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).
Patient Reassured – Dr. Jonathon Tomlinson’s original blog post on his site, A Better NHS