heart attack
Too embarrassed to call 911 during a heart attack?
Why wouldn’t you call 911 for heart attack symptoms?
‘Gaslighting’ – or, why women are just too darned emotional during their heart attacks
How can we get female heart patients past the E.R. gatekeepers?
Early warning signs: how women can tell if they’re headed for a heart attack
Heart attack misdiagnosis in women
Why we ignore serious symptoms
Denial and its deadly role in surviving a heart attack
Downplaying symptoms: just pretend it’s not a heart attack
The sad reality of women’s heart disease hits home
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Heart Sisters 
Knowing and Going on Patient’s Own Terms: Was trying on a Dr. Seuss “Thing One” Halloween costume the night of my classic-symptom widow-maker heart attack. Refused to go to ER until I changed, reasoning, “They won’t take me seriously wearing this.”
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Oh, my. I can just imagine!
Your story reminded me of a story from another reader, a heart patient who is a professional clown (entertaining at children’s parties, etc). She was participating with other clowns in a huge 4th of July parade in her town one morning when her ICD suddenly fired (an implantable defibrillator in her chest that fires in case of sudden cardiac arrest). Her only thought as the paramedics were loading her into the ambulance was: “What on earth will the ER docs think when they see this clown being wheeled in?!”
I’m guessing that ER staff have seen it all… 😉
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