by Carolyn Thomas ♥ @HeartSisters
One of the most upsetting things about being misdiagnosed with acid reflux in mid-heart attack was the sense of pervasive humiliation I felt as I was sent home from the Emergency Department that morning. I had just wasted the very valuable time of very busy doctors and nurses working in emergency medicine. I left the hospital feeling apologetic and embarrassed because I had made a big fuss over NOTHING.
And such embarrassment also made me second-guess my own ability to assess when it’s even worth seeking medical help. Worse, feeling embarrassed kept me from returning to Emergency when I continued to be stricken with identical symptoms: central chest pain, nausea, sweating and pain down my left arm. But hey! At least I knew it wasn’t my heart, right?
I now ask those in my women’s heart health presentation audiences to imagine what I would have done had my textbook cardiac symptoms been happening to my daughter Larissa instead of to me. General audience opinion is that I, like most Mums, would have likely been screaming blue murder, insisting on appropriate and timely care for my child. But as U.K. physician Dr. Jonathon Tomlinson pointed out recently, even parents can feel insecure about their own ability to know what is a real medical emergency – and what is not – when it comes to their children. For example:
“A series of studies looking at parents of sick children suggested that what parents want is not only reassurance that there are no signs of serious illness and their children will be okay, but reassurance that they have done the right thing at the right time by asking for medical advice.
“Beyond reassurance, what parents want and need is confidence in the doctor and confidence in their own abilities.”
Dr. T cites one particular study in which researchers described the reactions of worried parents who had brought their sick children to see the doctor because the child’s alarming cough sounded and felt “rattly”.(1)
But when physicians pronounced the child’s lungs “clear” on examination – despite apparent “rattly” evidence to the contrary – researchers reported that parents not only felt that they were excluded from the “apparent mystique” of the professional’s clinical assessment, but also that their own judgement was being criticized, as Dr. T explained:
“Parents would then find it difficult to question the doctor’s authority, and were left feeling silly for worrying, or still perplexed by the problem.”
The part of Dr. T’s essay that grabbed me by the jacket lapels and swung me across the room was his personal account of what it’s like for those on the other end of the stethoscope:
“Thinking back as an inexperienced Emergency Department doctor and an exhausted GP, particularly before I had children of my own, I have no doubts that I left parents feeling bad about wasting my time.
“My intention, in a rather careless, ignorant or callous way, was to try to make sure they didn’t come back with a similar problem in future.
“My role was conflicted between my duty to my patients and my duty to stem the tide of demand.”
But how many physicians are as brutally self-reflective as Dr. Tomlinson now is?
I don’t believe that the Emergency Department physician who pointed a knowing finger at me while pronouncing: “You are in the right demographic for acid reflux!” was deliberately trying to make sure I didn’t come back with a similar problem in the future. But even if his fondest wish had been that I return to see him at my earliest convenience, my abject embarrassment at having wasted his time over what was obviously a simple case of indigestion made that return impossible – until my increasing cardiac symptoms finally became unbearable.
I wonder how often family physicians or Emergency Department staff take a moment to simply reassure patients (or the family members of patients)? This could look as basic as making this statement:
“You’ve done the right thing by coming here to get this checked out.”
But to some docs, such reassurance might read like a wide-open invitation to pesky “frequent flyers” to keep coming back to waste their time and resources.
Don’t get me wrong, dear readers. There are indeed people who do use health care services inappropriately, and whose resulting drain on those scarce resources must be addressed.
But an equally urgent concern for me is the number of heart patients who exhibit what’s called “treatment-seeking delay behaviour”, as described in a number of studies on this problem.
This delay reflects a powerful and potentially dangerous reluctance to seek medical help even in the face of severe symptoms.
Oregon researchers, for example, identified six distinct forms of unique responses to heart attack symptoms commonly observed in women.(2) How many of these six patterns of behaviour have you experienced?
