by Carolyn Thomas ♥ @HeartSisters
It turns out that women like me are far more likely than men to delay seeking urgent treatment despite clear signs of a heart attack. This is a dangerously common decision pattern that contributes to the higher mortality rate among women like me. Researchers even have a name for it: treatment-seeking delay behaviour.
“What I Wish I Knew Back Then” is a back-to-basics summer series of posts here on Heart Sisters revisiting some of the most frequently asked questions from new heart patients. Today, Part 3 continues with another basic that’s far more common in women: “Why did I wait so long to seek help in mid-heart attack?” .
I first discovered the published research around this question in 2008 after surviving a misdiagnosed heart attack. I waited an astonishing two weeks to return to the Emergency Department where I’d been misdiagnosed with acid reflux – despite my alarmingly worsening cardiac symptoms. The first study I found to help explain my bizarre reluctance to seek help was an Oregon Health & Science University study published in The American Journal of Critical Care. It explained 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 then.(1)
The Oregon researchers identified six common patterns of delayed decision-making between the time women first know they are experiencing serious cardiac symptoms and the time when they decide to seek 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 under the age of 55 with heart attack symptoms.
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.(2)
Even women in that first ‘knowing and going’ behaviour group admitted being confused about the symptoms of a heart attack. This reaction is worse than you might think, as the American Heart Association confirmed after their 2019 national survey of women’s awareness of heart disease. Awareness was now lower than the previous national survey 10 years earlier! They learned, for example, that half of women surveyed were unaware that chest pain is a cardiac warning sign. Whaaaaat?!?
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.
You know your own body.
You know if something does not feel right.
Learn more about women’s heart attack symptoms.
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. Put yourself squarely in that “knowing and going” group!
© 2023 Carolyn Thomas – Heart Sisters
(1) 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 treatment-seeking delay 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 the JHUP code HTWN to save 30% off the list price).
Heart Sisters 
Last September, late one Sunday afternoon, I began feeling significant discomfort and something like a too-tight sports bra along with nausea. I lay down, could not get comfortable and remembered how a friend had described her heart attack experience as being unable to get comfortable. That, the nausea and this Heart Sisters blog prompted a 911 call and a trip to the ER of a major medical center and regional trauma center.
There had been a big accident and I was sent to wait, after being told the problem was my gall bladder. It wasn’t. After a while I insisted on going to a satellite of that hospital, likely to be less busy.
The receptionist and triage nurse immediately recognized I was having a heart attack. I was taken back and started on morphine and heparin, then was transferred back to the main hospital’s cardiac center, but began experiencing a sub-arachnoid hemorrhage (probably from the heparin). Most pain I have ever experienced!
That resulted in 4 days in neurosurgery ICU, serious pain meds which shut down bladder, etc., etc., etc. The people at the satellite hospital recognized I was having a heart attack and actually did a troponin test as opposed to just an EKG. I have been told somewhere that EKG’s don’t always show heart attacks, especially in the beginning in women, so it is important to stand up for yourself. I did that.
Where I live we are very fortunate to have 2 major hospitals and several small satellite hospitals for each of the big institutions. But you have to advocate for yourself. I would have had a much worse outcome had I waited at the first place.
Believe in yourself! My heart attack was most likely a vasospastic one. The whole experience underscored for me the vital importance of being well informed about your own health, and paying attention and self-advocacy.
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Hello Helen – what a nightmare you went through! You were very lucky to have survived delays, interventions and drugs that could have made you so much worse – yet also UNlucky because you managed to survive largely due to your OWN efforts.
Patients are often the least capable persons onsite with the ability or even the presence of mind to stand up for themselves about anything, never mind a life-and-death scenario like a heart attack! Your story should be used as a teaching lesson to medical students about the cascade effect that even one treatment can cause.
So glad you are still here to tell the tale, and to warn other heart patients to BELIEVE IN YOURSELF! As I like to tell my Heart-Smart Women presentation audiences, you KNOW your body. You know when something is just not right! It’s so important to listen to that little warning voice inside.
Take care, Helen – stay cool and safe! ♥
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