- knowing and going (women acknowledged something was wrong, made a decision to seek care, and acted on their decision within a relatively short time, typically within 15 minutes)
- knowing and letting someone else take over (women told someone they had 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). Carolyn’s note: 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)
Even women in that first ‘knowing and going’ behaviour group often admitted treatment-seeking delay because they were confused about the symptoms of a heart attack.
So the critical issue, for women particularly, is NOT that they’re clogging up the Emergency Departments of the country with silly made-up complaints, but that they are denying and/or dismissing serious cardiac symptoms by NOT seeking emergency care – often at their own peril.
In my case, that frightening visit to the Emergency Department for my initial cardiac symptoms was only the second time in my life I’d ever been in Emergency (the first had been years earlier for broken bones after a cycling accident) which is to say that I don’t seek emergency care without a valid reason.
Yet by the time I realized on that fateful morning that I was about to be sent home with instructions to see my family doc about antacid medicine, it became impossible for me (as Dr. Jonathon Tomlinson described) “to question the doctor’s authority” or even to stop “feeling silly for worrying” about symptoms that actually needed to be worried about.
Whether we are seeking medical help for ourselves or for our children, how doctors and nurses respond to our concerns can have a profound impact on our sense of being competent healthcare decision-makers.
1. Neill SJ et al. The role of felt or enacted criticism in understanding parent’s help seeking in acute childhood illness at home: a grounded theory study. International Journal of Nursing Studies. 2013 Jun; 50(6):757-67.
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. 2005;14(4):285-293.
Q: Have you felt less competent in knowing when to seek medical help because of how a professional responded to you or your child?
NOTE FROM CAROLYN: I wrote more about treatment-seeking delay in Chapter 2 of my book, “A Woman’s Guideto Living with Heart Disease” (Johns Hopkins University Press, November 2017). 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 Johns Hopkins University Press (and use the code HTWN to save 20% off the list price when you order).
Denial and its deadly role in surviving a heart attack
Why we ignore serious symptoms
When patients are seen as “The Enemy”
Patient engagement? How about doctor engagement?
Six rules for navigating your next doctor’s appointment
Patient Reassured – Dr. Jonathon Tomlinson’s original blog post on his site, A Better NHS
14 thoughts on ““You’ve done the right thing by coming here today””
No one seems to talk about the fact that going to the emergency room is at best a boring, time-wasting, and exhausting activity for the patient and family. Anytime I’ve gone to the emergency room, I’ve dreaded it, and I tried every possible way to avoid going in the first place. I would much rather go see my doctor in her comfortable office at a decent hour of the day!
You are SO right, Josey! Even the thought of going back to Emerg fills me with dread. No wonder so many of us try to talk ourselves out of going until we are desperate! BUT having said that, dread is not a reason to talk ourselves out of going when we need to go.
This article touched me on two different levels.
One as a young woman (28) with heart disease, and another as a nurse. Only recently have I been diagnosed with coronary artery spasms along with mitral valve prolapse. The first few trips to the ER left me feeling embarrassed and insane.
Even as a nurse who has coded patients mid-heart attack, I still could not speak up for myself as they sent me back to work without ever running a test. I was lucky I did not have a heart attack.
This also opens my eyes to how much impact my words can have on a patient. I think I do a good job at reassuring my patients I am there for them, whatever their needs are, but it is good to step back and switch positions sometimes.
Thank you for another thought provoking article.
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Wow, Christina – I was blown away by this statement in your comment: “This also opens my eyes to how much impact my words can have on a patient.”
This is SO important and SO under-appreciated by far too many health care professionals. Every med school and nursing student should learn that important truth. I think it’s unfortunate that it often takes a medical crisis to really “get it” – I’m sorry that you had to switch positions with your patients at such a very young age. But I know that you will forever be a better nurse specifically because of that experience.
When I first had my heart attack at 37, I didn’t even realize that I had one. All I felt was a pain in my shoulder. I had had a car wreck two week before the heart attack that rolled my car and I had landed on my left side. So the morning before the heart attack, I picked up my 4 year old son to carry to daycare. About midmorning, I felt a sharp pain in my left shoulder blade. Then it just became an ache for the rest of the day. I worked a 10 hour day that day and worked another 8 hour day the next day.
The only reason I went to the ER was because a friend of mine convinced me I had a hairline fracture in my shoulder from the car wreck and reopened it while lifting my son. When they asked to do an EKG I was like, well why not and when they told me I had a heart attack I was shocked. I had at least a 98% blockage in my LAD, 85% in my right coronary, and 75% in my circumflex.
Two months later, I had pain down my left arm, a cold sweat, chest pain, and turned white with a low blood pressure. I was at work and they sent me to the ER by ambulance, but the ER doctor could find nothing wrong. The ER was busy that day and the doc made me feel like I was just a waste of time.
But my cardiologist has told me since I have severe coronary artery disease, if I have any thought as to it being a heart attack that I need to go to the ER. He was good and knows my financial situation and said since his office is next to the hospital that I could always go to his office and he would do an EKG. I went through two cardiologists before I found one that has really helped me.
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Andrea, your “hairline fracture in your shoulder blade” story is amazing! I may borrow that to share with women in my heart health presentation audiences as a good example of how a woman’s cardiac event does NOT always look like the classic Hollywood Heart Attack! Your other story of that second ER doc drives me crazy: all Emergency staff should be reminded that, especially for those with existing heart disease, patients should NEVER be made to feel like you’re wasting their time. So glad you found your current cardiologist who will go to bat for you.
I was a 6, a Minimizer to say the least. Actually, I suspected that my back ache was a heart attack but refused to accept it. The reasons were many; my age (I was only 52), my overall general health was good, I didn’t want to make a fuss, and sad to say, I didn’t think we could afford it! At the time, I had catastrophic insurance only and thought that going to the doctor or hospital would be too costly. By the time I did go to the hospital (2 weeks later), it was catastrophic!
My doctors can’t tell me if my situation would have been any better if I had gone to the ER right away, it was likely that all the damage was done with the MI. It was just miraculous that I survived it at all. But, surviving it actually contributed to my disbelief too. How could I have had a heart attack and still be here? I call myself the “Queen of Denial”, or when I speak to groups, the “Heart Attack Don’t” as the example of what not to do.
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Thanks for this, Eva. How tragic that your insurance coverage kept you from seeking immediate help! When you say “surviving it actually contributed to my disbelief” you’re describing my own sense of denial, too. After all, how could this possibly be a heart attack if I’m walking, talking, driving, going to work? I hope that sharing our own examples of “Heart Attack Don’ts” (love that!) reminds others to do as we say, not what we did…
How about “scared and going” after the first event to find it’s nothing? I’ve been made to feel like a hypochondriac for hitting the ER with symptoms similar to my first heart attack.
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Good point, Elizabeth. Completely understandable that if we experience similar symptoms to what we knew turned out to be a heart attack in the past that we would seek emergency care. Is this something? Is it nothing? Should I call 911? is the common crazy-making mantra of heart attack survivors.
Carolyn, I’m not sure what to call it – with me there’s an over-arching element to all 6 of the patterns of behaviour – “Knowing and Disbelieving” – this happens to others, NOT ME.
Even more interesting for me is that once the Dx is known it becomes a chronic “Knowing and Fearing” that it WILL happen to me again.
P.S. Heart Sisters is an excellent example of #1 “Knowing & Going” – I always know your posts are excellent and so I immediately go to your blog . . .
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Thanks Judy-Judith for both your astute examples plus your kind words in your PS! Re “Knowing & Fearing”: I just remembered reading a study years ago that suggested even heart attack survivors – the ones you’d think are most likely to understand the importance of seeking immediate medical help -still engage in “treatment-seeking delay” when cardiac event #2 strikes – will see if I can find that one again.
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